Oh I hope not....

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Posted by Karen ( on June 26, 2000 at 08:37:19:

In Reply to: 4 yr old w/ headaches posted by Sherri Owens on June 25, 2000 at 19:22:23:

I really really hope it's not clusters that your little one is having.

My son, who will be 9 in a couple weeks, was diagnosed with migraines around the age of 5. About 6 weeks ago his headaches took on a whole new and different tone.

We visited the ER a few times and when one of the doctors put a call into Stephen's neurologist she pretty much diagnosed him over the phone as having clusters. The neuro in the hosp diagnosed him with chronic paroxysmal hemicrania, a very close relative to cluster headaches who started him on indomethacin. It did nothing for him. After seeing his pediatric neuro she definetly diagnosed him with clusters. She put him on a 30 dose of predisone whiched helped a lot but did horrible things to his moodes, she then put him on Depakote which is used to treat seizure disorders, Depression and Migraines and said they have recently had good success in treating clusters with it. He could not tolerate the pills and was one of the 1% who got chest pains and heart palpitations. So she switched him to the syrup and lowered the dose. Before trying this med we found out that lowering Stephens whole body temperature took his attacks away. So we have been doing that instead of medicating him so far. He goes for his MRI this Wednesday and back to the neurologist on Thursday for a follow up.

My advice is to set up a appointment with a pediatric neurologist and hopefully you can find one that specializes in headaches. I wasn't looking for that in particular but was lucky to find a pedi neuro who specializes in headaches.

We are just starting this roller coaster with CHs and I feel for you and know how horrible it is to see your child suffering so badly. Email me if you want to talk. I am here for you as a fellow Mother and understand that your heart is breaking for your child.

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