IVIG update 9/13

Connor went in on 9/2 to Children's Hospital to start his IVIG therapy. We got home late on Friday night 9/5. He handled everything pretty well. Connor had no major complications. He woke up during one treatment and freaked out. We aren't really sure what caused it. I think he was in pain of some kind because of the high pitch scream he was doing. They told us to watch for vomiting even though he did that right before we left there and they thought nothing of it. He has had a few more "freak outs" since we have been home but again I am really not sure what it means. He is completely out of control when it happens. He will only allow one of us to be near him or hold him at a time when he is going through this. I have some pretty major bruises from the last one we went through. He practically threw himself out of my arms. It was very scary to watch.

We met with a bunch of different dr's all over again while we were in there. We met with the metabolic team and the attending dr of the neuro floor. We were given a questionnaire to fill out because of Connor's developmental delays. They came back later to tell us that he failed the autism screening test on multiple levels. We now need to see a developmental pediatrician. I have been informed by our therapists that this will probably take about 1yr to get an appointment. The dr's also decided that if this does not work in about 1 months time we will start the process of getting him in for the muscle and skin biopsy. Connor also went through another overnight EEG. That lasted about 16hrs. Not the 48 hrs the other neuro dr wanted but at least it was better than just an office one. That came out fine. They didn't do the CAT scan for his liver because no one felt his liver this time. I would have felt better if they had done the CAT scan just to rule out a problem especially since there are 2 dr's on record that felt something. Connor also had a problem with his blood pressure while we were there. Actually he has had it happen quite a few times even before this hospital stay. His blood pressure went up to 154/90 at one point. It had been up and alarms going off many times and they would just come in and shut it off and say "he is really moving around in here, hu?" I would then tell them that he was sleeping and hadn't moved. They just blew that off too because IVIG lowers the blood pressure not raise it. I am going to be bringing that up to our pediatrician ASAP!

We were told that we could see results from the IVIG as early as 48hrs to 4 weeks. If after 4 weeks we don't see a change then they are going to call it quits with the IVIG. If we see results we can go through the process again in about 2 months. We have to go and see our pediatrician on Tues 9/16 for a follow up and to make sure he isn't having any of the other complications that we just can't see.

So far we haven't seen any thing to say that this is working. Physically, there has been no change. His choking has actually been a bit worse. Developmentally, Connor said his first word since this started that wasn't him just parroting!! He said "ball". His therapist has been working on this word since they started working with him. This week she held up the ball and he just said "ball". We are so excited. No one is taking this as a sign that the ivig worked yet because it is such a small step and we can't be sure if this is from the ivig or from the persistence of his developmental therapist. I still am holding out hope. We still have time. And I look forward to his physical therapy this week to see if we can see any improvement.

Connor's therapies through early intervention are coming up for a review already. I know that they are working on getting him a behavioral evaluation to see if behavioral therapy will help him, Physical therapy is looking for more time, developmental therapy wants more time with him and our social worker has told our case manager that speech therapy needs more time. In other words, Connor & I are going to be very busy!!!

Thank you for all the thoughts and prayers. I can't imagine how we would be handling all of this without the love and support we get from our family and friends (ones we know and the ones we just haven't met yet). I will post as soon as I can or sooner if there is anything new to tell you.

8/28 IVIG APPROVED

We got a call on Monday night from our pediatrician. They harassed the ins co and after days of phone calls and some great dr's persistence...our ins co approved the IVIG therapy!!!!!!

We had an appointment with our neuro dr on Tuesday and we weren't sure of any of the details yet. We went prepared in case they put us right in to the hospital. Well nothing ever works out as planned so we are still waiting for our admission date. It looks right now as if it is going to be on Tuesday next week 9/2.

No one is sure if this is going to work or not. It is something that they are just trying. As our dr put it, this is something that if we didn't try we would always wonder what if. If this doesn't work then the next step is the muscle and skin biopsy. Our neuro dr is trying to set it up so that he will come see him while we are in the hospital. Connor will also be getting a full body CAT scan to check the liver enlargement and to see if that gives them any clues. They also want us to see a developmental pediatrician. Our neuro dr made a statement like "I don't know if Connor has truly regressed or if he has just developmentally plateaued". If he was doing something at 12 & 13 months old and he is not doing it now then that is a regression!! She also asked if I thought he was autistic. I told her that I have asked questions about it but only because he has autistic traits not because I think he is and every dr we have asked has said no!! What ever is causing his ataxia, balance, choking and speech problems is also what is causing the developmental problems.

We may not know ahead of time what day exactly we are going into the hospital so I may not be able to post again until we get home. I will update this site as soon as I possibly can. Please keep praying for Connor. We are real scared going into this. He could have some bad reactions and side effects. I pray we are making the right choice and that it will help him. Thank you everyone for your prayers. They mean more to us then we can possibly tell you.

UPDATE 8/20

We had our appointment with the new Neurologist at St Christopher's children's hospital on Thursday. We didn't get any definite answers but I feel the trip was worth it. This dr doesn't feel that what Connor has is a straight forward case of cerebellitis. She told me that cerebellitis does not cause developmental regression or developmental delay. She also said Connor's liver was enlarged. She is not sure if it is enlarged within normal limits or not. It isn't a massive swelling but she could definitely feel it which you are not supposed to be able to do. Connor is going to need a CAT scan now to check that. Another sedation procedure. If his liver is enlarged then that would make her look at a whole new area of things that Connor could have like storage compartment diseases. I have looked that up and there are 50 different diseases and every one of them have different symptoms and different prognosis. It is going to take me awhile to get through them all. She also wants him to have a 48hr EEG to make sure that his zone out times and twitches are just that and not seizures. She is going to back our dr in trying the IVIG therapy. If that doesn't work then she feels we need to go ahead with the muscle and skin biopsies to look for mitochondrial diseases.

We go to our regular Neurologist on Tuesday the 26th to see where we go from here. She wants to do a EEG in her office which doesn't make any sense to me since the other dr recommended a 48hr EEG. We need to bring a letter from our physical therapist stating what she sees with his ataxia which is that he is more shaky and off balance than normal and things he was able to do even a week ago he is struggling with now. Our dr is going to use all this to try to convince the insurance co to pay for the IVIG.

We are also trying to bet a behavioral evaluation on Connor due to all the Autistic traits he is showing. Both our physical therapist and our developmental intervention teacher have recommended this in the hopes that we will be able to get a behavioral therapist in here to work with him too. We have also started Connor with a chiropractor. We haven't seen any results with that yet but he has only been working with him 1X/week for about a month now. We are just keeping our fingers crossed that something is going to start working. I will post again as soon after our appointment on Tuesday as possible.

7/0/08

There hasn't been alot going on with Connor. We have an appointment with a new neuro dr at St Christopher's in Phili on 8/14. Our dr's are hoping if this dr also agrees that we need to try the IVIG therapy then it will help in the fight with the insurance co to pay for it. He has been getting his therapies each week. We did have to make a call to his neuro dr to let her know that his ataxia has gotten worse. Things he was able to do in physical therapy even a week ago he is struggling with or can't do now. When he is in the tub we have to keep a hand behind him because he will fall over backwards. Our physical therapist is writing a letter to let the dr and insurance co know that he has gotten a little worse. I will keep everyone updated as things happen here.

UPDATE 7/2

Well here is the latest. Connor's IVIG is on hold. We were told CHOP was trying to get him in for this Tuesday 7/1. We have been on a holding pattern for the call to go in. I got a call today that our insurance co has denied it. Our neuro dr called and spoke to the medical director of the insurance co and they still denied it. So, the last chance to get Connor in is some last process the neuro dr can try but it takes a long time. It is going to be a few weeks at the earliest for all this to happen.

In the mean time they want us to make an appointment for a pediatric movement disorder place outside of CHOP to look at Connor and see if they can come up with anything. I will keep people updated as things happen.

6/27 Hospital stay cominig

Connor has started his therapies. I was so worried that we wouldn't get them started before he went back into CHOP. After every admission he has gone from a loving easy going little boy to one who is scared of everyone but his immediate family. I am hoping that having him get used to his therapists before the hospital stay he will not have such a hard time accepting them in his home after. I knew that if we waited to start this till after we got home things were going to be much harder. He seems to really love his therapists and has connected with them very quickly.

