New to posting, FA for 3 years w/????

Posted on: Mon, 02/27/2006 - 5:01pm
anonymous's picture
Offline
Joined: 05/28/2009 - 16:42

My son was diagnosed with FA at about 5 mos. He is now 3 yrs. I have some venting to do. And I have some questions.
History:
Except for one bottle of formula in the hospital, he was exclusively breastfed. After months of severe eczema, sporadic hives, and a bout of bloody diarrhea, our pediatrician tested for the most common food allergies. He tested + for milk, wheat, eggs, peanut, and soy. A day after the test he had hives in the shape of a hand on his arm where the tech held him with a latex glove.

I eliminated all those foods from my diet, threw out the pacifier, and changed diaper brands. His skin completely cleared up. It was incredibly difficult, but clearly saw the result of my eating an offensive food. About 10 - 12 hours later his eczema would be back and he was miserable. What a great way to lose the pregnancy weight! I got down to my wedding weight!!

I have had nothing but frustration with the allergist. During my first appointment I relayed my son's story and he told me, point-blank, that allergens do not pass through breastmilk. I explained the clearing of all symptoms when I eliminated everything from my diet, and he answered that he did not doubt what I was saying. And clearly the blood test showed that he had true allergies. What a way to start!!!

The following year's appointment was no better. I asked about a pollen allergy I suspect my son has. He was miserable watching a 4th of July parade and we happened to be sitting under a tree in full bloom. The allergist said he knows of no tree that blooms in July. End of story.

Maybe this guy sees people in a lot worse shape than my son, and maybe he will outgrow these allergies, but in the meantime, we are living with it everyday, and the impact is tremendous. At the last appointment (and I mean last with this guy!) I asked for more foods to be tested. I pointed out that the pediatrician just picked the original foods based on statistics, and that my son has symptoms that make me believe he's still consuming foods his body does not like. He replied "No, this should cover it." I did convince him to expand the skin test to include environmental allergens, like cats, dogs and dust. (Positive for dust and cats.) His attitude toward the latex allergy is just as bad. He claims latex is only in gloves and balloons. I printed out a 5-page list of common school supplies and play equipment that contain latex, but did not bother giving it to him.

Questions:
My son gets hives with contact with milk. If we touch him with the slightest of dairy residue, he will get hives at the point of contact. I therefore expect a severe reaction if he were to accidentally consume a dairy product. Is this a logical assumption? Is that how allergies work? Severe skin contact reaction = severe ingestion reaction?

He tested neg. for wheat on last tests. Gave him wheat foods and he developed cough and cold-like symptoms for 2 - 3 days, no one else in family sick. This happened 3 different times. Seems like allergy, not a cold despite neg. blood and skin tests. How common is neg. lab test met with positive reaction when eaten?

He has had a "bulls-eye" rash around his anus, forever. Allergist never heard of this before, did not think allergy related. I truly think it is. He's my third kid, and I have seen a lot of rashes, but none like this. Anyone else with this symptom?

Despite having no visible signs of skin problems now, he is incredibly itchy. He scratches and scratches, but no rash visible. Especially at night or when he has no clothes on. He scratches to the point of bleeding sometimes. Anti-itch medicines have very negative side effects for him. We slather him in vaseline, keep nails trimmed low, but have not found an antihistamine that does not make him incredibly cranky or hyper. I feel it could be more dust related than food, but how do you know?

His most severe reaction happened recently with fast food french fries. He's eaten these fries a number of times before, but I know you can never be certain about cross-contamination and this drove home the point. His face got flushed, he was developing hives around his mouth and he was trying to scratch his tongue. I pulled over and gave him benedryl and he was fine. How long after a reaction like that and giving Benedryl is the danger gone? He needed to take a nap when we got home, but I was afraid to let him out of my sight for awhile. If symptoms clear-up after the Bendryl, is it safe to put him to bed?

The thing I find most difficult in dealing with my son's allergies at this point is not knowing if symptoms are a response to food or environment. I am going to find an allergist willing to work with me and answer these questions, hopefully before starting pre-school in the fall. Wow! What a scary thought - preschool!

Wonderful to have this board to express all these thoughts! Thanks!

