Hi all,

I live in Hong Kong, and am a 43 year old mom who works full time.

My son who is just 4, was diagnosed with CH when he was three and a half, after 7 hospitalisations with accompanying MRIs, CT scans, lumbar punctures etc etc. He has hydrocephalus and was VP shunted when he was 2, but he was fine after that, but soon after his 3rd birthday he started vomiting uncontrollably, and then the whole crazy hospital trips for close to 6th months before he was diagnosed. He has a great doctor, and so far we have them under control, first with propranalol for around 6 months, and then he had a breakthrough, despite increasing the dosage to the max, so now he is on cyproheptadine, and it seems to be working. But how long can he keep taking this stuff, and can he take O2 or Redbull at 4 years, as I've been reading in some posts? Once the headache starts it can go on and off for a couple of weeks at a stretch. When its on, he is curled up in bed, speechless, wont eat or drink and vomits. When its off, he is bouncing around the house in great spirits and this up and down cycle can on on 3-4 times a day. We have given him paracetamol suppositories, ibuprofen in between and also motilium for the nausea, but nothing seems to help once the attacks start. Nobody I know of in our family gets migraines, so I really dont know how this happened.

Anyhow, it has been three weeks since his last attack and change in med to cyproheptadine, and so far so good.

His attacks are definitely brought on by low pressure/changes in the weather. Whenever there is a rainstorm coming on, he gets them. We try to abort with the painkillers immediately, and sometimes we get lucky, but when they breakthrough, its awful.

Can somebody tell me how they use O2, get their kids to cooperate and do you use RedBull at all?

Thanks for reading! I am not happy to see so many other parents in a similar situation, but I am so glad I found this site.

Oh what a heartbreaking story. I hate reading stories about children suffering this kind of pain. How did they diagnose him with CH's? I have a 4 year old as well and can begin to fathom how they could diagnose them at such a young age. Please don't think I am doubting it, I am just curious. Being a parent and a sufferer, I can only imagine how hard this must be for the both of you. I pray that he was misdiagnosed and has a more treatable (if not cureable) ailment.

Note that this was posted in 2010 and the person has not been online for a long time:

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