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Title: My 5 1/2 yr old is going through hell! Post by xaronne on May 25th, 2006, 3:31am :( 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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Title: Re: My 5 1/2 yr old is going through hell! Post by LeLimey on May 25th, 2006, 3:47am 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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Title: Re: My 5 1/2 yr old is going through hell! Post by marlinsfan on May 25th, 2006, 2:38pm 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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Title: Re: My 5 1/2 yr old is going through hell! Post by maffumatt on May 25th, 2006, 4:42pm 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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Title: Re: My 5 1/2 yr old is going through hell! Post by DisneyRN on May 25th, 2006, 4:52pm 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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Title: Re: My 5 1/2 yr old is going through hell! Post by thebbz on May 25th, 2006, 8:54pm The clustermasx makes a world of difference. All the best to your,"little guy". ;;D Your not alone here and neither is he. jb |
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Title: Re: My 5 1/2 yr old is going through hell! Post by Jonny on May 25th, 2006, 9:01pm on 05/25/06 at 16:52:03, DisneyRN wrote:
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Title: Re: My 5 1/2 yr old is going through hell! Post by Linda_Howell on May 25th, 2006, 11:25pm I'm not picking on you, DisneyRN, but this quote really has me confused. [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] Quote:
Oh God, how I wish it would....Linda |
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Title: Re: My 5 1/2 yr old is going through hell! Post by kcopelin on May 25th, 2006, 11:39pm 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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Title: Re: My 5 1/2 yr old is going through hell! Post by xaronne on May 26th, 2006, 3:07am 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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Title: Re: My 5 1/2 yr old is going through hell! Post by LeLimey on May 26th, 2006, 5:57am 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 [smiley=hug.gif] Helen |
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Title: Re: My 5 1/2 yr old is going through hell! Post by xaronne on May 26th, 2006, 6:09am 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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Title: Re: My 5 1/2 yr old is going through hell! Post by LeLimey on May 26th, 2006, 6:25am 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! [smiley=laugh.gif]) 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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Title: Re: My 5 1/2 yr old is going through hell! Post by xaronne on May 26th, 2006, 6:39am 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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Title: Re: My 5 1/2 yr old is going through hell! Post by kayarr on May 26th, 2006, 8:11am My heart goes out to both of you! If you ever want to just vent please write! Kimberly |
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Title: Re: My 5 1/2 yr old is going through hell! Post by xaronne on May 29th, 2006, 4:40am 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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Title: Re: My 5 1/2 yr old is going through hell! Post by Jasmyn on May 29th, 2006, 5:41am 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. [smiley=hug.gif] |
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Title: Re: My 5 1/2 yr old is going through hell! Post by LeLimey on May 29th, 2006, 5:46am 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!! ;;D (sorry Ben, I know you hate me going on about it in public but tough! :-* ) Helen x |
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Title: Re: My 5 1/2 yr old is going through hell! Post by xaronne on May 29th, 2006, 6:16am 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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Title: Re: My 5 1/2 yr old is going through hell! Post by LeLimey on May 29th, 2006, 9:27am 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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Title: Re: My 5 1/2 yr old is going through hell! Post by LeLimey on May 29th, 2006, 9:46am 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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Title: Re: My 5 1/2 yr old is going through hell! Post by xaronne on Jun 2nd, 2006, 9:34am 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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Title: Re: My 5 1/2 yr old is going through hell! Post by E-Double on Jun 2nd, 2006, 9:44am Unfortunately Not everyone is responsive. How long does your little guys attacks usually last unaborted? |
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Title: Re: My 5 1/2 yr old is going through hell! Post by xaronne on Jun 2nd, 2006, 10:50am 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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Title: Re: My 5 1/2 yr old is going through hell! Post by LeLimey on Jun 2nd, 2006, 11:32am 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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Title: Re: My 5 1/2 yr old is going through hell! Post by E-Double on Jun 2nd, 2006, 11:55am on 06/02/06 at 11:32:38, LeLimey wrote:
I was thinking the same thing. |
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Title: Re: My 5 1/2 yr old is going through hell! Post by LeLimey on Jun 9th, 2006, 4:40am Sharonne I know you taking your son back to the neuro's today and I've been thinking of you all week. I won't be able to check in again until tomorrow but I wanted you to know that I AM thinking of you, I WILL be thinking of you all day and the first thing I do when I get home tomorrow is check to see if you have posted. Update us when you can, you'll be in our thoughts lots of love Helen xxx |
