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Kimmie

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It's All My Fault
Sep 23^rd, 2008 at 9:54am

My 10 year old son, Drake has been having headaches lately. I started observing his ha and asking him where it hurts and how he feels....same symptoms of CH. I thought there was nothing worse than having CH, but to now see my son in that same pain threw me over the edge. Did I pass it down?? A child so young shouldn't have to go through this. Does any other sufferer have a child that has CH?

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Brew Ex Member	Re: It's All My Fault Reply #1 - Sep 23^rd, 2008 at 10:35am The genetic component to CH is very small, but it does exist. Get him to a pediatric neurologist for a thorough evaluation.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: It's All My Fault Reply #2 - Sep 23^rd, 2008 at 10:57am There are several on the board whose kids have CH too. The good news is you've already paved the road for him and he doesn't have to go through the years of screwed up diagnosis. Brew's right, let's get him to the neuro and get it figured out early. What a lucky child to have a mom whose already on the ball about CH! Guiseppi
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tuck CH.com Veteran Offline Damn this cross is heavy ! Posts: 232 Gillespie , Illinois Gender:	Re: It's All My Fault Reply #3 - Sep 23^rd, 2008 at 12:19pm Kimmie, NOTHING is your fault!!! you and your son will be in my prayers. Good Luck!!!! Tuck
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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: It's All My Fault Reply #4 - Sep 23^rd, 2008 at 12:59pm My Dad passed them to me. I live in dread of the day they show up in one of my kids. Like Bill said, get him to a pediactric neuro ASAP. -Dennis-
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Charlie CH.com Alumnus Offline Happy to be here Posts: 18971 Jamestown, NY Gender:	Re: It's All My Fault Reply #5 - Sep 23^rd, 2008 at 4:52pm Rats Please get to a doctor about this and remember that it's not your fault. My dad gave me only my ~~good looks~~ cantankerous disposition. Charlie
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TomM CH.com Hall of Famer Offline Posts: 2133 Montgomery Village, MD, USA Gender:	Re: It's All My Fault Reply #6 - Sep 23^rd, 2008 at 5:07pm Charlie wrote on Sep 23^rd, 2008 at 4:52pm: Rats Please get to a doctor about this and remember that it's not your fault. My dad gave me only my ~~good looks~~ cantankerous disposition. Charlie Ditto!!! TomM
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Cathi_Pierce

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Re: It's All My Fault
Reply #7 - Sep 23^rd, 2008 at 5:17pm

Kimmie,
I'll agree with you.......it's horrible,sad, frustrating, painful to watch......but, honey it is NOT your fault!!!
The genes and the chomosones have to align like planets for this to happen.
Please don't beat yourself up about it!
Now, with all that energy you've saved, please do the Neuro thing, and keep us posted. There is a forum for children with Clusters and in fact, one of my fave Ch'ers has a son who has also been diagnosed! Bet Helen has some help for you!
Now, deep breaths, and big ole vibes for both of you!
Cathi

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Tara Ann CH.com Alumnus Offline It's always darkest before the dawn. Posts: 2719 North Carolina, USA Gender:	Re: It's All My Fault Reply #8 - Sep 23^rd, 2008 at 7:36pm It's NOT your fault. In a way be thankful you know the signs and can be there to knowingly help. Prayers to you and your son. And get to a neuro asap also! I bet Helen and others can be more help to you.
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Jackie CH.com Moderator CH.com Alumnus Offline Go For It!!! Posts: 5903 Goshen, IN Gender:	Re: It's All My Fault Reply #9 - Sep 23^rd, 2008 at 7:46pm Oh Sweetie......please don't blame yourself. It's not your fault.....not at all. Love & Big Hugs, Jackie
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barry_sword CH.com Alumnus Offline Mountain Biking Keeps Me Sane Posts: 3947 Bracebridge, Canada Gender:	Re: It's All My Fault Reply #10 - Sep 23^rd, 2008 at 8:14pm NOT-YOUR-FAULT!!! I have CH's and I am not even related to you. You know what to do to help, and that is the biggest "ace in the hole" anyone with these can ask for. Your son Drake has you in his corner! That is a god send!
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CH-HELL

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Re: It's All My Fault
Reply #11 - Sep 23^rd, 2008 at 8:27pm

Hi Kimmie, Dont blame yourself, you gave him life and life with CH is better than no life at all. When I was in the army I was a medic and did a rotation in pediatrics the doctors are quick to say that its phsycological if you have CH's at his age they will think he's trying to mimick you, I suggest you dont start by saying "I have CH and", but get him to the doctor, get a ct scan and if it is Ch's then you are there for him and know how to help. Atleast he's got you and he wont have that alone feeling most of us have. It not your fault. Phil

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flipperlips

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Re: It's All My Fault
Reply #12 - Sep 23^rd, 2008 at 8:32pm

Please, please don't blame yourself. It's not your fault. Get your little one in to see a neuro as soon as you can. I wish no one had to suffer at the hands of the beast, but I'm sure that it's twice as hard being a sufferer yourself and watching your precious little one going through it. Please keep us posted.

Prayers and good vibes for you and your little one.

Hugs & Kisses,

Jen

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Brew Ex Member	Re: It's All My Fault Reply #13 - Sep 23^rd, 2008 at 8:54pm It's my fault. If you feel you need to blame someone, blame me. I always tell people in line behind me at the grocery store the same thing. Genetics are genetics. Plus, he hasn't even been diagnosed yet, so don't put the cart before the horse.
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superhawk2300

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Re: It's All My Fault
Reply #14 - Sep 23^rd, 2008 at 9:20pm

Bill is correct. Relax until it is time to worry.

