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        New Message Board Archives >> 2004 Posts >> Kidding Aside
        
(Message started by: kimh on Dec 4^th, 2004, 11:28pm)

Title: Kidding Aside
Post by kimh on Dec 4^th, 2004, 11:28pm

Chelsea (my 14yr old daughter) is close friends with a girl in shcool who has had to remove from school for home schooling due to "severe headaches". She is a young adolescent girl highly athletic and motivated individual. Her headaches have intefered with school to the point her family pulled her out for home schooling.,... Chelsea told me about it and i just kept having this nagging thought and haunting memories of my own - i felt COMPELLED to speak to the mom........and so i did.....

We had a lenthty telephone conversation....I mostly LISTENED because i doubt anyone else ever did.........really....

Many of the symptoms her mom described confirmed to a large degree my suspicions. She told me that their current Neuro indicated that Clusters were out of the questions since they only affect men in their late 20s.........OMG you know my bP went out the window.... This young girl is currently taking amyltriptaline plus she is taking Execdrin M. (you know this flipped me out too).

Another young and vibrant female is just beginning to hop on the merri go round and I want to SCREAM. I talked to her mom and referrred her here. I only hope she reads all that is available to help. She would start a sentance and I would finish it - and she was ASTOUNDED and felt such comfort. She told me about the isolation, and depression = that awful DEFEAT that comes with an affliction that we cannot see our way out of and no amount of insurance or money seems to assuage.........I was hit with the zap of a kid with clusters. I know it.

Please put Emily in your prayers. Her family has been through the ringer and is looking for answers***

Title: Re: Kidding Aside
Post by BobG on Dec 4^th, 2004, 11:44pm

A 14 year old with clusters? That is mean, rotten, unfair and just plain sucks.

Can you talk to her face to face? She may not be able to talk to her mother since her mother doesn't know much and maybe it'll get her to open up about her pain.

Maybe talk, and listen, one on one. Maybe with her mother there. Maybe with your daughter there.

And let the mother know you have felt the pain. She may need someone with experience to talk to.

Good luck. I know you'll do everything you can to help.

Until then all we can do is offer a prayer.

Title: Re: Kidding Aside
Post by cootie on Dec 4^th, 2004, 11:57pm

That doc needs someone to cram a CH fact sheet up his.............stethescope. Sheesh.....poor girl......practical Pam

Title: Re: Kidding Aside
Post by nani on Dec 5^th, 2004, 12:02am

It's good that they have you kim. Can you imagine how long it might have taken to get some help if they didn't! Prayers going out to her. My first episode was at 16.

Title: Re: Kidding Aside
Post by kimh on Dec 5^th, 2004, 12:08am

I was so happy just to be able to give her mom a nod of support - and maybe initiative- her mom is a strong lady and trying to help Emily so i did not wish to overwelm her. I only wanted her to know t hat what a doctor tells us is not necessarily rite....i think she knew what i was talking about, and i am pretty sure she now has resources she did not know about****

God, i look back at how it was for me and my mom. We had nothing. WE used to fite so hard. Maybe that's why i don't cave in for the beast. I was on my own and that was that.....i used to have an athletic event after school and i remember thinking "what if I get a HEADACHE?" My stomach would be in knots. and if something DID happen i had to cover it up.............I don't want any young person to go through what i did.

Title: Re: Kidding Aside
Post by kimh on Dec 5^th, 2004, 1:12am

But all nite long i would stare

and from daylite on it would tare it's way through my heart.

I don't understand why you keep thinking this headache pain hits only grown ups with witt. If you set sail you are doomed.
Nite.

Title: Re: Kidding Aside
Post by OneEyeBlind on Dec 5^th, 2004, 8:10am

Kim, glad Emily & her mom have you. Perhaps with the right meds Emily will be able to go back to school and have a somewhat normal teen life.

Title: Re: Kidding Aside
Post by Kevin_M on Dec 5^th, 2004, 8:57am

Great initiative not leaving this kid~~ding~~ aside in your thoughts Kim.

:(

Kevin M

Title: Re: Kidding Aside
Post by cschick on Dec 5^th, 2004, 11:17am

I can't even IMAGINE trying to deal with this and being a teenager. God, my heart goes out to this young woman. I am praying her mom gets on here and really searches for answers. They need to get a new neuro for sure. How terrifying for this poor young lady and her family. You know she is distraught over having to be pulled out of school because of this. Kim, did you tell her mom about o2? I wonder if they have tried this? I really want to help. All I can do at this point is pray. She is added to my prayer list.

Heartfelt thoughts and prayers going out to Emily-
Karen :'(

Title: Re: Kidding Aside
Post by john_d on Dec 5^th, 2004, 12:10pm

I certianly hope she gets to a decent doc. If he made a diagnosis based on what he read somewhere is 'usual', that is pretty lame.

Title: Re: Kidding Aside
Post by sandie99 on Dec 5^th, 2004, 12:25pm

14... :'(
I hope that Emily and her family do come here.
Anyway, lots of vibes and prayer and on their way to her right now. I wish her strength.

