Best place for severe eczema and food allergies

[buckypeanut]

Hi, Im on my second ped immunoloy specialist and he is at the end of his rope now with ideas to help my 4 yo son.  Where would  the best place be to take my son with severe eczema and food allergies?  He is on prednisone and atarax now with minimal improvement.  I live in Southern Cal, but willing to go wherever I can get the best help.  He has a rash all over his body and bleeding wounds all over both hands and feet for three months straight now.  This is the second bout of prednisone in a month.  Already failed antibiotics and antifungals.  Please help.

[buckypeanut]

I should say a bit more about my son's hx.  He has had this condition since he was 4wks old.  RAST test showed he is allergic to 90% of all common food and environmental allergens.  His diet is extremely restricted already.  Does not seem to have asthma yet.  Last 3 months he's been suffering with worst reaction ever.  Sheets and pajamas bloody every night.  He's covered with scabs and rash.  Only thing we can think of left to address is grass and pollen in backyard where he plays.  He doesnt play on grass but in the midst of it and we have city controlled "green area" flood retention zone with overhanging weeds about 12 ft high next to our house.  Im pursuing city to cut it back for fire hazard.  I will do experimental "house arrest" for one week to see if he improves any.  Other than that, Im plumb out of ideas.

[ChitChatNine]

Latex?  Has he been tested for latex?  Just a thought.

I am going to see if I can send out a few e-mails for resources for you in California.  I know a fabulous allergist in NYCity out of Mt.Sinai .. Dr. Hugh Sampson but it is clear on the other side of the country.

My heart goes out to you.

What does he eat for nutrition and what are the results of his RAST + tests?

Could it be something he is eating on a daily basis continuing this cycle?  Or the meds he takes for it actually causing an allergic reaction?

Johns Hopkins is another place  .. PREMIER Immunology dept.

Let me send out some e-mails to some friends who have children with severe allergies ... YOU ARE NOT ALONE and keep pushing for an answer for your son.

Hugs,

Cheryl (dd Latex, Plum, Nut - Anaphylaxis & dd bee allergic)

[ChitChatNine]

One other ? about the tall grass .. does the city treat it with pesticides at all?

[buckypeanut]

Hi, and thanx for your interest in my case and the sympathetic remarks.  I recently found a specialist in Los Angeles who was listed in America's Top Doctors book named Joseph Church and will pursue an appt with him.  As for the other possibilities you have mentioned, no, he has not been tested for latex, and yes, he could be allergic to any of the millions of things he comes in contact with or eats on a daily basis but cannot test for everything.  Even if he becomes the boy in the bubble, chances are he could be allergic to the bubble!  He is allergic to 90% of the things on RAST for common allergens.    In fact, he was allergic to everything, but 90% were very high.  We feed him things on the list that he is the LEAST allergic to so he can get some protein and nutrition but we have been doing that for four yrs and surviving.  The problem is this last three months where nothing in his diet has changed but he is in some sort of allergic storm and we cant figure out what has changed.  Three months ago was the onset of spring so we are mostly blaming that, but it could be anything, really.  We just need to know what to do now to stop this vicious storm so he can heal and we can get some sleep without pumping him full of drugs and toxins!

[ChitChatNine]

The reason latex popped into my mind is because latex is a progressive allergin.  The more contact one has with it, the worse the reaction.  And severe excema is one of the reactions ... however, my daughter is anaphylactic and does not get the topical reactions that many in the healthcare industry get so severely.

Latex allergy is commonly foun din children who have been in and out of healthcare settings a good deal of their life.

Also, some foods cross react with latex, but if he's been eating foods that are not high on the allergin list then probably not from ingestion.    However, Avocado is a highly charged latex cross reactor.

I'd definitely add it to the next round of tests when you meet with the new Dr. and I am so happy it sounds like you've found somebody willing to take on your case.

As I am aware there are false negatives with RAST tests but no false positives.  

My daughter (17yrs old) has latex Class II Rast + ... went from I to II and she reacts.  She is Class IV to hazelnuts which are huge cross reactors and Class II to plums which cross react and she reacts to those, too.  

The only other thought which crosses my mind is the laundry detergent used on his bedding ... fragrance free?  What about additives to bath ?  Probably none I assume ?  Could he be allergic to CHLORINE or Flouride?  If Flouride added to the water from your city ?   Some people are allergic when swimming in chlroinated water in a pool ?  

I am trying to think of allergins least thought of that would pose physical contact and react in such a violent way.

Formeldahyde is another .. a chemical used in fabric .. causese severe sunburn rash in my daughter!   Used in mobile type homes and some furniture.

Of course mold is an allergin but usually asthma.

Please keep me posted; I also can be found on the Pediatric GERD (reflux) community as my son had serious reflux for years with food alllergies, too.

