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Topic: newbie mom with 6 yr old son with ch's (Read 717 times) |
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crftymom
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newbie mom with 6 yr old son with ch's
« on: Jan 1st, 2006, 8:47pm » |
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I have spent many days going through info on this sight and many others trying to understand what we are up against, and wow am I scared. On dec 18 my son started having severe pains in his left eye and temple. I pushed it off to having a cold and lack of sleep. Two days later he spent from 3-6am crying and screaming in pain. Nothing helped. I took him in the next day. They gave me tylonal W/ codine and motrin. Needless to say samething the next night. They rushed him in for CAT, all clear. Now they believe this is what he has. We saw a neorologist on 12/29, after seeing Dawson's swollen eye, runny nose and extreem pain, he agrees. They just delivered the oxygen yesterday, but wouldn't you know it the headaches stopped. But we still notice the eye swelling and nose dripping. After everytning I have read, and hearing some of the stories on here, I am beyond scared. It is great however to know there are people that know what we are going through. I just hope he is done for now. He turns 7 on Jan 10, and I would love for him to have some peace for his big day. Thanks to all of you for the wealth of information this site and the people on it provides. Any advise is much appreciated.
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FramCire
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Re: newbie mom with 6 yr old son with ch's
« Reply #1 on: Jan 1st, 2006, 9:19pm » |
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I can't give you much information, but I will be praying for you guys. My birthday is also January 10th (although I am quite a bit older) and I wish him a PF birthday with many many many more to follow.
Anyway, I wish you guys the best and I wish I had something I could do or share with you to make you feel better, except to tell you that it seems like this place is a great place to help find ways to cope with what you are facing. If there is ever anything I can do, I would be happy to help, but as I said, I don't know much.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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Guiseppi
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Re: newbie mom with 6 yr old son with ch's
« Reply #2 on: Jan 1st, 2006, 10:02pm » |
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As a parent I offer you my families prayers. Keping you in our thoguhts, thank God he's got a mom taking the lead on his treatment, he'll need you.
Guiseppi
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Mr. Happy
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Re: newbie mom with 6 yr old son with ch's
« Reply #3 on: Jan 1st, 2006, 10:08pm » |
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on Jan 1st, 2006, 8:47pm, crftymom wrote:| Any advise is much appreciated. |
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If it's really clusters.....(hard to tell at a kid's age, let alone any other)...it'll happen again, sooner or later.
Hate to pump a young waif with drugs. Suggest Oxygen therapy with a Clustermasx to abort HA's. Seriously. Pretty much a lifetime affliction, if correct diagnosis. Muy mal.
Take it one step at a time.
RJ
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| « Last Edit: Jan 1st, 2006, 10:09pm by Mr. Happy » |
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Roxy
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Re: newbie mom with 6 yr old son with ch's
« Reply #4 on: Jan 1st, 2006, 10:14pm » |
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I offer my deepest sympathy for your family. I can't even bear to think about watching a child go through this.
So glad you have the 02, hopefully it will work wonderfully for him. What type of regulator came with the 02? Does it go up to at least 15lpm? What type of mask did they supply with the tank? If you've read the site, I'm sure you read the 02 page, hopefully everything is right with the setup.....makes a big, big difference in the efficacy of the 02. Might be a good idea to have him practice a time or two with the mask before he needs it in desperation.
Good luck and welcome,
Roxy
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Gator
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Re: newbie mom with 6 yr old son with ch's
« Reply #5 on: Jan 1st, 2006, 10:16pm » |
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There are several parents of clusterkids here. LeLimey's (Helen's) son just turned 4. Developed clusters when he was 3. I'm sure she will be along soon with some of the things that is helping her boy.
Keep on the doctors and make sure they are certain about the diagnosis. It is my understanding an MRI is a better test than a CT Scan when it comes to ruling out other things in the head. Best to rule out any other possibility before getting comfortable with a diagnosis where the head is concerned.
I know your "Mother's heart" must be breaking all over the place. Just know that while they are painful, clusters are not fatal. You are doing the right thing by reading all you can and becoming knowledgeable about the disorder. Knowledge is power and you are your son's best advocate right now. You may very well end up teaching the doctors a thing or two before it is all said and done.
There is a list of non-prescription treatments on the OUCH website. These are things that other CH sufferers have written in about that has helped with their clusters:
http://www.ouch-us.org/chgeneral/nonmed.htm
I am joining you in your wish that his cycle is over now and God willing, he will never have another.
Big hugs for you and your son,
Mike
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BarbaraD
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Re: newbie mom with 6 yr old son with ch's
« Reply #6 on: Jan 2nd, 2006, 6:57am » |
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Cmom,
My prayers are with you. I agree with what the others have said. Make sure of the diagnosis. If it is indeed Clusters it will reappear. If the O2 works this will be great (and it works so well for most), but make sure he knows how and when to use it and is not afraid of it. The "right" mask is essential.
Hopefully he'll go for years without another episode, but be prepared if and when another one hits.
As a mother, I know how bad it hurt to watch your child suffer and my heart goes out to you. You're doing the right thing by getting him to the doctors early. And we're all here for you.
Hugs BD
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The mad viking
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Re: newbie mom with 6 yr old son with ch's
« Reply #7 on: Jan 2nd, 2006, 7:02am » |
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You try contact Helen right away my friend
Svenn
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LeLimey
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Re: newbie mom with 6 yr old son with ch's
« Reply #8 on: Jan 2nd, 2006, 7:14am » |
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Hello again!