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Title: Re: My 5 1/2 yr old is going through hell! Post by bpdertcdr on Jun 12th, 2006, 1:07am My love goes out to you ... I remember when my wife was pregnant ... I used to just cry in the hope that my son wouldn't inherit my CH ... even know, he's almost 2, and when he's in a crying fit ... I'm wondering if he is getting a visit from the Bastard. I wish you and your little one all the best. Good luck. Mike |
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Title: Re: My 5 1/2 yr old is going through hell! Post by pleasantlyblue on Jun 16th, 2006, 4:47pm on 05/26/06 at 06:25:00, LeLimey wrote:
Althogh I'm new to the board, this thread broke my heart. I've had CH since I was 11 (35 now) and now that I'm a mother myself (none have the beast so far thank God), I know what my mother must've gone thru (she had 2 kids with CH). As hard as it must be to do, the best gift you can give a child sufferer is help him learn to live a "normal" life between hits. We were expected to do our chores and homework daily. We were enrolled in sports and activities. Sometimes we would would be late or miss out on these things due to hits, but as soon as the pain was gone, we were expected to dive right back into life. I now know that after each hit, she would go hide and cry, but she did her best to never let us see her guilt because my brother and I always felt bad when we thought we made her sad. She loved us, comforted us, supported us, let us vent to her when we would go thru the "why me?" stages. She fought with countless doctors just like you are doing now. But the best thing she did was empower us. After every hit she always had something encouraging to say like "man, you really handled that headache well," or "that's my girl, you fought that beast and won didn't you," or "If you guys can handle that pain and survive, you can handle anything life gives you." I know she pitied us in her heart, but she never showed us pity because she knew the rest of the world wouldn't pity us. She made us feel strong when we were at our weekest. I can only imagine the weight you must be carrying and what a balancing act it must be. I would rather have CH than watch one of my kids suffer. I just thought you should know that the person I respect most in this world is my mother who raised two CH kids. I think that what you are doing is amazing. When it gets so hard you can't handle it, remember that my mom loved her kids enough to always find her way. I can tell that you love Darren enough that you too will always find the strength and the way. You and Darren are in my prayers daily...good luck and pf wishes! |
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Title: Re: My 5 1/2 yr old is going through hell! Post by kcopelin on Jun 17th, 2006, 11:06am Sharonne, you and Darren are also in my prayers each day. How did the trip to the neuro go? Kathy |
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Title: Re: My 5 1/2 yr old is going through hell! Post by xaronne on Jun 26th, 2006, 5:02am Hi all, thank you all for your support and prayers. I have a quick question since oxygen doesnt always work. Has anyone tried any sort of alternative medicine? I know my little one finds a little comfort when he's on oxygen and I message his forehead and apply a cold compress. So maybe there's something out there which may help prevent these bastard headaches from happening! |
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Title: Re: My 5 1/2 yr old is going through hell! Post by LeLimey on Jun 26th, 2006, 7:01am Sharonne the only preventative that I know of that is safe for kids is topiramate. Sadly it will dope him up to the eyeballs (do a search on here for topiramate or topomax and see others experiences.) I had a horrific time with it so no way will I let Jasper have it in case (being my son) he has the same reaction.. definitely one to discuss with your neuro. Alot of us get benefit from drinking cold red bull (high energy drink with caffeine and taurine) at the onset of a hit but yet again.. you have to weigh up giving that to kids. The biggest problem with all o it is they are so small and all the drugs for CH are quite nasty and to be honest, no one knows what they'll do long term to a small child. I feel so torn by it all and I know you feel the same. Its a very hard road to walk when you have a child with CH. Ice works brilliantly for me, I find it really comforting, I find if I have an ice pack to my face and one on the back of my neck it really helps, I don't know why the neck one works, possibly to dowith the occipital nerve - but it does for me at least! How did you get on when you went back to the neuro? from this last post it doesn't sound like they were alot of help :-/ |
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Title: Re: My 5 1/2 yr old is going through hell! Post by seasoned_vet. on Jun 26th, 2006, 7:56am sitting here trying to read these notes with tears running down my cheeks, I can give no better advice than that allready given by some very caring and knowing people. you and your son are in my and my families prayers!!!!! |
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Title: Re: My 5 1/2 yr old is going through hell! Post by xaronne on Jun 26th, 2006, 8:35am Well not much news there. The appointment at the neuro was only to try and get a prescription for a second oxygen tank. Since Darren is with my parents while I'm at work we did need another one to really judge if o2 works or not. It was useless having one at home for example, when he gets his worst hit around 3-4pm. On the other hand if we left the tank at mum's and he gets a headache while at home, he wouldnt have it handy. At hospital the neuro asked me how it's going with oxygen and I told her that it doesnt always abort his pain. So once again she told me she thinks it phsycological. I have thought of taking a pic of Darren during one of his headaches to show her!! Just looking at his right eye, without hearing him cry, is enough to break my heart :( Helen I think what you say about ice does make a difference. The only problem is that it was so hard to convince him to hold the mask to his face (temperature soars in Malta!) while I held the cold pack on his forehead and |
