My son John's 12 year old son Brandon has been having what appear to be migraines for a while.

Brandons  having a CT today and I need some input on what meds are safe for kids with Clusters, if indeed that is what the diagnosis will be.

John started the exact same way.........migraines (?) at age 12 turning into clusters at 17.  John took Periactin and then Inderol, but of course neither helped.

I know we have a place here for "kid" questions, but I'm hoping for some prompt advice before his doc gets him started on anything.  John's going to gather some info here to arm himself with, but I know that some of you have children with ch and would like to know what you give them for help.

Thanks all,
Donna   :-*

I would think O2 would be pretty safe.  We give Chris excedrin migraine, O2 and zomig nasal.  All prescribed by his doctor.

Donna,

  As you know, Helens son Jasper has had CH since he was 3 yrs. old.  There are no medications that are safe for children with CH.  The only thing that is available to a child IS oxygen.  

 

Have they treated him for migraines and if so, what has been used?

While triptans are NOT normally recommended for children, there are numerous articles where triptans are used as an abortive.

My migraines started when I was 12 and I don't remember having anything available to me until I was older. I was given naprosyn then. A 12 yr old may be able to use adult meds too which opens up the triptans, depending on his weight. This is when the doctors start making that change for some kids. Oxygen works great for clusters but does it work for migraines? I haven't seen it touch any of Lisa's migraines but it works like a charm for CH. If the migraines aren't more than a few a month then abortives may be the only thing he needs. Lisa coached a 12 yr old boy with frequent migraines who was put on 100 mg topomax. The results were great FOR HIM but that's a drug that many here really don't care for.

If you noticed I didn't mention CH cause I'm being optimisitc it's not going to change into CH. Lisa's migraines did but mine didn't. I'll keep my fingers crossed and hope for the best!!

Charlotte

Donna,

  How did the CT scan go?  Any news you can share yet?  It kills me that any child should be diagnosed with CH, so I'm worried to bits.  (thought I'd insert a "helen-ism)

Hi Donna; I am a chronic sufferer for around 11 yrs now and my headaches,although i still have them every day,are no longer for 14 hrs a day.
Maybe sounds silly but what helped me have less pain was a poop examination.They tested for parasites and yeasts as these can apparently also contribute to headaches.I live in Holland and had it done through a private laboratory so I'm not sure how to do it there but I found it helped me and with any luck it will help you both as well.
Best wishes for strength and healing!!      Julie

that's a first   :-X

wrote on Oct 24^th, 2008 at 10:35am:

that's a first   :-X

The 14 hours a day or filling a microscope with shit?....LMAO  :D ;D :D

Both, Jonny.  Jeeze.. ::)

No news just yet.  He has an appointment next week and I'm sure he'll get info on the CT then.  At least the doc seems to be aware of what cluster headaches are.  We'll see what the diagnosis is....but it's so exactly like what Johnny went through.

Can you believe it if it's true.............three generations?

Right now, I'm praying that it isn't so.

Thanks for the input....except for the poop.  We old timers have been through all of this stuff before once...or more times.

Thanks for the update Donna.   Keep us informed.   Please!!!!!

wrote on Oct 24^th, 2008 at 10:35am:

that's a first   :-X

chronie wrote on Oct 24^th, 2008 at 9:15am:

They tested for parasites and yeasts as these can apparently also contribute to headaches.

For a long time, there was a lot of research, speculation and testing going on regarding Candida causing migraines, and then....other types of headaches.
Some people DID get relief by curing their Candida problems. IMHO, it is one thing that can "trigger" migraines and other related headaches, or make them worse.
Parasites CAN also be a problem and can cause migraines.

I am a bit surprised that no one here with chronic clusters along with some additional "unconventional" symptoms, haven't been checked for Candida or parasites, or at least reported here that they were tested for them.

Bobw

Donna,

unfortunately, my CH started out as migraines (I think, never actually diagnosed professionally), but they morphed into CH when I was about 24-25.  Hope that is not how your son turns out!

Bob,

I was tested a couple of years ago.  Negative.

Jerry

Bobw, now that you mention it, I do remember a lengthy discussion on Candida and parasites.

