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Camerooskis_Mom
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I needed a hug today
« on: Feb 28th, 2003, 4:01pm »

Since my last post, we have been to the Headache clinic twice and the PedioNuero once.  Another MRI ordered from the PedioNuero. Of course the PedioNuero isn't comfortable w/ us seeing the HA doc.
 
The headaches have been virtually nonexistant in the last month, which is very good.  I'm going w/ Cameroo on this one:  He likes the HA Doc better than the PedioNeuro, as do I.  The difference is the PedioNeuro is actually trying to fit Cameroo in a research study thru UC they are starting up later this year--which would help my pocketbook.
 
Freshair & ice still seem to be the best for the little guy, he is refusing the O2 and I haven't been able to get him to give me a reason.  The PedioNeuro has prescribed some "magic pill" but I'm having trouble training Cameroo to swollow pills (been using Orange Tic Tacs).  Whatever it is, Cameroo is all of sudden becoming very obstinate and I'm frustrated.
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Re: I needed a hug today
« Reply #1 on: Feb 28th, 2003, 5:36pm »

from supporters everywhere, Mom?
 
Hugs
 
 
we understand your frustration intimately, honey.
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Re: I needed a hug today
« Reply #2 on: Feb 28th, 2003, 5:45pm »

Cry...Im soooo sorry your little lad is having to go through this terrible thing.....I couldn't begin to imagine how I would feel if it was one of my children, my thoughts are with you and if you need to vent message or email me....sending you a hug and wishing for pfdan's for your son....take care
 
cathy
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Re: I needed a hug today
« Reply #3 on: Mar 1st, 2003, 10:48pm »

Hi... I never come in here. It seems like there is never anyone posting... I want to send you a HUGE HUG from a MOM that is just starting to go through what you are.  Not sure if my daughter has CH but her Dad does... what she gets mimiks CPH... lasts only a minute or two and sometimes can happen a bunch of times in one day.  Then it seems to go away for a few days even a week without her complaining.  But she tries not to complain.  She hates doctors and meds even more... She is 8 can't swallow pills and hates liquid medicine.  I can tell its extrememely painful and she says its a stab stab stab in her eye. The last one she had tonight lasted like 2 minutes. She is so used to it now.  I think kids just adapt to pain better than adults.   Her first PediNeuro appt was on the 3rd of Feb and I knew more than he did about Headaches.  He charged my insurance company 250$ and we left saying duh??  He wants us to again log the attacks but that is almost impossible because she is in school all day.  Her teacher thinks the Headaches are her way of manipulating her way out of class and into the nurses office...(( her teacher is a dictator)) I'm at my wits end.  The doctor did say that kids craniums grow for a long period of time and something about the skin around her head... I'm not buying that! When i mentioned CPH he looked at me like I had rocks in MY head... it was a nightmare...  But here is a great big HUG from a mom that hates to watch her kid suffer just like you.  Sometimes though I think she is much tougher than I am.  take care and kiss Cameron for me too... love to you Ree
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Re: I needed a hug today
« Reply #4 on: Mar 3rd, 2003, 3:57pm »

Hi Ree
 
Our PedioNeuro just isn't convinced small child can have CH and so made a prelim diagnosis that sounds similar to yours...I don't have the card in front of me so forgive my mangling of the spelling paratrimengial neuralagia.  He then proceeded to tell me it is a type of migraine associated with face pain.  He does however concede that this diagnosis doesn't explain the cycle, so - we are going to treat it as a migraine and CH since they aren't totally divergent and Cam isn't old enuf for the meds yet.  What I am finding out, this is becoming a popular diagnosis in our area, a prominent neurologist in our area recently published a paper on treatment with electrode implant therapy with great success.  I surely hope he doesn't have both!  Another child at his school was also recently diagnosed w/ CH after a couple of years of regular visits to their pedioneuro - so who knows, maybe the veil of disbelief is lifting.  (I am very happy to report, this child is currently in "remission"Wink.
 
I would like to get an opinion.  So far his school has taken a very hands off approach and just calls me to come get him even though I know it's not his CH (yes, he can melinger).  How much info is too much info so that I don't overwhelm them with what constitutes a call to me and what does not.  I know it is harder for them because they don't know him like I do but I have had trouble just starting a dialog with them.
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Re: I needed a hug today
« Reply #5 on: Mar 4th, 2003, 6:05pm »

might be worth your while to put an ad in the paper... or on the opinion page, if you have that.  Ask around at school and find out could be some ecological thing in your area too.  
 
