Education issues/how to deal with fatigue at school

[eques33]

Just wondering anyone with teenagers or kids in school that have chiari and have fatigue issues? How is that dealt with at school?  My son was recently diagnosed and really doesn't have any symptoms other than fatigue.  Had him in for fatigue to dr last fall, checked blood work it was fine, so thought it may be sleep issues causing fatigue.  He snores, is restless and just never feels rested. Struggled a lot in school.  Just recently he was diagnosed w/chiari because of a head injury. Appt with NS is in aug. In the mean time he has seen a ENT, to rule out any thing there that could cause snoring and blocking of the airways etc. Will see a sleep specialist just before his NS appt to find out about his sleep issues, possilbe sleep apnea.  He is 13 and taking anywhere from a 2-4 hour nap 2-3 days a week. I know teenagers are supposed to sleep but that just does not seem normal! He is not depressed, is very active in sports, but will just go in and lie down and fall asleep.  It seems to be getting worse. My concern is that we will do the sleep apnea study and see the NS and they will say there is nothing really to do for him and just have to live with it, which is fine we will, don't want to have surgery unneccesarily.  But in the mean time how is he going to function at school?  It all makes sense why he struggled, he would be exhausted and trying so hard but just couldn't function normally always being so tired.  Has anyone else had this issue?  What can they do for kids that need a nap during school? it sounds ridiculous but may be the only way to make it through the day. Appreciate any ideas, suggestions, advice!

[eques33]

thanks everyone,
all such good advice, I feel very fortunate to have good doctors but we are waiting for his appt with NS who is supposed to be a good chiari dr. I have learned so much from all of you and will follow some leads, even if the drs think I am crazy.  Trying to get as much info as I can before appt so I can go in with a bunch of info, ruling out things that might be a possible cause, narrowing down to find some help so he will be able to function as normal as possible.  thanks again for all the info and suggestions, prays for you and your families, Mary

[chadry]

My daughter is 13 and she she naps when she gets home from school. She is tired also. I let her take a nap when she feels she needs it. Besides the chiari she is still growing which I can see. She is the youngest of 8 and I can remember a lot of the kids going through that at that age also. As far as I know they do not have it but they have not been checked either.
I know fatigue goes along with the chiari so I let her relax and sleep when she needs it only I do not let her sleep too long after school so she can get to sleep at night.
You may have to check with the nurse to see if he can at least lay down when he is in school for a short rest if need be. My oldest son was diagnosed with chronic fatigue when he was in high school and he was allowed to rest if he needed to. He didn't want to go and sleep in school but he was allowed to if he had to.
My daughter had an EEG done and everything can beck OK but the guy giving the test laughed because she had to be sleep deprived when she took the test. She had to be up hours before the test so that when she went she could go to sleep. he said he never had anyone fall asleep as fast as her.He said that if her test had shown anything he would have suggested a sleep test right away but that everything came back perfectly normal. He did say that a lot of teenagers that come in can go to sleep pretty fast but not as fast as she did.
I am glad you posted this question because i do worry about her napping sometimes but at the same time I know that it can come with the chiari and the teenage years.
Hope everything goes well with his testing. Do you have a Chiari specialist picked out already?
Chadry

[youngwife]

Hey, there!  

I have a 15 and a 12 year old with Chiari Zero, and my 15yod also has Syringomyelia.  

My older daughter was recently diagnosed with a Vitamin D deficiency that was causing her a lot of fatigue.  So, I would absolutely have this and other things like thyroid looked into.

Also, we homeschool.  There is NO way that they could attend school every day.  It may be an option you may want to keep in the back of your mind for down the road.

IF you have any questions, I will be happy to help as much as I can!

Blessings,

Rebecca

[eques33]

actually I am not sure, will find out, and see about that, thanks so much!  

[selmaS]

Hi...was his thyroid checked....many with chiari also have autoimmune conditions like Hashimoto's thyroiditis...it is often missed doing regular blood tests for thyroid.....if this was not checked....it may have an impact also on his overall sleep health.

"selma"