July 2, 2009

We have so much going on and yet not much new. If that makes any sense. Since my last post Connor has seen the new neurologist, had an MRI, had some genetic testing, we have had appointments at the school he will be going to in the fall because he ages out of early intervention on his birthday. I will try to do this chronologically.

Our appointment with the new Nero dr didn't go as well as we had hoped. He won't take Connor's case. He says it is too complicated. That he would refer us to CHOP. He did order blood work for some genetic testing, an MRI and some special hearing tests. Connor has had the MRI done and that showed the "foci's" or spots on his brain are stable. They haven't gotten worse. What he didn't tell me until I got the report myself is that there is a problem showing with the blood vessels in his brain. He has a hypoplastic vertebral artery. Which mean that the artery running up along the spine of his neck to the brain has no give to it. It is stiff. (very basically put). The basilar artery is ectatic which means the artery being fed by the vertebral artery is slightly bulging. I looked this stuff up on my own and then called the dr because they both can lead to a stroke. I was told that it had nothing to do with what is going on with him now and he hasn't had a stroke yet. DUH! I knew he didn't have a stroke but what about what may happen in the future? So it has now been decided that we need a consult with a Neurosurgeon. We haven't got the genetic testing back yet. Hopefully next week. We are holding off on the hearing test because he would have to be put to sleep for it and no one told us that when we went to do the MRI or we would have done them at the same time. Now I don't want him sedated until he is checked out by the neurosurgeon.

We need to go to a whole bunch of different dr's and so far I haven't made any of the appointments. The neurosurgeon and the cardiologist have to come first. Connor needs a cardiologist now because he now has a heart murmur. We need to get him to a gastro dr because of the chronic diarrhea and the choking. The school is insisting this all be done before he starts at the end of September. He will need a barium swallow test so that they can see the structures of this throat while drinking something to try and determine why he is choking so much. We have seen a developmental eye dr because his occupational therapist thought there may be some processing problems but that turned out ok for now. He has to go back in 6 months. Our pediatrician wants him to be seen by the metabolic team at chop also. I honestly don't remember what the reason was for that one.

We had Connor's 6 month meeting for Early Intervention. He is now getting 14 hrs of therapy/ week. They upped his OT to 5hrs/week and his speech went up to 2hrs/week. We also had our meeting with the school case manager and the school. I am so not ready to be sending my almost 3yr old to school. None of my kids went to preschool or daycare and here I have one that has the most trouble and I have to send him out of the house sooner than all the others. The big debate is if he should go into the disabled preschool which is 2 1/2hrs/day or the autistic class which is 6hrs/day. My first reaction was no way was he going for 6hrs. He was going to the preschool program. But, after meeting both teacher and hearing about the programs and the teacher to student ratio I really like the autistic class. I am still not happy about how long it is and we are real worried about how he will do away from me for that long. But, the teacher is great and he really liked her. Connor will make the 6th student in the class and there is a teacher and 4 aides along with all the therapists that are in and out of there. I am just not sure what the right thing to do for him is.

Connor is doing better in some areas like his speech is getting better. Still not any where near what it should be but better. He is not so rigid with that he will touch or not touch. His balance is kind of status-quo. He is still having some major risk taking behavior because he doesn't understand that things are dangerous. He will only talk to his 2 cousins. Other that that if any other kids comes near him he goes into his own world and acts like they aren't there. He is having some problems with his temperature. If it is hot outside, if he is tired, if he gets anxious then he starts to run a fever. As soon as the problem (what ever it happens to be at the time) is fixed or goes away then so does his fever. Our dr said that there isn't anything we can really do for it but try to treat it at the time. I can see this having some big problems with the school. I have started to give Connor Melatonin at night before bed to try and help with his sleep issues. Things are at least 90% better than they were. He used to go to sleep @ 9-10 (started trying by 7) then he would wake up around 12-1 and be up until sometimes 5 in the morning then he would be up for the day by 6-7. I was a walking zombie. Now for the most part he is down by 8 and up by 7 with maybe one wake up in the middle of the night but not for too long. Much better!!! We are also in the process of trying to get SSI for Connor. There are so many things he needs and some much our insurance won't cover. I am keeping my fingers crossed. Hopefully if we get it we can get him into a Defeat Autism Now dr.

