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Title: Update on my son Post by LeLimey on Jun 2nd, 2005, 3:12pm Hello everyone, Jasper and I were back at the neuro today and got the results of his MRI. Thank God there is nothing sinister in there but he DOES have Cluster Headaches. I have very mixed feelings. I am overjoyed its not a tumour or anything but I'm gutted that is IS CH.. I guess I've been hoping for a miracle sinusitus or something. (Its called burying my head in the sand! I'm an expert at it!) He has been prescribed pizitofen, at 3 he is just too little for alot of the meds but the doc is fairly confident about this one as its been around a long while. I know he would freak at an o2 mask right now so I'm planning on decorating one with him - feathers and sequins and wiggly eyes.. its going to be a fright I'm sure! I thought if I could get him used to it as a toy during the day and inventing ways in how it makes him well.. show him how much it helps me etc.. I can but try! The trouble is when he is getting hit he is not able to be reasoned with (who is?) At the moment at any rate he is full of beans, he has been out in the garden with Brid and Barney all afternoon riding his bike and chasing the kitten! He is fine right now and thats just how I like it! The hard bit is not spoiling him silly now because I feel so guilty. I know its "not my fault" but I also know each and every one of you would feel the same. I'll get over that though. Just a bit shell shocked right now to be honest. As I get to grips with it though I'll have loads of questions, this is a whole new ball game. I've been reading the children with clusters board all afternoon looking for info but I can't take it in right now. I'm even dippier than usual! (Maria.. shuddup!) I don't know what I would have done without the support and encouragement from all of you here. You lot are the best and I owe you all big time![smiley=hug.gif] |
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Title: Re: Update on my son Post by lionsound on Jun 2nd, 2005, 3:15pm [smiley=hug.gif]'s for you Helen...and Jasper too!!! Here if you need, Rori |
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Title: Re: Update on my son Post by aprilbee on Jun 2nd, 2005, 3:18pm So sorry, but so happy...very bitter sweet....My daughter has CH, she didn't develop them until she was about 9, at least she could tell me whats wrong...I can't even imagine the suffering your heart goes through to see him at 3 dealing with this...bless his heart... :-* |
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Title: Re: Update on my son Post by Langa on Jun 2nd, 2005, 3:42pm I'll be nice Helen... ;) Girl, we've talked about this already, i'm not happy. And to reiterate, Jas is a lucky kid to have you as a Mom...fortunately, there's so much more available to him now to help him than we did his age. I remember my first attack at age 10, but my Mom remembers me having these screaming fits and trying to pull my hair as young as 3 or 4 yo. It makes me sick thinking he has to deal with this pain. Again, I love the idea of decorating the tank with him. Hang in there...we're all here for you girl! Love, Maria |
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Title: Re: Update on my son Post by E-Double on Jun 2nd, 2005, 4:11pm Many hugs for you both!!! |
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Title: Re: Update on my son Post by maffumatt on Jun 2nd, 2005, 4:24pm that poor baby! |
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Title: Re: Update on my son Post by Melissa on Jun 2nd, 2005, 4:27pm Oh man Helen :(, I am so sorry. That is one thing that scares the SHIT out of me, the fact that my kids can inherit it from me. :( CH sucks, but we have to keep up our hope of an end to the madness. All I think is how if my children do end up getting it, that treatment will be 100% better for them, than it was when I was young. hugs 2 you, mel |
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Title: Re: Update on my son Post by Linda_Howell on Jun 2nd, 2005, 4:45pm Quote:
And once you do that and he is able to feel how much it helps him, he'll be fine with it. 3 years old........Jesus. Is there any justice in this world? Rhetorical question...I'm so sorry Helen. Linda |
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Title: Re: Update on my son Post by Grandma_Sweet_Boy on Jun 2nd, 2005, 4:58pm Helen - I'm so sorry to hear this. Poor little guy - it's just not fair. Thank God it is something that's treatable - still not fair - but at least not as ominous as other outcomes could have been. You'll do fine with this. Decorating the mask is a great idea. Incredibly brilliant, actually. Hugs to you both Carol |
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Title: Re: Update on my son Post by Frank_W on Jun 2nd, 2005, 5:05pm :'( Damn.. This sucks so bad... That poor little guy. :'( If anyone has the strength and creativity to help him deal with this though, it's you, Helen. [smiley=hug.gif] to you both... Hang in there. :( |
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Title: Re: Update on my son Post by ghost62 on Jun 2nd, 2005, 5:30pm Sorry :'( :'( :'( [smiley=hug.gif] [smiley=mad.gif] The beast has no heart but causes ours to grow. best to you both, wish I could take his pain. there is no sense in the wee little one to hurt like this. [smiley=hug.gif] |
