Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
I needed a hug today (Read 10230 times)
Camerooskis_Mom
CH.com Junior
**
Offline


I love YaBB 1G - SP1!


Posts: 39
I needed a hug today
Feb 28th, 2003 at 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.
Back to top
  
 
IP Logged
 
Margi
YaBB Moderator
*****
Offline


Nuthin like a good neck
rub!


Posts: 3814
x1|Calgary|Canada|
Gender: female
Re: I needed a hug today
Reply #1 - Feb 28th, 2003 at 5:36pm
 
from supporters everywhere, Mom?

Hugs



we understand your frustration intimately, honey.
Back to top
  

And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
Margi Storey  
IP Logged
 
cathy
CH.com Alumnus
***
Offline


Not all those that wander
are lost......


Posts: 2275
x1|Cambridgeshire|United_Kingdom|europe|185|227|
Gender: female
Re: I needed a hug today
Reply #2 - Feb 28th, 2003 at 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
Back to top
  

Life will always be a bowl of cherries.....
cathy cybersis1965  
IP Logged
 
Ree
CH.com Hall of Famer
*****
Offline


Got Faith?


Posts: 5381
Natick, MA
Gender: female
Re: I needed a hug today
Reply #3 - Mar 1st, 2003 at 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
Back to top
  

Single Proud Mom to US ARMY Kiowa OH58 PILOT~CWO3 Scott,  Police OFFICER Sean, FSU Freshman~ Breezy~ Nana to Matt, Mike & Aya, MIL To Shino,
Ree dungareespocket 1017695884 64720087 Reespirit Ree16Angel  
IP Logged
 
Camerooskis_Mom
CH.com Junior
**
Offline


I love YaBB 1G - SP1!


Posts: 39
Re: I needed a hug today
Reply #4 - Mar 3rd, 2003 at 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").

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.
Back to top
  
 
IP Logged
 
Ree
CH.com Hall of Famer
*****
Offline


Got Faith?


Posts: 5381
Natick, MA
Gender: female
Re: I needed a hug today
Reply #5 - Mar 4th, 2003 at 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
Back to top
  

Single Proud Mom to US ARMY Kiowa OH58 PILOT~CWO3 Scott,  Police OFFICER Sean, FSU Freshman~ Breezy~ Nana to Matt, Mike & Aya, MIL To Shino,
Ree dungareespocket 1017695884 64720087 Reespirit Ree16Angel  
IP Logged
 
Azraels Kiss
CH.com Hall of Famer
*****
Offline


11/8/2006


Posts: 1806
Georgetown, KY
Gender: male
Re: I needed a hug today
Reply #6 - Mar 8th, 2003 at 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
Back to top
  

"Hello police?  I would like to report a robbery.  Someone stole all my beer while I was drunk."
--------------------------------
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
WWW Azraels Kiss shadowlrd 1248423801 27810130 kennkurr  
IP Logged
 
Woobie
CH.com Alumnus
***
Offline


I luv you guys!!!!!!!!


Posts: 3881
Northern Illinois, USA
Gender: female
Re: I needed a hug today
Reply #7 - Mar 8th, 2003 at 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
Back to top
  
 
IP Logged
 
Dave_Emond
Ex Member
*


I love YaBB 1G - SP1!


Gender: male
Re: I needed a hug today
Reply #8 - Nov 7th, 2003 at 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
Back to top
  
Obstacles are those frightful things we see when we take our minds off our goals.
 
IP Logged
 
Margi
YaBB Moderator
*****
Offline


Nuthin like a good neck
rub!


Posts: 3814
x1|Calgary|Canada|
Gender: female
Re: I needed a hug today
Reply #9 - Nov 7th, 2003 at 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.
Back to top
  

And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
Margi Storey  
IP Logged
 
Camerooskis_Mom
CH.com Junior
**
Offline


I love YaBB 1G - SP1!


Posts: 39
Re: I needed a hug today
Reply #10 - Nov 11th, 2003 at 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.
Back to top
  
 
IP Logged
 
thomas
Ex Member



Re: I needed a hug today
Reply #11 - Nov 12th, 2003 at 5:44pm
 
It just breaks my heart to pieces that your child has to endure this. Smiley  Consider youself hugged.
Back to top
  
 
IP Logged
 
Paigelle
Ex Member



Re: I needed a hug today
Reply #12 - Nov 17th, 2003 at 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.
Back to top
  
 
IP Logged
 
BlueMeanie
Ex Member



Re: I needed a hug today
Reply #13 - Nov 22nd, 2003 at 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.
Back to top
  
 
IP Logged
 
Relivforlife
Ex Member



Re: I needed a hug today
Reply #14 - Dec 17th, 2003 at 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!
Back to top
  
 
IP Logged
 
thomas
Ex Member



Re: I needed a hug today
Reply #15 - Dec 17th, 2003 at 3:36pm
 
STFU!!!!!!!!!
Back to top
  
 
IP Logged
 
Prense
CH.com Alumnus
***
Offline


Kerry is an idiot!


Posts: 1607
x1||USA|usa|213|222|NM,New_Mexico
Gender: male
Re: I needed a hug today
Reply #16 - Dec 17th, 2003 at 7:11pm
 
Quote:
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
Back to top
  

Where does the white go in a snowman when the snow melts?
 
IP Logged
 
jonny
Ex Member



Re: I needed a hug today
Reply #17 - Dec 17th, 2003 at 7:57pm
 
Quote:
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
Back to top
  
 
IP Logged
 
Relivforlife
Ex Member



Re: I needed a hug today
Reply #18 - Dec 17th, 2003 at 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.
Back to top
  
 
IP Logged
 
Relivforlife
Ex Member



Re: I needed a hug today
Reply #19 - Dec 17th, 2003 at 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!!
Back to top
  
 
IP Logged
 
pubgirl
Ex Member



Re: I needed a hug today
Reply #20 - Dec 18th, 2003 at 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
Back to top
« Last Edit: Dec 18th, 2003 at 6:10am by N/A »  
 
IP Logged
 
Margi
YaBB Moderator
*****
Offline


Nuthin like a good neck
rub!


Posts: 3814
x1|Calgary|Canada|
Gender: female
Re: I needed a hug today
Reply #21 - Dec 18th, 2003 at 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.
Back to top
« Last Edit: Dec 18th, 2003 at 11:53am by Margi »  

And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
Margi Storey  
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!