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?

The genetic component to CH is very small, but it does exist.

Get him to a pediatric neurologist for a thorough evaluation.

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

Kimmie, NOTHING is your fault!!! you and your son will be in my prayers. Good Luck!!!!     Tuck

[smiley=hug.gif]

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-

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

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

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

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.  

Oh Sweetie......please don't blame yourself.  It's not your fault.....not at all.

Love & Big Hugs,
Jackie

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!

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

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  

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.

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......

Oh, I meant to say, "Bill is correct - it *IS* his fault"!  :D

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!  

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

   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=smokin.gif]

Tomorrow 10:30 am.

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.  

Let us know how the doctor appt. goes.  We're all pulling for you.

Hugs and Kisses,

Jen

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=mad.gif]

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......... :D  BUT, you can blame me for anything.cept Kirks condition! :-* ;D ;D ;D  

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....... ;)

Please keep us posted, Kimmie!

Cathi

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=mad.gif]

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

Kimmie,

it's not your fault and never will be. Think of it this way: because you know a lot about ch, you can help your son to deal with this much better. I'm so sorry that you both have ch. [smiley=hug.gif] But think of it as a battle you two can fight together.

PF days to you both,
Sanna

I now how you feel, except mine is a bit worse (at least in my eyes).  My daughter did inherit a disease from my side of the family.  Worse, it skipped me entirely.

Carolyn

So sorry to hear about your son!!!!  At least you understand what he is going through and you can help him cope.  Keep you both in my thoughts and prayers.

Hugs and Kisses,

Jen

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=mad.gif]

I'm sorry everyone but WTF?

You post here on the 23rd, get an appt for on the 24th for the 25th and then you get a confirmed diagnosis with no mention of an MRI???

You got Elavil and Imitrex for a ten year old when Imitrex isn't prescribable for under 16's??

I think I need more fingers because this is so not adding up

wrote on Sep 26^th, 2008 at 10:18am:

...no mention of an MRI???

I didn't even think about this one. Shame on me.


Quote:

...Imitrex isn't prescribable for under 16's??

This I didn't know.

You're right - something's rotten in the state of Denmark.

I have to agree with Helen.   There should maybe be a little more investigation into this.  Don't feel like you shouldn't question your child's doctor.  It is your job to be his advocate and if a doctor doesn't like that you are requesting more investigation or questioning his diagnosis, then it's time for a new Dr.

I actually speak from experience.  My daughter, Morgan, was a very sick baby.  She had unexplained fevers, as high as 105.8%.  When I called the doctor, he would just treat the fever.....never investigating the cause.  Finally, I would have brought her into the office  enough that they would say she had an ear infection and give her an anti-biotic which would help her get better.   I always felt in my heart that something was really wrong...but, who was I to doubt the Dr?

On Mother's Day, when Morgan was three, I put her to bed.  She seemed fine.  She woke up vomiting and hallucinating.  The Dr. said that it was a virus and to bring her in the next day......he saw her at 6:00pm.  He then decided that she has a bladder infection.  I was to give her an anti-biotic and she would be fine.   After calling and calling the office because she was getting worse instead of better, and being told to "give the med some time" I took her to St. Louis Children's Hosp.   She was diagnosed with E-Coli Euro sepsis.  E- Coli was all through out her body and she was in great danger of not pulling through.  

After that crisis, they ran some tests that concluded that she had a condition called Kidney reflux.  It causes the urine to back up into the kidneys.  She had been having infections for three years!  Now her kidneys are damaged.   She may lose her right one.  It  is not growing well and the other is too large.  If I had just questioned the doctor more when she was a baby, she would be healthy today.  All it would have taken was a low dose prophylactic anti-biotic every day.  Talk about blaming yourself!  

You did NOT cause your little boy to have CH.  BTW, I had kidney reflux as a child too.... I out grew it.  I shared this with you so that you would not make the same mistake that I did.

Take care and give hugs to your sweetie for me!

Jeannie

Hate to disappoint you...but yep my doc saw Drake on the 24th AND the 25. Here in good ol' Texas you have what's called a medical express lane. Doc got on the computer and scheduled him down the street to the Ft. Worth Diagnostic center the same DAY (actually in 2 hours time) Doesn't hurt also when your husband is a member of the City Council either. Don't blame any political mumbo jumbo on me, I only married into it- sat in at a couple meetings ...
b-o-r-i-n-g.I don't give a rats ass if my son got "special treatment", he got treated..period.
Imitrex can be prescribed from age 9 and up..feel free to do some research...I did, and the doc felt comfortable enough with giving him the 25mg tablets vs what I use (6mg injections) Now...you can put yer fingers back down.

????  What on earth are you talking about Kimmie with "put your fingers back down"??  We're just concerened about the fact that instead of harmless O2 even being tried, the doc just threw drugs at the kid. :-/

Kimmie,

When you post, we assume that it is because you are interested in our in put.  I don't think that anyone meant anything derogatory by what was said.  We all care about each other here and are just offering support, advice, and opinions.  That's what I hope for when I post.  It's great that Drake was seen so quickly!  You have been around here long enough to know that most EVERYONE here advocates 02 as a first line abortive.  It shouldn't surprise you that it was brought up.  If Drake were my child I would want an MRI to rule out anything more serious that CH.  

Jeannie

Melissa wrote on Sep 26^th, 2008 at 12:24pm:

????  What on earth are you talking about Kimmie with "put your fingers back down"??  We're just concerened about the fact that instead of harmless O2 even being tried, the doc just threw drugs at the kid. :-/

the lady was counting her fingers...I did the math for her... ;)

Kimmie wrote on Sep 26^th, 2008 at 12:57pm:

Melissa wrote on Sep 26th, 2008 at 12:24pm: ????  What on earth are you talking about Kimmie with "put your fingers back down"??  We're just concerened about the fact that instead of harmless O2 even being tried, the doc just threw drugs at the kid. :-/ the lady was counting her fingers...I did the math for her... ;)

Ohhhhhhhhhhhhh, ok, I get it now.  LOL  Sorry!

Kimmie sounds like your your taking some abuse but your talking to a bunch of clusterheads, who know this pain and the trials most of us have gone through to get a diagnosis.  We are all concerned with the quick CH call,  with no mention of a CT or MRI.  So please tell us this was done.        Phil

Dammit Kimmie. Sorry for the young one. Kick demon butt.
all the best
thebb

CT negative. I did view them back at the Dr's office...it's funny how I can make out little figures...ya know....like they  do to ya when you have to be tested for anxiety or whatever...they show you the pictures and ask what you see, all kidding aside, it was a little disturbing having to view my son's CT. I got scared just looking at mine. [smiley=yikes.gif]

Thank goodness that it was neg.   Sounds like you are on top of things!  Sorry for your little guy's pain and yours too.  Remember, everyone here is on your side! ;)

Jeannie