I will try to post again next week when we get the genetic testing back. I keep hoping that they will find SOMETHING. I need some answers soon or I am going to go crazy.

April 18th updates

Connor has a new neuro dr appointment on May 22. I tried getting him in with 3 other Universities and children hospitals and I was told that they aren't taking any new neuro cases. We finally found one that will see us. Just don't know if we are going to get anywhere with this one either. We also got a call from our pediatrician and she told us that the blood work we had done on Connor came back as severely anemic. We have to give him some very specific iron supplement 1 teaspoon 2X/day. That is going to be hell. He freaks out any time you try to put something in his mouth. Then we have to brush his teeth or wipe them off with a cloth cause the stuff will stain his teeth. So, that is another fight. If this doesn't improve things in 3 months he will have to go for more tests to see what is causing this.

We had to have the behavioral therapist come in to the house so that we could figure out the best way to deal with his tantrums. They are getting real bad with the violence escalating. He is not a light child and with my disabilities I am having a hard time protecting Connor and myself.We had to figure out a way to safely restrain him while he is going through the worse of it. I am covered in bruises from his melt downs. He is covered in bruises from his melt downs. He takes toy planes and slams them into his head over and over again. It is scary and heart breaking. His therapist is now calling in the same woman because Connor's speech has gone way down and he is going into his own world much more often. We need help trying to figure out why and what to do about it. We have set up an eval for Connor to start Occupational therapy as an out patient along with what he is getting now. He needs more than he is getting and his therapist now feels that with early intervention they approach things developmentally and as an out patient they will treat it more from a medical stand point. We are all hoping that this helps. Only problem with that is that we don't have the eval until 8/24.

His new developmental scores are in but I don't have them with me. I will post them next time I write. I will also get on here as soon as I can after our neuro appointment in May. God I hope we get some answers and this doesn't turn into another big let down. Thank you all for your prayers and your caring

Developmental Pediatrician

We had our appointment with the developmental pediatrician on 3/5. I have very mixed feeling about it. The dr that evaluated him says he is only 4 months behind developmentally. No one including his pediatrician believes that. When he is around children that are 18 months or older it is in your face how far behind he is. The dr did not see him interact independently. Every test he did was with Connor sitting on Joe's lap. Any one who works with him knows that what you see when he is "contained" in a chair or lap is not what you see when he is on the floor on his own. (it is now believed that this is because of all of his sensory problems). He did not watch Connor play & see how he doesn't really play. He paces, stops looks at a toy for a few minutes and then starts pacing again. Anyway, even with all he didn't do, he has diagnosed him with PDD-NOS. Which means Pervasive Developmental Disorder No Origin Specified. So, the long and the short of it is that Connor does fall into the autism spectrum. There is a great web site Autism Speaks that explains PDD-NOS if anyone wants a better understanding of this. http://www.autismspeaks.org/navigating/pdd_nos.php .

Connor has started Occupational therapy. He has so many sensory problems that they are going to try a special music program. It works with the brain to try and make some of the connections that are either not connected or broken. He is stimming so bad lately that I don't know what to do. He is also getting more and more violent. I getting so that I don't know how to handle him anymore. I am covered in bruises. He will be slamming his head into you one minute and hugging you the next. He paces around the living room in a circle humming the whole time for an hour or more at a time. Julia is becoming afraid of him because you never know what is going to set him off and he will start hurting you or himself. Because he doesn't feel pain like a "normal" kid we have to be very careful when he does start to flip out. Walking away from him when he is like that doesn't work because he just turns the violence on himself. I am really at a loss.

We are trying to get him in with a Neuro Doctor outside of CHOP for a second opinion and to see about another round of IVIG for him. Unfortunately we are not having any luck. I have called DuPont Children's hospital and Bristol Myer's Squid Children's Hospital (Robert Wood) and neither one is taking any new neuro cases. I don't know if they really aren't taking new cases or they heard we were looking for a second opinion and decided they weren't interested. Our pediatrician is now trying to talk to some dr's and get us in somewhere.