I thought I was going mad.. I wrote out a huge long reply earlier and posted it on the children with clusters board and I just read THIS post and couldn't work out where mine had gone! 
I'll repeat the post just in case it ever helps anyone else.
My heart sinks every time I see a post in this section. I truly believe this is the WORST part of CH, knowing kids can get it.
You're very lucky you have a neuro who believes that kids can get ch. Many don't.
Oxygen works fantastically and I can't recommend it enough. Its the first choice for me every time and the only choice I will allow for Jasper. Even if your son is now out of cycle (touch wood!) Experiment with the o2 at a low flow rate, get him comfortable using it and the mask and reinforce the idea that it's going to help him.
O2 works, it aborts every hit for Jasper within 5-10 minutes (at 15 litres per minute.) We both use clustermasx which are available from www.clustermasx.com and it is because of the unique design of this mask that you can get a 100% seal thus breathing nothing but Oxygen and thus being able to abort so quickly. You can buy a standard non rebreather mask. You may still need a paediatric one (They are TINY) These are the one's with the bag attached. Jasper took one look at it and wouldn't have it near him but he was only just turned 3 when he was diagnosed. (He's been suffering for more than a year now. He loves his clustermasx however and calls it his magic mask.
I'm in a "luckier" position than you in that I'm a sufferer too so he has seen me getting hit and knows that MY magic masx helps me and it's helped him adjust to it too.
He has quite a unique theory on it. He calls these ha's "Custard Headaches" and he is convinced that the "monster" gets into his mouth when he has to eat dinner's he doesn't like (You have to admire his thinking don't you?! Mum to mum ) It then works up to your brain and it starts to eat it so if he breathes through his masx he can blow the monster out of his nose!
One of my friends here in England, a wonderful man by the name of Malcolm who is a fellow sufferer wrote a lovely story for Jasper which I'm going to post on a separate thread on the children and cluster's board in a minute and you are welcome to take it and change the names if it will help.
My best advice is to talk to him about it, to let him use his imagination and come up with his own idea's of how to fight it. Jasper is under Professor Goadsby who is one of the worlds leading CH specialists and he has told me that it is quite possible for him to go into a remission period for many years. I know other adult sufferers who started CH at the age of 6, had one cycle and didn't get hit again until they were 24 so don't lose heart. It may happen for us like that too! From what I've seen cycles tend to be shorter in young kids.
Read up all you can here on the different meds available. The only meds available to kids are those which are available to us to and frankly, they are scary drugs for us and I for one will not put them into my little boy until I have no choice. There is little data on what is safe to give to kids and in my experience pizotifen and topomax were all that were offered. pizotifen is completely ineffective and topomax isn't called dopeymax for no good reason! I would look into both on here very carefully so you are fully armed with questions should your doctor recommend it.
Finally please remember this.. we are here for you 24/7. Whilst this will not kill your baby seeing him go through this pain is.. well you know. Sometimes words fail me. This is a horror that is beyond description. We will support you and help you every step of the way. Keep us informed please.. I for one can't get kids with CH out of my head and I worry. So even if he is fine, ESPECIALLY if he is fine .. let us know! Let us share THAT joy with you!
lots of love
Helen
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Ree
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Re: newbie mom with 6 yr old son with ch's
« Reply #9 on: Jan 7th, 2006, 11:41pm » |
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I AM so sorry to hear about your son. Helen you are such a great help to this mom at this time. At one time we thought Breezy was starting a cycle of cluster also, thank God it was not. I agree that you are quite lucky to have a doctor that believes that children get CH. I also agree that O2 is probably the safest and Helen can help you in that area.
Know that we are here. Know that you will get the best information on the planet for your son... and Know that we will pray that he recover and possibly not have another cycle of these dibilitating headaches... God bless Ree
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Sean_C
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Re: newbie mom with 6 yr old son with ch's
« Reply #10 on: Jan 8th, 2006, 2:43am » |
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I don't think I could give any better advice than what you've already gotten. I too will keep your child in my prayers.
Mr Happy (Randy) gave you a link for the "clustermasx" it was highlighted in green text. Please look into that asap.
If by chance you can't afford it, I would be glad to help you and your child out.
Please don't be a stranger, the lights always on here.
Sean................
edit to add: Mom I used a couple of zip lock baggies of crushed ice during an attack, some like heat, I personally like the cold. Another thing these will NOT kill him or damage him physically, I just wanted to reassure you that wasn't the case. Please be patient with him and let his school know that he has this condition and maybe they can let you leave an o2 bottle and mask at the nurses station. She should also have a freezer there and maybe she could leave a few of those blue ice gel packs also. Again I'm sorry you both have to deal with this.
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| « Last Edit: Jan 8th, 2006, 2:54am by Sean_C » |
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FramCire
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Re: newbie mom with 6 yr old son with ch's
« Reply #11 on: Jan 10th, 2006, 5:54am » |
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Happy Birthday Dawson (That's his name right)!!!
Here's to a pain free birth day and many many many many (X 10000000000000000000000000000000) others!
(He shares a birthday with a very distiguished American who isn't going to have a pain free Birthday but it will still be happy nonetheless, especially if you report your son had a PF one himself!)
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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