Raising a Sensitive Child

Nourishing Body, Mind and Spirit

Job’s Syndrome

When he was 4.5 years old, my son was diagnosed with an extremely rare immune disorder, Job’s syndrome or Hyper IgE syndrome, which explains his extreme sensitivity. Below are some of my posts that are related to this topic.

Given that it is such a rare disorder, it generally takes years before Hyper IgE syndrome is diagnosed (average age of diagnosis is 11 years old). If you suspect that you (or your child) may have Hyper IgE syndrome, I would advise that you request to be assessed by an immunologist, or at the very least, request that your (or your child’s) IgE levels to tested. In my son’s case, they knew that Moses’ IgE levels were greater than 2,000 (which is considered “hyper”), but they didn’t bother to figure out how much greater than 2,000 it was. When they finally tested his actual IgE levels (in preparation for his immunology assessment), they learned it was between 59,000 to 72,000 IU/mL (normal is around 130 IU/mL). Crazy high!  Had they conducted that test earlier, he would have been diagnosed at an earlier age.

In the big scheme of things and in our situation, I feel that our son’s diagnosis came at the perfect time because it was after we had already started Heilkunst homeopathic treatment, which I feel has been key in helping my son improve his health. If you want to know what supplements and alternative treatments we are using to treat our son, read this. Of course, I’m not a medical practitioner and I’m not qualified to offer you any medical advice. I am a mom who is sharing my experiences in the treatment of our son.

Before the diagnosis

The diagnosis

Tips for living with Job’s syndrome (a compiled list of tips from numerous individuals with Job’s syndrome)

Grieving the diagnosis

A vision of health

Letting it all go

Our current game plan

Miracle Mineral Solution (MMS)

Research on vaccinations and Job’s syndrome

Thoughts about vaccinations after our son’s diagnosis

Job’s syndrome diagnosis confirmed

November 2011: Good news — one year after my son’s diagnosis, his IgE levels have decreased to 22,311 16,612 (still very high, but dramatically lower than what it was a year ago). Read more here.

My son’s current supplements and treatment plan

See how another holistic mom is treating her son’s Job’s syndrome

All my posts on Job’s syndrome

Camp for children with moderate to severe skin issues in Canada

***

A great map where you can see if others with Hyper IgE syndrome live in your area. If you have HIES, add yourself to the map (click here).

17 thoughts on “Job’s Syndrome

  1. I also have hyper IgE syndrome n it is so bad at the moment that i am about to give up on life completely. I also recently found out i am pregnant and am terrified i will pass this on to my child. I cant find any doctor that can really help me. I am in illinois and would greatly appreciate any more advice u can give me. Thank you.

  2. Hi Kelly: So sorry to hear that it is so bad for you at the moment. I have shared exactly what we have done for our son that has helped him on this page. It hasn’t been an easy journey, but he is healing. https://crystalchild.wordpress.com/supplements/

    I highly recommended Heilkunst homeopathy. I know that many Heilkunst homeopaths treat people through phone consultations and then can send you remedies that you might need. My son’s homeopath would be happy to help you.
    Homeopathy may result in healing reactions though, which means that temporarily things get worse before they get better. But, they actually result in true healing…

    I would be happy to offer you a distance energy healing session, if you think this would be of interest to you. I can offer it to you for free, or by donation.

    Or, I would be happy to chat with you on the phone to offer you any support that you might want. My email address is spirityoga@live.com.

    Please also seek out other HIES support groups, such as:
    https://www.facebook.com/groups/107723971903/
    https://www.facebook.com/groups/112336032139527/
    http://health.groups.yahoo.com/group/Job_Syndrome/

    I really believe true healing can happen.

    Take good care,
    Janice

  3. So thankful I found your blog! My son was diagnosed with hyper ige when he was 6 months old! This is so rare and it makes me feel so much better to “connect” with someone who is in the same boat. Be strong mom! Thank you for all of your words!

  4. Hi Lindsay: Thanks so much for your comment. I’m always happy to connect with other parents of children with HIES. I’m inspired by your blog and all of the great things you are doing to stay healthy and well. Your blog mentions that your son is doing well. I’m so happy to hear that! Can I ask what has helped your son? I keep a running list of things that help children with HIES, in case it can help others.

  5. What is a normal IgE level?

  6. Normal IgE level is around is around 130 IU/mL

  7. My son is on a daily dose of cefprozil antibiotic. I also give him 1/2 pill of laratodine (Claritin). His skin has improved dramatically and he looks perfect. For baths we use a cleanser from skin-remedies.com and we also use their theracream. We also only put him in cotton clothing. I do not let him eat junk/highly processed foods. We have not noticed any food allergies, which I am thankful for!