I'll keep you all posted.  Thanks

Thanks Bobw    It is not a joke to get yourself testedi i have headaches every dayfor 11 yrs.Until i was treated i had them for up to 14 hrs a day and seriously considered removing myself to remove the pain! i am not saying it is a cure but I sure have several extra hours every day that i am not in pain....and every minute without..... is FABULOUS!
For me it made a difference and it is definately worth a try if it gives less pain......just a tip people. ::) ::)
PS Drs(or laboratories) can see more in your poop than in your blood or urine and I'll bet most of us have had those checked. ::)

Two of my three sons had migranes and one ch.  The only thing the specilist neurologists would prescribe for them as minors was midrin.  He would not prescribe oxygen.  Gave me a logical answer at the time about why he couldn't have o2 but I don't remember now what the reason was.  They refused to let them have imitrex.

Hi Donna; For what it's worth ....here is my 2 cents.
They dont want to give your children o2 because for them, faster than by us(we take way longer), there can become too much oxygen in the blood which will inevitably affect the brain and the imigran? that influences the hormones,their developement, so they are beginning easy in hopes that the lighter meds will work.
they are using something that both dulls the pain and as well works on the blood veesels in hopes to regulate the blood flow.Most are convinced that that is what happens To us,the blood vessel thing, but I'm not so sure>
I would get ,you know what ,and completely avoid chemicals or hormones, in your food.and diet drinks are oooh oooh.Aspertane.
Watch sugars and empty carbohydrates carefully and see what effect milk products have.
This could be a start ....I hope.. to help them not need ... all that.
Again just a tip and only my 2 cents!      Strength to us all  Julie

This is a little off the topic but not. I have a 4th grade student who keeps missing school. I checked her medical records today to see what might be the problem. I saw under listed drugs, topomax, melotonin, and an antidepressant. Melatonin was because she can't sleep at night. She also had a few other meds on her list. She was diagnosed with migraine and asthma.She has been missing school and when she is here she is falling asleep all over the place! Somehow we have to find a way to help these kids and get relief. I am not a doctor and our school nurse is new and learning about the kids still. I guess all I can do is step back and watch?? Yet I feel like she is over drugged and missing something. Any ideas???

Charlotte

cash5542 wrote on Oct 27^th, 2008 at 5:48pm:

I guess all I can do is step back and watch?? Yet I feel like she is over drugged and missing something. Any ideas??? Charlotte

I'd be hard pressed to give that combo to a kid. Especially Topamax mixed with the others. If she keeps falling asleep, that could pose a danger to herself or others. Maybe not in the classroom but....wouldn't be good to fall aslep on a park bench and wake to find no one there but a guy in a trenchcoat. ;-(

It's probably not your place (maybe it is?) to contact the parents since there is a school nurse, but you might be able to work through her. Maybe suggest to her to call the parents, mention the concern about falling asleep...drug interactions, migraines/asthma etc, and just inquire if they have a good headache specialist working on her case. The kid just might have a GP picking meds out of his PDR. If there is one thing you, and this group can do, is help find a good doc and make sure she's in good hands.

JM2C
Bob

Charlotte,
If the little girl is in your class and she's missing a lot of school days, it's well within your rights to ask for a conference with the parents.   I don't even see where looking at her medical records (I'm assuming they are part of her school record?).

Carolyn

I decided a conference was the best way to do this too. I need to call her concerning her grade anyways. I either need to give her an incomplete or fail her and let Mom know what's going on. The parent situation is bad here. Dad died 2 years ago and Mom is still struggling to cope with it. She is very pleasant, just overwhelmed. She may not be paying attention very well to her daughter since she is coping with her own grief.

Thank you Carolyn and Bob for your input

Cronie:  I very much appreciate your concern and suggestions.  Thank you for your input, and yes I will mention them to my son.

I still don't know anything more about my grandson.  I'm hoping to talk to my son tonight.

Charlotte, I agree that a conference is in order.  You have an opportunity to be both a support and encouragement to the mom, as well as point her in the right direction as far as seeing a specialist for her child is concerned.  A door has opened for you to do something significant.   :)

Donna...it's the least i can do....hope it helps!!!!
For this other little girl and many many others the list of sicknesses that can be yeast or parasite problems is very long and it is a very serious problem these days,unfortunately not recognised in every country.
Here's the short list of related sicknesses;Headaches (all sorts),allergies,asthma,autism,ms,breathing problems,behavior disorders,site and hearing problems as well as countless problems in the brain.
I'm not trying to say that this is always the problem but i am hoping that people can become aware that this is a big problem and hopefully some will have a new direction to look into instead of feeling helpless.(or hopeless)
I guess i've used up way more than my 2 cents.   All the best!