Tips from another holistic mom of a child with Job’s syndrome

With her permission, I’ve decided to start a list of tips that my new friend, a holistic mom of a 12 year old child with Job’s syndrome / Hyper IgE syndrome, has shared with me. This is so that this information is available for the  Job’s syndrome community, and also so that I can easily access all of the good information that she is sharing. This will be a living list, and supplements the information that I’ve been compiling in my “Tips for Living with Job’s Syndrome” post, where I’ve compiled ideas from several different individuals with Job’s syndrome. (You can read about Moses’ current treatment plan here).

Her son’s health team includes an integrated doctor,  integrated pediatricians and an experienced homeopath. Her son’s IgE levels are around 25,000 IU/mL. His mom has tried everything over the last 12 years to help her son. Now that her son has a diagnosis and his physicians and homeopath know what they are dealing with, it will now be easier for them to treat her son.

Homeopathy

• She feels that out of all of the things that she has done for her son (and she has tried a lot), that homeopathy has been the most effective at helping to heal her son.
• His homeopath has him on a specific homeopathic regime, depending on what he needs.
• In addition, he takes two homeopathic remedies, Stapholococcus and Croton Tiglium, (both 3x a day) which are two good remedies to prevent staph infections.
• They use a homeopathic flu remedy each year for the family.

Supplements

• Omega 3 oils are important for the skin of individuals with Job’s syndrome. They haven’t yet found one that their son is not allergic to, so he takes 6,000 mg of virgin organic coconut oil daily from “Now” (i.e., 3 coconut oil pills in the morning and 3 at night), which helps his skin a lot (coconut oil is an omega 6 oil)
• He takes Natren probiotics daily to help heal his gut.
• Her son drinks honeybush (a red tea) or red roobioos tea several times a day with local honey. A good site to order tea is Mountain Rose Herbs.
• He  takes either Thorne Brand HMC Hesperidin 2 or 3 times a day or Quercetin Bromelain (all help with allergies and immune system).
• Host Defense (4 capsules / day), a mushroom supplement
• 200 mg of Zen (GABA combined with L-Theanine) for emotional stability.
• He takes l-triptophan at night because his serotonin level is so low.  It helps with his mood and to sleep.
• He will be starting camel milk soon!

Skin care

• She was told by an integrative pediatrician that another patient with Job’s syndrome has been helped tremendously by taking daily baths in Dead Sea Salt.  The best brand is a company called Ahava (you can order online).  They mix in bleach baths once a week as well, and also add tea tree oil to the salt baths sometimes.
• She  makes calendula oil in big batches for his skin. “We order fresh organic calendula flowers online, mix with organic olive oil, put in glass jars and stir daily for six weeks. Have a dry paper towel or other breathable top during the process. After 6 weeks, pour through strainer and it’s a soft comfy oil that my 12 year old will actually put on himself after years of fighting all else. You can add lavender essential oil, tea tree or other organic essential oils to the calendula.  The calendula is anti inflammatory and helps fight infections. We still use steroid cream for spots that look like they are getting infected, before applying the oil all over. It soaks in nicely. You can order fresh calendula flowers (4 oz makes a ton of oil) from Mountain Rose Herbs online.”

Energy Healing

• He also receives energy healing, guided meditation and hypnosis.

Medication

• Her son is not on prophylactic antibiotics. (He was on prophylactic antibiotics for 6-9 months, and it wrecked havoc with his gut). He has been off of prophylactic antibiotics for 18 months now.
• Ketotifen (an antihistamine)
• Albuteral and Flovent morning and night for his asthma, which is mostly under control. They often use the nebulizer, sometimes the buffer depending on how bad it is.

Mama’s Self Care

• She does yoga and uses homeopathy to help with her own self-care (just like me!)

I know that there’s more, but it’s a good place to start!

Updates:

Feb 1, 2012 – B. is doing really great. We are on a great new remedy carcinosinum (plus several others) but the carcinosinum helped create a big shift. The ketotifen (antihistamine that also targets the histamines in B.’s gut) is also I think helping his gut to heal and allow for the other things we are doing to work better. We have the ketotifen compounded and mailed to us from a pharmacy near Seattle called Clark’s pharmacy. It’s been so helpful and no side effects other than drowsiness so we give it to B. at night. Eventually, we will taper him off of it.

I’m restarting probiotics with Natren’s Life Start B infantus. We are going to start with 1/8/teaspoon for awhile and slowly build up using the Natren Holy Trinity method. I was starting with the Natren Bifidus and building up with that, and it impacted B.’s lungs. That’s actually a good sign b/c it means the good bacteria is displacing the bad bacteria in his gut which is what you want to have happen according to Dr. Cantwell, our great integrative doctor. But we need to do it very, very slowly so it doesn’t overwhelm B. I’ve given him probiotics in the past and not had problems – so this is new but I actually think this is a good sign. The Listen To Your Gut person explains all of this. I feel so much more hopeful now.

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