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Title: Re: My 5 1/2 yr old is going through hell! Post by xaronne on Jun 26th, 2006, 8:36am neck. He wouldnt stop wriggling away! |
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Title: Re: My 5 1/2 yr old is going through hell! Post by LeLimey on Jun 26th, 2006, 9:37am Sharonne next time you speak to her ask her about paroxysmal hemicrania.. if Darren tries indomethacin it could block all his attacks, its relatively fast to kick in too so it should start working within a week (explain to Darren it takes a few days to start to work so he doesn't get upset about it) I really think it would be worth a try for you Fingers crossed! Helen |
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Title: Re: My 5 1/2 yr old is going through hell! Post by xaronne on Jun 26th, 2006, 10:13am But my goodness these pills have quite a few side effects! I was just thinking, whilst taking ibuprofen Darren was like a zombie, walking around as if always half asleep. Even when crying he had no strength. Up to last week, when oxygen was not available, we were giving him migraleve which did work slightly...but he itches all over!! Now we are trying solpadeine which seem to be making a little difference. This morning he said that he head was throbbing all trough the night, he was on oxgygen for about 20mins from around 9pm, then at 930 i gave him 0.5 solpadeine melt, and off to sleep he went. At about 1.3am he woke up again complaining, but I could tell that he only had a slight headache so I took him back to sleep. At 7am he woke up again with a red swollen right eye so it was back to oxygen for about 15mins (he almost went to sleep with the mask still on!). So what to do?? I am feeling bad because after a hard week at work I have to do both housework and a man's job around the house plus take care of the little one. Feeling exhausted all the time doesnt help, so I am not always as patient and supportive with him as I should be. |
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Title: Re: My 5 1/2 yr old is going through hell! Post by LeLimey on Jun 26th, 2006, 5:27pm Please be very careful with the solpadeine Sharonne, its highly addictive. It has the same stuff in it as Vicodin does. It will also cause rebound headaches or medication overuse headaches as they are also called so its definitely a drug to be extremely careful with. Its tough, no choices you make are either easy or side effect/risk free so all I will do is try and help you find out as much as I can about them all. At the endof the day you need to decide what is the right course of action for your son and I'll support you in every way with that :) We're always here for you, don't forget that Helen |
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Title: Re: My 5 1/2 yr old is going through hell! Post by xaronne on Jun 27th, 2006, 3:29am Oh! So maybe the best option when oxygen doesnt work is to give him children's panadol. The migraleve, while they did work for a while, had him break out in a rash. He is always scratching away especially in summer, but now he is full of scratches and scabs, all over :( The next appointment at the neuro is in August since we were given a three month trial for the o2, so its still some time before we go back. Don't know what to do!! |
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Title: Re: My 5 1/2 yr old is going through hell! Post by LeLimey on Jun 27th, 2006, 3:56am Phone her, you can't wait until August that's obscene and totally unfair.. no neuro would leave an adult suffering like that without any pain relief and its completely unacceptable to do so with a child. I am even wondering why if she thinks its psychological she isn't even trying to do something from that score?? Very odd. Phone up and say you want either a phone appt or an actual appointment to discuss further treatment options as you need to have a back up to the Oxygen. If she isn't amenable to that then its time for a new neuro. You're the only person your son has to fight for him, I know how hard that is because it's the same for me and I know how I hate having to keep pushing and pushing but we just have to do it don't we? The alternative doesn't bear thinking about. I'm about to send you an IM regarding more help, give it five minutes for me to type LOL |
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Title: Re: My 5 1/2 yr old is going through hell! Post by offshore on Jun 27th, 2006, 6:13am Wow, do I feel for you. I have a 5 year old also and It would break my heart if she had these. I wish you the very best with this and my heart goes out to you. I dont have alot to add to all the great suggestions here but just wanted to say that the ice methods helps for me too. A nice ice pack on the CH side of my head moving from the top to the temple area (never staying in one spot too long) takes it from a KIP 8 or 9 down to something that I'm greatfull for. (anything lower than an 8 or 9). Good luck and we'll pray for you and your son. |
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Title: Re: My 5 1/2 yr old is going through hell! Post by Weatherman on Jun 28th, 2006, 11:36pm Xaronne I am brand new here but it's threads like this one that define just how wonderful the people are here and how so very important it is to get this kind of support. Me and everyone else in here will always be here if you need to vent but I am guessing you probably aleady know that now. I'll add you and your son to my prayers tonight! Take Care and God Bless |
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