I need advice...please..where to go?

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

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I need advice...please..where to go?

Postby momof3indenver » Tue Oct 06, 2009 5:46 pm

I find myself once again writing for some help. I am going to give an abbreviated version as our story has been long and difficult.
My son is now 6 1/2. Over the past year he has had debilitating headaches...(previously had a lumbar shunt placed, june 08) He has since had four shunt revisions, the last one being last May. In june his headaches still continued and he was hospitalized and they did an ICP monitor (repeat) and found his pressures were normal..except for a few spikes of high pressure...we were then told by our nsg that we needed to see a neurologist for headache management...He also had a seizure this summer...in July..no reason was ever given..(MRI's have been done to show adequate space from chiari) We have never had a cine mri done. After 4 months of tried and failed therapy with the neurologists..have tried several different meds for headaches, he is still suffering!! Often vomits from them..gets them on a daily basis..and is having tenderness at the back of his neck with movement..
OK..questions..We sent all his info/history to the mayo clinic in Minn..hoping to get them to reevaluate him...However I recieved a letter from them that they dont think they can help him..and dont want to see him!! Where do I go next?? I am at a loss...I need help for my son..
momof3indenver
 
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Re: I need advice...please..where to go?

Postby jupes » Wed Oct 07, 2009 11:38 am

I am so sorry your son is suffering and you having trouble finding help! :( I agree that you need to seek another expert opinion and if surgery is not an option at this point he needs a specialist/pain management doctor to help get the pain under control! Are you in Colorado? Dr ORO is highly recommended for adults and maybe his office could give you some suggestions on where to seek help in your state. If you post where you live and that you are looking for an expert, Roz may have some other recommendations. You may get more answers/advice if you post on the adult forum too.

You could also start by contacting some of the recommended Peds NS mentioned on this board. Travel may be necessary since most want to see you in person. Some of the Peds experts on the medical advisory board are Dr Keating (Washington DC), Dr Menezes (Iowa), Dr Iskander (Wisconsin). Dr Frim in Chicago is often recommended too and I know there are others.

Pray you find help for your son!

(((HUGS)))
Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
jupes
 
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Re: I need advice...please..where to go?

Postby momof3indenver » Wed Oct 07, 2009 12:57 pm

I have consulted with Dr. Frim in the past. My son had to have a second decompression a year after his first due to scar tissue etc.
Any thoughts on the chiari institute??
We have a neurosurgeon, who is very good...he is on meds for pain management but his symptoms persist and he has tenderness on the back of his neck when he moves it back...
momof3indenver
 
Posts: 33
Joined: Sat Feb 09, 2008 9:29 am


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