little sister w/ immune deficiency - Rare Disorders Message Board

No_one_350 · 07-03-2003, 12:22 PM

Since my little sister was a baby, she has seemed to develop high fevers in the matter of minutes. When it first started, the doctors just thought she was dehydrated or allergic to milk. Now she is almost 5 years old and undergone many tests to determine what is wrong with her, as well as been put in the hospital about 15 times. She has had tests to determine what it is and they always come back as normal... from Pfapa to Luekemia... They thought she had Pfapa for about 2 years or more and now they aren't so sure. She can be playing outside and in the middle of nowhere, just lay down and almost fall asleep because her fever will be so high. Recently, the doctors removed her tonsils and they said that they were in the worst condition that they had ever seen. Recently, the doctors have started to think that she may have an immune deficiency because she can get sick very easily. Is there anyone out there with a child/ relative that can help out in this situation? Any information you can give as to what can be wrong with my little sister could help out greatfully. Thank you for your patience.

tytorian · 07-09-2003, 03:30 AM

I sympathize with you I have a duaghter who has had lots of things wrong or not as the case may be. The Immune deficiency test is quite straight forward this can be diagnosed with a simple blood test. It is rarely treatable. It is hoped that you can grow out of it when puberty kicks in. Vitamin C daily helps your doctor can advise you on how much to give depending on size and result. I have recently been lucky enough to find a very good specialist and althogh at times when my little girl has been so ill and yet no diagnosis I too felt distraught just hang in there and keep taking her to the doctor they will work it out even if does take ages. My daughter is now 10 and has been ill since she was 2 but with a lot of medication she is now well balanced.

CSECZKO · 07-12-2003, 10:04 PM

My son who is now 15 had Transiet hypogammaglobulin anemia. As a child he was in and out of the hospital for the first 6 years of his life..He had the high fevers and so forth and even seizures. Since he was 6, he has had minimal problems and is healthy. I hope that helps

your_mum_350 · 07-18-2003, 10:22 AM

thanks alot for all of the help and concern. We are going to try to have some more tests run on her to see what all is wrong. It means a great deal to us that you all were so helpful. Thank you. Bless you.