First off, I would like to commend you on all you have already accomplished. It is hard knowing if you are doing the right thing when no one else seams to have a clue! You situation sounds SO familiar!!! Where should I start...
Devons shoes have ALWAYS been an issue. His feet are very wide and think! I should also add EXPENSIVE! I feel for you! I think the shoe guys get exited when they see us coming. Devons feet grow so fast too. I always try to keep two pair at hand for him, but he grows out of them before he wears them out (or in for that matter!) Devons hands are huge. He cannot even get my rings on his fingers, and has not been able to for years. His nails are very thin and flimsy. He hates them cut (sensory I believe) and he chews on them often, I think to help regulate himself.
The skin tag thing is interesting. Devon does not have them, although I have a few under my arms pits (cannot believe I just shared that willingly!)
Teeth. As I said earlier, Devons erupted about average age, although he lost them way early. Another issue Devon has is that he grinds them to no end in his sleep. He has grinded them flat or almost to the gum line. The dentist out caps on all his back molars. He said it was not unusual for an autistic child to grind like that, is this what may be causing Logans? Devons teeth are also think and brittle, I thought this was unusual, the rest of his bones are strong!?
Behavior!!! This is what I consider my sons worst disability. It started when he was very young. Doc kept saying "autism," but the aggression was getting worse and he was getting bigger. I put him on behavior meds when he was about 2 1/2. It has done wonders, but he still has behaviors. I am seeking help from a very knowledgeable "Dean of Pediatric Psychology/Psyciarty" to get more help. He is very impulsive, explosive and hyperactive, not a good combination at all! We have tried behavior therapy, and I must say i would definitely advise parent to try it out. I was amazed at how the behaviorist understood Devons frustrations. She had great ideas and a great treatment plan. I did wonders as well, something you might want to look into to!
As far as your regular pediatrician goes, he/she needs to treat the symptoms. there is not really any miracle drug for this syndrome, but you still have to treat the symptoms as you would with any child experiencing symptoms.
My sons sees a list of specialist to help with all his medical issues. We check in with the geneticist yearly. He sees an endocrinologist for growth/puberty, a cardiologist for his heart issues, a gastrologist for his bowl & stomach problems, allergist for all the allergies, pulmonogist for his breathing issues, a sleep specialist for his sleep apnea, a developmental pediatrician to go over his development and to address his needs, the eye doctor because devon has some strange things going on with his eyes, an ear, nose and throat doctor for his nasal deformities, nose bleeds and for his ears. I know I left a few out...
My son was very sick for a very long time, he still gets sick, but I think I have it much better under control. Devons allergies where causing a lot of his infections. Devon also got repeated ear and sinus infections. He used to have a lot of lung infections until he figured out he was aspirating on all liquids, and refluxing into his lungs. He has a feeding tube now, and has for about 5 years.
My son has always had a receding hair line, he looked like an old man when he was a baby!
I would love to talk with you more, I hope some of my sons past medical problems and how we dealt with them might help. My sons pediatrician is great as well. Maybe your doc can call my sons doc...?
hang in there, it is a long road ahead. God gave you Logan for a reason. you are your child's best advocate. Another thing I learned is to go with my gut feelings. Bug these docs, ask all your questions, if they do not have the answers, ask the doc who would, and go see them. It is a constant fight, or at least it feel like it to me, but seeing my sons progression over the last few years has been more than worth it to me. He is doing things we never thought he would! I do not want to sound negative, just realistic. This is hard, I hope the hardest thing I will have to go through as a parent, sometimes I feel I cannot handle much more, but his smiling, loving face is worth everything!
Hope to hear from you soon! April
--- On Thu, 9/18/08, jacqueline miller <jacq1976@...> wrote: From: jacqueline miller <jacq1976@...> |
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