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Topic: My 5 1/2 yr old is going through hell! (Read 936 times) |
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xaronne
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My 5 1/2 yr old is going through hell!
« on: May 25th, 2006, 3:31am » |
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 It's just been confirmed, my little guy has clusters
After a CT scan, MRI, blood tests and I don't know what else, we finally were referred to a neurologist. As soon as we described his pains she immediately told me it's clusters and we are now trying oxygen. This being Malta, however, she prescribed oxygen not for clusters but for asthma. She told me that if they were to know the real reason he needs the oxygen they wouldn't give it to us.
At the moment he is going through a terrible cycle. The oxygen doesn't seem to be working and I am also giving him his usual medicine. My question is, does the mask make that much of a difference? And if so, could I order a mask which is specifically for c.h. sufferers? Any help is appreciated since I am not getting much help locally. Apparently it is not very common in children and in Malta it is almost unheard of!!
I feel like hell, I feel angry at the injustice of this pain in such a young boy and most of all I am in agony seeing my son suffer like this. He cannot understand why God doesn't take away his pain. I can't either.
Thank you
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LeLimey
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Re: My 5 1/2 yr old is going through hell!
« Reply #1 on: May 25th, 2006, 3:47am » |
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Hi Xaronne.. I'm glad we're hearing from you again I was wondering how you were getting on.
I'm so sorry it IS ch..that's devastating and I know.
The Mask does make all the difference, the difference between breathing an air/o2 mix and pure o2.
O2 works by constricting the blood vessels in your head and thus reducing the pain so getting any air in the mix makes it take longer to work.
The best mask, the one I use for my 4 year old is a clustermasx.. you can't do better. If you send me an IM with your address I'll get one sent to you.
Take care, we're always ehre if you need help
Helen xxx
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marlinsfan
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Re: My 5 1/2 yr old is going through hell!
« Reply #2 on: May 25th, 2006, 2:38pm » |
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The mask Helen talks about can be found here:
http://www.clustermasx.com
I feel for you and your kid. My first baby was born 2 weeks ago, and if there's anything I dread is that he comes down with CH.
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maffumatt
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Re: My 5 1/2 yr old is going through hell!
« Reply #3 on: May 25th, 2006, 4:42pm » |
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I'm sorry about your child, I hate to see these kind of threads. Just be there for him, and one good thing can come out of this. That is the knowledge that if he can endure this, he will be able to handle whatever life throws his way. Glad that he has a mom like you.......
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DisneyRN
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Re: My 5 1/2 yr old is going through hell!
« Reply #4 on: May 25th, 2006, 4:52pm » |
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When I get a Cluster, I start hyperventilating, then banging my head. Your son may not be having asthma attacks as often as you may think.
Also, the Oxygen, at high amounts puts me to sleep after 10 minutes or so. The only way to get the amount of Oxygen needed is through a mask. I also use cold packs to my temple area.
I am a Pediatric R.N. and just can't imagine how though your son must be. I, also had children with asthma. And have spent many, many hours in the Emergency room.
After figuring out what helps "me" when I have a Cluster, the pain is less frequent and fairly tolerable.
Hang on Mom, your support will do your little guy a world of good!
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thebbz
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Re: My 5 1/2 yr old is going through hell!
« Reply #5 on: May 25th, 2006, 8:54pm » |
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The clustermasx makes a world of difference.
All the best to your,"little guy". 
Your not alone here and neither is he.
jb
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Jonny
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Re: My 5 1/2 yr old is going through hell!
« Reply #6 on: May 25th, 2006, 9:01pm » |
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on May 25th, 2006, 4:52pm, DisneyRN wrote:| Your son may not be having asthma attacks as often as you may think. |
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Im glad your not my nurse....try re-reading the post.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Linda_Howell
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Re: My 5 1/2 yr old is going through hell!
« Reply #7 on: May 25th, 2006, 11:25pm » |
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I'm not picking on you, DisneyRN, but this quote really has me confused. 
Quote:| the Oxygen, at high amounts puts me to sleep after 10 minutes or so. |
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Oh God, how I wish it would....Linda
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kcopelin
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Re: My 5 1/2 yr old is going through hell!
« Reply #8 on: May 25th, 2006, 11:39pm » |
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Man, I really hate to hear about kids getting hit with clusters. The clustermask will help, its got a better seal and will fit his litttle face. Your support is going to be invaluable. The clustermask also comes with a really long hose so if he wants to pace around he can, I don't know if he rocks or if he wants you to touch him when he's hurting, but it might help to hold him in your lap and rock. I don't know, sweetie-grasping at straws here. Y'all are in my prayers and I'm glad the doctor was willing to circumvent the stupid rules about prescribing O2 for clusters-
Prayers for PFDAN for your son!
kathy
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xaronne
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Re: My 5 1/2 yr old is going through hell!