Anne

Posted on: Mon, 02/27/2006 - 10:03pm
anonymous's picture
Offline
Joined: 05/28/2009 - 16:42

Welcome to the board, Anne. I'm sure you will find a lot of help here. I'm sorry that you had such a bad experience with your allergist.
The part about breast milk not containing the proteins from allergens hit home. I had read that in a reliable source (I can't remember which one though, but wouldn't have taken it seriously otherwise) that allergens cannot be passed through breast milk. So I guess that used to be what they thought. Since then I have learned otherwise. And when DS kept throwing up after a feeding, I never thought it could be an allergy, especially my father kept telling me how I couldn't keep anything down as a baby. I found out he was allergic to peanuts right after weaning him at 1 year, when he threw up violently after his first taste of PB and then broke out in hives. I'm sure that me eating peanuts is what caused his problems as a baby.
I can't really answer your first couple of questions, but the itch does sound like eczema. Eczema starts as an itch without a rash, but becomes a rash because of scratching. And eczema goes hand in hand with allergies.

Posted on: Mon, 02/27/2006 - 10:33pm
smudgesgarden's picture
Offline
Joined: 02/26/2006 - 09:00

hello!
I just wanted to let you know that my sons gastroenterologist told me when i was brest feeding him i was not alowd to eat any dairy , nuts or beef, to rule out any allergies for my son. so i think that means that it does pass through the breast milk, turns out his constant throwing up was from a dairy and peanut allergy.
and for the constant itching we use cortaid hydrocortozone cream along with eucrin lotion. this realy helps johns constant itching. hope this helps

Posted on: Mon, 02/27/2006 - 11:08pm
Adele's picture
Offline
Joined: 01/31/2005 - 09:00

Hi Ethanb'smom,
I had a similar experience with an ignorant doctor so
I asked members here on PA.com to recommend an allergist in Arizona where I live. I found a great allergist thanks to other members.
I noticed in your profile that you don't say where you live...but even if you just give your state, perhaps there are members near you that can recommend an informed allergist.
Good luck with your son. My three year old grandson is also an Ethan.
Cheers,
Adele

Posted on: Tue, 02/28/2006 - 10:47am
Momcat's picture
Offline
Joined: 03/15/2005 - 09:00

I agree, you need to find a new doctor. This allergist is not up on current research. You may find a lot of answers and people going thru similar things with their kids at Kids With Food Allergies
[url="http://www.kidswithfoodallergies.org"]http://www.kidswithfoodallergies.org[/url]
I agree that the itching and anal rash can be symptoms of food allergies and since he is uncomfortable it is reasonable to test him for more foods. Keep in mind that testing is not perfect, though. The skin test may show false positives and the RAST may show false negatives. The real test is whether there is a reaction. Where did you get the french fries? Many fast food chains post their ingredients on the web. That could help narrow down your suspects if you are pretty sure the fries caused a reaction.
Good luck!
Cathy
------------------
Mom to 6 1/2 yr old PA/TNA daughter and 3 yr old son who is allergic to eggs.

Posted on: Tue, 02/28/2006 - 11:02am
Daisy's picture
Offline
Joined: 01/16/2006 - 09:00

Anne,
Welcome. You have found a great resource of information. And a group of people who will support you in your belief that your sons "allergist" needs to go back to school.
Yes, the "ring-around-the-bottom" is a classic sign of GI allergy. I have had this; very painful. Your whole intestinal tract just feels swollen and tender. My old Allergist explained that it's like a runny nose, just the other end! Mucus, too. Sorry...TMI.
Daisy

Posted on: Tue, 02/28/2006 - 11:23am
Anonymous's picture
Anonymous (not verified)

Hi Anne,
Regarding the fast food french fries. Were they McDonald's?
[url="http://msnbc.msn.com/id/11459132/"]http://msnbc.msn.com/id/11459132/[/url]
McDonald

Posted on: Tue, 02/28/2006 - 1:12pm
Laifong's picture
Offline
Joined: 07/12/2004 - 09:00

Hi Anne,
Your son's eczema sounds a lot like what my son had when he was younger. Hydrocortisone and antihistamines didn't help much. He seemed to be scratching himself all the time, and often until he was bleeding. Then, his dermatologist prescribed stronger steroids and that reduced the itching considerably. My son was also using the immunomodulators (Elidel and Protopic) for quite a long time, and those worked too. (We stopped using the immunomodulators when the FDA warning about their possible link to skin cancer came out). From my experience, it was beneficial to have both an allergist and a dermatologist because the latter dealt specifically with just the skin aspect of my son's condition. Thank God, his eczema is much better now (he's 4). I think the eczema does improve as the child gets older in many cases, so be encouraged! I hope you'll look into getting a dermatologist for your son. I hope you'll find a good allergist too!
Laifong

Posted on: Tue, 02/28/2006 - 3:35pm
anonymous's picture
Offline
Joined: 05/28/2009 - 16:42

