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IIH in Child advise

Posted , 5 users are following.

michelle16616
michelle16616

Hi Everyone,

I am new to all of this, I was hoping for some advise. My 9 year old has been diagnosed with IIH. The diagnoses was confirmed by a MRI recently. 

The headaches just come and go. Sometimes she is having headaches everyday. We dont seem to be able to find a trigger. So far we have seen a peadiatrican. They are suggesting the next step of a lumbar puncture. I am concerned putting my 9 year old through this. Should I get another opinion ? Should we see a neurologist?  What medication should I use?

We have been advised to take Q10, B2 and nurofen. 

Could anyone offer my some information please. 

0 likes, 3 replies

3 Replies

  • craig85595
    craig85595 michelle16616

    Posted

    Hi Michelle sorry to hear that. We are new to this as well. Our daughter is 15 and had headaches of differing pain scale for 6 months. She has had two MRI scans which were clear. Currently she is on amitripallen and gabapentan.She is off school currently because her head is so sore.I hope you can get some answers soon.

    Craig

  • z00762
    z00762 michelle16616

    Posted

    Sorry to hear that michelle , i'm 18 year old and i have the IIH as well.  I've been through this for about 6 months and i'm waiting for my next appointment for the lumbar puncture. I read a lot about the lumbar puncture before scheduling my appointment and to find why it's important and how it's related to the IIH .I found that is really important! They will now from the lumbar puncture how the pressure is strong and several things. My doctor told me not to take medication before taking the lumbar puncture. I recommend you to take an appointment with a professional doctor and ask her several questions about the Lumbar puncture.

  • LP1981
    LP1981 michelle16616

    Posted

    I am 35 years old and have had IH for 2 1/2 years. It is exhausting dealing with the pain, medications, doctors appointments, etc. I'm sorry your baby is dealing with this.

    Like I said I am 35 and have zero experience with kids that deal with this. I currently take 3 diamox a day. It helps to slow the production of cerebral spinal fluid and it is a diuretic. I also take a very low dose of keppra (ehich helps w migraines) and the past few months my neuro started me on a magnesium supplement stating that there are recent studies that show it helps w migraines associated w IH.

    I had a lumbar puncture done last August. The procedure itself did not hurt. The worst part is the punch you feel when they numb the area. The actual procedure did not hurt. I immediately felt relief from the pressure. However, i the. Had a small headache located in my forehead, i think from just the lack of pressure.

    If you go forward w the lumbar puncture, please make sure to follow the advice to a T for afterwards. Lay flat completely for the hole to seal. I did as much as I could but I had post lumbar puncture headaches and they are exponentially worse than the IH headaches.

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