Cheryl

[lhughes]

I'm not sure what all topicals you have tried or use... but here's our list that we use for our daughter....

Hylira (works wonders for putting some fluid into the skin from the outside)
Atopiclair (face only)
Protopica for hot spots
Betamethasone Dipropionate for hot spots
Triamcinolone Acetonide Ointment mixed with Eucerine cream as a lotion

Antifungal with eczema we used Clotrimazole and Betamethasone Dipropionate

We also are in the midst of a major outbreak.  She is also on Singular for asthma and Atarax for the itching.  Fortunately our dd isn't severely allergic to food, it's mostly contact allergies and outside.  Heat is also a factor for her.  

One more thing that we give her in her milk in the evenings is a vitamin powder called Ambrotose that our boss's daughter gives their son.  It seems to help keep things from getting too bad for our dd.  Although these past few weeks have been pretty bad.

So sorry to know your child is going through so much.  Good luck to you getting the appointment with the doc you mentioned.  I hope you can find relief for your child.  I know these allergies and the itching and eczema are so uncomfortable for them.

[ChitChatNine]

What is Ambrotose .. I have 4 children and many vitamins cause a reflux stir .. so I'm always on the lookout for new ideas.

My oldest two react to alot of known allergins.  One gets bouts of a reactive arthritis from allergins, too but has pretty much outgrown it .. so anything natural in the way of vitamins I'm always open to learn about.  I have to be very careful with otc things which boost the immune system as many contain roots of plants which are derivatives of things my girls are severely allergic to in the ragweed dept.  My allergist alerted me to this.   Always tough .. you think you are doing something good only to find out it may cause asthma attack.

both my older girls were on Singulair daily for 4 yrs .. it really was a wonderful drug!!!

C~

[lhughes]

It's sold by Mannatech (which unfortunately is one of those "home-seller" companies).  I purchased Ambrotose from them because of what my boss said helped his grandson who also had allergies, ear infections, and strep continually.  I wasn't sure if it would work...and I *think* it does.  We also give our daughters a basic multi-vitamin (the princess ones).  Ambrotose is a powder of nutrients, some of which I had seen sighted in other studies (like the fuccodin and aloe vera).  You can google Mannatech and Ambrotose and find their website, if you wish.  I couldn't find a list of ingredients on their site, just the usual "our product is the best" advertisement.  If I can remember this weekend, I'll type up what's on the jar and post it here.

It's pricey, I will warn ya, but you only use a little bitty bit once a day.  We got it as a trial for our daughter during her worst ever eczema breakout.  Along with the other stuff, her breakouts are less severe and she's not as "crusty", if ya understand what I mean by that.  We have seen an improvement with her breakouts when we use it consistently and less of an improvement when we forget (as we did over vacation and she broke out again).  I'm not sure it'll work for everyone, so I don't usually promote stuff.  However, this has helped with our daughter to a degree.  

If I had to vote on the things I think we've seen have helped in our particular situation, I would vote the Hylira as #1, Ambrotose as #2 and the Atopiclair #3 (that really helped her face) and the Fungal stuff #4 (we had a SERIOUS problem with fungus around our vacation time).

Cold and flu season ended about the time we started this "trial" of Ambrotose.  We usually get the girls a flu shot and intend to keep trying Ambrotose into flu season this fall and see if we get to visit our doc less than last year.  That'll be the TRUE review of this product for us.  Right now our typical flu season consists of 3 strep throats and 2 ear infections plus at least one good cold.  That's just our dd#1.  Our eczema baby goes the other way with more ear infections, less strep, and lots of colds.

I understand about the asthma thing.... you think you've got something good going and wham...back to the inhaler thingie (which she hates).  We are watching dd #1, she's had a cough for 3 weeks and doc is hoping it isn't a sneaky form of asthma.  At this point she says "no", but we have to return in 3 weeks if the cough is still with us.  Lucky us.

Good luck, let me know if you decide to try this stuff and what you think.

[buckypeanut]

Hi guys.  It sounds like Im not alone with this parenting a tough eczema child thing...

UPDATE:  He is still scratching and bleeding, but he is doing MUCH better (50%) just on Zithromax so we believe most of the severity was a secondary infection even though we were using tea tree oil, neo and polysporin, and bleach baths (1/4 cup in whole tub for antifungal antibacterial effect).  We are weaning him off prednisone and added Zantac which our doc says is a histamine blocker that blocks what Atarax doesnt.  We just started so we have not noticed a benefit yet with it.  We are waiting to get appt with LA specialist.

