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Discussion Topic: New DIagnosis for my Daughter??
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02-03-2005 @ 5:29 PM
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My 11 year old daughter has recently had what I refer to as a "prediagnosis" of xlinked agammaglobinenemia. She seems to get sicker more often and longer that other kids & has for about 8 years. She suffers from a very severe cough that keeps her up at night & is very disrupting to her schoolwork, sports and many activities in her life. She is constantly tired. This year it has gotten worse and so the allergist did up her bloodwork, checking her antibodies. She is deficient in all (3),G,A, & M. My confussion as I read websites it that so much info points at this as a "male" disease and most other cases I read about the children are much sicker. I am confused to say the least & would appreciate any input! Thank you
This message was updated on 2-4-05 @ 5:51 PM
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03-02-2005 @ 2:10 PM
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TextnmmText
Hi
My daughter is being digsone with hypogamaglobianemia
when she was 17 yrs she's is now 27, she's being having IVIG for rhe last 10 yrs, she used to get very sick from it at first but now it's ok, she also has sarcodosis, her skin is still bad though, along with her sinus, she doesn't get sick as often but she coughs alot specially in the mornings, my other daughter Lisa she has ITP started when she was 3 yrs old and until the age of 14 she was on prednisone at the age of 14 they decided to remove her spleen she was really good for 3 yrs, then she got sick suddenly
from one day to the next, she was on a life support for 9 days the doctors did everything possible and they couldn't find what it was they said she must have some sort of virus and without the spleen she couldn't fight it,please if anyone has ITP don't ever remove the spleen even though i know it's so hard to be on prednisone.
God Bless You
Milli
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04-17-2006 @ 5:51 AM
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Hi It is a very frustrating disease to deal with not to mention expensive. When I was little my Mom had told me I always had a really low white cell count. It usually ran around 3,000 on a good day. When sick it would drop down even further instead of increasing. I also had at least 4 incidences of having to have ear tubes etc along with the tonsils and adenoids. As I got older the cold and sinus infections became much more numerous with sometimes ending up with bronchitis. In Nov of 2001 I had the flu shot and within 10 days pneumonia. My husband and I were wed in fall of 2002 and at that ime I again had the flu shot with the same results. Jan of 2003 brought about another case of sinus infection that within a day had me going to the Dr with high fever and a low oxygen level. I was at that time hospitalized for 11 days. After many tests, bronchoscopies, and total CT scans for lymphoma, they did one more blood test and discovered I had CVID. That was the first time I received gamma gobulin. I was missing all the factors of IGg, IGa, IGm. AI soon realized that due to poor veins, it was much easier to have a mediport implanted. Since then I have graduated to IVIG every three weeks during the winter and every 4 during spring and summer months. I still get sinus infections BUT nowhere near what they used to be. Hang in there it does get better even though you do have ups and downs.
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04-17-2006 @ 5:52 AM
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HAve her Thyroid levels checked too. I was diagnosed with Hypothyroidism at 13. All I wanted to do was sleep.
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04-18-2006 @ 3:22 PM
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Hi. I am a 28yr old female that has CVID. I have had it since I was born and was diagnosed around the age of 6-7yrs old. I have had to go in for plasma (IVIG) infusions every month which started out to be once a month at 24grams and now I have to go in every 2 weeks for 32 grams of IVIG. The say it comes from a male chromosome. I have had 20 surgeries and will have to continue. I also have the epstein barr virus, neuropathy and a little bit of the artery occlusive disease. If you would like you may e-mail me at jlynde20@yahoo.com or you may call me at 321-264-7696. My name is Jessica. The key thing for both of you is to be as positive as you can be and to know you are not alone. Do as much research as possible. I have some website info but I need to pull them out. Keep your head up 
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09-26-2006 @ 7:13 PM
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There are sites with doctors who would give a second opinion.
I have tried www.doctorsecondopinion.org.
I hope you find a solution to your daughter illness.
Cyrus
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