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Topic: 9 year old boy w/cluster h'aches (Read 962 times) |
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JacobW
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9 year old boy w/cluster h'aches
« on: Feb 21st, 2005, 12:32pm » |
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Greetings,
This is my first email to this website. I have a nine year old boy who started with clusters two months after his 7th birthday. We were told it was a chronic case and should not last more than a year tops. Well, it's 2 1/2 years later and Jacob still has them everyday.
I have questions about meds...he takes D.H.E. (pill form) with Verapamil and Topamax. Is this the standard drugs? Is there anything new I should check into. Jacob will not use the imitrex nasal spray. He won't swallow pills. I have to use a pill crusher for all these meds and he drinks with grape juice.
Has anyone heard of having spells 2+ years and no breaks? Will Jacob ever see a break? Thanks for any info!
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LeLimey
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Re: 9 year old boy w/cluster h'aches
« Reply #1 on: Feb 21st, 2005, 12:39pm » |
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Oh my God.
I'm so sorry. That is heartbreaking. No child should have to go through this.
Those are all standard meds, Imitrex is available as an injection, I don't know how you would get on with that!
Have you thought about trying O2 for him? It must be quite a worry with all those meds and him so little.
how often is he getting hit? Is there a pattern to it like same times of day? there are other things that can help such as melatonin at night but the more info we have the better... although none of us are doctors and you should always check things out with your neuro.. especially with him being so young.
I have a nine year old too and its killing me thinking of what you and your family is going through.
What is your son's name BTW?
Talk to you again soon
Helen
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JacobW
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Re: 9 year old boy w/cluster h'aches
« Reply #2 on: Feb 21st, 2005, 12:49pm » |
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His name is Jacob. We did the O2 in the beginning. It seemed to work for awhile. After a year or so, Jacob refused to use it anymore. He said he could not tell much of a difference. We had all the oxygen machines removed from the house, plus the one we had set up in the school office.
In the beginning, he had like 8 a day, never nauseated, always the one in the middle of the night, etc. He did use Melatonin at night but quit about five months ago. He was soo tired, and we thought Melatonin might be the culprit. We can't tell much of a difference at night w'out the melatonin, so I guess that's good. Fortunately, he's down to 2 small ones a day. They last about 20-25 minutes. I can't tell a routine, they vary. If this wasn't bad enough, his doctor is out of network and office copays are going to $70 a visit. We're having to find another doctor, which we don't like since he has had this one for 2 years. He was referred by an in network doc, who mis-diagnosed him with migraines. He then referred us to this out of network doc, and now the copay is growing. I am thankful Jacob is down to 2 a day. We know one is coming when his face gets red, eyes get red, runny nose...
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LeLimey
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Re: 9 year old boy w/cluster h'aches
« Reply #3 on: Feb 21st, 2005, 12:53pm » |
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poor little baby.. its so unfair.
We do have a board here for parents of kids and a supporters board which should be alot of help for you. Have a look.. its a bit further down the "menu" from this board!
There are going to be alot of people on a bit later who will be a lot more use to you than me.. maybe able to recommend docs in your area etc.
I wish you the best of luck and you never know.. a new doc might be a blessing in disguise!
Keep us in touch with how you are getting on
Regards
Helen
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Langa
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Re: 9 year old boy w/cluster h'aches
« Reply #4 on: Feb 21st, 2005, 1:14pm » |
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HI there...
I'm so sorry to hear about your son Jacob. I, myself, suffered with clusters since the age of 10, but possibly earlier since my mom remembers me crying for no reason and banging my head on stuff much younger than that. I, however, wasn't chronic, I had random attacks, until I was 16 when I started getting actual cycles.
I was going to suggest the 02 and melatonin, but you've already said they don't work anymore. Make sure that you were using it properly though. There's a link on it to the left.
Here's wishing you and Jacob pain free days and nights!
Langa
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nani
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Re: 9 year old boy w/cluster h'aches
« Reply #5 on: Feb 21st, 2005, 1:52pm » |
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 I'm so sorry....
Those are heavy duty meds for a child, in my humble opinion. I'm curious if the Topamax is having an effect on his schoolwork. There's a promising new possibility here:
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1107368408
Please read it through carefully, as it's still something new some of us are trying, and there's no way to predict it's effect on Jacob. It's natural, though, and I think that's a good thing. Read possible drug interactions carefully. The best of luck to you and please keep us posted. I'm sure Jacob (and you) will be in many of our prayers. Pain free wishes and hugggssss, nani
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BobG
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Re: 9 year old boy w/cluster h'aches
« Reply #6 on: Feb 21st, 2005, 2:41pm » |
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Breaks my heart to see that a child is under attack from clusters. It just isn’t right.
