Landen's allergy testing

[Anonymous]

Landen’s skin prick testing came back negative. I am very happy about this, however, it does not explain his excema. His allergist said we are dealing with food intolerances (yea, we knew that) but we really wanted answers regarding the ongoing skin issues! I suppose it could be environmental which we did not do today or the dog.

he also got onto DH and I for putting Landen on potato milk. he said we might as well have him on water! I was thinking “why don’t YOU try to find a mik he can tolerate!” He then said we should trial soy milk again giving 1/2 oz per day and working our way up looking for intolerances. If it fails, he wants landen to be on Neocate starting Oct. 1 (when he knows Insurance HAS to cover it for us) We told him we couldn’t afford to put him back on it without coverage after paying out of pocket for so long. He explained that landen’s potato milk lacked fat (this I knew and I thought I could make up for it in his diet and told him we made many efforts to) and that Landen’s brain still needed lots of fat at this age. I felt like a bad mom! I dont know what to do if soymilk does not work. He will NOT drink neocate from a sippy cup!!!!

I also asked him about the Intolerance testing from Great Plains, wondering if it would show a soy intolerance and that might help us *know* if we should even go there and he told me that it was totally bogus!!!! I took that comment with a grain of salt as I have not done enough research on either end. I was just shocked to hear that!! He said that everyone produces IgG antibodies and we all have them all the time and will all produce a report. has anyone else heard of this? Sheri, I am curious what your comments are?! Again, I took it with a grain. Just like some Chiros think our babies just need adjusting every week and don’t need reflux meds…ya know.

so there is my long update. if you are still awake (LOL) you deserve a medal.

[Anonymous]

Yes, Landen’s brain still needs a lot of fat @ this age, but you can certainly make up for the fat from other sources. Whole cow’s milk is suggested for the fat & calcium… if you can find replacements for both of those then don’t stress (just my opinion though-I”m not a dr.-lol). I know that one of the peds in our practice says 1% or skim is what he suggests for 1yo+ (the rest say 2yo+).

As for the IgG testing…I think (& I’m not positive) that they have to be exposed to it somehow to build up the antibodies… so eventhough he may be intolerant to soy it may not show up b/c he hasn’t had any. This was my understanding from our ped GI’s explanation (& why we have to wait a bit longer for Evan’s testing).

Sorry for the disappointing appt – sounds like such a bummer. Remember that you’re still doing all you can for you little guy & don’t let some dr. make you feel otherwise.

[Anonymous]

Jill – Thanks for the update! I hope you’re able to find a nutritionally sound replacement for the potato milk. I know how hard it must be to find something he can tolerate that still has everything he needs. Keep us posted!!!

[Anonymous]

So glad he didn’t test as having any true allergies but I know how frustrated you must be. YOU ARE NOT A BAD MOMMY!!! (not yelling, just emphasizing!) What I would do if I were you speaking as a mommy and as a dietitian is: give him olive oil and or canola oil in any and everything you can. Give him Avocado 2-3 times/wk and give him higher fat meats (go for the really greasy ground beef). I put Cooper on 2% milk at 15 months and didn’t even discuss it with his ped… I did mention at 12 months that I might do it, but he gets plenty of fat in his diet and I just took the milk fat out of the equation. Also find you a dairy/soy free “margarine” and put that on toast, bagels, crackers and on potatoes to add fat that way. Okay off my dietitian soapbox. HUGS to you. I have been thinking about you guys all day long. I almost bet the skin issues are environmental… and for your sake I pray not the dog as well!

[Anonymous]

sorry I am late getting back to this…. thanks for all of your replies…Beth, thanks for all of the suggestions. I talked to Sheri about this and I am glad I took what the allergist said with a grain…. We are starting Landen out on EO28 splash. The pedi thinks he might like the taste. We’ll give it a try and of course, keep everyone posted. BTW- for anyone interested, Neocate sent me a 6 pack of EO28 splash samples (2 of each flavor).

[hellbennt]

hugs! can you post a bit of what sheri told you? I’m always curious, LOL!

as for getting fat into their diets, there are so many ways!

[Anonymous]

Boy that allergist makes me mad! But then again, so did the first one we saw for Ben. You might as well be giving him water? Give me a break. Yes, all toddlers need a good intake of fats for healthy development. Beth had some great tips for adding fats in to Landen’s diet. Another tip I’ve picked up along our dairy, soy and egg free journey is to try mixing some coconut milk into his milk substitute (if you decide to continue with the DariFree potato milk). Coconut milk is a great fat source and a good yeast fighter too.

