Other babies with Immune deficiency??

Josslyn - posted on 08/16/2011 ( 6 moms have responded )

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Ok ladies, are there any moms out there with a baby that has a non responsive immune system??

my little girl's blood results have just come back and her immune system is incomplete and inactive.

She needs to have more tests done to find the right method of treatment and atleast have the confidence from the doctors that it can be sorted out.

Just need to know if anyone else out there is going through the same thing.

I always know God knows what he is doing, so I keep praying and know that she will be ok even though we have a tough road ahead of us....

Blessings to all

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Jennifer - posted on 05/14/2012

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Thanks for the information. My daughter is the same age and we are going through the same issues. I feel so lost. Anytime we do things with other people she gets sick... we did Race for the cure and minigolf yesterday, today and last night she fevered and got sick.

Carla - posted on 08/19/2011

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We will continue to keep you both in prayer, Josslyn, God is faithful. We stand on His Promises for our children.

God bless, hon

Josslyn - posted on 08/19/2011

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thanks everyone, she had her sheckup yesterday and we discussed the results, 3 of her 4 legs of the immune system are healthy, the one that is not responding is the BcG leg which is the one they activate at birth with the injection in her arm, meaning that all the follow up innocluations she received are inactive, there are 3 things that can cause this, an over sensitivity to antibiotics, HIV/AIDs or an underlying blood deficiency. They tested for HIV and Immuno sensitivity, which we know she is HIV- but it's protocol in South Africa to test for this and will get the results for immuno sensitivity in next week, if this is clear she will go to a specialized immunologist clinic in the city for further testing too see what the problem is. Doctor seems to think its the antibiotics as she has been on numerous courses for infection from March of this year.

Debbie - posted on 08/18/2011

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Hi Josslyn,
I have 2 sons with severe combined immuno deficiency syndrome. This is the little boy in the plastic bubble. My oldest is 22 years old and the next one is 20. Go to an immuniologist. A lot of Allergy dr's are immuniologist. Here is a website for immune system problems information. It is a really great help. It is good that you have a way of finding information out about these conditions. 22 years ago we didn't have the internet and we felt isolated. Your daughter cannot have bubble boy syndrome...because she is a girl. But she can be missing an ensyme and that is causing the problem. Treatments are available! Have your doc also look into having her get IVIG...but first have a series of blood work done. IVIG is antibodies that will replace what is missing. This needs to be done monthly. But it will keep her healthy. I am praying for you and your family. I know it is hard. Email me if you have any questions or if you need more information.
mccld032@aol.com

http://primaryimmune.org/

Jane - posted on 08/17/2011

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My daughter was born with a mysterious problem. When she was 2 1/2 years old we finally found a doc who was open minded enough to run the right tests. She does not make IgA and makes too little IgM to measure. She is now 19 and still lacks these two components of her immune system.

For a number of years when she was small she was on antibiotics just about permanently, but as she has grown other parts of her immune system seem to have stepped up. We also learned how to keep the house cleaner than most, using a lot of chlorox water to keep bathrooms, door knobs, and the kitchen clean, and we all carry hand sanitizer. It is very important for her to get enough sleep or she gets sick very quickly. Also, minor infections very quickly become major ones, so she has learned to get to the clinic quickly.

She has also had to learn how to educate doctors about her condition because it is fairly rare and thus is a "zebra on a horse ranch."

https://www.aarphealthcare.com/galecontent/immunoglobulin-deficiency-syndromes?hlpage=article&loc=table_of_contents_nav#definition discusses her condition and related ones.

Carla - posted on 08/17/2011

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Praying, sweetheart. My son had this thing where his white count would just shoot up, for no apparent reason. At 1, he was 12 pounds, and couldn't sit up. All we knew how to do was pray, and today he is a great father of 2 little girls. So pray, we will pray, and God will get the glory.

God bless, sweetheart

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