Since doctors seem to have a limited knowledge of Hyper IgE, I figured my best answers may come from others. My brother in law has been diagnosed with Hyper IgE after a long road of tests and theories. Now after several kinds of antibiotics all his lymph nodes (underarms, groin, & neck) are all still very enlarged golf ball size and he has multiple lymph nodes in his groin areas. They are testing him for lymphoma this week, and that is scarier than the road to the Hyper IgE diagnosis; as the doctors say that the Hyper IgE would not cause enlarged lymph nodes.

Has anyone experienced enlarged lymph nodes with Hyper IgE?

~D

When my son Sam, (who was diagnosed with Hyper IGE/Jobs syndrome at 14), was younger he had what we all thought was a very enlarged lymph node in his neck. The lump was evident at about age 5 and then really grew to second head proportions at about 10. I remember him being examined and tested for lymphoma at hospital and all tests proved negative. Anyway the lump finally ruptured (one day in the shower) and Sam then had the area scanned and results showed that it wasn't an enlarged lymph node after all but in fact a huge abscess. He's had other abscesses in various parts of his body over the years - typical of Job's Syndrome. So it's possible that your brother-in-law's lumps are not in fact enlarged lymph nodes but multiple abscesses. All Sam's abscesses were treated with whacking great doses of antibiotics and a couple of times with surgery, it took time but they did go away. Now he's on a continuous course of prophylactic antibiotics and so far no abscesses.

Ax



Edited 1 time(s). Last edit at 02/22/2008 11:52PM by Alice Rowell.

My daughter, who was diagnosed at 18 mos., (now 8 yrs. old) also had several enlarged lymph nodes, mostly in her head and neck area. She too has been tested for "bad malignancies", and all have been negative. I've been told that this is common in her condition. I've been told that hyper IgE is (among sorts) a mis-wire in communication between the brain and the immune system. Because of this mis-communication, the body inadvertantly reacts to things (almost anything) as if it were bad/harmful. We were all previously taught that swollen lymph nodes means that the body is fighting an infection. Which is still true, howver, in hyperIgE patients (although they still coud be fighting off an infection) sometimes it just the "mis-communication" and the body is reacting to nothing. If your cihld has severe excema however, the swollen lymph nodes could be a reaction to a recent excema flare-up. My daughter's lymph nodes always swelled the biggest when her excema was at it's worst, or when her asthma was acting up.

My daughter Caitlin has also had enlarged lymph nodes which in turn have turned out to be cold abscesses, she has probably had a couple of dozen over the years and all of them bar one have had to be surgically drained, most of them have been during the last year. She has been in hospital for the last two weeks having had two more drained and IV antibiotics again to treat the MRSA, they are trying a different one this time, as she has been allowed to have home leave I have been giving them to her myself. She has also just been to see another consultant in Bristol who thinks she may also now have infections in her bones so she has to have scans tomorrow and if this turns out to be the case she will be on long term iv's.The one good bit of luck in Caitlin's opinion is that her consultant has signed her off of school until at least September because of all she has been thru recently.

Well Caitlin needs to have something fabby to enjoy out of all this, and when she's enjoying a big long break when all her pals are stuck in school she'll feel great! Something Sam would relish at the moment - he's in the middle of his Standard Grade exams.

Ax

As an update to my previous posting, Caitlin had her scans and luckily no bone infections were found. Unfortunately she had to go to theatre again as another abscess appeared, they also changed the anti-biotics from IV Tycoplanin to IV Vancomycin plus oral Fucidic Acid. She was in hospital for 5 weeks in the end. The Drs are also trying IVIG for a few months once a month, don't know if this will work but you never know, she has also been sent home on Fucidic Acid and Doxycycline. We are still waiting for the home tuition to be set up but we won't worry if it takes some time! The one thing that has upset her is the fact that none of her school friends have been in contact, and she feels very isolated. We do not know anyone else with Job's but have been told there may be a girl in the Gloucester area so will have to speak to Bristol Consultants.
Hope Sam's exams went OK.
Sue

That's really too bad that none of Caitlin's pals have been to see her. Can she chat to them on the internet at all or text on her mobile? Summer hols are coming up so maybe her pals will have more time to come round, or Caitlin go to them? Sam thinks that his exams have gone OK - the proof will be in the results in August!

How is the IVIG going? Early days probably but is Caitlin coping with the regime OK?

Ax

The antibiotics have not worked, she has another swelling on her neck and we are going back weekly to see the consultant. She has now been put on yet another antibiotic called Linezolid, which I understand is not usually given to children but we will have to wait and see if this works, I have also noticed this morning that she has got alot of blisters on the backs of her hands its to quick to be a side efect of the medicine so can see another trip to hospital looming. We have the home tutor now who is very nice. Her friends have still not been in touch but she doesn't seem to mind too much, one little girls father has cancer so its best not to have the girls mix. We have been on a couple of trips to her new senior school which she starts in September, they are very supportive and said perhaps she could go in part time to start off with if she is still not well. The IVIG seem to be going OK she has another lot next week.
I'm sure Sam's exam results will be good, is he doing OK at the moment?

Sue