THEN, is still isn't your fault as while there is a *very* small gnetic component to CH, just because someone who has CH has offspring that have CH, doesn't mean they got it "handed down". The child just could have it with out any genetic link. That is how small the genetic component is.

So IF your child does get a diagnosis, THEN you do some genetic testing and prove your genes had everything to do with the condition, THEN you can grapple with the fact that *There is NO fault* for this no matter how you slice it.

Unless of course you developled some mad-scientist CH growing serium you purposely injected your unborn baby with. If (and only if) that is the case you are truely one sick person and should be ashamed......

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superhawk2300 CH.com Hall of Famer Offline Posts: 901 New Berlin, WI Gender:	Re: It's All My Fault Reply #15 - Sep 23^rd, 2008 at 9:21pm Oh, I meant to say, "Bill is correct - it IS his fault"!
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Karla CH.com Alumnus Offline One of Many and Never Alone - Join OUCH Posts: 3837 x1\|Madison WI USA Gender:	Re: It's All My Fault Reply #16 - Sep 23^rd, 2008 at 9:34pm I have chronic ch and my son developed eposodic ch in his early teens. I thought I would be able to pave the road for him but the neuro and ha specialist refused to give him anything else but midrin. Boy am I glad he is an adult now and can take what he needs to. Also, Kimmie this is NOT your fault!
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Ray CH.com Alumnus Offline Ray Posts: 1996 Columbus, Ohio Gender:	Re: It's All My Fault Reply #17 - Sep 23^rd, 2008 at 10:10pm Kimmie: As all have said, it's NOT your fault. You have a wealth of experience that can be passed on and you can see this through. When life deals you lemons, well, you know... We'll be here to help, however we can. Ray
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Kirk

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Re: It's All My Fault
Reply #18 - Sep 24^th, 2008 at 6:47am

I'm from Oregon and have CH, and I don't think its your fault. Maybe Cathi's, but not your's. And she's from California anyway. So that probably doesn't count. But I digress.
It isn't your fault if he has CH. Get him to a Neuro and checked out before you even worry about it. If it turns out he has CH. You and a whole bunch of people you know, have a fairly good handle on how to deal with it pumpkin.
So stop the blame game, and get the little guy diagnosed. Then you can join Brian and me in blaming everything on Cathi.

Smiley

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Kimmie CH.com Veteran Offline OW!! Posts: 187 US Gender:	Re: It's All My Fault Reply #19 - Sep 24^th, 2008 at 1:10pm Tomorrow 10:30 am.
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kevmd CH.com Hall of Famer Offline Who needs a hypothalamus anyway? Posts: 524 x0\|philadelphia\|USA\|\|0\|0\|PA,Pennsylvania Gender:	Re: It's All My Fault Reply #20 - Sep 24^th, 2008 at 2:46pm good job on the appointment. I feel for the little guy. But you know its still possible to live your life. There is something wrong with everybody.
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flipperlips CH.com Alumnus Offline Live, Laugh, Love Posts: 935 Mcallen, TX Gender:	Re: It's All My Fault Reply #21 - Sep 24^th, 2008 at 6:41pm Let us know how the doctor appt. goes. We're all pulling for you. Hugs and Kisses, Jen
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Kimmie CH.com Veteran Offline OW!! Posts: 187 US Gender:	Re: It's All My Fault Reply #22 - Sep 25^th, 2008 at 5:38pm OK....Here's the deal...confirmed CH. He's on Elavil, and Imitrex ( when needed). The doc would'nt prescribe him o2. Oh well....shit happens I guess.
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Cathi_Pierce

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Re: It's All My Fault
Reply #23 - Sep 25^th, 2008 at 5:53pm

Kimmie, so now you can help him deal.... how fortunate for him that he has a mother who believes the dx, and GETS IT! (as in, comprehends)...
YES, it still sux that he has to deal with the beast, but, with you by his side, he WILL learn how to manage his CH...
I don't understand why the Dr is against the idea of 02........if it works, who would want all those drugs in a child? I'm hoping our Limey-girl will be here soon to help you both, and she can tell you about the Custard-monster.......I think that's what he was..........

About Kirk....there's something wrong with that boy! He left half his brain up in the Andes, I believe, and you probably houldn't trust him. We just let him babble on......... Cheesy

BUT, you can blame me for anything.cept Kirks condition! Kiss

Oh, and Brian?? he's just a big ole redheaded guy from New Yawk...he's not like.err, you-know-who.wesimply have to keep him out of the sun....... Wink

Please keep us posted, Kimmie!

Cathi

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« Last Edit: Sep 25^th, 2008 at 6:13pm by Cathi_Pierce »

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Melissa

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Re: It's All My Fault
Reply #24 - Sep 25^th, 2008 at 7:36pm

Kimmie wrote on Sep 25^th, 2008 at 5:38pm:

OK....Here's the deal...confirmed CH. He's on Elavil, and Imitrex ( when needed). The doc would'nt prescribe him o2. Oh well....shit happens I guess. Smiley

The doc RX's drugs, but not natural O2?? I'd be very pissed if I were you and start looking for a new doc who WILL.

Sorry about the diagnosis hon, but thank God your sweetie has a mom like you to lean on and understand!! There is no worse feeling than thinking you're all alone in this.

hugs,
mel

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Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel

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