Thanks for all of the info that you all share!  Our son is 12 yrs old and has had four episodes since mid-January.  He has been episode-free since April 27th!  Ironically, while the doctors (Dupont and CHOP)  think that it could be KLS, they still tested him for other health issues since heart problems run in our family.  They found that he had two abnormal tests and one specifically could be helped by just taking Folic Acid and B12 vitamins.  He hasn’t had an episode since taking these even though we didn’t think it was related.  I noticed that another person noted the same odd test results in a prior forum note.  A recent magazine article also discussed problems with B12 defiiciencies which have some similar symptoms to KLS.  Just something to mention if you’ve never had this checked.  Thanks again to all of you!  You got us through some rough months!

PAparents - 22 June 2009 09:40 AM

Thanks for all of the info that you all share!  Our son is 12 yrs old and has had four episodes since mid-January.  He has been episode-free since April 27th!  Ironically, while the doctors (Dupont and CHOP)  think that it could be KLS, they still tested him for other health issues since heart problems run in our family.  They found that he had two abnormal tests and one specifically could be helped by just taking Folic Acid and B12 vitamins.  He hasn’t had an episode since taking these even though we didn’t think it was related.  I noticed that another person noted the same odd test results in a prior forum note.  A recent magazine article also discussed problems with B12 defiiciencies which have some similar symptoms to KLS.  Just something to mention if you’ve never had this checked.  Thanks again to all of you!  You got us through some rough months!

Yes. My daughter has evidence of functional deficiencies of B12 and folate. She also has the MTHFR genetic glitch.

My daughter went a few years from one 3-week episode before having another. Then they just got more and more frequent. But she is 21 now, and just has some odd days or half days of sleeping. But because she ALSO has another sleep disorder, it is hard to tell which is what.

Naomi,  just looked at your note from July 6th and you mentioned that your daughter was also B12 and folate defiicient.  Also, you mentioned the MTHFR genetic glitch.  That was also found with my son!  They said that it would’ve come from both me and my husband.  His neurologist at Dupont found that it would all be interesting if these items were related to the sleep syndrome!  My son has not had anymore episodes since his four original ones but every time he gets overly stressed or overly tired, I worry.  He had a slight cold recently and since it was the first one since he had been sick, I was certain that it was going to start it all over again.  Just a little paranoid!  Good luck and God Bless!

PAparents - 13 November 2009 10:01 AM

Also, you mentioned the MTHFR genetic glitch.  That was also found with my son!  They said that it would’ve come from both me and my husband.  His neurologist at Dupont found that it would all be interesting if these items were related to the sleep syndrome! 

Hmmmm… so how can he KNOW it is not related when it has not been studied? I mean - how many kids actually get the genetic test!!??!!

So maybe it is… and maybe it isn’t. And maybe it is an accumulation of little “glitches” and this is just one in a complex puzzle…

You are right that they could be related.  Did your doctor suggest doing anything related to the MTHFR (sp?) genetic thing?  Though my son hasn’t had an episode since May, and the doctors thought that it may have passed since his last episode was very mild, he did tell me yesterday that he has felt it slightly the last few days but is hoping it will go away since it is so mild.  I’m hoping, but my stomach is a mess worrying about it.

We are going today to a nutritionist based on several posts indicating that vitamin deficiencies may play a part in this.  I’ll mention the genetic piece too…thank you for giving this information.

PAParents…I tried sending you an email through the system but I got an error message.  We are also in Eastern Pennsylvania and went through CHOP for the diagnosis.  Feel free to be in touch.  I truly hope your son is able to avoid future episodes!

PAparents - 18 November 2009 05:12 PM

Did your doctor suggest doing anything related to the MTHFR (sp?) genetic thing? 

Yes. He suggested taking methylated cobalamin (B12) and methylated folate (B9), and to that end had her on Metanx (prescription) for a while, but you can get the 3 ingredients of Metanx (it has the abobe 2 plus B6 in the form of P-5-P) over-the-counter nutritional supplements.

I don’t think it did anything for her KLS though. For my daughter, I think hormones helped her a lot.

Mom in Philly…..I’d very much like to get in touch with you too.  I also tried to send a note to you through this site last night.  I’m not sure if it went through or not.  We thought my son was done with all of this but he is in day nine of another episode.  Would like to compare notes.  Let me know.      Still not sure if it is KLS but hard to get through.