It looks like he is going in to CHOP on Tuesday 7/1/08 for his IVIG therapy. We were all hoping it would get started earlier but 6 days after Connor's spinal tap he woke up from a nap with a 103.8 fever and it only climbed to 104.2 in the pediatricians office. So, things are a little more behind than we hoped at this point because he had to be healthy before they could go ahead with the IVIG therapy. We still don't know if he is getting the 2 day or the 5 day infusion. From what I read the initial treatment should be 5 days and any booster treatments should be 2 day. But, who knows what they are planning. If we are in for 5 days then Connor, Joe & I will be in the hospital for the 4th of July. What a bummer!

In the beginning of all of this I had people mention having fund raisers to help us with all of this. I wasn't ready to say go ahead yet. I don't know if it was because I kept hoping that everything would end at any time and Connor would be all better. Reality and the bills have set in! Now that schools out (Julia's teacher offered to do some fund raisers) I have decided that we have to do something. I just don't know how to do this, when I can possibly find the time to do this. Is it OK for a person to throw a fund raiser for themselves? That's something to think about. Anyone with any ideas on how to do this or what to do please, please place a comment. I really need help here.

Keep Connor in your prayers while he goes through this. Pray he doesn't have any major side effects like anaphylactic shock or meningitis. And let's not forget to pray that this will work!! Please God something has to give here. Let this work!!!

UPDATE 6/17

Connor had his MRI & spinal tap on 6/11. Nothing has changed. They still see the foci's on the MRI. They haven't gotten worse but they haven't gotten any better either. The results that are back from his spinal tap have not given them any clues.

His neurologist called me yesterday and she wants to put Connor into the hospital again and start IVIG therapy. No one is sure if this will help or not but she wants to do something. She has decided to go with the IVIG therapy over the steroids because his spinal fluid didn't show any protein or white blood cell clusters to point her in that direction. She told me that there are some known risks. They are anaphylactic shock (it is a blood product), meningitis, encephalitis & headaches. She told us to research it on our own, talk it over and let her know our decision. If we decide to go ahead with it she will get things set up for Connor to go into the hospital.

We looked it up last night. From what we read the chance of Connor having any of these side effects are much less because of his age. I think that he has a much higher chance of having a complication from the steroids than he does with this. The only thing we are worried about is that the FDA has only approved this for 6 different conditions and from what I read Connor's isn't it. Which means that insurance may not cover it. IVIG is being used for a bunch of different conditions with some very promising results. It has been used for MS, fibromyalgia, chronic fatigue and a whole bunch of other things but FDA only approved it for a whopping 6 conditions. The cost is VERY expensive. For children it is around $3,000/infusion. For adults it is about $10,000/infusion. We are not sure yet if his dr is going to put him on a 2 day or 5 day infusion. If insurance does not cover this there is no way we can go ahead with it. I am still trying to work all that out and figure out what we are going to do. I was thinking of letting them go ahead with it and paying $5/month. The only thing to do is just wait and see what happens but I did call her to tell her we want to try it. There are risks but the risks of not doing anything and letting Connor go on this way and not have a chance at a normal life is a risk I don't want to take.

6/3 MRI & Spinal Tap

Connor is going into CHOP for another MRI & spinal tap on Wednesday 6/11. At this point it is a same day type thing but to be safe we are packing just in case they end up admitting him. I know that the metabolic team wanted specific tests done with the MRI & the spinal so our dr is getting in touch with them so that they can make sure all of that is done at the same time. We have to leave here around 7am. He needs to be there by 9am with the procedure to start at 10:30 am. They are figuring that he will be there at least 4 hours from the time we get to the sedation unit till we get to leave but that was said before they realized that he was also having a spinal tap at the same time. So, who knows how long we will be there.

Our pediatrician is trying to get in touch with the ataxia dr because she wants to understand what he thinks is going on and why he is doing the surgery for the biopsies (still don't have a date for that one yet). We are getting the hearing test set up at someplace around here. Thank God there is one thing we can do without driving 2hrs to Philly. Tuesday the 10th Connor gets his helmet too. What a fun and exciting week this is gonna turn out to be!!

Please keep Connor in your prayers. Pray that the dr's will finally see something and figure out once and for all what is going on with him so we can start the right treatment instead of just watching him fall farther and farther behind.

5/30

There has been alot of things going on this week. First Connor's neuro dr called and wanted to know how he was doing. I told her the same. She said we have to start thinking about iv steroid treatment. She said that if he was getting worse then the decision to go ahead with it would be easy. But he's not getting worse he is staying the same. The steroid treatments are not without risks. The risks on worse case scenario could be death. They are in the process now of setting up another MRI & spinal tap. We will get the results of that and then make a decision. If it is cerebellitis he is not getting better on his own. My only problem with this is that no one can tell me for sure that this is what he has. We have 3 dr's thinking he has 3 different things.

Connor's blood work is finally back. That only took 7 weeks. That Dr said that it didn't show any of the things that they were looking for. I am not quite sure what that means since he didn't say that all the tests came back negative. Just that it doesn't show what he was looking for. So, he wants to do the biopsies. I said yes. Because, if Connor has mitochondrial disease then we don't want him to have the steroids. This will be surgery and it will be under general anesthesia. They will be taking muscle and skin biopsies from a few different spots. This dr feels that the odds of something coming back positive from this is somewhere between 30-40%. The dr is trying to set things up for this now and will let me know when.

We got the report from the feed/swallow team. That one said Connor is being treated for paroxysmal leukodystrophy. Of course this diagnosis was new to me and I freaked out. Where did this one come from and why don't I know about it? I called the neuro dr right away and went to look it up while waiting for her to return my call. The Internet says that it is a myelin disorder where genetically he is either missing an enzyme to produce or metabolize myelin. The symptoms certainly sounded like Connor's. Our neuro dr doesn't know where this came from either. She had me call the feed team to see where they got this. Because like she said if someone diagnosed him with this she needs to know about it. So far no one has gotten in touch with me from there. Our neuro dr even e-mailed the director of the team and we still haven't heard anything. The ataxia dr said that he thinks they gave him that diagnosis in the strictest sense of the word (what ever that means) and he wouldn't say that Connor has this. At least right now.

We also had our meeting with early intervention this week. Connor is going to be getting Developmental intervention 2X/week, Physical therapy 1X/week, Speech therapist 1X/month (to follow things since the developmental intervention will work on this also) & Social worker 2X/month for now until things stabilize with him. They are calling it family support. I think they feel mommy is starting to come unglued. (they wouldn't be too far off the mark with that). Hopefully at least some of these services will begin to start in 2 weeks but no longer than a month. Connor also gets his helmet on 6/10. Our " GREAT" insurance won't cover this "type of device". They also suggested we get his hearing checked just to make sure that he is hearing all tones. There are times we have worried about his hearing because when you call him and try to get his attention he doesn't respond to you. He does hear music and loud noises. We just want to make sure that there isn't a problem there that is complicating things. I have a call in to his pediatrician about getting that done too.

On top of all of this Connor's left eye has started to cross at times and it seems a bit droopy. I did mention this to the ataxia dr and he said that it could mean that things could be getting worse. Now the rush is to find out what he has before things get worse and there is no coming back from it.

Update 5/14

I didn't realize how long it has been since I posted here. Sorry for that. It has been crazy. Connor had been sick with a real bad cold for over a week that required trips to the dr with a very cranky child. There isn't a whole lot new. We still don't have the results of the blood tests for the mitochondrial disease. I called the dr today because it has been over 5 weeks now. They have not called me back. Everything seems to be at a stand still.

