He has had 4 LPs in the last 4 weeks, 2 after starting the Diamox, he only ways 90lbs and takes 750mg a day - he was on 1,000mg a day but they decreased it because is PH level in his blood was acidic. He now takes Bicitra to help control that. He still has tingling, can't drink soda, appetite is down, sleeps a lot - does it get better with time? And on a good day, when he feels up to it and tries to play with his friends... it seems the more active he is the headaches come back... could his pressure still be going up when he exercises? It's kind of hard to tell a 12 year old boy to take it easy, on a good day, when he is missing out on being with his friends on the bad days. Any feedback would be appreciated... We still have 3 weeks before we see the neurologist and sometimes the headaches are so bad I have considered taking him back to the ER but I don't want him to have to endure another LP.
My 12 year old son was recently diagnosed with Pseudotumor Cerebri and started on Diamox?
- Posted:
- 16 Nov 2010 by mstrausser1966
- Topics:
- diamox, intracranial hypertension
Responses (4)
Marvell2 Jan 2011
It's unfortunate no one has answered - someone who has seen a patient with this condition.
I don't know what the procedure/protocols are in treating Pseudotumor Cerebri. All I can say is I understand how you feel. It is extremely hard to put your child through all these gruesome procedures ... but sometimes you don't have a choice. I know a child who has leukemia and that child has gone through at least 10 lumbar punctures in 10 months and has had a few bone marrow aspirates done.
It is extremely hard but parents have to "Be Strong" for their children although they see their sick children go through awful times.
Doctors are the best people to get advise from in terms of treatment and as hard as it is parents just have to gather the strength to get their children through these awful times.
Wishing you all the best.
12 Apr 2011
Hello i am 35 i have had icp for the past 5 years no it does not get better intill you get a shunt or stent but they r not fda approved and the is battle is not worth it i think but i take 3000mg of dimox tired and tingley no carbonated drinks peroid he will get better but it take time long time sorry i know that is not what you wanted to hear but just keeping it real he hurts like no one can describe and the pain is over whelming but the lps work i geet them weekly i am in the battle with the ins company i want a stent due to fact that pressures are awalys every week 52 or higer have you had his eye checked yet we go blind from this illinness he need a visaual field study done
winddance...
kaiyan717
24 Dec 2011
Hi, my mother was given tetracycline when she was younger. I was diagnosed with IIH in 2008 at 24-4 months pregnant. I have read that docyciline has been linked to raised intracranial pressure. I took it a month before I was diagnosed and coincidentally a month before I went in remission. Hope my answer helps.
winddancer51
24 Dec 2011
Hey thanks, how old are you now? I was given tetracycline when I was9 days old and looking into this disease now that could have severely affected my son if I went with doctors advice. When my son was diagnosed with BIH they had no answers they had no idea, they just wanted to treat him as a experiment in one way, I did not allow that after the second LP and just frustrate with the medical profession, he went off and played footy three months after his second LP, no medication no doctors, no shunt and has not looked back, he was 12 then and now he is 22 and only recently again decided to do some research into why this would happen to him . Thank you for your reply tell me more about your situation.
24 Dec 2011
My son was diagnosed back 10 years ago with Benign intracranial hypertension, he is 22 now. After his second LP with 2 weeks no answers from the doctors and even the specialists, I was frustrated and angry. They could give me no answers what so ever, they wanted my son to come to the hospital every month, medicate him looking at putting a shunt in. I never took him back to any hospital or doctor after the second LP, three months after his second LP with no other attacks he played football and never looked back. I am only recently now doing some research into this disease and why this did happen to my son, I have stumbled across some information about tetracycline and BIH (now they call it Pseudotumor Cerebri ). I was given tetracycline when I was only 9 days old, were you given tetracycline at all when you were younger or even when you were pregnant. Would love to hear from you on this.
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My son is 10 years old and was diagnosed 2 weeks ago, he has had 1 spinal tap and it was TERRIBLE!!I can not imagine 4! He is taking 750mg of the generic Diamox. The last couple of days he is really complaining about the tingling of his hands and feet, can not drink soda says it taste terrible. He is VERY lethargic :( but he is also a renal transplant patient. Today we went to Children's hospital a 3 1/2 hr drive one way, and they said his BUN was elevated and his BiCarb was low. So now with all the other meds we added Sodium BiCarb 3 times a day. Going back next week to check the optic nerve. Praying that your son and mine will improve quickly!!! And be able to stop this medication.
I am sorry to hear so many youth are now getting this rare brain disease. I have been on Daimox for over 2 and a half years now and I will attest that most of the symptoms do not get better. Or in my case anyways. I would urge you strongly to veiw more information on ihrfoundation.org. One of the main life changes with this diagnosis, medication is you do lose your active lifestyle. I am sorry that he has had to have so many lp's, I have had three since diagnosed. They now respectfully changed the name to idiopathic intracranial hypertension. If he is still having headaches, I would urge you to see your doctor to check his eyes, hopefully with research they can find less invasive procedures to check and monitor csf. I wish you the best and hope you can find a route that helps your son get some of his life back. Bless you both.
My son was diagnosed with benign intracrancial hypertension when he was 12 years old, he is now 22. He had two lumbered punches that was it for me, the doctors could give me no answers, I was so determined not to raise him thinking he was sick, no shunt no medication nothing. All he wanted to do was to play football which he did, he has had no other attacks or any other symptoms ever since, sometimes go with your gut feeling. Sometimes medical and medications are not what is needed. I do have a question to the parents of children with this disease were you administered tetracycline at all when you were younger??? I had tetracycline given to me when I was 9 days old, I am only researching things here nothing of factual evidence. Any help would do?
My son was diagnosed with this disease when he was 12 he is now 22. He had two lumbar punches after experts telling me nothing, telling me to bring him in every month. They had no answers, they had no idea. I did not put my son or give him any medication or definitely no shunt. 3 months after his two lumbar punches he joined his mates to play football and he has never had a problem again, no headaches nothing!! All I knew back then was I didn't want my son thinking he was sick, being told by experts who really knew nothing, treating him as an experiment. Inside me just said no, all I am saying its good to hear all stories and listen to your self. I hope this has helped in some way.