Hi there.

I have come looking for information and guidance for my 8 year old son, TJ.  I understand CH don't normally happen in children from my reading. But I really think the symptoms fit him.

Short history...

Summer of 2007 right after his 7th birthday, I was out running errands with all three kids. Out of the blue TJ began shrieking hysterically that it felt like there was a 'big hot shot (his word for needle then) going into his eye' he was grabbing his head, screaming and rocking back in forth in extreme pain. It was shocking to see my child go from normal to pain like that.

He had eye problems since he was two. And had strabismus surgery on both eyes when he was three. Since he was screaming about his eye I just assumed it was some horrible eye problem. The intense pain was gone in about 30-40 minutes I would say. (We went home and gave him a cold wet washcloth to hold over his eye why he moaned.)

Called the opth in a panic. We were seen asap. Doc spent a long time looking and declared nothing wrong with the eye. After talking to me and finding out my husband suffered from 'migraines' (4-5 a year) the doc thought this was the start of migraines. He urged me to see a pediatric neurologist.

Okay, bad mommy moment here. I was resistant to seeing the neuro due to a bad experience with one when my dd was young. The doc had wanted to start heavy duty anti seizure medications on a child who had only had 4 seizures... and 2 were febrile. I was gun-shy with our bad experience I think.


Anyways, TJ proceeded to get these sharp intense pains over the course of about 8 weeks. I'd say maybe one every 8 days or so. Always about the same time of day (1-ish) always the same eye. Always intense pain where he was just miserable and rocking or pacing. Sometimes was gone in as little as 20 minutes, never longer than 40 ever. Pedi said 'some kids get headaches' and 'give him Motrin.'  Then they just went away.

*I should note that during this time  of headaches he was having something like nightmares/night terrors. He wasn't awake all the way for sure. But he'd wake up crying out in obvious pain... but then would fall back asleep. My other kids did suffer night terrors so I thought this was a variant of it?

Well, it's Summer again. And he's had about 4 of these headaches again now. He's a bit older and describes them now as : BIG burning hot needle either pushing in on the eye OR pushing out of the eye. Sometimes hurts other parts of his head. Again: gone quickly. Never more than 30 minutes this Summer.

They don't happen often. They are gone quickly.

I don't know what to do for the kid!! He is such a good sport about them. Yesterday we were out running errands and he calmly announced 'I'm getting one of those headaches, Mom!' And then he leaned over and starting rocking in his seat pushing against his eye as hard as he could.

These episodes suddenly brought to mind TJ as a toddler as well. He would get raging ear infections that would take weeks to clear up with multiple drugs. He was literally hit his head on the floor and say 'Stop! Stop, make it stop!' I always assumed it was the EI that was hurting his head. Now I wonder.

Anyways, do you think these headaches fit CH? When I read the description of CH for the first time recently I yelled 'OMG that is IT!!' Obviously it's not as severe was many of you suffer.  But I do hate seeing my kid go through this.

So, do I need to get him to a pedi neuro you think? And FWIW I am quite sure dh gets these as well. During his 'migraines' he is often pacing and moaning with pain. Laying down does not help him at all usually. Last time he got a bad one I was seriously thinking he needed the ER he was in so much pain.  Our GP gave him Imatrex and it  eventually helps... I guess.

Okay, well, that is my long winded history. Thanks so much for any help and guidance. I would REALLY appreciate it.

Thanks so much!  I have a call into the pedi for who they would prefer us to see. We'll just take it from there.  The more I read the more it fits. The ONLY thing that doesn't fit is that he will not get them daily... it could be a week before another shows. Sometimes it is the next day though. (I found my journal I kept last Summer finally) At the most he had three days in a row. Then it was back to weekly.

But EVERTHING else fits. Even the sleep disturbances I am betting.

Thanks again... I look forward to learning lots to help out my guy.

I think you should definitely keep your neuro appointment just to rule out something more serious (like a brain tumor), but otherwise, an informed pedi internist should be able to prescribe something to help.

As you have probably already read, Oxygen is a viable treatment that aborts headaches in some sufferers in just 7 or 8 minutes.  You shouldn't wait 3 months for an O2 scrip if you can convince a pedi to get some now!

I had my first clusters when I was 11 or 12, and didn't get diagnosed until I was 22.  I wish you son the best of luck.  And your husband, too!

Hi there Beach.

I have absolutely nothing usefull to say, as all the others before me have already. Just wanted to say how horrible this must be for a kid of that age! In my thoughts I'm with him..... let me tell you, I wouldn't wish these headaches on my worst enemy let alone an innocent child.

Wow, the Beast really is an indiscriminate SOB  .

Here's wishing the boy will be helped soon from the Netherlands.

Pascal.

Hey! Thanks for the replies. Bad news/good news in a way... TJ wrecked his bike on Sunday. Even with his helmet on properly he ended up with a concussion.

Since he was throwing up repeatedly and so dizzy he could not walk we went straight to the ER and they got him in promptly for a CT scan. No bleeds or fractures. Totally 100% normal. So, that was good. He obviously had a concussion and we are fairly certain he lost consciousness for at least a moment or to (hard to say we were not out there with him I was putting up groceries when he wiped out) but he said he sorta 'woke up' and was on the ground.

He's still REALLY dizzy and carries around a little barf bucket with him all day. They said no PE, no bike, no skate, no NOTHING for at least 6 weeks. Wed his symptoms got worse instead of better and we went to see the pedi. She noted some subtle short term memory loss I had not noticed.  BUT she told it was totally normal and would resolve.

So the bad news is my kid has a closed head injury... good news is the CT was clear and we'll probably get in to the neuro faster now.  Now I'm just hoping every second he won't get that awful painful headache on top of his sore head and dizziness.

Fingers crossed.

And thank goodness for helmets. If he didn't have that on... I shudder to think the damage that would have happened.

Hello, im sorry to hear of your sons pain, im 40 and its tough for me to deal with it sometimes, so tell TJ he has a new friend and his name is coach bill.