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Discussion Topic: Looking for some support
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02-24-2006 @ 11:17 AM
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My son was diagnosed with X-linked agammaglobulinemia at 4 months of age and has been receiving IVIG ever since. He is now almost 20 months, and doing well (thank God). My husband and I are looking for some guidance from parents of children with XLA/people with XLA to see what to expect. We would love to have someone in a similar situation to talk to. Thank you:)
Kouri
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04-23-2006 @ 1:03 PM
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We have a very similiar situation. Our second son was diagnosed with XLA 1 month ago and has recieved to IVIG so far. Just before his ten month birthday, he was running a high fever which would not go down with oral antibiotics. We took him to the ER. He had sepsis and a nasty bacterial virus that would have killed him if we waited another day. We spent two weeks in the hospital (Winthrop University in Long Island), where we received excellent care. The diagnosis came within a week. We're still waiting for some genetic tests to confirm, but doctors feel that XLA will be the final diagnosis.
So far everything has been going great! Our other son actually had strep which the doctor prescribed antibiotics for both of them and both boys are health as can be. But we know its still really early and we too have alot of questions. I feel that the next 12 months will give us a great idea of what to expect.
Doctors are prescribing caution over the first 100 days. Telling us to avoid pools, oceans, and lakes. Also large crowded places, like Church and restaraunts. Are your doctors giving you similiar advice? What has suprised you on the good and bad side over the first 1 1/2 since XLA became a household word for you? Obviously it's been an adjustment for us and will continue to be. Please call and we will talk. This invitation is open to anyone. We would love to get your perspective and share ours. My name is Joe and my wife's name is Leah. We live on Long Island, NY. as far as we know Sam is the only person on Long Island with XLA. 516-561-7431. []
This message was updated on 4-24-06 @ 3:25 PM
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09-21-2007 @ 1:09 PM
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Hey guys name is Margaret and my son has SCID's with a strange twist to it makeing it even more rare. He began getting sick at 2 months at two months and we lived in the hosp. for 4 years before he was diagnosed. We were not given any hope that he would live another day so we just lived from day to day. We had a great team of Doctor's. We were so alone, we were told that at that time that there were only two other children with this disorder, one lived in the Northeast and one in another country. We soon found out that we were not as alone as we thought. We had our God. My son Joseph is now is now 21 married and has a 7mo old daughter. He is still sick but he is still with us.
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11-12-2007 @ 12:05 AM
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Hello, My name is Michele, my son Jonathan has been recently diagnosed with agammaglobulemia. He is 16 months old. He has only ever been really sick once, but that one time nearly killed him. He got a pseudomonas infection that went into his bloodstream and made him septic. His gene study from St. Judes has just told us that he has a mutation on his gene that gives him the diagnosis of agammaglobulemia. We are going to Johns Hopkins University tomorrow to find out more details on what this means for JT but are scared to death. We are looking for what to expect and also trying to figure out how we will pay for the infusions after my insurance runs out (million dollar maximum)? Any knowledge or suggestions would be greatly appreciated!
Thanks,
Michele
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11-12-2007 @ 2:26 PM
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Check out this link to a great XLA online support group.
http://health.groups.yahoo.com/group/XLA_community
It has helped us. Keep your chin up. It will be ok as long as you keep up with your son's IVIG treatments. 
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05-04-2008 @ 5:03 PM
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Hi, i'm new to this forum but my son who is 31months old was diagnosed with XLA when he was 20months old.
We were on IVIG for the first few months then in January we have gone on to Subcut using Subcuvia at home 10mls which is done over 2 hours once a week(however as of July it is going up to 20mls)
Since going on weekly subcut his health has improved and luckly not been in hospital since however he does have a constant cold.
The only bad thing is that he is getting really quite hyper and especially the night and day of treatment like he knows its coming. I spoke to his immunology nurse who said that the subcuvia is sometimes like giving them a class A drug where is sends them on some sort of high but they can give him some medicine to counter act this but at the moment i have declined due to giving him too many medicines into his system.
Hope this helps
stacey(were in England by the way)
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