Title: Re: Kidding Aside
Post by LeLimey on Dec 5^th, 2004, 4:27pm

Poor kid, whatever it is - and I hope with all my heart it doesn't turn out to be CH - I hope she gets a correct diagnosis and proper treatment ASAP
Please let us know how she is getting on
Take care
Helen

Title: Re: Kidding Aside
Post by lionsound on Dec 5^th, 2004, 8:23pm

my thoughts go out to Emily and her family.

my praise goes to you Kim for picking up on it. Thank you. Lots of us started our CHs when we were that age.....with no answers for a long time to come. I wish you were around to point me in the right direction back then.

Emily, I hope you find us.

-lionsound

Title: Re: Kidding Aside
Post by Charlie on Dec 6^th, 2004, 3:42am

Rats.

That sucks. No kid needs this kind of shit to deal with. Being 14 is hard enough.

Nice going though and they're lucky to have you around.

Charlie

Title: Re: Kidding Aside
Post by Jeepgun on Dec 6^th, 2004, 9:07am

What Charlie said. Good for you for being able to help her out, Kim. Damn, I hate hearing about kids and teenagers having CH. >:(

Title: Re: Update
Post by kimh on Dec 7^th, 2004, 8:16am

Emily has not had a headache in a week. She is going through the "red tape" of being re-admitted to school - ::)that is another can of worms - seems the school has trouble identifying with the "headache thing"....however, hopefully she will be back at school SOON :)
This is not Emily's first "episode" with the headaches (a few years back she had one....). I am going to stay on a loose rope and keep the lines of communication open with the family. I told the mom that if Emily has clusters, to keep her eyes peeled and pay attention because the "episode" will return and she should be prepared to keep detailed logs.

For now, i am happy that Emily has had some pain free time and can look forward to getting back to being a kid like everyone else****This young lady is an awsome athlete - i'm looking forward to seein her kick some butt :)
Thanks all for your thoughts and well wishes. I'll keep ya posted ;)

Title: Re: Kidding Aside
Post by Jeepgun on Dec 7^th, 2004, 8:34am

Please keep us posted, and good for you for getting involved and helping out! *applauding*

Title: Re: Kidding Aside
Post by nani on Dec 7^th, 2004, 8:54am

Quote:

She is going through the "red tape" of being re-admitted to school - that is another can of worms - seems the school has trouble identifying with the "headache thing"....

I can't say I get that. In the public schools, they are obligated to take any student that resides in their district. In NM, a parent can home school a child for any reason and re-enroll the child in the school system at any time...Hmm... :-/ Like she or her Mom needed any more crap to deal with...

Title: Re: Kidding Aside
Post by kimh on Dec 7^th, 2004, 1:06pm

Apparently in NY there is some paperwork and procedure to contend with....YICK
.......but typical of NY :P Everything is a beauacracy. Apparently the readmittance process has lots to do with the recent "no child left behind act"????...........as i said b4 i mostly listened and did not want to overstep because i am not close friends with the mom and did not want to invade her privacy???........and anyway! IT"S SHIT LIKE THIS THAT MAKES STUFF HARDER for us!!!!! >:( It ends up adding insult to injury IMHO.

Question: Why would a qualified neurologist make a diagnosis (or lack of diagnosis) based upon information that is not accurate???? Do neurologists today still base criteria for clusters on outdated information that has been proven wrong over and over again???? [smiley=huh.gif]

Title: Re: Kidding Aside
Post by Langa on Dec 7^th, 2004, 2:54pm

This is bittersweet...this young girl with these dreaded things, but then you being there at the right time. I do hope the mother came here and got info to show the doctor. I myself have had clusters for 26 years, since the age of 10. I'll never forget my first attack. I didn't know what they were until I was around 16 and even then the doctors told me I had migraines.

The lack of knowledge by doctors sometimes is incomprehensible to me.

I understand your anger and frustration Kim.

Langa

Title: Re: Kidding Aside
Post by Jeepgun on Dec 7^th, 2004, 3:29pm

I was diagnosed by my GP who referred me to a neurologist who correctly diagnosed me, and then wrote me a script for Depakote and oral Imitrex for "cluster migraines," and refused to prescribe oxygen because I didn't look cyanotic to him. WTF?? I came here, printed off the medical info, highlighted all of my specific symptoms, as well as the recommended treatment options, and took the whole thing with me back to my GP. She gave me injectable Imitrex and Verapamil. (Thank god...)

Depending on doctors to diagnose you correctly and issue the correct medications in the correct dosages is, most often, like playing Russian Roulette with your health and well-being. >:(

Title: Re: Kidding Aside
Post by Sean_C on Dec 7^th, 2004, 7:19pm

I and others I/we know here feel her pain. I was 13 when I started getting "headaches" imaginary ones that would come quick and then disapear 20 minutes later very quickly. I suffered like many others with ridicuel, sarcasm, hate, and fear. We were alone and no one was listening. Hats off to you Kimh, you might of saved this girls life and don't even know it. You did a great thing by taking that step towards education of Clusterheadache for her and her family. Please follow up with her.

Cheers to you

Sean.................................

Title: Re: Kidding Aside
Post by Gator on Dec 7^th, 2004, 7:45pm

:'( [smiley=thumb.gif]