We did have the evaluation with the early intervention team. Connor qualifies. I knew he was behind developmentally. You would have to be blind to not see that but I didn't realize how far behind. Once they gave me the numbers I cried. Here is how he tested (remember he is 19 months old when you see these numbers) :

Cognitive ( learning, play skills, problem solving) 6 - 13 months
Gross Motor (crawling, walking, moving) 12 months
Fine Motor (eye/hand coordination) 10 months
Communication (talking & understanding language) 3m responsive, 11m expressive
Social/Emotional (interactions with others & toys) 5-8 months
Self Help/ Adaptive (feeding, dressing, toileting) 8 months

As you can see he has had significant regression. We are scheduled for a eval meeting for 5/23 where we will set up a plan and start the therapy. The sooner the better as far as I am concerned. I feel it should have been started months ago. They also want him to wear a helmet for protection whenever he is on the floor walking. We are scheduled for a fitting on 5/20 for that. I have gotten some attitudes about that already from some people. How could I do that to my son? It is wrong of me to do this. I feel that whatever will keep him safe is the right thing to do so we are going ahead with it. He gets hurt enough now. We don't need him damaging his head and making things 100 times worse. Today he fell in his bed and cut his mouth open. He falls all the time and we are fighting to keep him safe till they figure things out.

Hopefully we will have some news on the blood tests soon. I plan on harassing them until they call me back. They will be getting phone calls from me on a daily basis until they get so sick of me that they will finally return my calls. I will post again as soon as something new develops.

4/24 Update

Over the last 2 weeks or so things have been hectic. This is the first time I have had a chance to post. Last week we had 2 appointments. One was in Princeton at the neurologists office. We didn't seem to get anywhere with that one. If fact we left there feeling like we accomplished nothing. Our neuro dr seems to want to believe that this could still be a post viral cerebellitis. Even though it is way past time for this to have cleared up or at least started to. Granted, I would much prefer to believe that he has cerebellitis because it is much better than the mitochondrial disease theory. So, at this point she has decided to just wait. She knows that the metabolic team wants a spinal tap for some tests but she won't do it until they call her personally. She doesn't want it to be on her. They have to order it. She told us to make an appointment in July and she will see us then. I am supposed to keep a log of his staring spells in case he is having petite Mal seizures and call her. That's it. I asked her what she thought of the ataxia dr's idea of mitochondrial disease and she just answered "I don't know".

On Friday last week we had to go to CHOP for the speech/swallow eval. Another waste of time in my mind. They were giving us ideas on how to switch him to more adult food (not a concern of mine at all) and that it wasn't too dangerous for him to eat at this point. Of course he didn't choke for them at all so they never got to see what happens on a weekly basis. I was informed that they think it has to do with what ever is wrong with him (really! who would have guessed?!). Then they brought in a psychologist to tell us that she doesn't think he is faking the choking to get out of eating (where the hell did I ever say that? We could have told them that and not cost the ins co over $200!)

Tuesday we went for our follow up at the pediatrician's office. That was just to catch her up and make sure he is at least not getting worse. She wants us to get some blood work next time we go to CHOP. The metabolic team faxed her the script of stuff they want done. We were supposed to get it done when we went to the ataxia clinic but they maxed out the amount of blood that they could take from him in one day. We don't have to see her again now for 1 month unless he gets worse or we need her. I have to call her as soon as I get the results from the ataxia dr.

I started the process of getting therapy for Connor in the house. The dr's want him to get physical, occupational & speech. Now I am just waiting for them to come out to the house to evaluate him. To qualify for this program he needs to be 35% deficient in one area or 25% deficient in 2 or more areas. Our dr's don't seem to think we will have any problem qualifying for this. Financially we qualify for free services Thank God we won't have to pay a per hour co pay. So, now we wait. After the eval they will come back and tell us if he qualifies and then set up goals with us and from there get the therapists out here. If he doesn't qualify then they will direct us where to go to get him the help he needs. Most likely if he doesn't qualify then he won't get the therapy at home and it won't be free. I don't see how he can't meet there idea of qualifying. Not with how behind he is now.

We are waiting for the mitochondrial results now and everything seems to be on hold with that. As soon as I hear anything I will post to fill everyone else in. Keep the prayers coming for Connor please.

EMG & Ataxia clinic 4/8

Tuesday was a real rough day. It has taken me this long to get myself together enough to write this. Connor got his EMG @ 9. That was hard on him and hard on us to watch him go through it. That test came out negative. We went straight to the ataxia clinic just like I was told to do. No one ever called me back when I tried straightening out the 3:15 appointment. I decided that I was going to go ahead just like I never knew about the 3:15 time. Let them try to blow me off to my face. Joe was a little concerned that I was going to end up arrested if they tried making us wait for our appointment but I was determined that they were going to see him and he was not going to wait 6 hrs or so between appointments.

We got to the ataxia clinic around 10 and around 10:30 we were called up and told that the dr was going to try to get there before 12 so why don't we go get something to eat. That was fine with us. We were hungry and thirsty by that time. We got back just before 12 and we were seen by 12:15. I really like this dr. There was just something about him that made me feel like we were going to get somewhere with him. He thinks he knows what Connor has. He isn't sure but he thinks he has something called a Mitochondrial disease. There are 40 different kinds and we aren't sure what kind he has if this is it. There is no cure and no good treatment for this. The progression of this disease is anywhere from mild to fatal depending on which of the 40 he would have. There is a test for this but it has alot of false negatives. Even if he has this disease the test only picks it up about 30% of the time. It takes up to 5 weeks to get the results back.

We went and had the blood test done as soon as we were done at the clinic and all we can do now is wait. If this test comes back negative then the next step is a muscle biopsy. I am waiting to hear from this dr about a clotting disorder that could run in our family to see if he thinks it could have anything to do with what is going on with Connor and if we need to pursue it. He doesn't think so off the top of his head but like he said outside of the mitochondrial diseases this is the only other clue he has.

At this point we don't even know what to think or what to hope for. The dr really did floor us with this news. He seems to really think that this is what is going on with him though. After looking it up myself I have to say that it does seem to answer most of the problems that Connor has had that all the other ideas didn't. It seems the most plausible than any of the other things he has been tested for. Please keep him in your prayers. He really needs them.

4/4/08 CHOP appointment

Yesterday we had a 1:30 appointment with the ophthalmologist. They were to check for a condition that I couldn't find out much about. It looked like it was some type of cancer but I am not sure. Connor does NOT have it. Thank God! The dr there said before he dilated his eyes that they didn't think it was what Connor had because as long as he has had all his symptoms then he would be blind by now if that was what it was. His eyes are fine with no clues as to what is going on with him.

It was a very long day. Between traffic and construction, we left the house by 11:30am and did not get home until after 6:15pm. This has to end soon because we are all feeling mighty frayed around the edges. Poor Connor sitting in a car seat for hours on end with only doctors and tests in between has had enough and so have the rest of us.

We are supposed to be going back on Tuesday 4/8. He has to go to Pennsylvania University Hospital for an EMG and then right over to CHOP to see the Ataxia dr. The EMG appointment was supposed to be at 10:30 but the ataxia team wanted to see him that day and they were trying to squeeze him in before the clinic started. They told me to go ahead with the EMG and hopefully they would still be able to still see him. But, they couldn't promise. It all depended on the timing. So, I moved Connor's EMG appointment up to 9:00 so that we could make sure that the ataxia team would get to see him. We got home last night to a recorded message that his ataxia appointment was at 3:15. I was mad. I moved an appointment up and we are having trouble getting Julia off to school because of it and now we don't have an appointment till 3:15?? What am I supposed to do with Connor for the 5hrs or so between appointments? I called them this morning to try and straighten it out and the receptionist didn't know anymore than that the appointment is in the book for 3:15. She took a message and I am waiting for the nurse to call me back about it. Then the EMG place calls me up to tell me I need 2 referrals for this appointment (I don't & we got that fixed) but then she tells me that I have an appointment for 8:30am!! There is no way we can make that. As it is we were going to have a hard time getting there for the 9am appointment. They are trying to see if anyone will switch appoint times with us. I am waiting for a call back about that.

So, for now Tuesday is up in the air. We know nothing new except more things that Connor doesn't have. The speech/ swallow eval is not until 4/19 and the metabolic team isn't getting us in until 6/24. Connor is still the same no improvement and not getting any worse. He is exactly the same including developmentally. He has not gained any ground in that department at all. I am still trying to get all the therapies set up for him but the way our appointments are spaced that has not been easy.

I will keep everyone posted as things progress.