Anything is possible though I hate when these Neuro's think because something hasnt happened before that it can't happen... good luck... Ree
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Re: I needed a hug today
« Reply #6 on: Mar 8th, 2003, 12:13am »

*hugz*  Your first posts to the board reminds me a good deal of what my mom describes when she explains what I went through as a kid.  She says I've been havin' my headaches since I was a baby, but all I can be sure of is that I've been dealing with CH as long as I can remember.  
 
If ya ever need anyone to talk to that may know how it is to have CH at such a young age, you're always welcome to e-mail me.  I'll also be trying to hang around the board more often, so maybe I'll be able to provide a bit of support here too.  I'm just so sorry to hear that you and your lil one have to go through this.  I wish I could convince my mom to join here and talk a bit, but she's not too into online forums yet... I'm hoping to change her on that... Smiley
 
PFDAN to ya son, and a good day to you... Drk^Angel
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Re: I needed a hug today
« Reply #7 on: Mar 8th, 2003, 8:14am »

WOW... I cant imagine a CHILD having to deal with this BEAST!!    
 
HUGS to you and your little one...I am just soooo sorry!    
 
Tina   Kiss
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Re: I needed a hug today
« Reply #8 on: Nov 7th, 2003, 4:18am »

A hug for Camie and Mom in the form of a poem:
 
As we look around us and see the cruelty of this life,
Seems to me this madness, can cause you so much strife.
The hurting child waits for the slightest bit of hope,
And surely there’s a way that you can help him cope.
What’s a mother to do? Oh, what can she do?
 
Little Camie waits in the silence of his of his room,
If we can speak for him, and somehow end his gloom.
Our paths have crossed, oh our paths have crossed.
 
The freedom he seeks will be ours to unfold,
Mercy in its tender ways is another hand to hold.
Our paths have crossed, yes our paths have crossed.
 
We reach with you together with the pain in your heart,
Show you both how much we pray for this to depart.
At times you may feel as if the pain has been embossed,
 But Mama, please just remember he’s in no way lost.
 
You watch his eyes showing his innocence so deep,
Now we offer a place in our hearts for you to weep.
He was thrown onto the back of a fearsome beast.
So together we’ll help to search for his swift release.
What’s a mother to do? Oh, what else can she do?  
 
If we can help him feel the breeze of new life on his face,
I know there’s a chance he could find a solemn place.
Our paths have crossed, then our paths have crossed.
 
He deserves a future free from the daily tortures,
Maybe it would help for all to think this child yours.
Our paths have crossed, truly our paths have crossed.
 
When everything’s dark, and nothing seems bright
There’s no need to run, we’re all here to fight.
We’ll take no mind of the cost, with no limits to exhaust.
 
For yes our paths have crossed, so he is in no sense lost.
 

 Hope this let's you know we all care for Camie and all the children that have to suffer this agony, as well as the frustration and feelings of helplessness parents may feel. You, Camie and all the children and parents in here are always in our prayers.
Dave
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Re: I needed a hug today
« Reply #9 on: Nov 7th, 2003, 9:54am »

Awesome, Dave - you truly are an angel on earth, sir.  Thanks for doing this and, also, for all you do for the children.
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Re: I needed a hug today
« Reply #10 on: Nov 11th, 2003, 4:21pm »

Dave.
 
Thank you.
From the bottom of my heart, thank you and I can't imagine any parent of child feeling alone in this anymore.  
Today, I am in tears - last nite was a bad nite and I am exhausted so I should leave it at that.
Thank you.
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thomas
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Re: I needed a hug today
« Reply #11 on: Nov 12th, 2003, 5:44pm »

It just breaks my heart to pieces that your child has to endure this. heart  Consider youself hugged.
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Paigelle
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Re: I needed a hug today
« Reply #12 on: Nov 17th, 2003, 10:22am »

I feel so much for that child.  I have had these since I was young.  Please let the child's teachers know what is going on and give them as much literature as possible about it.  I had teachers who thought I was "faking" in order to leave the room.   My thoughts are with you and you child.
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Re: I needed a hug today
« Reply #13 on: Nov 22nd, 2003, 12:12pm »

Just wanted to send little Cameroo some smiles.  Smiley Smiley Smiley Smiley Smiley. I didn't start get CH's until I was 21. Can't imigine seeing my little one getting those damn things. I will pray for Cameroo. I agree with Paigelle, give his teachers all the info you can. We all know there is no faking going on. Great poem Dave sent.  Lots of Love comming your way.
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Relivforlife
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Re: I needed a hug today
« Reply #14 on: Dec 17th, 2003, 2:31pm »