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Title: Re: Update on my son Post by broomhilda on Jun 2nd, 2005, 6:20pm Awww Helen :-/ :( I am so sorry, biggest hugs to you both, we are thinking of you and wish it not to be. You know where to get support we are here for you, you are a great mom! Hugs and pf wishes |
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Title: Re: Update on my son Post by clarence on Jun 2nd, 2005, 6:27pm Prayers for you and Jasper. I am so sorry that you both have to go through this. At least we all have each other. Casey |
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Title: Re: Update on my son Post by gMike on Jun 2nd, 2005, 6:41pm That SuX!!!! I'm sorry that your boy has the curse of CH. At least you know what it is and where to get information. It would be worse if you were ignorant of this disease and didn' have the education that you possess. You're already starting to make positive moves with the decorated mask - great idea! Yes, I'm an optimist but some folks escape the Beast and why shouldn't your son be one of those folks. Hoping for the best for both of you!!!! |
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Title: Re: Update on my son Post by Jonny on Jun 2nd, 2005, 7:24pm :'( ....Excellent post Mike. Sorry Helen. |
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Title: Re: Update on my son Post by nani on Jun 2nd, 2005, 7:32pm :'( :'( :'( [smiley=hug.gif] hugs and much love to both of you, nani |
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Title: Re: Update on my son Post by pattik on Jun 2nd, 2005, 8:03pm Helen, Here's hoping your son is young enough to benefit from the cure or at least definitive treatment for which we are all striving on this site. Maybe we have had to suffer for so long, but thanks to our group efforts and communication, we can make progress happen in time to help our children. :'( Pat |
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Title: Re: Update on my son Post by Ree on Jun 2nd, 2005, 10:02pm Helen I am so sorry. I cannot imagine. We have had our scares with Breezys headaches but not such a diagnosis... Thank God he has the strongest mom and as Mike said in different words.... you aren't going into this blind and have the information you need.... If there is anything I can do for you. Do not hesitate to ask... We love you... Ree |
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Title: Re: Update on my son Post by Candycane on Jun 2nd, 2005, 10:47pm My heart hurts :'( :'( Got your PM now check yours, hon |
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Title: Re: Update on my son Post by Cathi04 on Jun 2nd, 2005, 10:54pm Poor Jasper! Poor Helen!!!! Lucky Jasper, to have a mom who KNOWS how to cope! Lucky Helen, to have Jasper to love...... Lucky US, to see how a Mom helps her child cope..... The decorating idea is an excellent one........and could VERY WELL start a trend! How bout an OUTRAGEOUS mask contest??????? :-*Cathi |
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Title: Re: Update on my son Post by cootie on Jun 2nd, 2005, 11:01pm Wow that seems too young for a kid to comprehend what is going on let alone deal with it at such a young age.........havieng ch he will grow up very fast. Pain will make you or break you Pam So sorry !!!!! |
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Title: Re: Update on my son Post by Charlie on Jun 2nd, 2005, 11:52pm Mom does all right but this really sucks. Ya never get a break. How about one effen thing at a time? http://www.netsync.net/users/charlies/gifs/caveblob.jpg Charlie |
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Title: Re: Update on my son Post by sandie99 on Jun 3rd, 2005, 1:08am Oh Helen.... :( I'm so sorry for little Jasper... :'( Beast in his age... I can't even imagine what it's like! Luckily for him you know exactly what it's like to have it so you can help him out. You both are in my thoughts. Best wishes, Sandie |
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Title: Re: Update on my son Post by Gator on Jun 3rd, 2005, 2:02pm Helen, I am so sorry your little one has been hit with this. It's bad enough for adults to get it, but a child. Truly sad. At least you know what it is and how to deal with it. Most children with CH aren't that lucky. You may not have as much trouble with the mask as you think. I cut the hose and bag off a mask for my grand daughter to play with so she wouldn't be so afraid when I had to suck O2. A lot of times, she will put her mask on when she sees me wearing mine. You are officially a CH supporter, now. Do what we recommend supporters do. I realize he's only three, but talk to him when he's not having the attacks and explain to him then that the mask will make his head stop hurting. Let him see mommy wearing the mask to make her head stop hurting. Kids learn from seeing and then doing. Okay, everyone. Time for a little family action. Those with experience dealing kids and grand kids, kick it into brainstorming mode and help Helen come up with some ideas for helping Jasper. |
