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Difference between allergy and hyper IgE syndrome
Posted by: Julie (---.access.comstar.ru)
Date: June 30, 2004 06:07AM

Hello,

My name is Julie, I am a mother of 1 year old boy who has hyper IgE syndrome in question. He has had a severe eczema (doctors say it is not one of the worst cases but still quite bad) and his IgE level varies in blood tests (78, 148, 31 000 (immunologist supposed it was a mistake), 1 000). He is allergic to some food, in my family there are some strong allergics (asthma and dermatitis). His skin was infected with staphylococcus but dermatologist says it happens often as he had wet eczema.
Could anyone, please, with hyper IgE syndrome tell me, what other signs should a child with such syndrome have?
He's had only one cold so far and got it from my mother who lived with us and had been sick and coughing for 2weeks near him before he got it (I got it as well). His eczema (thanks God) is improving well now without steroids and he has 6 teeth with 2 more on their way.
I wish everybody here strong health and good luck! smiling smiley
Thanks a lot.
Julie


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Re: Difference between allergy and hyper IgE syndrome
Posted by: richelle (---.dsl.ksc2mo.swbell.net)
Date: February 05, 2005 10:01PM

My son has every symptom of hyper IgE but the doctors are very hesistant to give it a formal diagnosis. His G.I. doctor and allergist are even in argument over the whole thing. My son had 6 pneumonias before he was 3, he has an IgE level of around 2,400, he has chronic and severe sinusitis year round, ecezema, he has had to have an abcess removed from his leg...you name it if it is in the list of symptoms he has had it. It is very frustrating because it is rare and doctors like to treat every different incident instead of combining all of them and saying hey it is hyper IgE. Good luck finding someone to treat you properly. We will continue the search as well. Write back if you have any luck or if you just want to discuss the issue.

Re: Difference between allergy and hyper IgE syndrome
Posted by: Edith Rodgers (---.ts524.cwt.esat.net)
Date: February 23, 2005 10:56PM

Hi Julie,
I am a mom of two girls, Amanda is 17years old, my youngest is lauren who will be 14 years old in may. Lauren has jobs syndrome/
Hyper IGE confirmed at age 2. she spent the first 2 years in and out of hospital with lung infections ect.,she attends the Dental Hospital as with jobs children don't shed
their primary teeth they have to be pulled.
Lauren also suffers with the skin (staph} infections. from two months old Doctors told
me she had allergies eggs,milk,wheat, cod, soya,&peanuts. Just this year we found out that with jobs elavated IGE levels could be false positives. We gave lauren the above except peanuts and she got on ok with them. we watch her very closely as she can pick up infections very easy and if she gets sick she can go down very fast . she is a great kid full of joy and smiles even with all she has to put up with.
hope this is of some help to you, wisihng you all the best of good health.
Edith

Re: Difference between allergy and hyper IgE syndrome
Posted by: diana (---.ipt.aol.com)
Date: February 24, 2005 04:37AM

My son is 15 and his symptoms are the same as your son. When Bobby was younger until he was about 6th grade it seemed a lot easier to handle the disease. His IGE level was 41,000 and now is 22,500. Here is the problem. The medical community does not know much about this. There for there is no specific key to any of these kids with hyper IGE> Each persons body reacts to over sensitivity. My son has severe eczma, asthma, & staff infections on his skin. He does not have odd facial features but cant seem to loose all his baby teeth. His teeth came in ok but he need 8 pulled..(like the kid does not have enough to worry about)

Because of the use of prednezone he has osteoperosis of the spine. We were fortunate to get him on the Human Growth Hormone that has done wonders for us. He is totally off the prednezone and grew 8 inches in a year. It totally helped with the asthma!!! He is also on Zolar also injectable.. It is supposed to scramble the ige levels like gamma globulin. You cant do much to help him but I will tell you to TRUST YOUR GUT!! The docs dont know much and seem more interested in useing these kids to study ..Be careful about going to places like NIH...I will help if I can..What I can do is help you get some of these drugs if you need them in the future cleared by your insurance.. Good Luck! Diana


Re: Difference between allergy and hyper IgE syndrome
Posted by: diana (---.ipt.aol.com)
Date: February 24, 2005 04:52AM

It sounds like your child could benefit from HGH..Human Growth Hormone. We are giving it to my son with hyper ige and we have noticed a HUGE difference. Also, XOLAIR is a new drug it is gamma globulin with a kick to reduce the IGE Levels. It works and with such a low ige level..DEFINITELY worth a look..Get with your allergist and if they dont have a clue contact me and Ii will give you the name of an incredible doc who has 3 kids with Hyper IGE!!

Re: Difference between allergy and hyper IgE syndrome
Posted by: wes stephens (---.sj3.marketscore.com)
Date: March 20, 2005 04:53AM

allergy are antibody/antigen reactions
hyper IgE syndrome is overstimulation of the inflamation cascade/ neural defect in the
hypothalamus endocrine symtem
look at www.theasthmaforum.com

Re: Difference between allergy and hyper IgE syndrome
Posted by: Becky (---.mntimn.tds.net)
Date: January 06, 2006 09:19PM

Diana-
How old was your son when you started giving him HGH? Or son is 2 and is very below the growth curve for both his height and his weight. He was finally diagnosed at the age of 1 with Hyper IgE. His levels were 6,000 then. They did a cap RAST with a 21 food panel at that time and when the results came back, pork was the only food tested that was less than a Class 3 allergy. His IgE has recently come down to 3,000 but now we are stumped because many of the foods we had been giving him are now in the Class 4-6 range. Has anyone tried avoidance of foods with treating IgE? What do you feel is a better determiner of a reaction-blood tests or the childs skin reaction. If anyone has any information please email, we are frustrated and desperate at this point.



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