3/19 update

Yesterday we had an appointment with Connor's pediatrician and she was upset to see that he hasn't gotten any better. She is also very concerned with the fact that he hasn't regained any words and that he seems to be choking and throwing up alot. She told us that she was going to call our neuro dr today and the metabolic team and then get back to us. As of now Connor will not be receiving any more vaccinations until we get a handle on what is going on. She doesn't want to complicate things or make them worse.

This morning she called me before 10am. She still had a call out to the metabolic team but she did speak to our neuro dr. Seems that they have decided that there might be something more than cerebelitis going on. Connor has had the ataxia (what they call the kind of walking he is doing) for long enough that it is now being considered chronic. He has had it too long now for it to be considered acute. That seems to have changed things in their minds. Our pediatrician is getting another speech/swallowing eval. They want to find out what is going on that he has reverted to almost infantile type swallowing problems. He spits up alot, vomits & chokes. All things infants do. He never really did it before this all started. I am waiting to hear about that and when it has been set for. But, once again a trip to CHOP. Our neuro dr also told her about an ataxia clinic in CHOP. They only deal with obscure and rare causes of ataxia. Our neuro dr wants Connor to be evaluated by them. My question was "why is this the first time we are hearing about this team? and why haven't they been brought in sooner?"

I no sooner got off the phone with the pediatrician when I got a call from the neuro dr's office. They set us up with an appointment for April 15th. At first I was upset that it was so going to take so long. That was until I talked to the DR who they put on the phone next. She explained to me that they were trying to get Connor into the ataxia clinic but that appointment won't be for at least 4-6 weeks. Then she told me about all she wants done in the meantime before our appointment with her. We need to get an ophthalmology appoint to check for some thing I won't even try to spell here. I can't find much on it but from what I did find it looks like a type of cancer. Then we need an appointment with the metabolic team. They told me they didn't believe this was metabolic and never mentioned another appointment but their report to our neuro dr says different. Then we need another blood test to test for amino acids. Connors levels were high but they aren't sure if he had eaten before the test or not (I don't think he did but they want to be sure). They won't tell me what it will mean if this is high and I haven't had a chance to look that one up yet. Then he needs to get an EMG. I don't remember what that stands for but they are looking to see it the electrical current from the nerves are getting through to the muscles right. Plus, we still have the speech/swallow eval.

I asked the nurse if there was anyway to put Connor in the hospital so we can get this all done in a day or 2 because on a good day it is at least 3hrs round trip. She told me that our insurance won't cover it. So, we have alot of traveling, missed days of work for Joe and stress coming up. I am trying to get the appointments together or at least get 1 or 2 on the same day but so far that hasn't been working too well. I will keep everyone updated as we progress through this nightmare. We will deal with the stress & financial mess if only we can find out what is wrong with Connor and how to fix it. It is going through all of this and still not knowing that is really killing us.

SCAN RESULTS

Some good news for a change. The results of the scan came back negative!!!! Now that is a mixed blessing. Thank God that he doesn't have cancer. But at the same time we still don't know what he does have. I am getting very frustrated. I don't even know where to go with this now. I am waiting for the Dr's office to call me back about what we do now. I called them this afternoon and asked if they had heard anything. The receptionist said she saw something come through with Connor's name on it but she wasn't sure what it was. I waited for over an hour for someone to call me back. Our Neuro's nurse called back to tell me the great news and said that there are no plans as to what to do right now. Our Dr just got the metabolic teams report and was reading that to see if there is something that they suggest that hasn't been tested for yet. So, we wait. AGAIN!!

We go to see our pediatrician tomorrow and I am hoping she will agree with us that enough is enough and it is time to try the steroid treatment or the IVIG therapy. If she does she will call the neuro Dr and hopefully get things moving. The Dr's listen to other Dr's alot better than a parent.

We thank you for all the prayers Connor has received lately from the bottom of our hearts. Those of you sending the prayers and well wishes to us we are going to print them up in a book so that we can show Connor one day how many people pulled together to pray and care about him. I will post as soon as I have anymore news or info. We love you all!!

Connor's scan 3/14

On Thursday we were supposed to head to CHOP by 10:30 at the latest to get there for his 12:00 shot. The night before I had something just pop into my head. Gee I wonder if anyone got this preauthorized? He was supposed to get this scan and it was set up by the hospital a few weeks ago. But, the way things were going I wasn't taking any chances. I called our ins co first thing in the morning. That turned into a nightmare of hours of phone calls Joe and I were both making and up till the time we left we still didn't know if we were going to get this done. Actually we didn't find out for sure it was going to happen until we were over a half hour into our drive. No one bothered to get the scan authorized. I don't blame my dr for this because she doesn't usually order this test. The original one should have had the authorization but there was nothing on file. That started this experience on a great note.



We got to the hospital to find out that the "shot" he needed was actually a iv that they were going to put it in to give the medicine, take it out when done & then put it in again the next morning. I convinced them to let him go home with the iv and I would flush it. The worst that could happen is that he would pull it out or it would become dislodged and we would have to do it again on Friday morning anyway. Connor has very deep veins and he is not an easy baby to get an iv on to begin with so they were more than willing to give it a try. They gave me all the stuff to flush it and thank God it stayed in place and they were able to use it.



Shot went fine. They have to give it slow because if given too fast can make him sick. The next morning was a nightmare. Between traffic and construction it took us over 2hrs to get there. We were already late then we couldn't find a place to park. I was so afraid they were going to tell us that they couldn't do it. I was practicing in my head the argument I was going to have with them. There was no way that they were not going to do this test!!!! Scan was supposed to start at 11:00 but didn't get started till just after 12. He did fine and woke up easily. Now we wait. I plan on calling his neuro dr on Monday. They have to know something by then. I hope. I will keep everyone posted as things unfold.

3/11 Heard from the Dr's

I made calls to all the dr's again on Monday and guess what. I HEARD BACK!! I finally got somewhere. I didn't speak to Connor's neurologist but I did hear from her office that she wants us to go ahead with the MIGB scan and she will see us after she gets the results. Connor's pediatrician did not get the first message I left her. By her reaction I really believe this. I don't think she was just saying this to cover her butt. She immediately called his neuro dr and called me back. We are to see her on Tuesday next week so she can examine him and keep on top of everything.

Connor's scan is scheduled for Friday the 14th. We have to go to CHOP on Thursday for the shot of radioactive stuff and then Friday morning he goes for the scan with sedation. They say God works in mysterious ways and that everything happens for a reason. I can now say thank God Connor got sick and was not able to have the scan a few weeks ago. When I rescheduled his scan I was told he will need to start the drops a day before he gets the shot. I then asked them "what drops?" Come to find out Connor needs to take drops the day before the shot and for 5 days after. It is potassium iodine drops. The same stuff that anyone living near a nuclear plant has heard about since 9/11. It protects the thyroid from radio active exposure. The shot he has to get could either kill off his thyroid or give him thyroid cancer. No one even mentioned this before. Connor's neuro dr is not the one who ordered the test. In fact this test is usually ordered by oncology. She ordered it for me this time but the main "roving neuro dr" at chop ordered it. He never even mentioned these drops when they discharged Connor and he would have had to start them the day after we were discharged!! Everything happens for a reason. I thank God we didn't get to do the first scan.

I don't know what the metabolic studies have shown. When I asked the neuro dr's nurse she said she didn't see anything in Connor's chart. She would look into it and get back to me. Our pediatrician called them within 5-10 min of my speaking to them and they told her that they all came back normal. So, that is something else I need to check into. I was told that the MRI of his brain and spine was unchanged and normal but they told me the last MRI was normal and when I got the report it wasn't. I am still waiting for that to come in so I can see it for myself.

If this test comes back negative I am going to put on a major push for either the steroid treatment of the IVIG therapy. We can't keep waiting for this to clear up on it's own because it's not. I haven't had a chance to get the therapies set up in the house for him yet either. We were so busy trying to take care of him when he was sick and of course I have whatever is going on with everyone else in the house on top of taking care of Connor and trying to keep him safe. I will make that call as soon as I get this scan done and get the results. We should have at least a preliminary report back early next week. I will post after his scan and let everyone know how he is doing. Please continue to keep Connor in your prayers. As far as I am concerned this is the scariest test yet (not the scan itself but what it could mean) and I am going to be a wreck till we have these results.

