Gavin’s health crisis: Where we stand 8/8/2011

Gavin’s Health Crisis: Where we stand?

I have been spending some time today trying to play catch up on the blog. Things have been so crazy around here lately that I have not kept up as well as I would like to. The health issues going on with Gavin have been pretty much all consuming lately. However, I still feel it’s important to share our story because it not only helps me to sort of work things out but it also puts valuable information out there.

I truly believe the best way to raise awareness about anything is by sharing your personal experience and putting a face with a particular situation. In our case we are not only dealing with the challenges associated with Autism but also very serious health situations. While these serious health issues are not caused by Autism, they are significantly more complex because of it.

We found out last week that Gavin has a severely compromised immune system. We actually found this out by accident through a random panel of blood work related to his gastrointestinal issues. Gavin is wired differently then most. He will completely lose it over a paper cut or hang nail but will rarely say anything at all about being sick. No one had any idea that Gavin’s immune system was in such bad shape. His allergy problems turned out to be chronic sinusitis and pneumonia but Gavin never said a word or really showed any signs of actually being sick. We all thought it was allergy related nasal congestion with post nasal drip, causing the periodic cough. We were completely caught off guard and Gavin just never said anything to us about not feeling well.

Gavin is not a reliable source of information about himself. He can’t describe how something feels (headache, chest pain ect) in a manner that is useful to medical staff. This is related to him having Aspergers or now, possibly, childhood disintegrative disorder.  His expressive language skills are sorely lacking making it difficult to understand what he means when he chooses the words he does. Hence Autism complicating everything.

Gavin’s Health Crisis: What are we doing now?

I explained in an earlier post today that Gavin will receive his first antibody infusion around lunch time tomorrow. The infusion will replace Gavin’s missing immune system with donor antibodies. He will have this done either once a month at Akron Children’s Hospital or once or twice a week at home via portable pump. It will infuse the antibodies over a two hour period of time directly into his belly through a sub-Q needle in his stomach.

I also talked to Dr. Nancy Wasserbauer, DO, Gavin’s Allergist/Immunologist and she explained what was going on so I had a better understanding. She said the first priority is to get Gavin started on the infusions to bolster his immune system. Once his IgM and IgG levels have stabilized then we confirm the cause. The concern is that we may be dealing with something called Ataxia Telangiectasiawhich is a rare, childhood neurological disorder that causes degeneration in the part of the brain that controls motor movements and speech. Low IgM and IgG is also a symptom as well. It would seem to explain some of Gavin’s otherwise unexplained neurological issues.

 Dr. Nancy Wasserbauer, DO said that Gavin doesn’t present with all the typical symptoms and that we would have to wait for further testing to confirm one way or the other. That leaves things up in the air, which is pretty stressful but at least we identified the life threats and are addressing them. The actual cause will be something for near future.

Shortly after speaking to  Dr. Nancy Wasserbauer, DO, I received a phone call from Dr. Glazer, head of the Cleveland Clinic Children’s Hospital Section of Child and Adolescent Psychiatry. We spoke for about 45 minutes about what was going on with Gavin. He said he would be very happy to see Gavin again. We also spoke about childhood disintegrative disorder as well. Gavin does present with the classic signs of CDD but Dr. Glazer completely agrees that we have to deal with the current health crisis before we do anything else. He did say that he would also like to help facilitate communication between all the doctors involved in trying to solve the mysterious conditions affecting Gavin. I thought that was really great to hear.

Dr. Glazer took his time on the phone and never once did I feel rushed, despite the fact that there is so much demand on his time. Gavin will be seen sometime during the 1st or 2nd week in September. Hopefully we will have more answers by then and we can start to formulate a plan of attack. He also made sure to explain that none of this was our fault and that Gavin was very lucky to have parents like Lizze and I. That was nice to hear from someone like him because sometimes I don’t feel like I’m doing a good enough job.

Gavin’s Health Crisis: What is the outlook like?

I have no idea what the outcome of all or even some of these things will be. Right now we have to take everything one step at a time. We are back to living minute by minute but such is the life of a special needs parent. I know many of you out there know what living minute to minute is like. Sometimes that’s all you can do to survive to fight another day. Hopefully, we can get our feet back underneath us and make some forward progress but for now I’ll settle for not falling any farther behind then we already are.

Tomorrow is a very big day for Gavin and honestly us as well. We have some books explaining what is going to be happening and he doesn’t seem to be to nervous but I suspect that will change as the time creeps closer. The will be taking place in the oncology infusion lab at Akron Children’s Hospital. Gavin will be treated alongside children receiving chemo therapy. That is a heartbreaking thing to witness and it’s something that will put your life and challenges associated with your life into perspective rather quickly.

I’ll do my best to keep you all updated as to how everything turns out.

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Melanie

I just saw your blog on Picket Fence blogs and decided to come for a visit. When I read that you have 3 Autistic Boys and a wife with Fibromyalgia, I wondered if you had ever heard of a genetic defect called MTHFR? You can check out this page on my blog for more information (http://melaniesmethodicalmusings.blogspot.com/p/mthfr.html). 97% of Autistic kids that have been tested for this disorder have come back with a "compound homozygous" test (as in both tested sites on the MTHFR gene from BOTH parents is defective). Fibromyalgia is also a HUGE side effect of this defect. Give it a look. It's definitely worth looking into.
My recent post Depressed Atheist meets depression recovering Christian…by chance?

Dearest_Nikky

Considering G has been doing so well with his blood draws, perhaps you can relate to him that instead of drawing blood to have things checked, he is getting medicine to help make him feel better (much like the inhaler)? I know you probably have already done this 😉 but I felt compelled to "say it out loud". I am sure the fact that you and Lizze will both be there, it will help Gavin immensely.

Another thought I had – it may be better to have G's infusions done in the hospital. It is possible the other mental aspect that causes his hallucinations could cause him to see the infusions as "poison" when he is at home. Thus it could cause some serious meltdowns that will inevitably tip this oh so delicate balance you have found perse. Also – doing it once a month may actually be easier as well -perhaps you will be able to "tack it on" to one of the other trips to ACH? Regardless… I Love you all and if you need anything please don't hesitate to call me!!

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