Guest guest Posted September 3, 2010 Report Share Posted September 3, 2010 That is interesting - we always find is unwell - overtired, not eating, crying for nothing, more mouth ulcers, more headaches - the week before IVIG. He takes Gammunex - does that have a longer shelf life ? I will bring that up when we are in clinic for IVIG next week. As for SCIG - it is not widely offered here in Canada. Neither is IVIG at home. We travel just over an hour each way to the Hospital for Sick Children in Toronto for treatment every 4 weeks - and the treatments takes about 5 hours. Which means a day off work and a day off school... and we have to schedule everything around treatments... You raise an interesting point. Kim, mom to , 8, with Hyper IgE (Job Syndrome) From: mother5590@... Date: Fri, 3 Sep 2010 08:26:03 -0700 Subject: Re: Re: Intro Lots of info here. I have one question? Why are they only treating with IVIG every 4 weeks. The half life ( time it survives and works in the system) of Gammaglobulin is 21 days which means that last week he is unprotected. Also for many sub q weekly works much better by keeping the levels more stable. Just some thoughts from what you wrote. BARBIE ________________________________ From: " cerdaclan@... " <tcerda@...> Sent: Fri, September 3, 2010 5:31:32 AM Subject: Re: Intro Good Morning Kim, I am mom to a 10 yo dx'd w/ combined immune deficiency when she was 4. We recently moved and re-establishing care has been nothing short of a nightmare that is ongoing. One thing that continues to show up on her labs is an IgE that is 4-5 times the high end of normal. In terms of allergies? She was tested with 68 allergens and came back postive to all but 2. She also has hyperdermagraph-what-ya- ma-call-it, where we can write all over her with the light touch of our nails. This is MUCH worse when she is not well (which is most of the time). She is currently off all meds, including her Immunoglobin and is taking nothing. I understand that severe allergies can be a secondary autoimmune complication of PIDD. We have been told they cannot really treat her allergies because there are too many. My understanding of Job's is that it is extremely elevated IgE...into the tens thousands levels. Molly's levels are 980 on the last test. There is no question that her Allergies/IgE issues are contributing to her constant respiratory issues, including pan sinusitis and recurrent pneumonias. She is also now colonized with pseudomonas. I wanted to ask your take on the IgE issues. Terri Mom, Molly (10) and Maggie (8) CID > > > Actually , sounds like you are on the right track. My son , who >is now 8, was also sick since birth with multiple pneumonias, lung abcesses, >RSV, etc. For the first 2 years of his life we were in the hospital with >infections for over 3 months in total... it is hard. But some of the testing >they need to do to determine if your one year old has an immune deficiency have >to wait until he is 2 so that your maternal antibodies in his system have >completely worn off. > > > > > When he is 2 they will probably test him with pneumovax or prevnar to determine >his body's reaction and how it maintains immunity. This is a big tell in the >immune deficiency scale. And only through a history of immunizations and titer >checking will they see the pattern of how his B and T cells are respoinding. >Initially they thought only had a B cell issue, and 2 years later found >that it was a combined B and T cell problem. > > > > > And even though we have a diagnosis now, and have had for about 2 years, the >way is treated hasn't really changed. We still have to deal with each >infection as it comes and try to keep him healthy. is now on IVIG every >4 weeks and has been for 2 years now. But each kid is different, even when they >have the same diagnosis. > > > > What are you in for ? - years of worrying, illnesses that come on very quickly >and ruin family plans, friends and family that think you are neurotic and >worrying too much, and growing an indepth knowledge of viruses and antibiotics. >But it gets better. This is a great group and a great resource. Hang in there >and trust your instincts with your son. > > > > Kim, mom to , 8, with Hyper IgE (Job Syndrome) > > > > > From: amandaconstantin@... > Date: Wed, 1 Sep 2010 20:20:39 -0500 > Subject: Intro > > > > > > > Hi everyone! My name is and I have three kids. I have a six year old >son, a four year old daughter and a one year old son. My one year old has been >sick since he was three months old. He had RSV and the swine flu at 3 months. >Right after he recovered from that he got pneumonia. We are lucky if he goes >more than a week without being sick with something. He is on Prevacid, >Singulair, Flovent, Nasonex daily and Albuterol as needed. We have been seeing >the immunologist since he was 6 months old. His IgG levels are low but are >considered in the normal range. They have been checking his levels every three >months and they are slowly going up. My son got his one year immunizations and >one month later had his vaccine titers checked and they have all gone down from >5 months ago. They checked his T and B cell levels this time and his T cells CD3 >and helper CD4 are low. I don't go back to the immunologist to go over the >results for 3 more weeks. I was wondering if anyone had any ideas of what any of >this means? Also has anyone else gone through this when there child was one? I >am just really looking for any sort of input on what I am in store for. > > Thanks, > > > Quote Link to comment Share on other sites More sharing options...
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