I also just started him on BIAMONTE's eczmea program.  Dr. B is a naturpath who specializes in candida and eczema.  He has helped me with my candida over the past 2 yrs and claims he can probably help my son because MOST of eczema suffers have genetic errors that make us susceptible to candida infection or parasite problem.  Especially if your child has had ANY type of fungal or yeast infetion, there's a good chance the child has intestinal candidasis or parasites.  The problem is trying to comply my 4yo to his program of swallowing tons of capsules every day.  I would recommend any parent of eczema child to look up Biamonte's website at "health-truth.com".  I will warn you that it is not cheap either, but whats cheap about several doc visits and meds as we are doing now??  If not biamonte's program, look into other programs with that concept.  Its a very expensive, very hard to comply program with astringent diet restrictions and talking up to 80 capsules a day for me, but regular docs only wanted to put me on liver toxic drugs and prednisone all the time and never took care of problem like this program did.

Thanks for the info on Hylira and Atopiclair (wonder if they sell in states?) and my mom takes Ambrotose, so I know about it already.  I wish you all the best with your children and pray God with give you as parents some rest and peace with all your hard work taking care of high maintenence kids!

[lhughes]

Good info, too!!  I didn't know about the bath with the bleach.  I do use Tea Tree oil and have added it to the laundry on occassions (love the smell, weird I know).  And the Zantac...I'm going to add that the list of questions for our next visit to the doc.  

Hylira and Atopiclair are prescriptions that are available in the states.  Hylira just recently had a generic made (hyaluronic acid....can't spell sometimes so that may not be quite right but phonetically seems right...huge bottle for around 10 bucks depending on your insurance).  Atopiclair is not available in a generic, but you use so little of it that it'll last a good long while.  It's a non-steroial facial thing for eczema.  Lauren has a time with eczema on her eyelids and cheeks.  Our allergy doc prescribed those and they seem to be the best of the lot we've tried.  

Luckily we've only had to go one round of prednisolone on our dd with the eczema.  She didn't tolerate that well at all.  And she does have a serious candida problem.  I will look up the website you stated.  Thankfully she will eat yogurt and that does seem to help (especially when she has to have an antibiotic).

How does your mom like Ambrotose?

Yep, high maintenance kids all around, but love 'em ne'er the less.  Maybe more because they are high maintenance.  :)

[ChitChatNine]

Wow what great info all around ....... C~

[Lonelymom]

sorry to hear about the major break out with your son. My daughter is exactly like your son and takes Singular and Ballergy. Also taking two allergy shots a week to try and avoid bronchitis due to her severe allergies.

Defiantley write down everything he touches and eats for a while and see if something is new. Maybe you are forgetting the common factor. Also Latex can be a severe reaction like this one. My daughter is highly allergic to latex as well and we found out by putting a latex bandaid on her. Caused a major blister and redness all around her arm.

[enzymelover]

I was wondering if anyone would consider NAET for eliminating their allergies. NAET is
Natural Allergy Elimination  Technique. I suppose it falls into the category of Energy Medicine, or maybe hocus-pocus! However, I tried it with my son, and it worked.

Unfortunately, the only thing my son seemed to be allergic to at the time, was grass and cat hair, so these were the only allergies he was "cured" of. The practitioner was very professional, and highly educated. I didn't take my son back to her when he later developed more serious problems (and our insurance doesn't cover NAET), but she really did get rid of his cat and grass allergies, and he felt better overall after the treatments.

Anyway, just wondering.

[castelanklan]

My heat goes out to you.  My son has the same bleeding oozing raw eczema on his legs and arms.  He was allergic to corn, wheat, milk, oats, dust mites and elm.  WE took him off all the foods, gave him all the ointments and 3 different oral meds.  It helped a little but I didn't see a major improvement until we stared buy organic and all natural foods.  The improvement was amazing.  Two years later he is alot better now. I don't have to buy everything organic but every little bit helps.  He is able to drink organic/all natural milk without any problems.  I keep hhim lathered up with Eucerin lotion too.
Good luck and God bless your family.

[mommyofmbs]

Wow! I thought i was alone on this! My son developed severe eczema after he was 3 months old- 1 yr now & we about tried anything under the sun. He started out all red & oozing & crusty for months til we found out he was allergic to Wheat, oats, dairy, egg whites, peanut, sesame seed, chicken, pork, cat, feathers... we eliminated the everything but he still suffered from very red & itchy skin all over his body, the face being the most severe. Dermetologist & allergists didn't help much.

We started using Mannatech about a month ago, 10 day trial basis, & didn't realize it was improving his skin. We assumed it was clearing up on it's own, as it does from time to time then flairs for no reason at all. Of course his eczema never totally cleared up but it showed signs of improvement. We got used to the idea. But getting back to Mannatech powder, when we ran out of our 10 day supple, the 3 days post, our son's face broke out in hives. So we know now the powder WAS working! We go do an herbalist to get the powder in once a day packets & mix it with his milk everyday. It doesn't work miracles but we do see improvement! Of all the ointments out there & wet wrapping techiniques the powder proved the most beneficial.

Hope this reaches out to many :)