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Title: Re: Update on my son Post by seasonalboomer on Jun 3rd, 2005, 2:10pm on 06/03/05 at 14:02:25, Gator wrote:
That's right. Now Margi can't imply that you are one of those sufferers "lurking" over in the supporter area. ;) Best wishes for you and your little one. |
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Title: Re: Update on my son Post by Margi on Jun 3rd, 2005, 2:32pm yeah, whatEVER, Seasonal. ::) Helen, I'm so sorry to hear about your little guy. There are some fabulous resources over at the OUCH page for kids with clusters - have you checked them out? http://www.clusterheadaches.org/resources/kids.htm It's not easy sitting on this side of the cluster fence, but you WILL be an expert supporter, I just know it. Always here if you need a shoulder. |
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Title: Re: Update on my son Post by LeLimey on Jun 3rd, 2005, 4:00pm Thank you everyone for your support. It means alot. I've been getting Jasper to help me with my mask today (actually strapping it on too.. he has ripped nearly every hair outta my head!) I told him it makes my head stop hurting. I asked him if he wanted to try it on and at first he said no which was fine but then he came back and wanted to have a go.. and of course it fits him like a bucket! I'm going to have to get a paediatric one for him [smiley=laugh.gif]. He thinks it looks like an elephant so we are going to give it big ears and wiggly eyes and tusks (of course!) I'm going to make a body bag for the cylinder too so it turns into a whole new friend! Right now he is fine. He had a good night last night and thats all I can go on. I have no idea when he will get hit again but it tends to be every three to four weeks. They have been two weeks apart though so I can't get complacent. They tend to last for 3 - 4 days at a time too when he gets them. Margi thank you for that link. I spent hours looking at the children and clusters board here yesterday and reading reading and reading a bit more. I have that link too and I shall keep wading through it all. I count my lucky stars hourly never mind daily that I have all of you and the wealth of experience here to fall back on. Sadly not everyone is as lucky as me :'( The important thing I've kept telling myself all today is that first and foremost he is just a little boy. He is bright and funny and extremely mischievious and the fact he has CH is secondary to all that. I've already dealt with him getting hit, I've even had to deal with him getting hit while I was too. At least now I have some meds for him and fortunately one of the members of OUCH UK has already spoken to Prof Goadsby about Jasper and he is going to introduce us at the National Conference next weekend. Like I said, it sucks this has to happen but I am in the best possible position of anyone it has to happen to :-/ Awful brave words now. I don't know what I'll be like when he is getting hit again next.. I'll face that bit when it happens |
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Title: Re: Update on my son Post by Gator on Jun 3rd, 2005, 5:07pm Quote:
And when it does, you bravely deal with him and fall apart with us if need be. We are as here for you as we can possibly be given the circumstances. We GOTTA get that CH commune built. Until we do, you have our cyber-shoulder to lean on. Love to you and to Jasper. Mike |
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Title: Re: Update on my son Post by Donna_D. on Jun 3rd, 2005, 6:23pm I've avoided opening this thread since I first saw it pop onto the board. Helen, I can't imagine....I worry daily about my kids who are right around Jasper's age. I am so sorry. If there is anything I can do, let me know. Give the little man a hug for me and then one for you too!! DD |
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Title: Re: Update on my son Post by lady_bug on Jun 3rd, 2005, 6:47pm I will keep you both in my prayers. |
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Title: Re: Update on my son Post by gMike on Jun 3rd, 2005, 9:59pm What a great idea, to turn the cyliner into the body of his new "elephant buddy"! Thanks for the update. I just hate to think of a little guy with CH but I think you've got it headed in the right direction. Keep reading and thinking about how to manage this, it keeps you fighting against it and it will help others!!! Mike |
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Title: Re: Update on my son Post by Ruth on Jun 5th, 2005, 9:13am I am so sorry to hear this, my prayers are with you and your little tyke. Ruth |
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Title: Re: Update on my son Post by BobG on Jun 5th, 2005, 12:33pm I'm like Donna D. I didn't want to open this thread because I was afraid of what it might say. Now my heart is breaking and I can barely see to type. :'( It just isn't fair. It just isn't right. It should NEVER happen to a child. Prayers being sent that the little one will be OK. |
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Title: Re: Update on my son Post by Jonny on Jun 5th, 2005, 1:58pm on 06/03/05 at 14:10:45, seasonalboomer wrote:
WTF is up with that statement? Helen, you have the knowledge most dont....it sucks but you will get make it.....just dont let Jasper read my posts ;;D Hugs to you and him!!! |
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Title: Re: Update on my son Post by LeLimey on Jun 5th, 2005, 2:16pm Let Jabs read your posts?!! Not a chance.. he might teach you a few words YOU don't know! ;) He's already going down the tats route.. He is a multicoloured bonbsite after a half an hour with a packet of felt tip pens. A word of advice here to all new parents or would be parents. NEVER trust a 3 yr old you can't hear or see... :-/ |
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Title: Re: Update on my son Post by Candycane on Jun 5th, 2005, 2:16pm on 06/05/05 at 13:58:15, Jonny wrote:
I second that!!! ;;D Hugs Jason, stay PF ;) |
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Title: Re: Update on my son Post by Ronny on Jun 5th, 2005, 6:10pm omg Helen, that sucks big time, that poor little fella. I'm so glad he has you who knows a lot about CH. [smiley=hug.gif] |
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Title: Re: Update on my son Post by blossom on Jun 6th, 2005, 8:32am When you told me about Jasper I was floored, saddened and so angry... reading these posts I am reminded of how wonderful this group of people are. They are so right, Helen, if this had to happen then Jasper definately picked the right "mum" to go through this with when he was up with God choosing his family. He picked the right one because not only did he get 1 family, he got 2. I know I can speak for everyone when I say WE love you and Jasper and will be here whenever you need us. Remember, I am a phone call away and a little less than a month and a half away from the biggest American hug you are going to receive. I love you and Jasper and you will be in my thoughts and prayers! Love- Karen and Colin |
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Title: Re: Update on my son Post by LeLimey on Jun 6th, 2005, 8:35am Hey Karen its good to see you back here! I've missed your posts but I'm glad you are having a bit of life outside this too! Give Colin a big cuddle from me and find a really dishy fella to give you a hig hug from me too!! LOL (might as well get the most out of it huh?! ;) ) |
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Title: Re: Update on my son Post by rickyshot on Jun 6th, 2005, 10:09am :'( :'( [smiley=hug.gif] OMg I can't imagine a three year dealing with this pain. But then I used to work in Pediatrics and saw the saddest things in life. Kids born with no limbs, cancer etc...You would be surprised how well they adapt. It really depends a lot on the parents. Don't let him use this to manipulate (yeah right easier said than done) and try not to let him see you panic or cry over this. Let him see you use the mask and Try to be positive with him. This is gonna be very hard. I remember my kids seeing me screaming and breaking up all dishes and getting violent with my headaches so I don't know how realistic my suggestions are. I feel so guilty about things (even though I know better and know it was not my fault). My kids are grown and tell me this and that makes me cry harder sigh... My prayers to y'all. Any chronic illness is a bear to deal with especially with kids.. |
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Title: Re: Update on my son Post by Leesa on Jun 6th, 2005, 10:09pm Helen, sorry to hear Jasper has CH but he's got a GREAT Mum to look to for help!! Hmmmmm wonder if I decortated Dave's mask he might keep the damn thing on for a change. LMAO You just gave me a GREAT idea. He's gonna kill me but Im only on the marry go round once ya know!!! Sending BIG TN size hugs to you and Jasper, Leesa ;;D |
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Title: Re: Update on my son Post by Ree on Jun 6th, 2005, 10:28pm Helen Im glad that you are creative and can doctor up the O2 for Jasper.... When Breezy was little she hated the vacuum so I cut out felt eyes and a smile and made a face on it..... first thing she did was rip off the eyes... LOL ~~~ You hang in there and know that there are many shoulders here to settle your head upon..... I will pray that your little fella has an easy go of it..... possible that its a fluke? maybe they will go away..... ? Im here to the cure.....lovin you guys Ree |
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Title: Re: Update on my son Post by Charlie on Jun 7th, 2005, 4:39am You'd think that one effen thing at a time would suffice...but no. >:( There's something seriously wrong with a universe that lets children fall victim to this horror. Lots of vibes and my all my best. Charlie |
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Title: Re: Update on my son Post by alchemy on Jun 7th, 2005, 5:14am Helen, Jasper is so lucky to have you for a mom, it's such a shitty situation but you have the heart and love to pull him through this. you have been there for me with such kind words and support. all I can do is return the offer you gave me pm me anytime to vent. we up here in maine can handle whatever language you care to throw out. give jasper a big hug for me and take care of you to [smiley=hug.gif] jim |
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