Here’s some things from the site (click) below:
http://www.rxlist.com/cgi/generic/verapsr.htm
Pediatric Use
Safety and efficacy of verapamil HCl in pediatric patients below the age of 18 years have not been established.
Quote:| I have to use a pill crusher for all these meds and he drinks with grape juice. |
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PRECAUTIONS
THE CONTENTS OF THE VERAPAMIL HCL, EXTENDED-RELEASE, CONTROLLED-ONSET CAPSULE SHOULD NOT BE CRUSHED OR CHEWED.
The grape juice part…………something in the back of my mind says be careful with the juices. Grape juice is OK.
Grapefruit juice and verapamil don’t mix. (I think) Someone please help me here.
Quote:| We had all the oxygen machines removed |
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O2 machines may not deliver enough oxygen to help with the clusters. Have you tried pure oxygen through a non-rebreather mask? Look under the 'oxygen info' button on the left side of your screen
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| « Last Edit: Feb 21st, 2005, 2:52pm by BobG » |
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sandie99
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Re: 9 year old boy w/cluster h'aches
« Reply #7 on: Feb 21st, 2005, 2:47pm » |
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I am so sorry to hear that Jacob has to deal with this beast so early on... 
I am chronic. Neurologist told me when I was diagnosed back in 2002 that I'll have to live with CH the rest of my life. He said that sometimes CH does stop, just like that, but usually after the sufferer turns 40. I keep my thumbs up that Jacob doesn't have to suffer that long time... 
Best wishes & PFdays to Jacob!
Sandie
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JacobW
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Re: 9 year old boy w/cluster h'aches
« Reply #8 on: Feb 21st, 2005, 2:50pm » |
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Thanks to everyone who has emailed! Jacob likes to hear other people suffer from clusters too. Seems to give him comfort(mom too!).
We had heard about the time release on the verapamil. We were told it was "okay." He is down from 120 mg of verapamil to 60 mgs now. The topamax seems to be the one he absolutely cannot do with out. We "thought" a few months back he might be having a break, we got him down to no topamax, and boom headaches started right back. He is having trouble staying focused at school, and his doc seems to think the verapamil might be the problem and suggested we cut down until we found a "stable place." Meaning he wouldn't be taking more meds than he needed to balance out what it takes to keep him headache free. Hope this makes sense.
I watch him, and although he has two a day now, they are no where near the level of pain he experienced in the past. The meds/combo seems to work okay considering the two he has are not severed. Please tell me as long as he has these meds, he should be able to function okay as an adult. Do we need to enjoy it while it lasts? Are these meds only good for so long? Watching him at seven years old, rolling around in the living room, begging to die...I just pray maybe those horrific days are over...with meds I mean.
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Langa
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Re: 9 year old boy w/cluster h'aches
« Reply #9 on: Feb 21st, 2005, 3:33pm » |
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Quote:| Watching him at seven years old, rolling around in the living room, begging to die... |
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Please keep us posted on your son.
Langa
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JJA
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Re: 9 year old boy w/cluster h'aches
« Reply #10 on: Feb 21st, 2005, 4:37pm » |
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on Feb 21st, 2005, 2:50pm, JacobW wrote:| Please tell me as long as he has these meds, he should be able to function okay as an adult. Do we need to enjoy it while it lasts? Are these meds only good for so long? |
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You ask tough questions. No one knows really. It must be hard for a parent, but you just can't worry about it. Focus on what works now.
It's worth noting that about 1/3 of chronic CH sufferers become episodic (headaches disappear for months or years at a time). The body goes through a lot of changes as you age, especially during puberty. He might get a break.
Jesse
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don
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Re: 9 year old boy w/cluster h'aches
« Reply #11 on: Feb 21st, 2005, 5:53pm » |
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How was he using the oxygen?
Was he using a non rebreather mask at 9-12 Mls?
Or was he using standard canules?
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Kevin_M
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Re: 9 year old boy w/cluster h'aches
« Reply #12 on: Feb 21st, 2005, 7:28pm » |
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on Feb 21st, 2005, 5:53pm, don wrote:How was he using the oxygen?
Was he using a non rebreather mask at 9-12 Mls?
Or was he using standard canules? |
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I was curious about this too, stemming from the statement:
Quote:| We had all the oxygen machines removed from the house, |
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Kevin M
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JacobW
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Re: 9 year old boy w/cluster h'aches
« Reply #13 on: Feb 22nd, 2005, 8:11am » |
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About oxygen..I can't remember names. There were these two big machines that worked together. Jacob would put a mask on, and use this machine for 15-20 minutes. We also had the portable tanks to use in the car and one in the school office. Again, he would put a mask on and turn the tank up to a certain number. Sorry, I don't remember. It was about 10 mos ago, and he used it for maybe a year.
