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 Family members with IIH?

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Sophiasmom
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PostSubject: Family members with IIH?   Fri Jun 15, 2012 9:23 pm

hi all. my 4 yr old autistic son just had an LP this morning, and his intracranial pressure is elevated. we got it after my recent diagnosis of IIH, knowing how similar his anatomy and predisposing factors are; we both have the same craniofacial features and both have obstructive sleep apnea. He also has had intermittent neurologic symptoms and other features since he was born that would be consistent with IIH. I am sick to think that he has had this since he was born! My neurologist recommended we do the tap, but my son's neurologist discouraged me and told me that IIH is not familial. I am wondering what the rest of you have experienced; do you have family members who also have IIH? who might have it? I still wonder if the only thing rare about this illness is the likelihood of having a spinal tap. Everyone thinks it is so invasive, but really, it's not so bad.
Deb
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PostSubject: Re: Family members with IIH?   Fri Jun 15, 2012 9:55 pm

Hi Deb, I am so sorry your little boy has been diagnosed with IIH, it must be so worrying and frustrating for you. hug My sister was recently diagnosed with IIH, 24 years after I was. I have often wondered if there could be a risk of my own daughter having it, and as yet at 23 she hasn't shown any signs although she has had Acute Mastoiditis, which is known to trigger it, and she has Peri-occular migraines, which were mistaken for IIH at first.

I know that there are cases of it being in families, and our own co-Founder and her Mother have IIH. Hopefully the ongoing research will be able to correlate whether it is a genetic disease or not.

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PostSubject: Re: Family members with IIH?   Fri Jun 15, 2012 11:41 pm

Oh Deb, how I feel for you. I do hope that the docs find that maybe it is something less challenging than IIH. For an autistic child, I would suppose it would be so difficult to explain what they are feeling. But maybe having this diagnosis the docs can help alliviate some of the neurological symptoms (it worked for me!).
Wishing you both only good news!
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PostSubject: Re: Family members with IIH?   Sat Jun 16, 2012 4:36 am

well get this: his neurologist says he only uses Diamox if the pressure is greater than 250; my son's pressure was 225. but I have significant symptoms that have responded to treatment from pressures of 220-230, and my son has had multiple symptoms since age 2 months that to me are explained by the ICP. and he has AUTISM! why wouldn't you want to treat that??? I could tell you all so many stories about idiot doctors......
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PostSubject: Re: Family members with IIH?   Sat Jun 16, 2012 4:46 am

your doc needs to learn to think outside the box.
can your son be seen by someone else?
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PostSubject: Re: Family members with IIH?   Sat Jun 16, 2012 5:06 am

I am working on a second opinion. worst comes to worst, I have plenty of Diamox for myself.....

it is scary I guess, maybe it hasn't sunk in completely. I am grateful to have something to treat. autism can be so frustrating. and I am so convinced that if I can completely treat the sleep apnea, that I can somehow cure the IIH. they say it's not curable but I am sure going to die trying.
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PostSubject: Re: Family members with IIH?   Sat Jun 16, 2012 5:17 am

deb, I think the connection there might be that many obese people have sleep apnea. many who have iih ate obeese. have not read any reports at all tieing iih and sleep apnea directly.
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PostSubject: Re: Family members with IIH?   Sat Jun 16, 2012 7:06 am

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my son and I are not obese. I have gained weight in the last year but when I started "crashing" I lost 40 lb and was very thin for me and felt terrible. both my son and I get better when you treat our sleep apnea. we have mild sleep apnea that is easily missed by regular sleep labs. we had to go to Stanford for diagnosis. it is the obese who have worse sleep apnea and can be diagnosed by regular sleep labs. it is easy for me to imagine that those with 1) mild sleep apnea and 2) IIHWOP can be completely missed as no one wants to tap them and no one realizes they have sleep apnea. I had to press and dig to get myself and my son diagnosed. It is completely conceivable to me that IIH is NOT rare, it is just impossible to diagnose. and the same with mild sleep apnea. I know people who had bad "migraines" until they were put on Topamax...... but they were never diagnosed with IIH.....
maybe those with more significant IIH are obese because the IIH prevents us from exercising? and the sleep apnea is worse because of the obesity? there is probably another piece to this, related to cranial anatomy or hypercoagulation, but seeing this in my 4 year old I am thinking it's just not quite that complicated. I think it is more common than we imagine, and there is something obvious being missed here.
Deb
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PostSubject: Re: Family members with IIH?   Sun Jun 17, 2012 3:07 am

Hi Deb. I need to quit trying to reply from my phone: too many spelling errors. Sorry folks.
I spent the day online looking up IIH and OSA. WOW! Some of the reports are 100% convinced while others seem to pooh pooh the whole thing. Deb, I think y'all are on to something. We need to include info on this, especially for the newbies. Thanks for opening my eyes.
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PostSubject: Re: Family members with IIH?   Sun Jun 17, 2012 4:51 am

you're welcome.
thanks for listening!
I've been sitting here wondering why I see something no one else seems to see.

also, since my son's tap yesterday, we have noticed significant improvements in his autistic behavior! like, major improvements.
so, is it just him, or could it be that all autistic kids have IIH? 1 in 53 boys is NOT RARE. but no one wants to tap a little autistic kid.
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PostSubject: Re: Family members with IIH?   Sun Jun 17, 2012 5:54 pm

Deb, I'm also sorry to hear about your sons' diagnosis, but you must be so encouraged that so many symptoms improved with LP! I wonder if the IHRF or Kiddos programs would have any more info for you? I know other members have called & spoken with doc at IHRF..maybe they could give you further insight.

