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Topic: Update on my son (Read 534 times) |
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LeLimey
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Update on my son
« on: Jun 2nd, 2005, 3:12pm » |
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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!
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lionsound
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Re: Update on my son
« Reply #1 on: Jun 2nd, 2005, 3:15pm » |
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's for you Helen...and Jasper too!!!
Here if you need,
Rori
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aprilbee
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Re: Update on my son
« Reply #2 on: Jun 2nd, 2005, 3:18pm » |
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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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Langa
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Re: Update on my son
« Reply #3 on: Jun 2nd, 2005, 3:42pm » |
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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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E-Double
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Re: Update on my son
« Reply #4 on: Jun 2nd, 2005, 4:11pm » |
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Many hugs for you both!!!
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maffumatt
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that poor baby!
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Melissa
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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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Linda_Howell
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Re: Update on my son
« Reply #7 on: Jun 2nd, 2005, 4:45pm » |
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Quote:| 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 |
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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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Grandma_Sweet_Boy
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Re: Update on my son
« Reply #8 on: Jun 2nd, 2005, 4:58pm » |
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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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Jeepgun
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Re: Update on my son
« Reply #9 on: Jun 2nd, 2005, 5:05pm » |
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 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.
to you both... Hang in there.
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Ghost
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Re: Update on my son
« Reply #10 on: Jun 2nd, 2005, 5:30pm » |
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Sorry
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.
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broomhilda
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Re: Update on my son
« Reply #11 on: Jun 2nd, 2005, 6:20pm » |
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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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clarence
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Re: Update on my son
« Reply #12 on: Jun 2nd, 2005, 6:27pm » |
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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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gMike
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Re: Update on my son
« Reply #13 on: Jun 2nd, 2005, 6:41pm » |
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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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Jonny
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Re: Update on my son
« Reply #14 on: Jun 2nd, 2005, 7:24pm » |
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....Excellent post Mike.
Sorry Helen.
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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.
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nani
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Re: Update on my son
« Reply #15 on: Jun 2nd, 2005, 7:32pm » |
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hugs and much love to both of you, nani
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pattik
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Re: Update on my son
« Reply #16 on: Jun 2nd, 2005, 8:03pm » |
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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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Ree
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Re: Update on my son
« Reply #17 on: Jun 2nd, 2005, 10:02pm » |
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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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Candycane
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Cathi04
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Re: Update on my son
« Reply #19 on: Jun 2nd, 2005, 10:54pm » |
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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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cootie
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Re: Update on my son
« Reply #20 on: Jun 2nd, 2005, 11:01pm » |
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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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Charlie
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Re: Update on my son
« Reply #21 on: Jun 2nd, 2005, 11:52pm » |
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Mom does all right but this really sucks.
Ya never get a break. How about one effen thing at a time? 
Charlie
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sandie99
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Re: Update on my son
« Reply #22 on: Jun 3rd, 2005, 1:08am » |
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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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Gator
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Re: Update on my son
« Reply #23 on: Jun 3rd, 2005, 2:02pm » |
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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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seasonalboomer
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Re: Update on my son
« Reply #24 on: Jun 3rd, 2005, 2:10pm » |
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on Jun 3rd, 2005, 2:02pm, Gator wrote:| You are officially a CH supporter, now. |
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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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