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Topic: My 5 1/2 yr old is going through hell! (Read 486 times) |
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xaronne
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My 5 1/2 yr old is going through hell!
« on: Mar 8th, 2006, 7:16am » |
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Hi all, I am the mother of a little boy who is 5 and a half years old. Since last October he has been getting headaches, and during these months they have been gradually increasing in frequency and intensity. After taking Darren to an ENT specialist to rule out sinus, he was referred to a pediatrician and then on to hospital. Since both me and my mother suffer from migraines they seem to think that he has also inherited them. However, even though we cut out all the foods which are thought to trigger migraines, the pain never stopped. In all these months, the longest period ever that he was OK was 4 days. And in the meantime he suffers. Yesterday we were adviced to go to hospital so a CT scan is done, and the results were clear. So that at least put our minds at rest its not something life threatening. While at hospital, I heard a surgeon mention 'cluster headaches', and I must admit that I am not very informed about this type of headache. However I found a wealth of information here, which in a way is making me feel much worse!! After reading one member's comment that it feels like having a limb amputated without being put to sleep!?! My goodness my poor child. Thank you for this site, if nothing else, it has helped me vent my sense of hopelessness and anger, yes ANGER. Why should children have to suffer these pains?? I pray to God that the medical people checking and doing tests find something which will ease his pain.
Thanks once again
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nani
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Re: My 5 1/2 yr old is going through hell!
« Reply #2 on: Mar 8th, 2006, 8:51am » |
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I'm so sorry about your son. 
My friend has a 4 year old with cluster headaches (I'm sure she'll be along and add something), and they use oxygen to abort. Look over on the left at the oxygen info link. In the meantime, find a pediatric headaches specialist, that will help, also.
Pain free wishes to your home, nani
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LeLimey
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Re: My 5 1/2 yr old is going through hell!
« Reply #3 on: Mar 8th, 2006, 4:39pm » |
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HI Xaronne
Its nice to meet you, I just wish it wasn't under these circumstances.
Can you describe your child's attacks for us please?? What he does? How long they last? Is he able to lie down? Is he sick? Can he stand light etc? List everything and lets see if we can suggest anything. None of us are doctors but we've all gone through many things between us and we might be able to suggest some avenues for you to explore.
There are many HA types which react in a very similar way to CH but require very different treatments and with such a young child it is paramount that he gets the right medication.. the wrong sort just doesn't bear thinking about.
I have a son of 4 who has been diagnosed for over a year with CH now and it's awful.. I can't sympathise enough. Rest assured that no matter what we will do all we can to help you get a accurate diagnosis and also the correct meds... you're not alone now okay and you can come and vent with us any time you like!
Take care
lots of love to you and your family
Helen
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MJ
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Re: My 5 1/2 yr old is going through hell!
« Reply #4 on: Mar 8th, 2006, 9:15pm » |
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xarronne Hi.
Whenever I hear of a child with CH it just blows me away. I am sorry.
How does he handle it what does he do? Do his attacks last long? If he does have CH I am sure many here would willingly take the hits for him if we could. I would gladly be the first.
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MJ
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Jasmyn
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Re: My 5 1/2 yr old is going through hell!
« Reply #5 on: Mar 9th, 2006, 1:35am » |
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Hi, Xaronne, I'm so sorry to hear your little one is suffering.
Come here anytime you need support.
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sandie99
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Re: My 5 1/2 yr old is going through hell!
« Reply #6 on: Mar 9th, 2006, 3:17am » |
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Xaronne,
I'm so sorry that your son has ch. It's bad enough to have ch at 25... I can't imagine what he's going through, but my sympathies are with you both.
I wish your son PF time as soon as possible,
Sanna
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xaronne
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Re: My 5 1/2 yr old is going through hell!
« Reply #7 on: Mar 9th, 2006, 3:45am » |
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Oh my am I glad I wrote in!  Thank you for all your support, we sure need it right now.
