so hard....

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so hard....

Postby ga_kristy » Mon Oct 10, 2005 5:47 pm

It was one of the hardest thing I had to do in my life was to tell my 9 yr old he had MS tonight. It took me 5 days but I had to go ahead and explain to him, why he was having some of his problems and about starting treatment. He cried about the shots, and we talked about trying to make it easier. all the neat tips, Ive been learning about on here. I just didnt want to wisper around him or not be straight forward, ( I didnt go into details about all the possiablites) we can take that part one step at a time. But did remind him that he needs to let me know about feeling different, pain etc. and found out he does have a little more going on that he tells me. He very much needs an antideppressant. But I explained to him about the many feelings he may have and thats its ok and he can let me know.

whooooooooo......

Im glad that parts over, now we just need that first shot to be over....or maybe just the cure would be best...please Lord!!!!

Thanks for listening.
Kristy
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Re: so hard....

Postby CureOrBust » Tue Oct 11, 2005 12:01 am

I really feel for you. just reading your story was hard, living it... I cant imagine.

I am a big baby when it comes to shots (and blood test) also. I was on rebif for a few months. The thing that made it bearable for me was a product called "Emla". It is available over the counter in australia. It is a local anesthesia that is applied to the skin 1 hr before the shot (It took the rebif an hour out of the fridge to warm up before injection also). It took away the pin-prick of the injection. Its available as a cream in a tube or as a patch. Use the cream, its cost effective.
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Postby ga_kristy » Tue Oct 11, 2005 3:57 am

thank you, I will find some.
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Postby CureOrBust » Tue Oct 11, 2005 4:50 am

had a quick search on the web and found they clearly sell it in the US under the same name.

http://www.emla-us.com/apply/indexcream.htm

At this address they seem to recommend 2.5grams per application. I used about a total of 25g for about 50 injections (and trust me I was no hero...). I purchased the "bulk" 30g tube.

I would do one application 1 hr before, and then do a top up 30 minutes before (just in case 8O ) I would use some cling film as the occlusive dressing.

The only side affect was that my skin was whiter where the emla was applied (made it easier to aim the needle), But that went away before i woke up the next day.
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Postby manewt » Tue Oct 11, 2005 6:59 pm

Hi Kristy,
Firstly, I must admit that I have been lurking on this site for well over a year and now your story has motivated me to register so that I could respond to your post. I cannot imagine the challenge you faced in having that conversation with your son. When my daughter was 4 or 5 the pediatrician referred us to a "specialist" to have a lump looked at. Turned out to be nothing, but I have never felt so helpless as I did for that period of time between the referral & the actual appointment.

I was DX in April 2004 at the age of 38. The route to DX was atypical in my case in that it took only 3 months. I did not experience any of the emotional distress that is typically associated with such a DX. I was actually quite relieved to know what was going on with myself.

When I told my Mother of the DX she, of course, inquired about my symptoms (one of which is a slight intention tremor)-Mom's reply: "You were doing that when you lived at home" (20+ years prior). Her observation has led me to the belief that MS has been with me for most of my life, I just did not know it. Looking back, it all made sense. I have discussed this with my Neuro & he agrees that I may have a mild form of MS that took many years to get my attention.

Of course, this may have little or no relevance to your son's situation because everybody is different (bet you've read that 1,000 times). I would like to offer this advice: Be Honest with your son, Learn all that you can & share this with him. I would also suggest that you teach him to keep a journal of symptoms. I bet you have read that 1,000 times also. I have never been able to do this consistantly and I know that it would be helpful at Dr. appointments. Your son has the advantage of learning it young, His Journal, His Notes (Not Yours-you keep your own).

Why:
1. You already know he does not tell you everything-it is much easier to write it down than to tell your mom, (don't get upset mom, it's a guy thing)

2. Teaches him good habit for future Dr. visits. (You won't be joining him at Dr. office forever mom, it's a guy thing.)

3. It will empower him. (He is doing something about his situation.)

I agree with your instincts ("I don't want to whisper around him"). Be as honest as you can, be hopeful, be positive. But, be honest with him.

I'm on Avonex. It has worked well for me thus far. That decision was base on the fact that it is once a week. The needle is intimidating, but the injection is really not that bad. I have done it myself, but I usually get my wife to do it (I am intimidated & not afraid to admit it!). She has gotten quite good at it, as I barely feel it most of the time. The side effects were bothersome at first, but lessen with time. Hope this helps.

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Postby ga_kristy » Wed Oct 12, 2005 5:20 am

Thanks Newt, you really made some great points. I do right things down, and I will have him make a journal too. Thank you.
Kristy
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Parents with children that have MS

Postby BlueStar » Wed Oct 12, 2005 8:27 am

Hi Kristy,

There is an email loop that i just joined that you have to join!! Its all parents whos kids have MS from all over the world.
Call up Kimberly Koch she is the Family Programs National MS society Manager she will set you up with this .Her number is 1-866-543-7967.I have been emailing so many new people over the weekend it is great.Lots of questions answered and alot of sharing of stories. Good luck hope to see you on the loop!
Celeste
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