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 13 yr old son living with IIH

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PostSubject: 13 yr old son living with IIH   Fri Sep 01, 2017 5:03 am

My son was diagnosed with IIH.  He is 13.  I had to take him out of school at the end of the last school year b/c he had missed so many days.  He coped last week with school and the pain, but has missed all of this week.  

We've continued chiropractic care, have seen 3 different neurologists, he's been on multiple prescriptions and is currently on Diamox and Prozac.  We've tried acupuncture, cranial sacral therapy, and pretty much anything anyone has suggested to try.  We have even switched over to a vegan diet. He's had 2 LPs and we're not convinced a shunt is the way to go for him.  He's not overweight and doesn't fit any of the 'molds' for kids his age who have this, so the doctors are pretty much running out of ideas to help.

We saw a holistic Chiropractic doctor along with his regular chiropractic neurology doctor today.  They did muscle testing and are sure he has an underlying virus that needs to be treated.  One of the supplements they sent us home with is Total VR-X which has a very high amount of Vitamin A.  It says it's in the form of palmitate and beta carotene.  Obviously, we've been limiting his Vitamin A intake as much as possible, so this would probably not be a good thing.

Has anyone treated a virus infection through naturalistic medicine to try and treat a possible cause for the IIH?  He's on Diamox and several other supplements.  The Diamox has not helped at all that we're aware of.

I'd appreciate any feedback or advice.  
Thank you so much
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PostSubject: Re: 13 yr old son living with IIH   Sat Sep 02, 2017 6:09 pm

no, I haven't really done that.  I was tested for XMRV at one point but it was before I knew my symptoms were IIH.  I suspect I have HSV causing an intermittent Ramsay Hunt syndrome (ear pain) and tried Valtrex for awhile but didn't see much difference.  I'm a lot better now since I had jaw surgery, I'm mostly in remission.  

My son also has IIH, he is almost ten and as far as I can figure he's had this all his life.  I'm convinced it has something to do with our jaw anatomy, since I got better with jaw surgery.  we both have improved with treatment of our sleep apnea.  has your son had orthodontia?

My son sees an osteopath for adjustments once a month.  he is much better with this, it seems like it is doing something to improve CSF drainage.  as he gets closer to his next treatment he will sometimes get headaches and his behavior will worsen.  he has autism.  when he was younger and had LPs his autism symptoms would almost go away for 2 days until the pressure re-accumulated.

we are gluten free because eating gluten gives us ICP symptoms.
definitely NO vitamin A!  you could do beta carotene, but even so, high doses are not a great idea.
most docs don't understand this problem, even the ones who are treating it.  many patients don't know what is wrong with them, and people end up with naturopaths.  its a slippery slope.  I had to pull myself off of it and focus on one problem at a time in allopathic medicine, do my own research and figure it all out myself.  it sounds like you are doing a good job trying to take charge of his health care and look at it from all angles, and be his medical home.  just don't get dragged too far down the naturopath angle because it stops making sense after awhile.
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PostSubject: Re: 13 yr old son living with IIH   Sun Dec 10, 2017 7:49 pm

hi Tracy;
how is your son doing?
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