Going crazy. Suggestions?

[missy101324]

My 5 year old daughter was diagnosed with Chirai 1 malformation of 17mm. We are currently waiting to see a neurologist as our family doctor couldn't give us any information or precautions to take. The more I look into this condition the more symptoms I realize she has and the more scary it all seems. Not sure what to do now, and the waiting game is really tough. I have a feeling they might recommend surgery. What precautions should I be taking while we wait for an appointment? Is there anything she can take or eat or drink more of to help with symptoms? How do we cope? Any help or suggestions would be helpful! Thanks!

[missy101324]

Thank you!

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry ur DD is dealing with the symptoms and this condition in general.....and for u, as u watch ur child and deal with the frustrations of knowing what is best.

U will want to find a true Chiari specialist , one that does research on Chiari and treats only Chiari and related conditions,

More testing will be in order, to see if she has a CSF obstruction, disk issues, a syrinx, tethered cord, sleep apnea, ICP, POTS, ehlers-danlos, thyroid and vitamin issues....

I know this is all very overwhelming....but take it a day at a time and one area of this at a time.....there are a lot of articles and lists for tips with Chiari in the Health Pages from lists of Drs for u to use to research Drs, to activities to avoid to help avoid the triggering of more symptoms.http://www.medhelp.org/health_pages/list?cid=186

Know u and ur DD are not alone <3