Is it common to have Chiari AND other health issues? Isn't Chiari alone enough?

Our son has the diagnosis of chiari malformation but has had a myriad of testing done and they are now considering additional neurological health issues as well. Is it common to have chiari and other brain health issues or other health issues? (Landau Kleffner Syndrome / Autism / skull "crooked" / Seizures that we don't see, Obstructive Sleep Apnea / Severe Allergies / ?

First of all…I am so sorry that your son is going through this:( I can only imagine the pain you’re going through as a parent:(



To answer your question…Yes, there are other diseases/disorders that are officially and unofficially related to Chiari. For example, I have Chiari and Syringomyelia. Some others that I can think of off the top of my head are POTS, Ehlers Danlers Syndrome (sp?), Tethered Cord, and Hydrocephilus (sp?). I read an article about a possible link with Autism, but I don’t think it has been proven yet.



I agree that Chiari alone should be enough for one person to deal with. Hopefully, a cure for Chiari and related conditions will be found soon. I hope they find some answers for your son soon.



Crystal

I forgot to mention that sleep apnea and seizures are possible symptoms of Chiari.

Crystal

Hi..

So sorry that your son is having to go through all this....What is his 1st name???

I also wanted to mention YOU....Being a mom myself..I know, for me, anyway...even if there is a minor health issue with one of my girls I get totally stressed..SO...I can only imagine what you are going through...We are here for you..you have to make time and be sure and take care of yourself...Oft times the mom/caregiver does not give themselves a 2nd thought and that is not good!!! Try and be kind to yourself.

Ok, now I am off my saltbox on that..LOL.

I have Chiari 1 Malformation with no syrinx..decompressed in 08.....I did and still do have C-Spine issues..have already had 2 fusions in my neck..NS thinks this may be related to Chiari.

Crystal and Twitch gave you a wealth of info ..thanks guys.

One thing I must share is that pre-Chiari diagnosis and treatment I would get bronchitis and pnmoenea(sp) at LEAST 3-4 times a yr.

Went to pulmonologist and natuarally he said if I quit smoking ciggs that would stop all these infections....makes sense...we all know smoking is bad..but..i never quit.

Like I said earlier....had surgery 8/08....I have NOT been on an anti biotic for any type of lung problem since decompression....i have had your garden variety cold..but nothing more...

Like Twitch said..."You can't tell me that this is all unrelated."

pls let us know how you and your son are doing.

Peace and Prayers,

Lori

Hi. You all are so helpful and I appreciate the honesty and encouragement. We have two one year olds, one of which has all of these "issues". He is 16 months old and lost his language (words and signs) at 13 months old. He is now not responding to his name. He had is first seizure at 11 months old. He had a CT at 5 months old which revealed benign macrocrania. He had a MRI at 12 months old which revealed the Chiari Malformation Type 1, herniated 7 mm. His latest long term EEG revealed multiple seizures which we cannot see that happen 24 hours a day and in the left lobe. He also has obstructive sleep apnea, severe food allergies, hyperopia (sp?) and strabismus, chewing/swallowing difficulties ... and is CUTE as a BUTTON ... has a beautiful smile ... and is intelligent.

I agree with Twitch, I cannot imagine that these are all unrelated. I hope you find great treatment and relief for the cyst.

Crystal, you are right, as a parent I am in so much pain as I watch my son decline everyday. We are praying for a miracle.

His name is Jonah. Thanks Lori for the saltbox! You're right, I am stressed and it is hard to remember to take care of me ... but I do try and I have a good support system around me. I worry about my hubby's stress as it's so painful for him too. My parents pretty much deny there's a problem and I understand they're trying to be supportive ... but to constantly hear, he's fine gets frustrating. A health issue, whether is is something more hidden like this or whether it is cancer or anything that really impacts our lives does so of everyone around you, not just the individual suffering. I'll work on making time for me. It seems like any spare minute I get, I'm doing paperwork, researching medical terms ... or trying to keep the housework done. :)

Thanks for sharing and the info. I'm grateful. I'm holding onto hope with my little guy!