specific board. Sorry about that!

Well, I did an intro about my 8 year old. I suspect he has CH that started at least last Summer. But I wonder if they may have started when he was a toddler. He would slam his head on the floor and say 'Stop!' but we thought it was due to bad ear infections. They stopped when we got the whole ear thing finally taken care of.

I won't run away, honest. I need good solid advice from those that have BTDT. I had him answer the 'cluster quiz' and he answered most of the cluster symptoms as 'yes.'

Thanks for any info!

My only advice - get him to a pediatric neurologist or headache specialist.

wrote on Jul 31^st, 2008 at 10:14pm:

My only advice - get him to a pediatric neurologist or headache specialist.

I second that!

We are not doctors!

I do have a call into his pedi to find out what pedi neuro they want me to use.

I was just looking for resources here since the symptoms of CH fit really well.

Thanks.

Any treatments he gets should come from his pediatrician until such time as he's seen by a neurologist. Treating without a proper diagnosis is begging for trouble.

Treating without a proper diagnosis is begging for trouble.

Yeh, I know. The pedi informed me they were 'just headaches' or maybe 'migraines like his dad gets' and she didn't like the idea of medication other than motrin. She kind of made me feel dumb for bringing him in for these headaches. I did not know about cluster headaches at the time or I would have asked her thoughts about that specifically.

I do not feel she is able to handle his issues (obviously) as I was dismissed so out of hand about it. I have spoken to the pedi neuro office since my first post. Their wait is three months. I plan to call daily to be put on the list to call if there is a cancellation... hoping we don't have to wait three months to be seen!

I really was just looking to connect with other parents going through this... just some support... networking... whatever.

Sorry I wasn't more clear... I asked in my intro post about getting to a pedi neuro but I think it was more of a needing validation that I wasn't crazy for knowing I needed to do that.

Anyways, thanks. Maybe I'll get some warm fuzzies after I see a the doc?  :-/

Sounds like you may want to look for a new pediatrician, too. She seems like a real quantum b!+ch.

Quote:

I plan to call daily to be put on the list to call if there is a cancellation... hoping we don't have to wait three months to be seen!

That is exactly what I would do......keep calling everyday.  Arm yourself with as much info as possible when you go in to see the nureo.  If the Dx is clusterheadaches, I would also forward that info to the peditrician. If she is not receptive......fire her!!  This condition is painful and frustrating enough without having to deal with Dr's who are unwilling to educate themselves with your help.  

Sorry to hear your little guy is in pain.  Good luck and please keep us posted.

Beth

Well, we ended up in the ER yesterday due to a bike wreck the poor kid had all by himself on our sidewalk. Even with his helmet on he sustained a nasty concussion.

We are back home but he is still really dizzy and sick to his stomach.

The good news is we have a CT scan and all is clear there.  I mentioned his headaches and the ER doc said the neurologist didn't see any abnormalities on the CT scan that would cause that. They even pulled up a CT scan from a couple of years back that his allergist had ordered of his sinuses to compare the two.

So, that's good news at least... no strange tumors or the likes causing the headaches.

We are still on the waiting list. But doc pointed out I may be able to use the concussion to get in sooner.

Poor kid!! He is REALLY beat up. Thank goodness he had his helmet on or things would be so much worse. We're off to the orthodontist next... he messed up his braces and teeth pretty badly.  :(

Awwwww poor guy!   Thank goodness he was wearing a helmet!  Hope he is feeling better soon.  It would be great if the concussion did get him into the Neuro sooner.  A blessing in disguise?  

Jeannie

Yeh, I figured it was our messed up blessing in disguise.    ;)  We had canceled a trip to Disney very recently and I was super bummed we had to. The pedi today said: no bike, no scooter, no soccer, no sports... and no roller coasters... for six weeks. Guess we were supposed to cancel that trip after all! (Still stink though.)

And the same pedi that blew me off before said with a head injury she'll make sure to help get us an earlier neuro appt. So, that was nice at least.

Hi, my name is Linda and I am pleased to meet you.  Having 7 children anything I say about your situation is from a Mothers viewpoint and nothing more.

 There is a woman here, Helen...whose son Jasper has had CH since he was 3, I believe.  The only medication he is allowed at his age is pure oxygen.
As a Mom, as well as a chronic sufferer for 21 years now,  I would not hesitate for one second to give my child 02.   You can take your child to a fire station for 02 while he's having a headache.  if that relieves the pain like it does for us....I would then ask his ped. for a script for it for at home.

There is nothing in the world worse than seeing your child in pain, so I empthaize with you 100%   Please lean on us, talk to us and ask us anything.  We're here for you !!!!!!!

call me if you just want to talk too.  (530) 224-9515  I have unlimited mins. and I will call you right back.


Linda