Connor will be ageing out of the Early Intervention program in September. They only take kids until they are 3 then they have to go to a special needs preschool. I am NOT OK with that at all. He will have to be on a bus because I can't drive him due to my disabilities and I don't even know how I will get him to the bus. I don't want him in a school so young. I know people do it all the time and I have nothing against it if it is right for them. It is not right for me. I didn't send any of my kids to preschool or day care. I know I need to send him so that he can have the best chance of a "normal" life someday but I am not OK with it and don't know how I am going to handle it when the time comes to actually put him on the bus scared to death. (he doesn't handle being away from me very well at all and doesn't handle new situations at all well). I just wish that our state did it more like NY. From what I understand they have early intervention till 3 yrs and then another program pick them up in the home until 5yrs of age & then they go to special needs school. I would be much better with that kind of program.

I will write again as soon as I know when and where we have a new neuro appointment. I am hoping it will be soon and not months away. Thank you all for caring and following Connor's story.

1/6/09

It has been a long time since I have updated everyone. So much has gone on. Sorry for the long delay. Connor was doing really well for awhile after his IVIG therapy. Unfortunately his neurologist feels that his progress was just a coincidence and not the IVIG therapy that did it. She is the only one that feels that way. All of his therapists, other doctors, family & friends saw a big change in him and it was too soon after the therapy and too drastic after almost 1yr of regression and delays to be anything but the therapy. His walking had gotten better. Not up to what a "normal" 2yr old would be walking and doing things but definatly better than he was. His words and developmental age were getting better. Again not where he should be but much better than where he was.

A month or so ago we realized that he was having an increase in sensory problems. He was starting to have more falls. He knows when he is having a real bad day and uses his walker on his own. But, he doesn't show fear after a fall like a typical kid. He also doesn't seem to feel pain like a normal kid. If he cries after a fall then you can be sure he really got hurt. Around Christmas he started to have a lot more falls. He ended up with a fat & split lip with a blood blister on it plus a few bruises on his forehead all for his Christmas pictures.

Since the last posting his therapies have been increased. We had a Occupational therapy eval for all his sensory problems and his fine motor skills. They have said that he has alot of problems and needs to start therapy ASAP. They are trying to push that paper work through. That will be a minimum of 2 hrs/week. He has PT 1hr/week, developmental intervention 6hrs/week & speech 1hr/week. He is up to 10 hrs/week of therapy. Yet he is still a year behind in just about everything.

We are still trying to get in to the developmental pediatrician for the evaluation for autism. That needs to be either ruled in or out. He has alot of autistic traits but at the same time he has other things going on that have nothing to do with autism. His neuro dr seems to think that is what is going on now. Mind you she hasn't seen him since October. She only talked to me on the phone yesterday for 10 min and decided that the fact that he is getting worse and his walking is getting bad again is not ataxia or neuro problems but autism. We do have an appointment with the developmental dr but not until September 14, 2009. Our pediatrician called this dr and told him Connor's history and the developmental dr said he will see us before February and that Connor can not wait until September to be seen. Thank God for that. I don't know that I can wait that long to have this done.

We are in a holding pattern now and while we are playing this waiting game with the dr's Connor is slowly getting worse again. His speech is still better than we were but he is repeating things over and over again. They call that echolalia and it can be a symptom of alot of things. There has been a lot of upheaval in the house lately from some so called "friends" which I am sure has not helped Connor or his progress any. We are trying to overcome any damage caused by that. The holidays seemed to have also kind of upset the balance of things with Connor. I am hoping now that things are getting back to normal we may see some improvement with him again. I will post as soon as I have something new to tell. Hopefully we will get the developmental dr eval done soon. It would be real nice to have a diagnosis for him. Without that we don't have any idea of what kind of prognosis we are looking at. Keep Connor in your prayers please. He still needs all he can get.