Quick Update 3/9

Just a quick note to let everyone know that things are pretty much the same on this end. Connor has gotten over the RSV & stomach virus that was making him so sick. Neurologically he is the same. He is still walking like he is just learning or drunk and other times he can't even stand up without falling backwards. He is still not talking and has started to try to get us to understand him by pointing and grunting. If he wants a toy opened or something he will take our hands and put it on the toy. He loves to play with the wipes box but if it is closed he will take my hand and put it on top of the box and grunt. If I move my hand he will just keep putting it back on until I get it and open the box.

So far we have not heard from any of his doctors. They released us on that Sunday and I put out calls to everyone on Monday because he was too sick to have the scan. They would not sedate him. I called and let his neuro dr know and asked her to call me back and to date I have not had a return phone call. I am making calls tomorrow again and if I don't hear from anyone again I am not sure what I am going to do. I will have to do something and assume we have been abandoned and try to find someone else to take his case. Right now we have been on our own since 2/21 when they discharged us from the hospital. He has not been examined by anyone for any of the neuro problems. He has seen a pediatrician when he was sick and in the er but that is it. We have no plan of action and no idea what we are supposed to do.

Please keep Connor in your prayers. He really needs them.

2-29 Another ER Trip

Last night we added another ER trip under our belt. Connor had not been eating at all and I think I got 1 bottle down him all day. I went against the dr's and gave him a few drops of Children's Imodium. I have been told that it is not good for him. But, neither is having 10-12 bouts of diarrhea a day either. Having his butt open and bleeding because of the diarrhea is not good for him. Since no one wanted to address either one of these problems I did it myself. Right or wrong it did help. He only had 2 bad diapers yesterday. But, he didn't have any wet ones either. On top of that he was so congested that he was choking on it. Around 6:00 last night he started to choke and couldn't stop. He wasn't breathing for a few seconds and then he started to throw up. I had enough!!! I couldn't watch him go through this anymore and just wait things out like we keep being told to do with everything. I called his pediatrician and got the one we saw on Monday and we decided that the best thing to do and to be safe we needed to take him to Jersey Shore ER. He called ahead and gave them his history, not just the RSV and sickness but everything neurological too.

After waiting 2 hours in the waiting room we were triaged. They put the pulse ox on his toe to measure the oxygen in his blood and all the alarms started to go off. His level was reading 88. Not good!!! But, she wouldn't except that. She reset the alarms and sat there with it on his foot watching it fluctuate between 88 to 94 for over 5 min. At one point it jumped to 96 for a sec and she wrote that one down. I know he is having problems breathing but I knew then we weren't going to get the right help here. They didn't weigh him even though there was a scale right there. He has had diarrhea for a week, vomiting and not eating. You think they would look to see if he has dropped weight. But they didn't. We finally got called back to the ped room around 9pm. They listened to his lungs and said they could hear the RSV. No x-rays to check for pneumonia even though he gets this easily. They decided to give him an IV, start some fluid, gets some labs and see what happens.

Joe had to take Julia (we had her with us since Brandon wasn't home) out to the van so she could get some sleep. We have been informed by the school that she can't miss anymore days. Not that I want to keep her home but when I have one child in the hospital what am I supposed to do with her? I am left in the hospital with Connor and Joe was in the van with Julia. Not fun and not easy. I couldn't even go to the bathroom because they didn't have a crib for him they only had a bed so he sat in my lap in the wheel chair the whole time and Joe was outside freezing in the van trying to keep Julia warm.

I have alot of complaints about CHOP but let me say that it never has taken them 4 tries to get an IV on him. It was horrible. By the time they finally got the IV started Connor had no fight left in him. He just laid there and cried. My heart broke. That was the last attempt they had because if they didn't get it this time I wasn't letting them try again. They drew some blood and got some fluid going. Once they got some fluid in him he was like a different kid. When he kissed me he actually left a damp spot on my hand. He was more playful and just seemed more alert.

The dr came back and said that his lab work came back OK and he wasn't dehydrated (I don't buy it. Just with the difference in his behavior). No talk of his breathing, no talk of the congestion, didn't even look at the diaper rash. Just if he drinks a bottle of pedialyte or eats an ice pop and it stays down. He can go home. Well, he wouldn't touch the bottle and played with the ice pop but they decided that it was OK and he could go home anyway. Dr tells me that he can't have juice or milk and until we stop it he will have the diarrhea. I tell him that he won't drink anything but milk. The dr then tells me that if I don't give him anything for 8-10 hrs he will drink the pedialyte!!!!!!!!!! I am NOT doing that. This poor baby has been through enough. I am not going to starve him and take away his source of comfort right now. He doesn't take a pacifier, he doesn't have a special blanket or stuffed animal that would count as a comforter for him. I am not taking this away.

As of now. He ate a couple Cheerios. He seems very tired but then again I would be too (I am). Nothing has been fixed and I don't feel we are any better now than we were before he went to the ER.

From Hospital to now 2-27

We got home from the hospital about 6pm. We were tired, angry and confused. Connor was still getting sicker. I have not been able to get him to eat anything in a few days now and he is drinking very little but the diarrhea just keeps coming. Every diaper change now. I am not changing him because he is wet but because of the diarrhea. I don't remember the last real wet diaper he had. His breathing is getting worse. We can hear him wheezing across the room now. We got him settled down in his bed and tried to get everything put away and repack the things that need to be repacked "just in case".

Connor would not go to sleep. He was crankier than I ever remember him being. He did not go down to sleep until after 1am. He was up an hour or so later. His butt is raw from all the diarrhea and his wheezing and coughing is scaring me. All I can think of is that we brought him home from one hospital to have to take him back to another. By 5 am he had a fever of 102.4 and he was throwing up. There was nothing in his stomach really so the poor baby just sat there dry heaving. I did get him settled down and he fell back to sleep once I got the fever to go down a bit. I sent Joe to work figuring I could handle this. My plan was to play it by ear and see if we are going to our pediatrician's office tonight or much sooner depending on how he is doing.

I happened to think of something in the middle of the night while sitting with Connor. This test on Wednesday is a scan. The only way they can scan kids his age is to sedate them. No one has mentioned this though but I know from experience with the sedation until in the past and being an RN that they will NOT sedate a sick child. THE SCAN CAN'T HAPPEN! They knew that when they discharged us but went ahead and set it up anyway. We would have made that trip to the hospital twice and he would have had a shot all to have things called off at the last minute when we showed up to be sedated. I called the hospital to make sure and I told them first no one told me he was going to have to be sedated for this test and the only way I knew was because of past experience with his scans and that they made this appointment and discharged him knowing he wouldn't be able to get the test!!

I decided to make a bunch of phone calls while I had a few minutes and Connor was sleeping. I called the radiology dept and told them what was going on and we cancelled the appointment. We both decided that instead of rescheduling the appointment now we would wait till it looked like he was starting to get over everything and then reschedule because we have no idea how long he is going to be like this. Then I called Connor's neurologist, not the roving ones from the hospital but the one he sees in the office and has sent us to CHOP. She was seeing patients. I left a message for her that Connor was very sick. That we almost ended up taking him into the ER last night (I didn't mention that we were seriously considering this for awhile) and that the MIBG scan was cancelled because they couldn't sedate him. I also put in the message that the dr's at the hospital discharged him knowing how sick he was and made the appointment knowing he wouldn't be able to have the scan. Then I called our pediatrician. She has been great and behind us from day 1. This isn't the dr's that we get when we take him in for a sick visit this is his regular dr who knows us and knows Connor. She has been on vacation and I knew this but I was hoping she would check her messages. The office told me she won't be checking them. I decided to leave a message anyway. So, I let her know briefly what has gone on. I know I will here from her Monday morning. While on the phone with the office I made a sick appointment for Connor for the evening.