« Reply #9 on: May 26th, 2006, 3:07am » |
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he doesnt get asthma, it's clusters he has. and yep, i hold him and try to calm him down when he gets his attacks. it's like a battle though, he can't sit still so he keeps banging my legs with his feet! but hey, compared with what he is going through it's nothing. He also finds a little comfort when i massage his head with essential oils, lavender mostly.
One thing which amazes me is that he is learning to cope with his pain, to a certain extent. I guess it's true the saying that goes something like 'that which doesnt kill you makes you stronger'!
copelin, what does PFDAN mean?
good day to all, and thank you all for your support
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LeLimey
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Re: My 5 1/2 yr old is going through hell!
« Reply #10 on: May 26th, 2006, 5:57am » |
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Sharonne it means Pain Free Days And Nights - its the clusterhead wish for each other 
I know what you mean about holding him to stop him hurting himself, I have to do that with Jasper, he tried to bash his head on the wall, theside of the bed, the floor where ever he is. He literally swings his head to slam it into stuff too and it tortures me. I hate restraining him because I know how it would make ME feel to be restrained in a hit but I have to, I'm his mum and I can't bear it.
I know how hard it is to "stay in control" and do your best to try and help them when all you want to do is bawl your own eyes out, I hate myself for being "bossy, I hate myself for being scared, I hate myself for not being able to make it stop, for feeling helpless... for thinking about me at all when he is going through hell. The only way I can cope with it is by not thinking about the how's or why's but with dealing with the practicalities alone. Making sure he is breathing, acting like a cox in a boat race, telling him to breath in, breath out, breath in, breath out like a robot. He is like me and holds his breath when he is in pain sometimes. I rock with him and he has learned to rock to deal with the pain as his form of movement - he can't be still, none of us can. The worst of it as you say, is also the best of it. Children so young shouldn't have to know that they just have to get on with it and do what has to be done but they do. Jasper now knows the routine. He knows he needs his mask, he knows how high the "hiss" of the o2 has to be, he does it by ear. He clings on to that mask like a drowning man because he knows it's his life raft.
Our kids are brave and there are ways we can teach them to cope, treatments to use etc. Don't forget in all of this that you need help too and please, don't ever be afraid to ask for it from us or from your own medical teams. Dealing with a child in this sort of pain is not something you can do alone. I don't know where I'd be without the support I have here 
Helen
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xaronne
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Re: My 5 1/2 yr old is going through hell!
« Reply #11 on: May 26th, 2006, 6:09am » |
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Oh God, I'm at work and here I am crying my eyes out! The problem here (as it must be elsewhere) is that nobody knows about clusters let alone understand what goes on. The other day I was reading a story to Darren from a book called Jesus helps everyone (in Maltese though). And there was this story of a girl who was very sick. by the time Jesus got to her home she had died. When I got to the bit where Jesus wakes her up again, my son asked me why He won't make him better too. And I felt smaalllll... I didn't know how to explain, what to say or even where to start  Sometimes he asks something and he breaks my heart. I wish to could take away the pain from him. I feel his childhood is wasting away. He is reluctant to go out, anywhere, because he is afraid of his next attack. I don't really practise my religion, but I do pray God every day to make him better. This may be selfish of me to only turn to Him in our hour of need, but it helps.
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LeLimey
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Re: My 5 1/2 yr old is going through hell!
« Reply #12 on: May 26th, 2006, 6:25am » |
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You need someone Sharonne, you can't carry all this alone. I'm going to email you a story written for Jasper, I've posted it on the children and clusters board but I'll change the names and put Darren in it so that you can show it to him. Jasper loves his story about him and his "custard monster" as he calls the monster in his head (Jasper has "custard headaches".. a three year olds interpretation of what I had and he had!  )
When his hit is over I always raise his arm in the air and say "you won" "you beat the monster!" and make a big thing of it and he now see's it (out of hit times) as a fight and he's going to kick him back and things like that. It raises his spirits so that he does have good times in between. The hardest bit is teaching them to live their lives and not bow down to it. It's not an overnight process though but I have every faith you will get there
Get him to draw pictures about it and then to draw pictures of how he is going to beat it, by encouraging him to fight and play nasty with the beast you can make him laugh too and once he starts to laugh it's a hop skip and a jump to enjoying the rest of the day!
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xaronne
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Re: My 5 1/2 yr old is going through hell!
« Reply #13 on: May 26th, 2006, 6:39am » |
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I'm smiling and crying at the same time. I think I'm turning into a blubber, cry baby. The smile is because I've just finished reading the story The crying is cos I'm overwhelmed at the kindness of people here, especially one cute lady!
I do have a lot of help from my parents; Darren is with them while I'm here at work. I'd love to be there more for him but I also realise I have to work, or else!
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kayarr
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Re: My 5 1/2 yr old is going through hell!
« Reply #14 on: May 26th, 2006, 8:11am » |
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My heart goes out to both of you!
If you ever want to just vent please write!
Kimberly
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xaronne
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Re: My 5 1/2 yr old is going through hell!
