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Are we being treated properly

Posted , 4 users are following.

Guest
Guest

My 15 year old daughter was diagnosed with IIH in November 2010. sad

They did a LP to diagnose, her opening pressure was 40, they then went on to drain some of the fluid away, she was given Acetazolamide 500mg 2xdaily (told to lose weight although she was only slightly over weight) and we were sent home and told to return for a review in two weeks.

We returned for reveiw only to have the doc ask how she was and to be told she required iron tablets and that was it, we were left with a lot of unanswered questions and a sence of what do we do now :? Three months have gone past and she contacted the Flu which seemed to set of an increase in pressure She also had cronic lower back pain on one side (she also had lots of headaches and other horrible symptoms leading up to this latest episode)we returned to the hospital where they increased her meds to 3xdaily and sent her home again however the next day the back pain returned and they said they thought she could have kidney stones and did an ultra sound where it was found to be clear she has had 4-5 episodes of cronic back pain and we dont know when she will be seen by anybody who knows what their talking about again.

0 likes, 5 replies

5 Replies

  • Guest
    Guest

    Posted

    i was put on acetazolamide 3 times a day 8 paracetamol and i was on 8 tramadol a day as well but after nearly a year nothing has been improved it seems as if the doctors dont no what they are doing just a little lost on what to do and just some advice go to the doctors and tell your daughters doctors to test her blood as i found out acetazolamide lowers your blood potassium and my doctors didnt no untill wednesday when i went in and told them thats what it says on the internet so am just waiting for my blood results back to see if any damage has been done. its very stressfull that they dont no what they are doing because if they dont no anything how are we supposed to know and find comfort. :?
  • Guest
    Guest

    Posted

    dear stephanieh,

    my daughter has had her bloods done and they have come back good so that is one good thing, but what i am confused about is that everything you hear about this illness is that it requires regular follow ups and she has never had any apart from when she has had problems.

    And you are right it is very scary when you cant rely on the people that are ment to help and heal you and you have to turn to strangers for support and advice.

  • Guest
    Guest

    Posted

    dear karel

    i have a nurolagist that i am ment to see evry 3 months but i am not seeing him untill april and the last thime i saw him was october. i am glad her blood results are all good im still waiting for my results it says alot about doctors when there is people comeing on this site to ask people questions my doctors are usless and the haspital is no better you need to tell some one to give your daughter regular check ups because it seems because they dont no why it happens and they cant stop it they try and forget about the people with it. but the people with it and there familys cant just for get sad

  • karel
    karel

    Posted

    Dear Stephanie,

    Sorry for the long delay in replying to your comments. My daughter developed kidney stones due to the medication she was on and has been in hosp. She has also been taken off all her meds and the difference is amazing (because alot of her symptoms where her meds) but for how long we dont know she has an appointment with her nurologist tomorrow at long last so hopefully we will start getting some answers to the many questions we have.

    I hope this finds you well karel

  • Hymerkar
    Hymerkar

    Posted

    Have you visited IIH UK? You can find them on Facebook or at http://www.iihsupport.org you will be able to chat to other sufferers. Finding IIH UK has changed my life. When I was diagnosed in 2009 I was given no help, advice or information. But now I have lots of friends who are also sufferers and together we are trying to spread the word of this fantastic support group.
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