Please Help!! Need solutions --Need to find a doctor!!

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Please Help!! Need solutions --Need to find a doctor!!

Postby ledestiny » Sat Mar 19, 2011 12:40 pm

Hi All!
I am mom to a little guy named Wade. He is four years old and was born with a craniofacial genetic disorder called Pfeiffer syndrome. Similar to the one seen in the movie Mask, Wade has had four cranial reconstruction surgeries and two surgeries for hydrocephalus. He started developing a chiari when he was a couple months old, immediately following the placement of the VP shunt. We are followed by a team in Dallas for his craniofacial stuff, and to them the development of the chiari was a typical result from the shunt so I never thought much about it. He has had two chairi decompressions. The first involved removal of the bone around the foramen magnum and a dura patch. This one did not help at all, in fact he developed central apnea that got increasingly worse over time. Within 5 months the apnic spells went from less than 10 an hour while sleeping to over 1,000 in a 6 hour period. We had another chiari decompression in which his NS removed the cerebellar tonsils. This almost completely relieved the apnea spells, and so we thoguht we were through. My son is non-verbal, non-mobile, but he used to be able to sit up unassisted, eat by mouth, and interact some what. I never knew, nor realized that he was unable to do so much because of this chiari. So, scan forward a few years and he is getting incredibly worse and worse. He no longer sits up, he doesn't interact, he throws up all the time, gags all the time, it is just a horrible existence. Through this we had been treating him for seizure disorder because he would go through these periods where he would kind just close his eyes, not interact at all, his breathing would become shallow, and he would seem like he's in intense pain. He would also just quit breathing. Just out of nowhere he would just stop breathing. So, the only solution we or any of his doctors came to was he was having seizures. We kept treating for them for a while and everythign was fine. He would only quit breathing every 6 months or so so it seemed like this was the solution. Then this last summer and fall it began happening more frequent until finally it was happening ever 3 weeks. Every time it would happen we would have to bag him with the AMBU bag and get air lifted to our major children's hospital in Houston. While there I began to research some of his other symptoms and found a specialist in Cleveland, Ohio. Now my son has been diagnosed with Autonomic Disorder, Orthostatic Hypotension and migraines associated with his chiari. Oh, and I forgot to mention that his chiari was herniated all the way down to the level of C4. So, it turns out that all that we have been seeing is do to my poor sweet guy having migraines this whole time. Needless to say, I am saddening, angry, frustrated, and just over all feeling full of sorrow for the pain my little guy has endured for years.

My quesitons now are who is the best pediatric neurosurgeon to deal with chiaris in kids? I've seen a little from one in Seattle, and Iowa City. Where does every body go? Who treats the most kids? What can I do for my little guy? He's on 4-6mg of cyproheptadine BID and 10mg of verapimil BID, along with getting salt for his low blood pressure. I'm learnign that hot baths help. What about over stimulating? He loves going to school. He goes three days a week for 2 hours at a time. Is that ok? Where can I read literature about this disorder?

Help me please!

I am so tired of my baby hurting. The new meds, the cyproheptadine and the verapimil have helped tremendously, but he still has some pain. This morning he woke up and his neck was stiff. I had to slowly move him so he could roll over. Do I massage his neck when its like that? Have y'all heard about a doctor in Austin that does sugar water injections into the muscle and ligaments to ease the tension? I've never heard of this specifically for chiari but I have a friend who has osteoporosis and had this done for a broken vertabrae and was healed instantly.

What do I need to know about chiaris? We've just taken for granted for so long that our craniofacial neurosurgeon was also a specialist in chiaris that I never questioned it. Now, I want to know what to do. We will take him where ever we need to go. I'll make an appointment next week, I just need to know where to go.

Im sure I'll have a ton more questions. I found a few other groups so Im going to repost this same message in those groups too :-)

Thanks so much!

Becky, mom to Wade
ledestiny
 
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Re: Please Help!! Need solutions --Need to find a doctor!!

Postby razzle » Sun Mar 20, 2011 6:21 am

Dr. W Jerry Oakes MD practices neurosurgery in Birmingham, Alabama

Dr Frim in Cicago

dr Menenez in Iowa city

dr. Wetjen at Mayo http://mayoresearch.mayo.edu/mayo/resea ... jen_NM.cfm
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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razzle
 
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