Btw, I gained a lot of weight after my IIH dignosis & unable to do anything to lose it..I was diagnosed with mild sleep apnea just a couple years ago..it's all so interesting, & frustrating. I think you may enjoy the DVD of the 2011 IHRF Conference..you'd probably get a lot more out of it with your medical background. They shared a lot of research, findings, & ideas..maybe there would be something more there.

I hope you're able to figure it out..good luck!
Julie
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PostSubject: Re: Family members with IIH?   Sun Jun 17, 2012 8:06 pm

thanks Julie, I did just order that DVD set. I get really obsessive about researching things like this. I actually am developing a theory for why only some of us get IIH with OSA. I am almost published with a paper that would be preliminary to that theory, so the groundwork is there. I think we may have a mutation that allows ICP to increase more significantly in the presence of OSA.

I don't see anything online about Kiddos and IIH? I am registering with the genetic study on IIH thru Ohio State. perhaps I should call and talk to the docs at IHRF but frankly doubt there will be much there. I have been to 3 biomedical autism conferences now and the correlation with what is seen in autism and OSA as well as hints to IIH is striking but the autism researchers have not made the connection. if they haven't, I doubt IHRF has. I'm writing a paper on that too. stay tuned; the pressure in my brain is just squeezing the ideas out of me!
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PostSubject: Re: Family members with IIH?   Mon Jun 18, 2012 6:28 am

I think the telling thing for you all is that I found my way to my diagnosis of IIH via my diagnosis of OSA. I kept going back to my neurologist because I was having so many neurological symptoms, and kept telling him that something really bad was getting triggered in my brain when I slept without airway control, and I would be better as long as I treated my OSA. and this trigger could occur with only 20-30 minutes of unprotected sleep. he FINALLY said, oh by the way, OSA can raise ICP. that was a galvanizing moment for me, as everything just fell together in my mind and I knew that's what was happening. I realize now that if I had found the IIH first, I might never have found the OSA, and might have ended up with a shunt. with treating the OSA which is a major trigger, I have been able to eliminate my menstrual migraine pattern with only 62.5mg twice a day of Diamox.
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PostSubject: Re: Family members with IIH?   Mon Jun 18, 2012 7:46 am

Deb, have you been in contact with Dr. Linda Gray Leithe at Duke, yet? She is my NeuroRadiologist and is considered an expert in spinal fluid related things. This whole relationship with OSA sounds like something that she may already know and/or be interested in researching.
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PostSubject: Re: Family members with IIH?   Mon Jun 18, 2012 12:03 pm

ive only heard of two cases of sister that both have iih one set of sisters are under 10 and the other set of sisters i think where in there 20's when diagonsed

in both sets of sisters one has it milder than the other

wish i knew more and sorry about my spelling xx


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PostSubject: Re: Family members with IIH?   Mon Jun 18, 2012 5:20 pm

Deb, I think IH Kiddos Secret Pals is a support network for kids w/ IH, but I wondered if anyone there would have a similar experience. I've just seen posts for Twitter, FB, and personal blogs..then Heidi's blurb about them here..it was just a thought.

I would be cautious about OSU. They passed me around for three years telling me nothing was wrong w/ my shunt. My neurosurgeon presented at the IHRF Conference, so I felt fairly confident. I ended up at Cleveland Clinic b/c none of the pain management techniques were working. They looked at my OSU MRI's and told me I had obvious signs of low pressure/fluid. They also told me they haven't done LP's for overdraining in years b/c they're not accurate, but OSU used my average opening pressures as an excuse not to explore any other options. They're also the ones that didn't know what to do w/ me in sleep medicine b/c CPAP gave me a headache, so we're taking a break from treatment until shunt issue resolved. Cleveland Clinic ended up having to replace my valve and catheter..It seems OSU is still years behind, so wanted to get you a heads up.
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PostSubject: Re: Family members with IIH?   Wed Jun 20, 2012 4:56 am

thank you for all the information, all of you. I am resisting getting involved in Facebook so cannot view any pages that require login. but it's good to know that is out there. as far as OSU goes we will just take part in the genetic study, we won't be patients there.

I just found this:
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apparently mild trigonocephaly, a minimal craniosynostosis of the metopic suture, can cause ICP. I learned in my training that isolated suture closure does not do this; only complete fusion of all sutures can do this. well, my son has a palpable ridge; he has this. and he inherited the skull that I, my brother and my mother have, and we all have symptoms. so now I have to decide if I should just take him to neurosurg. ugh.
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PostSubject: Re: Family members with IIH?   Wed Jun 20, 2012 4:06 pm

Ugh, it's so much to process! I guess it wouldn't hurt to have a consultation w/ neurosurgeon..you don't have to take thier advice, but might answer some questions if you know a good one.
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PostSubject: Re: Family members with IIH?   Thu Aug 09, 2012 9:41 pm

Deb,
I am also sorry to learn about your son's high ICP. I am beginning to think that it is familial bc I know I had a grandmother that was diagnosed with it in her 60's bc she had a CSF leak through her nose from a hole that had developed bc of the high pressure. I have read many stories about people in the same family developing symptoms of IH. I think it occurs more often than we realize.
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PostSubject: Re: Family members with IIH?   Fri Aug 10, 2012 12:24 am

hi bb; yes I totally agree. I am sure my mother has it. and we had a great aunt who was quite ill. my mother has been ill since she was 17 and at age 70 still none of her multiple doctors have figured out she has IIH. she has the same symptoms I do, but worse. and neither I nor my son would have been diagnosed if it were not for my tenacious digging and research. I had to ask for a spinal tap for both of us. I know there are at minimum thousands, maybe hundreds of thousands of people out there with this problem who have not been diagnosed. if you get visual problems or papilledema, they figure it out. if you don't, which many don't, it takes a tap and no one wants one and the docs hesitate to suggest it, obviously. I actually don't think this is a rare disease at all.
Deb
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