« Reply #15 on: May 29th, 2006, 4:40am » |
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Grrrrr why are doctors so reluctant to admit that clusters happen, and they happen often!!! Just this morning I called the neurologist who thinks that he has clusters, and she now seems to have changed her mind. 
When she asked if he wakes up at night and how often he got headaches since she saw him (a week last Friday) she changed her tune. She is now thinking that it is something psychological . This is getting me so confused
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Jasmyn
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Re: My 5 1/2 yr old is going through hell!
« Reply #16 on: May 29th, 2006, 5:41am » |
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Xaronne, I'm so sorry you and your little boy has to go through this. Helen is an angel as she has first hand knowledge with her son and goes through this condition herself, so her advise is solid.
All I can say is that we are here for you and I wish your little boy PFDAN's.
Hang in there and I do hope you find a neuro that will help and understand soon.
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LeLimey
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Re: My 5 1/2 yr old is going through hell!
« Reply #17 on: May 29th, 2006, 5:46am » |
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Can you ask for a second opinion Sharonne? She sounds pathetic.
Nobody could fake pain like this least of all a child. I'd question her competancy (but keep using the o2!)
Have you any idea of what's made her come to that conclusion?
Incidentally our lovely Ben, the clustermasx hero has told me one is winging it's way to Malta for you. I wanted to tell you here not in a pm so that everyone else can see too and know just why I think Ben is BLOODY BRILLIANT!! (sorry Ben, I know you hate me going on about it in public but tough!  )
Helen x
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xaronne
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Re: My 5 1/2 yr old is going through hell!
« Reply #18 on: May 29th, 2006, 6:16am » |
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HI Helen,
once again thank you for your support. The reason she seems to change her tune is that I called this morning asking a prescription to get a second oxygen tank. I informed her that oxygen does not always do away with his pain and that he sometimes (most nights in fact) he wakes up at night crying with a headache. The problem is that whilst I am at work, Darren is at school in the morning and with my parents in the afternoon. I pick him up at about 5pm straight after work. So ideally we would have a tank at home and another one at mum's. Here we rent the oxygen tank from hospital against a deposit and the only way you can get a second one is if you can prove that one is not lasting long. In fact we used up the first one in one week. Also since Darren and I live in a flat on the first floor, the tank is too heavy for me to carry around between my place and my parents' every morning and afternoon! So what I am hoping for is that we get a second one, one of which will be fitted with the clustermasx (thanks a real lot gain Ben, looking forward to trying it) and we see from there. Problem is that nobody seems to be very informed about this cluster bugger! There is no single mention about it in the university's medical school text books!! So I am just crossing fingers that the mask will work
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LeLimey
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Re: My 5 1/2 yr old is going through hell!
« Reply #19 on: May 29th, 2006, 9:27am » |
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Sharonne,
Let me see what I can get info wise for you for O2 specifically for kids. Sending out some emails as we speak.
Helen
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LeLimey
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Re: My 5 1/2 yr old is going through hell!
« Reply #20 on: May 29th, 2006, 9:46am » |
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Sharonne, check your instant messages
Helen x
edited to add and now check your emails! Tomorrow is going to be a MUCH better day
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| « Last Edit: May 29th, 2006, 12:19pm by LeLimey » |
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xaronne
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Re: My 5 1/2 yr old is going through hell!
« Reply #21 on: Jun 2nd, 2006, 9:34am » |
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Does oxygen treatment take getting used to?? It doesn't seem to be working, yet. Sometimes his pain passes within 10 minutes as seems to be the average. But at others (more often than not) it just won't go. Today we are trying the mouth-piece since the mask makes him even more irritated than he already is. Is it possible that it is not clusters he's getting after all? Confusion!!
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E-Double
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Re: My 5 1/2 yr old is going through hell!
« Reply #22 on: Jun 2nd, 2006, 9:44am » |
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Unfortunately Not everyone is responsive.
How long does your little guys attacks usually last unaborted?
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I can't believe that I have to bang my
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But the blows they have just a little more
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Gonna take a breath and try again.
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xaronne
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Re: My 5 1/2 yr old is going through hell!
« Reply #23 on: Jun 2nd, 2006, 10:50am » |
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Not always the same, usually between 30 mins to an hour. But sometimes they are less severe and last shorter. Sometimes just icy water works and at other times nothing seems to make him better. At the moment he is getting pains about 3 or 4 times a day, but thankfully he wakes up just once at night and goes back to sleep within minutes.
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LeLimey
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Re: My 5 1/2 yr old is going through hell!
« Reply #24 on: Jun 2nd, 2006, 11:32am » |
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Sharonne ask the neuro about Paroxysmal Hemicrania. Its from the same group of headachs called TACs' as CH but it's categoried by having attacks of a shorter duration. It responds well to other meds, namely indomethacin which I know kids can have as I know of another 5 year old here in the UK who has PH and is coping very well on indomethacin. It's certainly worth mentioning and even trying.
Hang in there
Helen xxx
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