Daughter with Axonal GBS and Leukemia
AnonymousAugust 2, 2007 at 8:34 am
In a very strange turn of events that led me to “Dell’s Mom”, I finally found this site.
My daughter was diagnosed with A.L.L. leukemia at 4 in June 2006. It was a low risk type that involved chemo for 2 years…she was only a month into treatments and she developed a kidney infection, and stone.
This is where the GBS came in, for two weeks…we did know if it was the chemo or what, the doctors were in a complete state of “what is going on” and finally did a spinal tap/MRI which was part of her protocol. Protein was found and that is what clued them to this diagnosis. IVIG’s were done then and a ICU stay for 10 days of plasma exchange. Her arms were affected and below (no breathing or above)…
Fast forward to now, we had to be very careful how to treat…as the Cancer is our main priority (not that we want the GBS to be “back burner” but you have to understand) and she is still moving sooooooooooooooooooo slowly back. We do intense therapy and she has always had the feelings everywhere. Her arm strength is back, trunk and hips, too. Some hamstrings are where we are seeing progress. She can now crawl, but still not standing or walking. We just had her have another EMG/CN tests and they were better than the one from September 2006.
The one thing that is hard is she is so tight/contracted, we have her in a stander now alot of the day.
She is AMAZING and we treat this as “it may not come back”, but “lets pray it does” and have her in all activities and school.
Her story continues and I am thrilled to have a GBS site to read and get feedback on. Thanks Lori
Natalie and Abby
August 2, 2007 at 1:36 pm
What an incredibly strong woman you are. Abby too must be an incredibly strong willed child. My son was 9 when he got gbs (9/06), so I understand how hard it is to watch your child suffer. We will pray for you that you and your family stay strong.
Best of wishes,
Dawn Kevies mom:o
AnonymousAugust 3, 2007 at 3:59 am
Hi Natalie & welcome. I’m glad that you found Lori (Dell’s mom) and were lead to us.
My daughter Emily was dx’d with GBS in Dec 05 at 4 years old. Her dx was changed to CIDP a few months later. She’s now almost 6 and improving daily.
I can’t imagine being told that your child has leukemia & GBS on top of it. A friend on mine has a 5 year old son with A.L.L and I remember he did have some GBS/CIDP symptoms once from his chemo. It turned out that it was just a bad side effect.
Everyone here will tell you that GBS stands for Get Better Slowly. But I want you to remember that children have an amazing ability to heal faster & better than adults do. Your daughter has been through SO much in her short life & I’m sure that her body needs a rest. I am willing to bet that once it does get some rest that it she will amaze you with progress. You’ll see little bits of progress here & there and one day it’ll all just come at once.
I’m not sure how many people check this particular forum so you might want to check out the main forum page. That’s where most people hang out, I think.
AnonymousAugust 4, 2007 at 10:00 pm
Hello again. I’m so glad you posted. I hope you can find the information you need. I don’t know too much about GBS since Dell has CIDP. I hardly ever go to the GBS sites.
Please tell Abby hello. Please email CIDPKID (cindy). She wants to talk with you.
Hope your w/e is great.
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