Re: Nervous about first treatment (SubQ)

[Guest guest]

In a message dated 10/5/2004 11:16:00 AM Eastern Daylight Time,

tripletsand1@... writes:

I just thought I'd share that we're heading to Cleveland this weekend to

begin IG replacement. We will be trained to do subq, which is what we

really wanted for Conner.

May I ask what doctor you see in Cleveland? I'm happy that you are getting

the subq. I have heard great things about it! I would like to try it, but

Britt is skin and bones, so I doupt that she would be a canidate. Hope it goes

well for you.

Janet, mom to Brittany, CVID, age 13

[Guest guest]

Not sure why my signature didn't pop up on that last email...

Anyway, I also wanted to let you know that I added a picture of my kids to

the Pumpkin page. It is Left to Right: Conner, Evan, Kelsey and Hayden.

Take care,

Mom to Conner (10, Asperger's, MD, partial seizures, asthma, GERD, and

immunodeficiency-CVID),

Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (10, mild hearing loss/unaided),

and Kelsey - surviving triplet (8, hearing - but not listening!)

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[Guest guest]

Best wishes to you and Connor. Between me, my husband, my daughter,

Care and her son, and you and your son, I am going to be spending a

helluva lot of time on my knees for all those special intentions in

my prayers. Guess I better buy a little pillow. And in a couple of

months I'll have to pray close to the bed post so I can get up

(pregnant women sometimes need support in order to get off their

knees due to the extra weight!)

Keep posting with your progress.

/Dayann

[Guest guest]

,

I can remember the despair I felt when I read the statistics on the

projected life span and the various complications that might occur. I also

remember how I felt when my sister, the drama queen, tragically said to me,

" I just researched Sammy's condition. He's probably going to DIE before

he's 20 years old. " To which I replied, " My son is going to live and not

die. "

It is also normal and okay to grieve about the fact you are even having to

face this difficult journey.

If you look at the past, when there WAS no treatment for these conditions,

things looked pretty grim. If my son had been born 20 - 25 years ago, he

probably would not have survived to see his 2nd birthday. But the reality

TODAY is that he is a thriving 7, almost 8 year old kid who is benefiting

from the medical research and breakthroughs that have already occurred - at

top speed, I might add (though I know to those of us walking through the

experience, it seems all too slow. " But I want a cure NOW! " )

Technology continues to advance at an amazing rate. There is a tremendous

amount of genetic research going on and many of our kids are going to reap

the benefits of that research.

I am so thankful that Connor has the opportunity to receive a treatment that

will help him. It will take a while for Connor's system to adjust and his

body to build up, but you will very likely be amazed at the difference in

him this time next year.

And who knows what further medical breakthroughs may have been made by this

time next year that will continue to improve his health? There is so much

hope for the future of our children. Sometimes it is hard to remember that

as we face the day to day struggles. But it is a very real hope, if not

expectation.

God bless and keep Connor and you in the palm of His hand.

Wenoka

Nervous about first treatment (SubQ)

>

> I just thought I'd share that we're heading to Cleveland this weekend to

> begin IG replacement. We will be trained to do subq, which is what we

> really wanted for Conner. We had been waiting on all of Conner's labs to

> come back before starting. Since May his IgG level has remained the same,

> under 300, his IgA is also very low, but his IgM actually went from 25 to

> 107 (which is normal!). His IgE also dropped significantly, it was over

> 2400 and is now normal at 104. This seems like a good sign, but we've

> done

> two pneumo vaccines and he has failed to produce antibodies both times, so

> I

> guess it really doesn't matter what his Ig levels are.

>

> I'm surprised at how nervous I feel, kind of like there's no turning back.

> Now that we're beginning treatment, I almost feel like I'm grieving all

> over

> again, just like I felt when Conner was first diagnosed. I've been on the

> verge of tears for the last two days (of course I'm also PMS'ing too!).

> Some of you may remember that Conner was also diagnosed with a

> mitochondrial

> disorder a few weeks ago. The reality of that continues to sink in. I

> learned that 80% of the kids with this disorder don't live to see their

> 21st

> birthday, however Conner seems to be a pretty mild case. They have told

> us

> that he will continue to lose muscle strength, but there is some anecdotal

> evidence that IG replacement could slow the progression. He struggles

> mostly with fatigue and endurance and we're hoping IG treatment will make

> a

> difference. The good news is that one of the supplements he was put on a

> few weeks ago seems to have stopped his seizures (he has partial

> seizures).

> The metabolic specialist started him on Carnitor and CoenzymeQ10, one of

> them must be working for him!

>

> Thanks again for all of the support and information you've sent my way

> over

> the last few months. This is quite an interesting journey we're all on,

> isn't it?

>

[Guest guest]

Thanks so much for the replies. I do try to stay positive and ignore the

worst case scenerios since I know that there isn't anyone who can tell me

what Conner's true prognosis is. If I spend all of my time worrying about

the future then I'm not enjoying the time we do have. He seems to be

growing weaker by the day, he just doesn't have the endurance to walk very

far anymore. I so hope the Ig replacement helps, if not then we will need

to seriously look into having a wheelchair available for him.

We did learn that since Conner's Ig levels are so low that they will be

doing IVIG as soon as we get there and then subq right after. I'm a little

nervous about the reaction to the bolus dose, but I do feel that it's worth

doing. We received the pumps and supplies yesterday (they gave us two pumps

in case we needed a backup) and TWO Epi-pens, I guess we're going prepared!

Conner's initial dose of Carimmune will be 6 grams/week, does this seem

typical for a 10 y.o.? We will be trained by Kim Duff, Dr. Melvin Berger's

nurse who co-authored their subq study last year. I found out about their

program from an online article (http://www.pslgroup.com/dg/243b36.htm) and

then later learned that a few members here see Dr. Berger and highly

recommended him.

Thanks again for your thoughts and prayers, I'll let you all know how it

goes when we get back. It's a seven hour drive so I'm heading to the store

for lots of snacks :-)

Mom to Conner (10, Asperger's, MD, partial seizures, asthma, GERD, and

immunodeficiency-CVID),

Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (10, mild hearing loss/unaided),

and Kelsey - surviving triplet (8, hearing - but not listening!)

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