Your son is in my prayers.  First, let me say, pleeeeease take this seriously.  2ndly would like to give you a little information on a product called Reliv.  It's a nutritional product that has changed my life...actually, it has given me back my life.  I did not suffer with CH, but did suffer with Chronic Fatigue issues and fibroid tumors (to name just a couple).  I have been able to help so many children with all kinds of issues, get well.  It's been extremely rewarding...but it's not me...it's this product and company that manufacture amazing, simple products that work for everyone.  Please, if you would like to know more about this, email me and I would be happy to be in contact with you.
Bless you and your son!
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thomas
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Re: I needed a hug today
« Reply #15 on: Dec 17th, 2003, 3:36pm »

STFU!!!!!!!!!
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Re: I needed a hug today
« Reply #16 on: Dec 17th, 2003, 7:11pm »

on Dec 17th, 2003, 2:31pm, Relivforlife wrote:
Your son is in my prayers.  First, let me say, pleeeeease take this seriously.  2ndly would like to give you a little information on a product called Reliv.  It's a nutritional product that has changed my life...actually, it has given me back my life.  I did not suffer with CH, but did suffer with Chronic Fatigue issues and fibroid tumors (to name just a couple).  I have been able to help so many children with all kinds of issues, get well.  It's been extremely rewarding...but it's not me...it's this product and company that manufacture amazing, simple products that work for everyone.  Please, if you would like to know more about this, email me and I would be happy to be in contact with you.
Bless you and your son!

 
Now children are the target...  what next?!   Angry
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Re: I needed a hug today
« Reply #17 on: Dec 17th, 2003, 7:57pm »

on Dec 17th, 2003, 2:31pm, Relivforlife wrote:
amazing, simple products that work for everyone.  Please, if you would like to know more about this, email me and I would be happy to be in contact with you.
Bless you and your son!

 
because this is on a childrens board im going to invite you to post this up on the general board before I rip into you.
 
If you feel that this is that good post it on the general board and I will...........
 
Post and see.....
 
.......................................jonny
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Re: I needed a hug today
« Reply #18 on: Dec 17th, 2003, 11:03pm »

Sorry to have tryed to meet a need.  I wish someone had shared this with me sooner.  It would've saved me a lot of pain and heartache.  Sorry if I have offended anyone here.  That was definately not my intention.  Please accept my apologies and I pray for all who have endured through ALL kinds of illnesses in life.
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Re: I needed a hug today
« Reply #19 on: Dec 17th, 2003, 11:05pm »

Oh yes, and I felt that it was of the utmost importance to help children first and foremost.  Sorry you don't agree with me, but I won't change my heart for you or anyone else!!
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Re: I needed a hug today
« Reply #20 on: Dec 18th, 2003, 5:34am »

Revforlife wrote:
"Oh yes, and I felt that it was of the utmost importance to help children first and foremost.  Sorry you don't agree with me, but I won't change my heart for you or anyone else!! "
 
 
Dearest Toni
 
That last post is the biggest load of sanctimonious toilet I have ever heard.
 
If you want to help kids you are not going to achieve it by suggesting the parents of a child with an abnormal hypothalamus takes a nutritional supplement to cure it and even claiming in the guest book that it is good for cancer. You disgust me and I am glad you do not attend my church.
 
Go and help kids via a charity or your church if that is your intention.
 
 
Wendy
« Last Edit: Dec 18th, 2003, 6:10am by pubgirl » IP Logged
Margi
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Re: I needed a hug today
« Reply #21 on: Dec 18th, 2003, 11:50am »

Roll Eyes  yep, I figured this would happen.  I saw that revforlife (or whatever) post yesterday and just decided not to reply.  I was hoping everyone else would just ignore it too.  Should have gone with my first instinct and just deleted it right off the bat.
 
Jonny, thank you for your restraint and Wendy, my but you do have a wonderful way with words, lady!  "Sanctimonious toilet" indeed!  I like that.
 
Consider this thread locked, folks - let's not fight over here on the kids board.  Cam's mom started this thread a really long time ago anyways - she knows we all love her and will hug her any time she needs.
 
  Revforlife, please no more selling of your wonder product at this website.  Any further posts from you on this subject WILL be deleted immediately.  We are people in pain here - there IS no cure for clusters, we deal with our lives and manage the pain the best way we know how.  The LAST thing we need is a plastic carrot dangled at the end of a string here.  Do we understand each other?
 
Say g'night Gracie.
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