Is there something specific we should try with the oxygen? If so, I can call his doc and find out if what he used in the past was the same. If it's not, I will ask if Jacob can give this a try.
I really appreciate all the advice! Thanks again.
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nani
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Re: 9 year old boy w/cluster h'aches
« Reply #14 on: Feb 22nd, 2005, 8:35am » |
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<------------- Read (and print) the oxygen info link over there. It even has pictures. I sure like the oxygen idea better than all those meds.
edited to add: Please check your messages. top of screen on the right. 
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| « Last Edit: Feb 22nd, 2005, 8:37am by nani » |
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Redd
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Re: 9 year old boy w/cluster h'aches
« Reply #15 on: Feb 22nd, 2005, 8:38am » |
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http://www.headachesupportgroups.com/oxygen/oxygen.htm
Read up on this page Dad. It gives all the details and if you can, print it off for the Doc to read as well.
The flow rate of the 02 must be high enough to saturate the blood with it...
please read and see if this appears to be the same thing he tried before. the mask MUST be a non-rebreather.
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miapet
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Re: 9 year old boy w/cluster h'aches
« Reply #16 on: Feb 22nd, 2005, 2:45pm » |
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This breaks my heart.
I truly hope the o2 information will help you find something for your son.
I hope your school district is serving your child in every way possible. He should be classified as OHI (other health impaired) which allows the school to collect extra federal $ to make sure he is properly served (for anything that will assist him in obtaining his education). This includes home/hospital teachers if there are times he is unable to attend classes.
We are keeping you in your family very much in our thoughts .. .
*positive light and energy*
miapet
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maureen
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Re: 9 year old boy w/cluster h'aches
« Reply #17 on: Feb 22nd, 2005, 3:39pm » |
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I'm wondering if you were using the right mask because you said he would put it on and with a non rebreather mask we tape up all the holes, and instead of putting it on we hold it the mask in place breath in then remove it
to exhale etc so you are only breathing the 02 and not the outside air. I hope you find something for him that works wonders he is to little to have such pain all my love and prayers to him and my support to you.
Maureen
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SLanegan
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Re: 9 year old boy w/cluster h'aches
« Reply #18 on: Feb 22nd, 2005, 10:04pm » |
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Just want you to know that I think your boy is a brave as hell for dealing with the beast!!! I also want you to know that you and your family are in my prayers.
It brings my dealings with the beast to an absolute nothing as compared to his pain. I can understand it and know I have to live with it because I am grown. But, to have the beast and not know why or such, it brings my pain to a kip zero when compared to your son's pain.
Stay strong and many PFDANs for you and your son!!!
MasterSergeantSean
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Re: 9 year old boy w/cluster h'aches
« Reply #19 on: Feb 23rd, 2005, 12:34am » |
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Man, my wife and I were in tears reading about this young man, having to deal with the same misery we have been dealing with for 12 years. The beast is stealing his innosence at such a young age. We will be praying for you and yours. Don't settle for what the doctors are telling you. Do your research and tell them what you think needs done. There is so much information between this site and the OUCH site, it will blow your mind. Hug that young man for me and tell him that there are some people out here who are praying for him very hard.
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TonyG1
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Re: 9 year old boy w/cluster h'aches
« Reply #20 on: Feb 23rd, 2005, 8:58pm » |
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It is terrible the beast would touch someone so young !! He is a brave young man!
I wish your son and yourself many pain free days / nights !!
T.
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JacobW
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Re: 9 year old boy w/cluster h'aches
« Reply #21 on: Feb 24th, 2005, 9:15am » |
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Jacob and I appreciate all the prayers. He has an appt in three weeks with his doc and I will ask about the oxygen again(will take info with us).
Jacob excels at math and science, and he told his "headache doc," at last visit, when he grows up, he is going to do research/science about clusters. He wants to find the cure! I was so impressed and proud had to share with those who could relate. Hearing a nine year old make such a profound statement, it was awesome.
Hope you all are well and know Jacob prays for you guys also!
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Ellick
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Re: 9 year old boy w/cluster h'aches
« Reply #22 on: Feb 27th, 2005, 9:24am » |
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Hi Jacob,
I wish you well.
Ellick. x
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NadmanET
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Re: 9 year old boy w/cluster h'aches
« Reply #23 on: Mar 3rd, 2005, 5:16am » |
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on Feb 22nd, 2005, 10:04pm, SLanegan wrote:| It brings my dealings with the beast to an absolute nothing as compared to his pain. I can understand it and know I have to live with it because I am grown. But, to have the beast and not know why or such, it brings my pain to a kip zero when compared to your son's pain.MasterSergeantSean |
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Couldn't have said it better. Jacob: you hang in there little buddy!! We need some good doctors fighting the good fight for us!!!
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