Reply Hey Mom! Learn more about the Gerber Life Insurance Grow-Up Plan!
 
Thread Tools Display Modes
Old 06-19-2006, 03:49 PM   #1
geckoed's Avatar
geckoed
Registered Users
seller
 
Join Date: Apr 2006
Location: Michigan
Posts: 1,301
My Mood:
Unhappy the rest of the specialists weigh in...

This morning I spent FOUR HOURS with the immunologist. The good news:

He’s not allergic to dairy like we thought
He’s not allergic to any of the foods they tested for (and they only tested for foods)
He won’t be going on steroids for asthma any time soon
I have Drs ORDERS not to wean
Ditto not to vax
Ditto not to vax anyone else who lives with him
He didn’t get blood drawn today
He has 3 siblings

The bad news
He has a primary immune deficiency
Its not one of the easy to dx, well known ones
Its severe
He doesn’t have HIV
Did you notice that “he doesn’t have HIV is under BAD news????
Lets all try to process that
She said “its too bad its not just HIV, we treat that REALLY well now”



She wants to xray, CT scan, and MRI ALL of him, every inch to try to find the source of his issues. She wants a full GI workup with the wire-down-the-nose to test for reflux and the butt scope and everything. She wants a DNA test for CF. She wants a bone marrow biopsy. She wants 48 hours of EEG monitoring. She wants a geneticist to see him. She wants us to go to Mayo, Cleveland Clinic, or both. She HOPES the bone marrow biopsy will show that as the root. She HOPES he needs a bone marrow transplant.


I do not know how to live a life in which I WISH my toddler had AIDS or needed a bone marrow transplant.


Oh. The rest of todays appts: The ortho said not to worry about the limb length discrepancy (unless it gets worse) for a year and then we’ll follow up.
And my 6yr old hurt her knee on a trampoline today and had to go get crutches right after my 3yr olds dentist appt.

Advertisement

__________________
Kim, mom of 5

Last edited by geckoed; 06-20-2006 at 09:03 PM.
geckoed is offline   Reply With Quote
Old 06-19-2006, 07:45 PM   #2
5tinytreasures's Avatar
5tinytreasures
Registered Users
seller
 
Join Date: Apr 2006
Posts: 144
Re: the rest of the specialists weigh in...


I'm so glad you have a answers (somewhat)
Jason has PID also but they only talked about a transplant when he was little like yours.
We wished he had HIV also and I hate telling people no he doesn't have Aids he has PID. They just don't get it. We do IVIG treatment every 21 day's they have helped so much. I was so scared in the beginning but now it's old hat. Friday is IV day which he loves because it's the ONLY time he gets to play video games I sometime feel guilty about letting him play them but I figure other kids play them for hours every day and he only plays them every 3 weeks.
email if you need to talk
__________________
Kathleen
J(10) A (8) I (7) C (6) H (3) R (3)E (22m) C (22m) L (22m)


OPC3
5tinytreasures is offline   Reply With Quote
Old 06-19-2006, 08:00 PM   #3
MamaLove's Avatar
MamaLove
Registered Users
seller
 
Join Date: Apr 2006
Location: In LOVE there is no fear
Posts: 2,866
My Mood:
Re: the rest of the specialists weigh in...

You and your family are in my prayers.
__________________
Christina ~ Grateful Wife and Play-At-Home-Mama To 2 Boys
www.aloha-creations.com
MamaLove is offline   Reply With Quote
Old 06-19-2006, 08:08 PM   #4
SandyG's Avatar
SandyG
Moderator at heart, but no longer moderator
The best way I know of to win an argument is to start by being in the right
seller
 
Join Date: Apr 2006
Location: Yuma AZ
Posts: 13,777
Re: the rest of the specialists weigh in...

oh my goodness how very sad
to you
goodluck with all the testing
__________________
SAHM to David (5) ; wife to my sweetie. Praise the Lord
sorry Im not around as I use to be
Old DS Feedback DP Feedback www.americansolutions.com--take action NOW!!
SandyG is offline   Reply With Quote
Old 06-19-2006, 08:23 PM   #5
Willys Woolies's Avatar
Willys Woolies
Registered Users
 
Join Date: Apr 2006
Posts: 729
Re: the rest of the specialists weigh in...



I don't know what else to say...so big hugs is all I can offer.
__________________
Linda ~ Mama to 7 & wife to Bill ~ Co-owner of The Cloth Diaper Connection
Old DS Feedback: http://www.kikifoxito.com/ds/forum/i...?topic=11375.0
I'm going to ride my bike 150 miles in just two days! To read the story: http://main.nationalmssociety.org/si...1&s_tafId=8376
Willys Woolies is offline   Reply With Quote
Old 06-19-2006, 08:43 PM   #6
AttachedMama's Avatar
AttachedMama
Registered Users
seller
 
Join Date: May 2006
Posts: 354
Re: the rest of the specialists weigh in...

I'm so sorry mama!
AttachedMama is offline   Reply With Quote
Old 06-19-2006, 11:19 PM   #7
mom_of_3g_1b's Avatar
mom_of_3g_1b
Registered Users
seller
 
Join Date: Apr 2006
Posts: 1,381
Re: the rest of the specialists weigh in...

I'm sorry that you have to deal with all this!
__________________
Melinda ~Mama Extraordinaire to~
Kye (5), Abigail, Kyrra and Gwendylan (2) and Ainsley (19/12/2007)
mom_of_3g_1b is offline   Reply With Quote
Old 06-20-2006, 09:02 PM   #8
geckoed's Avatar
geckoed
Registered Users
seller
 
Join Date: Apr 2006
Location: Michigan
Posts: 1,301
My Mood:
Unhappy Re: the rest of the specialists weigh in...

thanks. Its a hard pill to swallow and my family doesn't make it easier. I'm still just so stunned
__________________
Kim, mom of 5
geckoed is offline   Reply With Quote
Old 06-20-2006, 10:13 PM   #9
MamaJo's Avatar
MamaJo
Go sell crazy some place else, we're all stocked up here.
sitesupporter
seller
 
Join Date: Apr 2006
Posts: 9,380
My Mood:
Re: the rest of the specialists weigh in...

I'll keep your little guy in my prayers.
__________________


Taking a break to focus on God & family

MamaJo is offline   Reply With Quote
Old 06-20-2006, 10:20 PM   #10
Shaineinok's Avatar
Shaineinok
Registered Users
seller
 
Join Date: Apr 2006
Location: Oklahoma
Posts: 4,961
Re: the rest of the specialists weigh in...

Oh my so sorry mama. Will keep you and your little one in our thoughts and prayers. ((Hugs))
__________________
~~Shaine mommy to three great girls!~~
My blog
YYMN spots available!
Shaineinok is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

Copyright © 2005 - 2014 Escalate Media. All Rights Reserved.