By 12pm I had to call the pediatrician and get an earlier appointment. His diarrhea was still real bad and his diaper rash looks like an open sore. His breathing is bad. I couldn't wait until 5 at night. Joe came home and we took him right in. At this point things have not turned to pneumonia yet. The Dr gave us great advice for the diaper rash and told us some things to try to keep him hydrated. He told us that he thinks this is all just a virus (which we already suspected). One of the things he suggested to give Connor was sherbert. It would hydrate him and give him the calories he isn't getting anywhere else. Well, it was a great idea but Connor wouldn't touch it. So far all we have been able to get him to eat is banana's. Not the baby banana's which are fortified with vitamins and stuff but the real banana's.

As of today, we have not heard from Connor's neurologist. You would think I would have heard from her for no other reason than he didn't get the test done. I am real angry about this. He is her patient and she will not return my messages? I am starting to look for a different neurologist and hospital to take him to. Maybe they will get to the bottom of things. Some one has to!!

He is still sick and from the sound of Connor's breathing, the diarrhea, the diaper rash and everything else we are going to be going back to the doctor in the next day or 2. This has all made his walking worse. He won't even try walking right now. He will sit in my lap, sit in his bed or stand up there. He will also sit in his activity center but that is it. I need to weigh him and see if he has lost any weight since he was weighed in the hospital. If he has lost weight then I have a feeling he is going to end up back in the hospital sooner rather than later.

I will try to keep this post updated as much as possible. If there are any new developments I will post it as soon as I can get to it. If nothing else I will try to post at a minimum of once a week and more if the situation calls for it. Keep the prayers going please. And, if anyone has any ideas, suggestions, hospital suggestions. dr suggestions ANYTHING please post it in the comments. We need all the help we can get.

Our Fight

On Saturday we were waiting for therapy to come and get started and for the doctors to come in and tell us what they were going to do that day. The roving neuro dr's came around and decided that Connor did not need to stay at the hospital. We could come back for the scan. Even though it is a 3-4 hour round trip depending on traffic and we would have to come back 2x for this test. Even though Connor was sicker, they decided that to keep him in the hospital with other sick kids wouldn't be good. We were still waiting for the final consult and tests that needed to be run from the metabolic team. We were still waiting for occupational and physical therapy to even evaluate him let alone start therapy. We hadn't seen the social worker to even start setting up his therapies at home. I was livid. I talked till I was blue in the face and the dr just kept talking over me and telling me that this wasn't the place for Connor.

Now don't get me wrong. I wanted to bring Connor home just like any other mother but he was not any better neurologically, we didn't even have a diagnosis yet. He was getting sicker and that kept getting ignored. I was so upset. I talked to the nurse as soon as I could calm down and told her what I thought and that the last time we were here we let the dr's talk us out of staying and here we are a month later back in and worse than when we started. No one would talk to me about the treatments that were brought up to us last time we were in. They weren't ready to try them last time but I was more than ready this time. I hadn't even been able to get anyone to give me the results of his last MRI which I know they had from the day it was done. The nurse went out and when she came back she asked if the dr had been in to talk to us. We said no. She then told us that if we were not comfortable going home then we can stay. They were not going to kick us out. We were staying until at least Wednesday now. I had time to regroup and try to figure out what these doctors were trying to do because nothing made sense anymore.

On Sunday Joe was planning on going home and getting a few things and see our daughter for a little while. I saw one of Connor's dr's and we talked about the treatments and she was going to talk to the higher dr about it on rounds. I also found out that the MRI hadn't changed any. We talked about us going home after the scan and I told her I understood that they couldn't keep us there while waiting weeks for all the tests to come back but at least we would get some of the therapy started, get the social worker involved to set things up and not have to drag a sick baby 3 hrs (I am being hopeful) round trip 2x in 3 days plus the trip home. I went downstairs for a few minutes before Joe left and I get a call on my cell phone. It was Joe and he tells me that the roving neuros are in Connor's room and the head one got nasty and wanted to know why we were still there. We were supposed to leave yesterday. Joe told them that I was afraid that if Connor left we are going to go another month with nothing getting done and that he is sicker and we are going to need to come back on Tuesday for a shot and Wednesday for the scan anyway. The dr says "I don't understand what you are saying" I was shaking all the way up to the floor. Perfect example of too many dr's not knowing what anyone is doing and getting so important (I guess is the word) that they don't think about the patient. We are black and white cases not real people with real lives and real hardships.

I tried I honestly did but I could not get this guy to care. I would have said understand but I am pretty sure he understood what he wanted to and just didn't care about the rest. I told him I took him home a month ago and here we are again getting kicked out with Connor worse. This guy has the nerve to tell me that I very clearly told him that Connor was no worse than when he was here a month ago. I have never, never said that. I have been yelling to anyone who will listen that he is getting worse with more symptoms coming on and we need help. I got loud (I didn't yell but looking back now I should have) and told him that I said his WALKING was no worse but everything else is getting worse. For God sakes the only way his walking can get worse at this point is for him to not walk at all!!!!! I fought the tears I really did. I told them that I will take my son him because I can't keep fighting with them and getting no where. He says It's not about fighting we all want whats best for Connor. (somehow I don't think his need for that comes close to my need for it). Then he tells us that instead of weeks we are looking at months before we will see some improvement. I am not waiting months to see if he gets better on his own from something they "think he may have".

They won't do the treatments until all the tests are back. Even though they say they don't think any of them are going to come up positive and they all think it is cerebelitis and talked about treatment the last time but just wanted to give him a little more time. Now they are talking weeks before we can even talk about it. This all happened at 10am. We did not get the final discharge to go home until after 4. By now I have managed to get only 2 bottles down Connor since the night before and he is wheezing and very cranky.(I don't know if I mentioned earlier or not that Connor will not drink out of a sippy anymore and will only take a bottle of milk to drink). Then the dr's asked us if it was a problem with money for the trips and maybe the social worker would be able to help us. I tried to explain that it is not an issue of the money (it doesn't help with all these trips but that was the least of my concerns at this point) but that I had 2 chronic pain conditions among other things and the driving and any stress makes me worse and Connor is sick and you have us driving back and forth like it is around the block. Then they tell us we need to make an appointment with an ophthalmologist at CHOP and get a consult done that week along with seeing our pediatrician within a week!!! What is better for Connor leaving him where he is already and getting it all taken care of or sending him on a 3 hour round trip ride 3 times in one week and throw in a trip to his pediatrician?

Hospital stay round 2

Our hospital stay was one of frustration to say the least. I know that there is alot to be said for having a think tank of doctors to work on your child & try to figure things out. The problems come in when they all plan things one way and they don't communicate any of those thoughts to the other. All you have then is chaos. One Dr would come in & say one things and the next would come in & say they were going to do something else. No one talked to the other or to us. Plans were made without telling us & then things that we knew about were cancelled without telling us. It is one of the most frustrating things about all of this. That and still not having a definitive diagnosis.

We were told we would be in until Wednesday and that was the earliest we would get out. So we were planning on flying my mother-in-law in from Texas so that our 7 yr old could come home and go to school. She had been staying at my mom's and there was no way my mom could get her back and forth to school. Plans changed from one second to the next while we were in the hospital. Connor kept getting sicker from a virus (he was diagnosed with RSV a respiratory virus while we were in there) and diarrhea that the dr's kept ignoring because it didn't have anything to do with his neurological problems. Although any virus or illness can make all of this worse. My mother-in-law God Bless her heart is on stand by for the next upheaval. She is ready to fly here if/ when we need her.

When Connor was admitted he was supposed to have a spinal tap the next day. They didn't know the time because he has to go through the sedation unit and they were hoping for a cancellation due to the weather (we had a bad storm which closed all the schools in Phili). Because they didn't know the time that all this was going to happen Connor was not allowed to have anything to eat or drink. It was a miserable 6 or 7 hours (his last bottle was the night before and he hadn't eaten anything since breakfast the day before and he didn't eat a lot then). We finally got the time for his test and we had a half hour to go. Then the roving neurologists (that is what I call all the neuro dr's that come crowding into Connor's room everyday) come in and say in passing that they cancelled his spinal tap. I was pissed that they put him through all of that and then cancel it at the last minute. The head dr decided that Connor didn't need the tap (even though I was told they needed to look for changes and it was the only way to do some of the metabolic tests that they needed). Now they are changing everything!

