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 We are from Perú (south america)

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Mesuder
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PostSubject: We are from Perú (south america)   Tue Feb 12, 2013 11:41 am

hello,
I new here. My little son Ignacio has been diagnosed with IH, doctors told us that he has a "edema de papila" his intercraneal pressure was very high.
At the moment he is well, taking pills for headaches and for his eyes.
We have had very awful moments since october till december but now he is really well but im concerned about what will happen if I stop giving him medicines.
he also has ADD, attention dificulties.
I feel very well to know that my kid is not alone, here in my country I cant find people with this problem.
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Wylee
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PostSubject: Re: We are from Perú (south america)   Wed Feb 13, 2013 5:42 am

Hello Mesuder and a very warm welcome2 to you and your son.

You have found a good place to get support. Children with IIH, like your son, are particularly sad. As an adult we suffer, often in lots of pain. I cannot imagine how it would be for a small child. I hope that the meds will help your son. Having increased pressure on the optic nerve (the papilledema) needs to be watched closely so that vision can be saved. Please make sure he takes his meds. He needs to know how important that is. There is always a chance that the IIH will go into remission. I hope that happens for your son..
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medmisfit
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PostSubject: Re: We are from Perú (south america)   Wed Feb 13, 2013 3:23 pm

Welcome to the group!!! I would encourage you to read and post something in the Families and IIH section. We don't have as many families as we'd like, but there are parents reaching out..hopefully you'll connect with someone.

Otherwise, check out the site and let us know if you have any questions or concerns..we'll do our best to answer your questions and support you through this difficult time.

Take care,
Julie
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Heidi
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PostSubject: Re: We are from Perú (south america)   Wed Feb 13, 2013 5:45 pm

A very warm welcome Mesuder I am so pleased you found us. It's important that your son stays on the medication, because that is what will control his spinal pressure levels, and prevent more swelling and in time should reduce it. Keep a Symptom Log, so that you can keep an eye on whether or not his symptoms are improving or getting worse. This will be a big help to you. There is always a chance he can reach remission so don't lose hope.
We are here to support you and your son, so any questions or worries you have please let us know. We do have a member on our team who has a son of 8 who has IIH and I have asked him to contact you in order to give you some advice.
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PostSubject: Re: We are from Perú (south america)   Wed Feb 13, 2013 6:50 pm

Hi Mesuder and welcome to our community,

I Trust you are well and am sad to hear your story about Ignatio and his diagnosis.How old is Ignatioby the way and when did he become diagnosed with ADD? I would speak to your medical staff about his ADD and question if his behaviors may have been affected by undiagnosed IIH, as the symphtoms of ADD, ie attention span and may well have been effected by his intercraneal pressure being high or low which would effect concentration and patience especially in a young person who is feeling unwell but not necessarily understanding why .My experience of IIH is that my son who is now 9 yrs old was diagnosed at age 2.5 years and had 14 medical procedured including 2 shunts and a subtempoiral decompression which is a piece of skull removed from his temple to allow his brain to expand out of hisskull when his pressure is high. unfortunately he is visually impaired but is an inspiraion to us all as he is a very determined young man to achieve in his life and is also around to support others with IIH.

I think you have recieved great advice already on the forum ie, diary headaches and severity of them and also bathe his eyes in a cold compress as this is apparently really soothing. I would encourage Ignatio to discuss his vision with you daily and maybe let him draw oictured of how he feels as well as chatting about it, and most important if he says tat his eyes are feeling worse or his vision is suffering go straight to your medical staff, dont wait until it is too late.

I would also discuss with medical staff if he is medicated for ADD if this medication id required now his IIH has been diagnosed as his headache medication may assist his attention span and moods and chemical balance in his brain.

I hope this advice helps you , if you have any questions please ask and good luck.

AD
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Mesuder
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PostSubject: Re: We are from Perú (south america)   Wed Feb 13, 2013 10:39 pm

Thank you for all your answers.
You all make me feel well because you understand me, here in my country I didnt find any person with IH.
During the last two years doctors told me that he has migraine, last october he had terrible migraines with nauseas and he had to stay in the hospital, he satyed for 4 days, then he was better and then again he was awful and stayed for a week there, and so on... after a month he was better, but then he started having double vision, and one of his eyes was like paralized. I took pictures to have a sequence of his eye progress.
He had many exams and doctors said that he has edema de papila in both eyes.
Now that we are in february with the corticoids, and pills for glaucoma and Valproato he is really well, doctors told us that his papiledema is better but there is a 30% for his recovery, but he is feeling well, some days he has headaches or nauseas in the mornings but not to much. His vison improved again, he doesnt need to use glasses and he can see now very well.
Im writing a diary because doctors told me that this can happens again and this will help me and maybe others here.
he was diagnosed with ADD when he was 4. He is not hyperacyive but he gets easily distracted, really distracted.
He was born by "in vitro fertilization"
Thank you so much for your words!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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