DebbieKos wrote on Jul 15th, 2010 at 9:16am: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.
Thanks for reading!
Hello DebbieKos, glad to meet you and I am soooo Sorry it is under these circumstances. I know what it is like to watch your child go through this kind of pain as my own son went through something quite similar and was diagnosed at 2 years old, he's now 21.
Read everything posted above and make sure to get in touch with a GOOD Pediatric Neurologist. Ask the Neurologist about Oxygen use for your child, and Imitrex to help abort the attacks when they come.
I'll share with you an old military recipe that is safe for a child (but go easier on the Tang, you'll understand that in a minute) that my Dad shared with me when my son was diagnosed. Discuss with your son on his terms/understanding about when he feels an attack coming on so he knows and you know what he is feeling. When he feels an attack coming on or you know that the air pressure is going to Drop or rise quickly Get him to down a Glass of Gatorade and a Half a glass of Tang (tang is very acidic so be careful about using it more than the Gatorade). This is an old military trick used to help kill or avoid a migraine/pressure headache hit. If nothing else regular intake of Gatorade did help diminish the number of attacks my son had and hopefully it will help your son too.
Hot or cold depending on your sons preference (this will be trial and error, just keep the lines of communication open) moist/wet clothes to the back of the head or where ever he wishes you to put it. Note for Pressure related headaches hot usually works better and place the cloth at the base of the back of his skull, you may have to keep reheating the cloth. Make sure you ask him if it's too hot or if he needs it hotter.
Last but not least pay attention to your childs diet to see if he has any food related triggers such as; any chips with MSG (Mono sodium glutamate) this is also in some processed meats, peanut butter and chocolate combinations, and soy products. I used to have a list somewhere, I'll see if I can find it for you, but your pediatric neurologist should have one in a pamphlet for you to read.
Note: CH and Pressure related headaches are different and need to be treated differently. My father, my Son and I get Pressure headaches, CH and for my son Migraine related headaches, you can tell by the feel of the headache that they are
WAY different. Another reason to continuously talk with your son about what he is feeling so you know better how to help him through it. It will be difficult at first and frustrating for you both while you and he figure out how to communicate the different types of pain he'll be feeling and he learns to differentiate the two types. Just be as loving and as patient as you can be.
I hope this helps, I know how horrible it is to watch your little one being tortured this way. {{{Hugs}}}
Best wishes and keep us up to date.