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:

Hope was hospitalized for a week at MUSC and they were completely unable to help her at all. Not only were they unable to help her headache/ neck and joint pain levels, she actually had several severe dystonic reactions to one of the meds. It was terrifying for both of us! They sent us home in the exact position we arrived in a week prior, with the exception of referrals for genetic testing for the EDS and Occupational and Physical therapy. Basically they took the position that her continued visual and auditory hallucinations were being caused by basilar migraines and she would just have to learn to live with and deal with the pain and vision issues. After coming home last week, she continued to deteriorate. She has severe insomnia and only sleeps approximately 2-3 hrs a night. She began having terrible balance issues and began falling down often (4x in one day) even though I physically walk her to and from everywhere in the house. Her emotional state is a wreck to say the least…crying inconsolably one moment and then acting much like a toddler only an hour later. I took her back to her pediatrician and he immediately ordered another brain MRI. We had that done this morning and have an appointment first thing Monday for results. In the meantime, I needed a letter for school stating her limitations (although she is on intermittent homebound). Not only did they give me the letter but they finally gave me some actual answers and diagnoses. I am curious if anyone is familiar with and/or has any of these issues??

We have to wait until Monday morning for the MRI results however as of today, this is her list of current diagnoses for Hope ( keep in mind that several drs and I definitely believe she also has Ehlers Danlos Syndrome (EDS) and are waiting for genetic testing for that diagnosis officially.
-Chiari Malformation
-Bilateral headaches
-Visual disturbances with tingling and numbness of skin
-Epidemic Vertigo
-Myoclonic Disorder
-Transient Alteration of Awareness
-Dysphagia

Thank you for anything you can add and please know I pray for each person and family represented on this site. May God continue to guide and protect us along this journey!

Kindest Regards, Angel

Update: While we are still waiting for the second opinion from Boston’s Children’s Hospital, that opinion will be solely from a neurologist. We were able to secure an appointment with a pediatric rheumatologist in 2 weeks. Hopefully they can help shed some light on her chronic joint pain and injuries. The actual genetic testing is not until June.