  8. Hi Sweets n Sweat:

    Thanks so much for sharing what you are doing to help your son and I’m glad to hear that it’s really helped him. That’s wonderful that he doesn’t have any food allergies.

  9. There’s a Facebook group re: Job’s syndrome / Hyper IgE syndrome here:

    https://www.facebook.com/groups/107723971903/

  10. my daughter has severe ecxema, her IgE result has come back at 72,000, we are waiting to see a consultant now, she has had severe ecxema now for 5 yrs, this is the first time they have checked her bloods.

  11. Hi Sandy: So sorry to hear about your daughter’s severe eczema and high IgE levels…. Glad to hear that you are getting closer to a diagnosis, but I know that it’s a difficult road. There is a lot of good support on the Job’s syndrome facebook group.

    If you have any questions, or if I can help out in any way, let me know.

  12. I have Job’s as well and I’m also in the Facebook group. It is very useful and just like this blog. Thanks for the info

  13. Hi Anon: Thanks for taking the time to comment… Sorry to hear that you also have Job’s. I know that it’s a difficult road…

  14. Hi, I have a 5 years old son with severe eczema and allergies. never tested for high IGE, we see an allergist doctor who has tested him through skin for some foods. I want to give a try to heilkunst, could you please recomender your homeopath. Im in montreal. Thank you in advance

  15. Hi Anon: I think it’s a good idea to test for his IgE levels. I do highly recommend Heilkunst homeopathy, as well as our practitioner. Our practitioner is Sheila Earl and she does distance work as well.

    You can find her contact info here, in addition to a number of other highly qualified Heilkunstlers: http://www.homeopathy.com/college-practitioners/267/practitioners-of-heilkunst

    I trust that this will help your son.

  16. Our six year old daughter just had a diagnosis of AD HIES (Job’s Syndrome) due to a STAT3 mutation. We have known in our heart of hearts that something has been wrong, but it was only fairly recently that the Drs started taking our concerns seriously. Despite having a rather complex medical history, DD is doing rather well. With the benefit of hindsight, her medical history fits with this diagnosis. Significant medical events:

    1) At 6 weeks of age she was hospitalized due to a severe rash on the scalp and face – which resolved after a week or so with antibiotics and topical steroids.

    2) At four months needed abdominal surgery due to an infected abscess on the bowel mesentery – she recovered from this well with no further repeat episodes.

    3) At 11 months had a duodenal ulcer, thought to be due to ibuprofen aggravating her reflux disease.

    4) 12-18 months, had repeated ear and chest infections once she started nursery so had to take her out. We employed a nanny for the next two years and her situation improved.

    5) At 24 months she had what was seemingly a minor fall on a plastic toy and fractured her femur.

    6) At 4 years was hospitalized with cellulitis which responded well to iv followed by oral antibiotics.

    7) At 5.5 years an insect bite on her arm became infected, and a rather conservative “wait and see” treatment approach resulted in her developing an abscess in her arm and two lymph nodes in her neck. These required repeated surgical drainage.

    Since the age of 1.5, DD has suffered from repeated rashes on her face and arms, which was put down to allergies. Although she has had a few courses of antibiotics, she has been pretty medication free until last summer.

    We have had a meeting with her consultant, and has told us that one possible treatment option is a bone marrow transplant which came as quite a shock, however, I have read the medical literature on this and the suggestion is that this is only effective for AR HIES resulting from a DOCK8 mutation. We are very concerned about this and would appreciate advice from you…..was this ever an option offered to AJ? We are reluctant to go down this path as the associated risks are very high, and DD is doing remarkably well with prophylactic antibiotics.

  17. Hi Ed, Thanks for your message. AJ’s immunologists have never suggested a bone marrow transplant, and truthfully, I haven’t done much research on this topic. The typical recommendations are prophylactic antibiotics and IVIG infusions. If your daughter is doing well with prophylactic antibiotics, I would also be reluctant to go down that path.

    I’m aware of this paper, but not sure if there is more current research on this topic. https://www.ncbi.nlm.nih.gov/pubmed/10871737

    Are you a member of the Hyper IgE syndrome FB group. It’s a good place to ask questions and share experiences. https://www.ncbi.nlm.nih.gov/pubmed/10871737

    All the best.

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