The next they decided to refer him to the metabolic team and see if there was a test that the roving neuro docs didn't think of that could help with this puzzle. Then we were told that they were going to do something called an MIBG scan. It is a nuclear medicine scan and he will be injected with an radioactive isotope and the next day he will get the scan to see if there were any "hot spots". I had never heard of this test but I found out as soon as we got home. They are looking for cancer. Neuroblastoma to be precise. I was devastated. They also were going to finally get him rehab. He was evaluated and started physical, occupational and speech therapy. They were going to give him all 3 therapies 7 days a week while he was inpatient. After we were discharged the social worker was going to set him up with the therapy at home with the early intervention program.

This was all Thursday and Friday. I was happy he was starting therapy to try to stop the regression for now even if it wasn't going to get us where we should be yet at least it was something. We had been evaluated by speech therapy by the end of Friday with the others to come in the next day. In the mean time Connor has been getting sicker with the diarrhea, not eating, the coughing and wheezing. I knew he was getting bad but every time we tried to get them to address these things we were blown off. Just like we have been blown off about the way his face has been getting really puffy. They look (or pretend to look) and then go on to whatever else they had on their mind.

This is the point that I start to lose it and the fight begins. That I will save for the next post.

Feb 21, 2008

Connor was due to be at the hospital's sedation clinic at 2:30 for a 3:30 scan. I called our neuro dr earlier that morning because of some new symptoms he was having. They weren't a big deal by them selves but put together they were bothering me. Things like a fever over the weekend (it seems to be a big deal among the dr's if he has one but no one will tell me why), he started to choke when we feed him (he will choke of the food if it has any texture, bottles at times and even his own drool. He was never a baby to choke. even as an infant when alot of babies do), he is holding his head like he is in pain at times and when that happens it gets alot worse if we try to lay him down, he also is much more irritable. For Connor that is usually putting him where most babies get when they have a cold. He is just not an irritable baby and never has been. Which has been a big problem with getting the dr's to listen to us. He had pneumonia with a 102.5 fever and when we took him to the dr's they acted like I was crazy. He was talking and flirting and smiling. He even let the dr hold him. I don't really think they believed me until they listened to his lungs. After that the dr just kept saying I can't believe him. He is such a good baby!! She kept coming back to hold him. So, having him so easy going has been a big barrier in trying to get the dr's to believe us and diagnose him.

Anyway, with the combination of symptoms I called our neuro dr and she called back and wanted us in the ER at Children's Hospital of Phili (CHOP). She called us at 10 am and told us to pack a bag or 2 "just in case". We were on the road in less than 1/2 hour. We also had an accident about a mile or 2 later. Not our fault, no one hurt and not much damage but did slow us down. We got to CHOP and the er finally called us in and the neuro team checked him out. No one wanted the MRI to get cancelled so we were rushed. One dr examined him with Joe staying with Connor and 3 more dr's "interviewed" me to get the story and facts. We were then sent off to the sedation clinic with a stop at the lab to get the vials we needed for the blood work. They were going to do it all when they started the iv so that he didn't have to keep getting stuck. We got to the sedation unit at 2:45 15 min past when they wanted us. They then told us we needed to go register. I explained that we were just in the er and I was told that because the ER discharged us we needed to re register. We went to do that and at the registration desk the lady calls over and asks if it is OK to still register us because we were late (now 2:50). I was seconds from blowing now. I was close before and then this. If we were told no it would not have been a pretty site. I looked around to say something to Joe about it and he was no where to be found. He just disappeared!!! Once he knew that things were getting out of control and I was ready to "go off" as my kids say he took off.

We got through registration, were then sent to the waiting room. Someone came out and got us and took us back to the sedation clinic and they tried to send us back to the waiting room because they weren't ready for us and they were running behind. The girl that brought us back was told to bring us back. This is a recurring theme throughout our stay. No one knows what the others are doing and too many people have too many opinions and no one follows through.

Long story short (kind of long already don't you think). Connor got his MRI (I am told that it was normal but it will be a few weeks before I get the results to see for myself), he did not get the blood drawn because of more miscommunication, our Neuro dr's lost us, found us and admitted us (after the sedation unit almost discharged us but I stopped that until they checked to see if Neuro wanted us admitted). The rest of the hospital story will have to wait till tomorrow because I am exhausted. I having been fighting dr's for days now and watching my son get sicker while we just keep "waiting". I will fill you all in more tomorrow but for now Connor is home and asleep in his own bed finally (he didn't go out till after 1am). He is sicker now too and I am worried that he is going to end up in another hospital for this RSV that he has now.

Joe and I wanted everyone to know how much we appreciate your prayers and well wishes through out this whole nightmare. Connor can use all the prayer he can get right now. Thank you all for caring so much.

Appointment for MRI

I just heard from the radiology department of CHOP and Connor goes in on Thursday the 21st for all his tests. The earliest appointment I could get is for 3:30 and we have to be there by 2:30. That sucks. He can't have anything to eat for 6 hours before and only clear liquids until 12:30. The poor baby is going to be hungry and miserable. I tried to get a morning appointment but the earliest appointment in the morning wasn't until March. That was just too long to wait. I did make sure that they would either keep the iv in until we can get the blood drawn after the MRI or hopefully they can do it right there. But, he will NOT be getting stuck twice.

I will write again if his condition changes or anything else changes. If not, I will post after he gets the MRI. I just pray they find something that can be treated. I know there is something going on so all I can do now is pray that they can find out for sure what it is and that it is something that they can treat and treat successfully. Before he loses anymore ground and it it too late.

2/14/08

The update to our Dr appointment that we had on Tuesday the 12th is that we never went. We had a snow storm that didn't amount to much but the roads were bad. We didn't want to take the kids out and risk an accident. After I cancelled I tried to reschedule & we were informed that our pediatrician will be away and they tried giving me an appoint for March. I told them we couldn't wait that long. The receptionist said we could see one of the other dr's. I said, no. The other dr's have not seen him through all of this nor have they been the ones keeping in touch with our neurologist. These are some of the same dr's that kept blowing us off when we were trying to tell them something was wrong. I don't think so. We decided to not go in and just make the call to our neurologist on Wednesday the 20th like we were supposed to.

Today our neurologist called me. (I was shocked me let me tell you. Also it made me worry that something else is up). She asked how Connor was and if he was getting any better. I told her no. I told her that he hasn't regained any words and he is much more irritable. Our Dr asked when we are supposed to see her. I reminded her that we have nothing set up. The way we left things last week was that I was supposed to call her on the 20th and if he wasn't any better she would set up the MRI of his brain and spine and do the metabolic work up. I told her I had the RX for the blood work already. She is not happy with the fact that Connor has shown no improvement and she wants to move everything up. She is putting in the paper work to do Connor's MRI at CHOP sometime next week as an outpatient. She told us to get the blood work done while we are there.

After all this is done and she gets the results she will decide about putting Connor back into CHOP for more advanced and invasive tests and treatment if there is any. I could be wrong but I got the impression that she is going to end up putting him back in. I know last week Dr Venkat (neuro Dr) was talking about ivgg therapy and how she wasn't ready to do that yet because it is a blood product and that can bring it's own set of complications and problems. I just looked that up and I haven't seen what that is going to accomplish for him since we don't know what it was that caused this. The articles I have read state that it works well for kids that were exposed to certain diseases and you know what they are and it is given early after exposure. I don't see how this is going to help him but you can be sure I will questioning his doctors and understanding how this will help before I will allow them to give him anything.

I am waiting for CHOP to call me today so we can find out when we are going in for his tests. I just have to make sure it is not on Tuesday because that is the day we have to go to my pain Dr or I will be out of meds and that will create even bigger problems and I will not be any good for anybody. Thank God the company and people Joe works for are so great and understanding or I would be in a real mess. As it is we have to worry about the lost money from the days off but at least we don't have to worry that the job won't be there on the days he can go in. Without that we would have just one more things we would have to worry about. He couldn't be working for a better company right now. They have always maintained through out all of this that Connor comes first and not to worry about the job it is there and isn't going anywhere.