So to answer and describe what he tells us:
These headaches started last October, and at the time I took him to a friend of mine who is an ent specialist since we thought it could be a sinus infection, but he found nothing wrong. He then referred us to the pediatrician who could find nothing (maybe because Darren wouldnt sit still). He was then referred to hospital for tests. So come January we had the first visit. He was prescribed Inderal tablets 10mg which they told us will prevent the 'migraines'. In February we went for 2nd appt. Headaches were still the same, no improvement. He usually got them at around 3.30-4pm just after he got home from school, and cries for about 1/2-1 hour until the pain eases. He complains that he has pains on his right side, and he describes it as if 'his head is bursting'. During these episodes his right eye goes red and puffy and it waters. He also starts holding his head funny, pulling up his right shoulder almost up to his ear. He sometimes say that even his right ear hurts. The headache comes on really quickly so it is hard to know when an attack is coming, usually he will be playing or doing his homework, his eye starts getting puffy etc and he gets a sharp pain in his head. We tried massaging his head, which does calm him down after some time, but during the peak he cant sit or lay still since he is usually trashing around with his legs while holding his head. After the pain eases, he complains of feeling cold and sometimes just drops off for some minutes sleep, totally exhausted.
2nd visit to hospital a CT scan was ordered, which came out clear. They also increased the dose of Inderal, but they were just making him worse. From 20mg (10 - 10) it was increased to 40mg (20mg - 20mg) and the episodes were coming more frequently, up to 4 or 5 times a day. He is now waking a couple of times at night screaming with pain, so after talking to the doctor, I stopped giving him the pills which seem to be making him worse not better!
Well I dont know what else to write..I'm totally confused and dont know where to turn anymore.
Thank you all so much for your support, I really appreciate your comments and suggestions. I just hope that he can have a good night's sleep without any pain for once.
Sharon
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xaronne
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Re: My 5 1/2 yr old is going through hell!
« Reply #8 on: Mar 9th, 2006, 3:47am » |
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Oops! I dont want to flood the page, I just never know when to stop writing when I start, sorry about that 
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LeLimey
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Re: My 5 1/2 yr old is going through hell!
« Reply #9 on: Mar 9th, 2006, 5:20am » |
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Sharon make that the last time you apologise and write as much as you want!
That's an order okay?!
I wish I could say it didn't sound like cluster's but it does, very much so to me.
I'm in a very similar position to you in that my son is 4. I worry terribly about the drugs we use for CH and the effect they will have on Jasper as he grows and so far, thank God, we have managed with just using O2 to abort hits. I'm very reluctant at this stage to consider phrophylactic drugs given his age, the fact there is a school of thought that gives that preventative treatment can turn people chronic or increase the length of cycles and also the fact that the side effects can be pretty drastic, one of the least being "dopeyness" The main treatment used for kids is topiramate or topomax which is often referred to here as dopeymax.. tough to decide with kids at school etc. You need to discuss all options with firstly his neuro and also you can ask us for our experiences. We'll help all we can.
To go back to Oxygen, Jasper (and I!) use it at 15 litres per minute through a non rebreather mask. That is non negotiable.. any other mask or cannula's just will not help as much as you are aiming for 100% o2. O2 works by constricting the blood vessels in the brain, thus reducing the pain and it's very effective. Jasper can abort in 5-10 minutes. We both use a mask called a clustermasx www.clustermasx.com which was invented by a cluster sufferer. It has a huge cushion of air which sits next to your face giving a tight seal COMFORTABLY so you breathe in nothing but o2.. its wonderful and I can't recommend it enough. Jasper say's it blows the monster out his nose! Here's a picture of him using it, I think it helps alot that he can do something for himself to deal with it too.. he wakes up screaming for his masx now so he is completely confident in the fact it will work.
Keep us up to date with how you are doing okay? If you need any more help or info just ask, any time whatever you want is yours okay?
Thinking of you
Helen
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xaronne
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Re: My 5 1/2 yr old is going through hell!
