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

An update to the above posting. The Linezolid seems to have worked, the swelling has at last gone down. She has had her second lot of IVIG which went well, perhaps the two treatments together has done the trick. The blisters got quite alot worse but Sam our nurse who does the IG's said it was a side effect of them and not to worry.The home tuition is going well, but we only have about another 5 hours worth to have. She is to have one more lot of IVIG before we see the Prof. it will then be decided if they are to carry on. She is looking the best she has done in a long time, lets hope it carries on!

Sue

Its interesting how the course of treatment has been different for some, but being Hyper IgE is so rare.... When my now 10 year old daughter Courtney was 2 and hadn't been diagnosed yet specialists started giving her IVIG due to the many viral pneumonias she got and it worked. She hasn't had a bout of pneumonia since (although her port recently quit in May 2008 and so they decided to try her off the IVIG for the winter, so wish us luck!). She has always has enlarged lymph nodes..remembering a swollen node is a sign of infection...so if there is an infection then you will more than likely find a swollen node someplace..these can turn into abscesses.. Court had to have one underneather her arm drained in 2007 along with 4 other abscesses in her groin area and then last month she had to have 2 more in the groin drained and she still has a swollen node on the side of her neck but it has been slowly going down since her surgery and the new medication she is on. She normally uses ceftin daily but for the next 2 weeks she will be on keflex. She also uses bactroban cream, hydrocortizone cream 1% (low dose multiple times per day) and then just a moisturizing cream. I also make my own dakins solution for her bath (it makes it so the bleach isn't so strong). She hates the bath, prefers the shower, but will take the bath at least once a week. I've been lucky in that Courtney's infections have been staph but not resistant (MRSA). Her pediatrician just last week told me he read a journal on recent Hyper IgE studies and how they believe the rash is not ezcema but simply a staph forming rash that spreads. I need to find that article!

Hi All

Caitlin not been too good again recently, but luckily not had to go into hospital. She has had a few more swellings on her neck but they seem to be going down. The Prof. in Bristol has said she needs to have the IVIG's every three weeks,so hopefully things will improve. The consultants have also decided to see if funding is available for her to have them Sub-Cut, it will save her having to spend all day in hospital. She has also had another three weeks worth of antibiotics for bilateral ear infections, we are still waiting an appointment with the ENT bods. Caitlin has never had enlarged nodes in the groin hers has always been on her neck or under her arm, she has quite a few little scars where they have been drained.
I hope the bactroban is working for Courtney it doesn't seem to work for us anymore, if things get really bad I use Fucibet, but only for short periods as its a steroid.
We also use Dermol 500 when she showers along with either Hibiscrub or Skinsan she often makes up a mixture with the Dermol and one of the others, it doesn't dry her skin out so much then.
She has settled into her senior school well, they are being very supportive, I am also enjoying the time on my own!

Alice - I hope Sam's exam results were OK and he is keeping well.

Sue

Hello there

Sam did very well in all his exams thanks, with top marks!!! So pleased with him, especially as he has had to miss so much school over the last couple of years.

He has now crossed over from Paediatrics into Adult care and he went to see his new chest consultant last week. Everything seems to be fine with them, had long discussions about appropriate care for Sam and we (ie his parents, Sam his usual laid-back self) feel quite relaxed with the new regimes. For instance Sam won't go into hospital for 3 monthly IV antibiotic top-ups anymore, but if he needs them then a CF nurse will come to our house and deal with things from here. Much better than having to go into a adult, germy chest ward. Also, Prof Cant has said he wants to continue to monitor Sam for a few more years too, which we're glad will happen.

Sam's skin has started to be a bit bothersome again recently. He does use the Dermol 500 but complains that he doesn't get a nice foamy lather to wash with. So recently I bought some Sanex for him to use too, anybody got an opinion on this? Is the Hibiscrub that stuff that you use at hospital? And Skinsan, don't know this one. Do you buy it at the chemist or get it on presciption? I agree with you Lefty about the skin rashes not being a true excema but rather a skin infection running riot.

Hope Caitlin is feeling a lot better now?

Ax

Hi All

Am so glad Sam done well in his exams. Caitlin is feeling alot better thank you, other than suffering from a cold at the moment, she is really enjoying school and manageing to stay full time, her teachers also say she is not as far behind as her Junior School made out.

Hibiscrub is the pink stuff they use in hospitals sometimes it can dry your skin a bit which is why Caitlin mixes it with the Dermol, you can get it in sachets called Chlorhexidine but we found the sachets kept breaking and they could only be used in the bath. Skinsan is a replacement for Aquasept you can get it on prescription and we found the Sainsbury's pharmacy is the only place who can obtain it locally to us.
Caitlin also uses Hibitane Obstetric Cream (Chlorhexadine in a cream form) on her head which gets very sore and weepy, it is very good our dermatologist says it can be used anywhere.

Hibiscrub and Skinsan give quite a nice lather, Skinsan more so, which would please Sam. Caitlin has not used Sanex skin washes but has tried the anti-persp which made her very sore and spotty so gave up on that one.

We have just had the ENT appointment arrive, not until middle of November and I had to chase for that, the Sub-Cut has not been sorted as none of the letters to request the funding have been done!

Will keep you posted.

Sue