I will post again as soon as I hear from CHOP and have a date for his tests. I dread having to go through all this again especially the sedation part. His reaction to that was something I never want to see again. As long as they don't give him that one medication in that little cocktail they prepare for him then he should be good. BUT, I will always be holding my breath every time he has to have meds now just waiting for a reaction like that. It is something I never ever want to see again.

After The Hospital

It is now almost a month after Connor got out of the hospital and he is no better. His walking is the same. He isn't saying any words now. He babbles like an infant. He is much more irritable than he has ever been. Our pediatrician called our neurologist right after he got out of the hospital and she at least got a game plan so we didn't feel like we were floundering and on our own. Our pediatrician will be following Connor on a weekly basis and reporting back to our neuro dr. Our neuro dr will be seeing him every 2-3 weeks indefinitely.

Our first visit with the pediatrician went well. When I say well I mean that I felt like someone was on our side. She was upset with the way he was walking and the fact that he lost all his words. She didn't like the idea of how long this had gone on and told us that we were going to give the neuro dr the couple of weeks she thinks he needs to resolve this on his own and if that doesn't work then we need to look further into it. I left there at least feeling like we were listened to and our feelings were validated (meaning she didn't just blow off all our concerns like some of the dr's in the hospital did).

We saw our neuro dr on February 6th. She sat down and explained alot more to us and I don't feel that she is blowing off our concerns anymore. I asked her about clotting disorders (my sister just found out she has 2 hereditary clotting disorders. I haven't had the chance to get tested yet.). I was told that he would be having strokes not what he is going through. I questioned her about his MRI because any mom who reads that her kid has "nonspecific white matter hyper intense foci" is not going to just let it go as NOTHING. She informed me there were not enough of them to cause a concern yet (bet me I am very concerned!!). As long as Connor doesn't get worse we are going to wait. If he doesn't get better in 2 weeks we are going to repeat his MRI and do a full metabolic work up. If he gets worse at any time they will do things much sooner.

The neuro dr explained to us and from what I have been able to find during my research, cerebelitis usually gets better in 90% of the cases within 4 weeks. My worry is that other 10%. Because Connor has had this since at least mid November. We are way past the 4 week mark. I can't find a whole lot on it but the few posts I have found all the kids had some residual damage. Most of it was problems with coordination and balance. If my son can't be a ballet dancer because of this I can live with it but there are other things that can happen. I read about a 7 yr old that is in diapers because of this and some kids that can't even crawl. All the kids that were in those posts got worse anytime they had a cold or got sick. I just want the truth from the dr's. Are these the very rare cases? What are the chances of this happening to Connor, especially when he is so long into this? So many questions and no answers.

The dr's think this has been caused by a virus Connor had back in October. He had Hand, Foot & Mouth Disease. If that is the case doesn't that mean that he has really had this building up since then and not November? Then I found out that one of the rare complications of chicken pox is cerebelitis. Connor had is 1yr vaccinations in October and the chicken pox vaccine was one of the ones he got then. Could this have come from that? He is supposed to get a booster to that one soon (I think) and I am not going to let him have it. What if he just gets worse and never recovers because of it? Now I am petrified to have him get the chicken pox (which is a risk if I don't let him get the booster).

At this point we are in a waiting game. We are just waiting to see if he gets better and watching to keep him from getting hurt. He still wants to do all the stuff he did before but his body is making it hard. We just put foam squares down on our floor to try to keep him from getting hurt. I am disabled so trying to keep up with him is next to impossible.

We go to the pediatrician on Tuesday the 12th so I will do another post when we find anything else out. Now I have my 7 yr old getting sick and we have been told by the dr's in the hospital that something like that could make Connor worse so God only knows what is going to happen now.

Our Story

Connor is a 16 month old happy and very adaptable child. He was born full term and had a normal natural delivery. He has a cousin that is 2 weeks older than he is. Up to the age of 14 months the 2 of them were hitting milestones within days of each other. They were walking at 12 months and practically running a week or so later. One day in November we noticed that Connor wasn't getting around as fast and he wasn't walking quite right. The best way to describe it is that he walked like he was drunk. He would be standing there and just fall over. The scary part is that he wasn't falling onto his butt like babies learn to do early. He would fall face first, backwards and sideways. His falls increased and so did the injuries. Thank God none of the injuries were serious and didn't require anything more than an ice pack and some TLC.

We had been taking him to the pediatrician often around this time. He had an upper respiratory infection one day and fevers the next. I am not sure how many sick visits we had between November and his next well check up on January 8th when we saw our regular pediatrician but there were a few. We always brought up the walking and we always got the same answers. He has a virus and they can do funny things to your system was one. He might have fluid in his ears and it is throwing off his balance was the other. We knew it was more than that but we couldn't get anyone to listen to us.

Christmas day was an eye opener for me as to how bad Connor had gotten. I am with him everyday so even though I knew that there was something wrong and he wasn't getting better I didn't realize how bad he had gotten. My mother came over and she hadn't seen Connor in a few weeks. When she saw how bad he was she got real upset. I realized then how bad things were. At this point he had started to lose words that he had been using for months now. By the time of his 15 month well check up he was only saying dada.

Everything changed on January 8th. Connor went in for a well check up with our regular pediatrician (on sick visits we get whoever is there). Everything was going fine. We were waiting for the Dr to come in and realized that he needed his diaper changed. My husband was changing his diaper when Connor had a seizure. His eyes rolled to the back of his head, he got all floppy, he was unresponsive and he slept for hours when it was over. After our Dr heard about the walking and the seizure she was very alarmed. She sent us for a CAT scan 2 days later. He had to be sedated because of his age so it was a big deal. That came back negative but she wanted him seen by a neurologist asap. The night after his CAT scan I believe he had another seizure but he was sleeping so I couldn't be sure. His one foot and leg were moving in a jerky motion for almost a minute. This isn't something he had ever done before.

The only pediatric neuro Dr seeing new patients with less than a 6 month wait was over an hour away. I took it. Her office wanted us to get a EEG first and going by that they would decide how soon to get him in. The EEG was at her office an hour and 20 min away. We had that appoint on the 14th. The EEG came out negative. But, our Dr heard our story from her nurse and EEG tech. Her office called us on my cell phone to come back in. She wanted to see Connor right away. Thankfully we hadn't left the parking lot yet. We had just gotten done eating the sandwiches we brought. By the time we were done with the Dr we were being rushed to Children's Hospital Of Philadelphia (CHOP) for more test.

We were in the hospital from Monday late afternoon to Friday afternoon. Connor had an overnight EEG, MRI (which was a nightmare because they had to sedate him for this and the spinal. He had a reaction to one of the meds they gave him to relax him and he freaked. It was instant terror on his face and they had to give him alot more med to knock him out), blood work and a spinal tap. The only thing that came back not negative was his MRI and that didn't have anything in it that they felt helped them figure things out. They didn't feel that the "foci" (what they found on his white matter) was significant enough or enough of them and in the wrong section of the brain to help. Connor did get worse while at the hospital. He got to the point that he couldn't stand and if he did he would fall backwards let alone be able to walk. He also started having balance problems with sitting. I had to hold on to him or he would teeter over.

After a week in the hospital, lots of tests, lots of starving him for the sedation, his reaction to the sedation, a few bumps and bruises from falls, a sore arm from a fall in his bed, the emotional roller coaster and lots of bad food we didn't find out much. They think he has Post Viral Cerebelitis and there is nothing that can be done for it except wait it out. (if that is what he has since no one knows anything for sure) We were sent home to wait things out. If he gets worse we are to call and bring him back in. They gave us a list of things that if he does we need to take him to our nearest ER (CHOP is 1 1/2 hours from us) and CHOP will transport him back to them. We were a wreck.

To say that the first few days back were nerve wracking would be an understatement. We were on constant guard to make sure that he didn't get hurt. Watching for any seizures. Trying to evaluate if Connor's walk was getting better, getting worse or staying the same. I spent hours on the Internet trying to find out anything I could about cerebelitis without a whole lot of luck. There isn't much out there about it and that is one reason I am writing this blog. I am hoping to find someone who has some experience with it and to try to help the next person looking for info.