« Reply #10 on: Mar 9th, 2006, 7:52am » |
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Hi Helen,
thank you so much for your suggestions. However, one question. If i understood right, both you and your little one suffer from ch? Is it hereditary?? Wasn't aware of this. At hospital the first thing that came to mind to the doc seeing Darren was migraines since both I and my mom get them.
Ciao for now
Sharon
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LeLimey
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Re: My 5 1/2 yr old is going through hell!
« Reply #11 on: Mar 9th, 2006, 8:00am » |
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Hi Sharon,
There is currently alot of research being done into looking for a CH gene, it certainly seems to have a bearing in some if not all cases. Remember that the norm with gene's is that it takes two to pass anything on so it doesn't necessarily follow that a sufferer will have a child with CH or that a family with no history of HA's means it can't be CH.. it's all complicated. Me and mine have all given blood samples for the gene research here in the UK, every little helps!
You and your mum may both have migraines but I doubt very much if you react like Darren does do you? The norm with migraine is to want to be still not active as in CH.. we're unable to sit still!
When are you next seeing the neuro? Can you speak to your own doctor about o2? It really is well worth pursuing. I was a bit sceptical about it at first to be honest but the first time I used it myself was like.. WOW! I couldn't believe it.. I wanted to stop people in the street and tell them! It was (and still is) incredible 
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xaronne
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Re: My 5 1/2 yr old is going through hell!
« Reply #12 on: Mar 10th, 2006, 3:56am » |
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Good Morning All (it's 09.32am over here!)
Wednesday morning was the last time I gave my son the Inderal pills which he was prescribed in hospital. And although he is still getting headaches, already there is a huge difference!! His headaches are not coming on as often, are slightly less fierce, and best of all he is no longer walking around like a zombie 
Most probably he was getting lethargic with all those drugs being pumped into him poor guy. So, at the moment all he is getting is nurofen for children, but only when he gets a very bad headache. The other times, when it is not so bad, we massage his head (when we manage to keep him still) until it passes.
So next Monday back to hospital for more tests, will keep you informed of the outcome. In the meantime, I wish to thank my parents from here, since they are the ones who look after him while I am at work. Without them, I'm nothing. Also a big thank you to Darren's teacher who is so understanding and helpful, Thank You all so much
Love, Sharon
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LeLimey
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Re: My 5 1/2 yr old is going through hell!
« Reply #13 on: Mar 10th, 2006, 4:24am » |
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Sharon you might get some benefit froma bag of frozen peas or sweetcorn wrapped in a teatowel and held against his head or neck, alot of people here swear by ice (or heat works for some but it's a big trigger for me)
It's a non invasive simple home remedy you can try that might make a difference and it feels at least like you are doing something.
Nurofen for kids is like throwing jelly babies at a shark in this case.. its going to have a placebo effect at best because that works on "normal" pain and CH pain is completely different, you need something like the ice which will reduce the swelling of those old blood vessels. Another good one is to sit in the car with the aircon on full blast at the lowest temp with his face as close to the vents as possible, I've found some help from that when nothing else was available.
Good luck and I hope you have a pain free weekend with Darren, I shall be watching for your news on Monday and will be thinking of you and sending good luck vibes all day long 
love
Helen
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xaronne
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Re: My 5 1/2 yr old is going through hell!
« Reply #14 on: Mar 10th, 2006, 5:06am » |
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hmm i shall try this, anything better than medicines! i have tried getting him to hold a wet facecloth to his face, but he complains that it goes hot immediately. But maybe ice will do the trick. Will keep ya all up to date
A lovely weekend to all and once again thank you for your support, it sure helped me a lot
xx
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thebbz
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Re: My 5 1/2 yr old is going through hell!
« Reply #15 on: Mar 10th, 2006, 1:14pm » |
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I feel so bad for you and your son. He probably deals with better than I . Hot head and fire eye is what I call it. I hope he gets through it soon. The CHenz are giving you the best info. It is so good to see how well the info works.
all the best
jb
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