Chiari Online Support Group

Chiari and EDS —Pediatric where do we go from here?

Hi all, I pray everyone had a Merry Christmas! Just have a couple of questions . Hope ( my 11 yo) was diagnosed with Chiari in August and just recently (this month) with EDS as well. The neurosurgeon we have seen at Duke has been great but the neurologist won’t even return my calls. We have an upcoming appointment next month with him again. The issues are #1 the meds aren’t helping, in fact, I believe they are making her worse #2 she had an allergic reaction to the Emergency headache medication both times I gave it to her with the most recent ending in an ambulance ride…ugh! So obviously I’m frustrated with the neurologist however her orthopedic diagnosed the EDS and now I’m unsure what type of Dr we need to follow up with about that. Also, the neurosurgeon said because her herniation is only 6 mm, he doesn’t want to put her through surgery that may not help but even worse, have to be repeated in the future. I should add that she is currently in a major growth spurt, which I tend to believe really set off her some of her symptoms in the first place. He wants to repeat her MRIs in a few months and go from there and I’m ok with that idea. My other question is do I need to reach out to him about her EDS diagnosis? Does it make a difference as far as surgery is concerned? Any thoughts would be greatly appreciated. Thinking of you all, praying for us all, God bless !
Angel

Hey - I live in SC and I have Chiari as does my sister and 3 of my children . My sister and one son have EDS- have you tried Dr Sunil Patel at MUSC?? He is very familiar with connective tissue disorders with Chiari and also very familiar with CCI which may be more of her issue along with POTS most likely due to the elevated heart rate. Feel free to message me

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Might want to delete your post and send contact info privately…

Thanks

@redheadsmommy Thank you so much for the info. Unfortunately, or fortunately— depending on how you look at it…Hope was admitted to MUSC last night. They admitted her based on her continuous hallucinations which they believe are being caused by the headaches?!? Anyway, means to an end, as I was able to refer to your recommendation for Dr. Patel. Neurol will be in sometime this morning so we shall see what happens. Thank you again for reaching out! God bless you :purple_heart: