My 12 year old son was diagnosed with CM during an MRI for a concussion 18 months ago. He has been asymptomatic. Now he has a mystery illness and I don’t know if it is related. For the past year he has suffered from cyclical vomiting. He throws up 3-5 times a day for 1-2 weeks at a time. These spells happen approximately every 6-7 weeks. He feels horribly nauseas and is extremely exhausted the whole time, sleeping up to 18 hours a day. The fatigue never left after the last bout a few weeks ago. He is sound asleep on a bench every afternoon when I pick him up from school and he falls asleep any time we are in the car. He complains of a chronic spot on his field of vision in one eye and periodically has pain in one ear. He has a blinking tic at times. He is extremely bright but my husband has felt like he is not tracking as well lately. No balance issue, no headaches, no muscle weakness. He is on Zoloft for anxiety and we are going to back off his dose to see if it helps the fatigue. However, his doctor does NOT think these symptoms are anxiety related. PLEASE, PLEASE help with any insight you may have!!!
Thank you so much for responding so quickly. I am at my wit’s end. We were referred to a pediatric GI specialist in April and he tried a med for possible abdominal migraines. It did nothing and our next appointment isn’t till July. The next step was going to be to refer to a neurologist. Our pediatrician didn’t think we should wait so she is ordering another MRI and doing the referral to the pediatric neurologist. I am hoping it doesn’t take long to get in there!
I'm soo sorry that your child is going through all of this!! I totally agree with the other comment, don't stop until you get the CORRECT answer..not just an answer to make you quiet & leave the office. Some doctors these days just do not care or have too much going on to be patient & listen to everything that is going on. I, myself went to a neurologist that was unfamiliar with Chiari & was unsuccessful. The day I went to a specialist who is very familiar with Chiari was probably one of the best things I've ever done. He understood everything I was going through & was willing to help every step of the way. If you are able to go to one, I'd totally recommend it, even if it's a little further away...the travel will be well worth it!!! **GOOD LUCK**
I completely agree with Beeba. A NS that knows about Chiari is the way to go. They will order any tests that your child needs. If you go to a NL they may order tests and you don't want a kid to go through duplicate tests. For years I was told I had Abdominal Migraines before I was diagnosed. There are great doctors out there who will help you listen to you and take care of your child the way he needs to be takin care of. I have a son the same age he doesn't have Chiari but he does have Type 1 Diabetes. I know how helpless you feel when it's your child. The key is the right doctor. I will pray for you and your son. Good luck and we are here for you.
I come with a strong bias against nl's. Please request a referral to pediatric ns who really knows chiari. Let him tell you it is unnecessary. Please don't put him through a bunch of tests because they will. You already know he has this problem let's get this cleared then go through all the other ologists that they will send you through. I have been down this road and I am a big girl with my own voice. I can't imagine being a kid getting dragged all over looking for chickens when you hear ducks quacking. I know you are new so spend the day researchIng. I don't get why they see a problem then they decide to start ruling out everything else. You know he has this problem.
Wow - I cannot thank you all enough for your warm welcome and comfort. Although my son hasn't shown many of the typical symptoms, I am learning more as I go. My son has strabismus, and I see that it can be related. My son's has gotten significantly worse in the past few months. I also see that excessive drooling in babies/toddlers can be a symptom. Oh my goodness, we called my son "drool boy" when he was little - it was so out of control. I see that sleep apnea is common with Chiari and I am wondering if that may be what is causing his extreme fatigue during the day. Once again, I feel like this is such a puzzle and I am trying to put each piece together. Thank you so much for being here with me as I go!!!
I hate to be the bearer of bad news but these all sound like Chiari symptoms to me I am no expert though,but if I were you I would demand more tests from a neurosurgeon,because these symptoms sound all too familiar my daughter had similar symptoms and was diagnosed with Chiari 1 Malformation(sever) in 2009 she had decompression surgery but she still experiences weird symptoms like she had before ,but they are not constant ,but they are bad enough that I can tell she is miserable ,but so far the MRI's she has had do not reveal any further problems so far,but I worry constantly about the recurrence of Chiari complications,because seeing her suffer and knowing I can really not do anything to help her is unbearable,I sure hope that your son gets the help he needs before more severe complications occur,because if she had not had decompression surgery when she did she would most likely be paralyzed or worse,although surgery is not a sure it can help prevent further damage from the Chiari ,hopefully if the N.S. is well qualified,I wishe the best for you and your son ,God Bless!.