Thanks for such positive response!
The french fries were from Jack in the Box. We were taking chances that we no longer take. It's very difficult with 2 older children with no food allergies ( 10 and 8 Yrs). But I'm sure you all know that.
It's also so difficult with a child so young because he can't communicate his symptoms. And, I worry that even when he can communicate these things, he won't know what it feels like to be symptom free. All of this is "normal" for him because it is all he has ever known. Have you ever had that experience where you didn't realize how sick you were until you were better?
The allergist we saw was head of the department for that medical center! I guess I'll post on the 'doctor's board' to find input on doctor in SF Bay Area. We have Kaiser and I'm going to try the allergy department in Walnut Creek and maybe Hayward. Our pediatrician has been wonderful but quickly admits her lack of expertise. I still thank her everytime we see her. Had she not ordered the tests we would not have discovered the latex allergy.
Do you have concerns using such large amounts of HC ointments? We have 2.5% ointment and cream, but have wondered if it's safe to apply to such a large % of his body. I do it for relief, but it has always been a concern of mine.
To be honest, I'm not sure about the wheat products. I will definitely go back and check the ingredients. That will help with deciding what other foods to test for in the near future. He has a check-up in March and I'll get in line for the dermatolagist as well.
Thanks for all the input, especially about the rash on his bottom. It seemed too obvious to me, but when the "experts" say no so many times, I start doubting myself.
Thanks again!
Anne

Posted on: Tue, 02/28/2006 - 10:16pm
CDMom's picture
Offline
Joined: 12/30/2005 - 09:00

ethanb'smom, welcome! I certainly am no expert but can offer support and my experience. I agree, get a new doctor!
Along with the other good advice you have received, you may want to consider if he is still being exposed unknowingly to one of his allergens. We found out a couple of months ago that our youngest is allergic to soy, along with the pn & eggs we knew about. I had to research and find out what all it is in and under what names. You may already know all this, so if you do, just smile at me!
Our doctor ordered strict avoidance for our son, which includes soybean oil and lecithin, which many (including FAAN) consider "safe for most allergic individuals." The reason is that supposedly all the protein is removed during the processing of those items, which can't be guaranteed. Because of this, we know longer can eat at any fast food restaurants of pizza places, as they all use soybean oil in something DS would be eating.
In addition, because the oil is not considered allergenic, the manufacturers don't have to disclose if it is used to make another ingredient. For example, I found out mono & di-glycerides are a no-no since they are usually made from soybean oil - maybe not, but probably- no way to know since they don't have to tell that. So that also lets out all the grocery store bread and most ice creams. Also, I found out on here about vitamin E usually being from soy. Some companies use that to preserve freshness.
I didn't mean for this to be so long, but thought that maybe your son is being exposed to soy without you realizing it. OTOH, you may already be avoiding all these things. Please ask your new doctor about this.
BTW, I understand what it is like to have two older non-FA children - whose lives have been drastically changed by little brother's allergies. I think they get a little frustrated at times, mostly that his allergens seem to be everywhere and in everything. They are very protective of him and will even double check that I read the label or do it themselves!
Hang in there and know you are not alone!
Edited to add: BTW, my older DS is Ethan! He was born with excema! Sounds weird, I know, but he did outgrow it eventually. It never occured to me that it could have been FA back then. Maybe it was and he outgrew it?
------------------
Jamie - mom to: dd(13) - NKA; ds(10) - asthma, enviromental allergies; ds(5) - PA/TNA/EA/Soy; enviromental allergies, slight asthma?
[This message has been edited by CDMom (edited March 01, 2006).]

Posted on: Tue, 02/28/2006 - 11:50pm
Adele's picture
Offline
Joined: 01/31/2005 - 09:00

Quote:Originally posted by ethanb'smom:
[b] His attitude toward the latex allergy is just as bad. He claims latex is only in gloves and balloons. I printed out a 5-page list of common school supplies and play equipment that contain latex, but did not bother giving it to him.
Anne
[/b]
My father's wife's son, a 40 year old, found out he had latex allergy a few months ago when he held a kid's ball in his hand and was repetitively squeezing it. His hand swelled to enormous proportions and he ended up in the ER.

Pages

Peanut Free Store

More Articles

There are many reasons why you may want to substitute almond flour for wheat flour in recipes. Of course, if you have a...

Are you looking for peanut-free candies as a special treat for a child with...

Do you have a child with peanut allergies and an upcoming birthday? Perhaps you'd like to bake a...

Most nut butters provide all the same benefits: an easy sandwich spread, a great dip for veggies, a fun addition to a smoothie. But not...

Do you have a sweet tooth and more specifically a chocolate craving? Those with peanut allergies must...