As for IgG testing and most allergists, here is my shpeal. Unfortunately so many allergists don’t think outside the box – if it’s not something they can see physically, like on the skin prick test, then it can’t be related to allergies of any sort. In their mind, there’s just no possibility that IgG allergies can produce unseen effects on the body and brain. Also it’s such new and cutting-edge research that the information isn’t widely known or accepted yet. And you know, our first allergist said the exact same thing about everyone having IgG antibodies in their system… blah, blah, blah. Of course we all do! And we all have IgE antibodies in our system. It’s not just the presence of them that counts, it’s the amount!! If the level is within normal limits, then all is well. If it’s sky high, then that’s not normal and the body will have an allergic reation. Since IgG allergies produce delayed effects (could be 8 hours later, could be 3 days later) it’s hard to link the two. However, since IgE allergies produce immediate effects it is easy to see, test, and prove. And Erin is right, the person needs to have been recently exposed to the food in order for it to show up on an IgG test. So if Landen never, ever gets dairy then dairy will likely not show up as an IgG allergy on the test because the body hasn’t had any reason to produce the IgG antibodies to it. This is not the same for IgE antibodies.

Sorry for the long rant. You’d think I was an anti-medical establishment hippie by the way I’m talking, not a pharmacist! But my proof, all the proof I need, is in my son. You would honestly not believe the incredible changes in him since removing gluten and casein and his IgG food allergens. He’s no longer a raging, tantruming, uncomfortable, unhappy boy – he is so happy and an absolute joy!

[Anonymous]

Thanks Sheri! You made me feel better about the potato milk. I knew it wasn’t bad for him and knew his diet was OK. It always makes you feel like crap when someone makes you feel like a horrible parent. And of course, DH doesn’t regularly get support here, so he REALLY thought we were doing something wrong!!! I will try adding coconut milk and the Blue Agave Nectar seems to help with flavor. THANKS!!!

And Laura, I had PM’d her back to see if I could just copy her message notes here or if she could possibly post herself. I am glad she beat me here, she always has so much wisdom!!! I am sure the explanation of the testing will help more people than just myself. I am sure Sheri and I are not the only 2 ppl that will run into an allergist with those thoughts/comments.

Thanks, Sheri

[Anonymous]

i guess we must be lucky with our allergist. i took sammie and elliot in yesterday—–a couple of months ago sammie had a cough that seemed to last forever, but she wasn’t sick. we had already tested elliot and knew he has all kinds of allergies. he was in to get started on allergy shots. the allergist did prick tests on sammie’s back, but nothing showed up. he also drew blood—i assume for other testing. he said that even though nothing showed up on the skin tests, he is seeing allergies. he asked me if her eyes were always so red—–i told him that they always looked like that—kind of puffy red eyelids—i thought it was normal for her because she is so fair skinned. her eyes are usually a little more puffy in the lower lids when she wakes up. they did a breathing test on her and he said she is showing borderline asthma—she couldn’t get the levels up where they needed to be.

he is starting her on an allergy med and will check her again in 3-4 weeks to see if it is helping and then sometime next winter we will move on to the stage 2 testing—needles under the skin. i’m glad he is paying attention to her symptoms even though nothing showed in the testing so far.

kind of a funny thing—i have some allergies, but nothing that is much of a problem for me. after sitting in the allergists office for 2 hours, i was starting to get a cough and my allergies were acting up.

also, jill—-i have atopic dermatitis, i have had it for most of my life and it doesn’t appear to be connected to any allergies—it’s just a skin problem.

molly was pretty rashy as a little girl, but it seems to have cleared up with age. tianna had alot of rashes before she was diagnosed with celiac. eliminating gluten has pretty much cleared up her rashes. rashes can be such a pain to figure out!!!!!

kevieb2008-09-05 16:02:57

[Anonymous]

I have had psoriasis most of my life. It has gotten much better as I have gotten older. I used to have it head to toe when I was in elem. school. Now the only places I have psoriasis is the bottom of my feet and my ankles.

My derm. prescribed a steroid cream which wasn’t helping very much. He had me tested for rheumatoid arthritis, based on the fact that the posriasis was on a joint. The derm told me that they are thinking now that a lot of cases of psoriasis are autoimmune related. Thank GOD my RA test came back neg. I still use the stupid cream, b/c its pretty much the strongest stuff available.

I agree with Christine. Skin stuff is such a PITA.

[Anonymous]

Jill,

I am late in reading this. I am sorry to hear about your allergist results. I actually took McKEnzie in this week and all of hers came back negative too. But my allergist told me that it isn’t until really 5 years old that you can get a true sense of what is going on. As for the IgG…I got it done with McKenzie too as I had avoided so many things and she still seemed to be having issues. It was very enlightening the results I got back. She had a reaction (again like Sheri said…about the “normal” limit) to sunflower seeds and I had been living off sunnut butter. Also she showed a reaction to brewers yeast (not bakers, go figure). After you get your results I got to talk to a nutritionist who was able to tell me some further interpretation of the results. (Oh that reminds me, Sheri I have to PM you a question… Iwill do that at nap time). Anywho, it was worth it for me, but honestly, I don’t think that skin problems are a result of IgG allergies. Sheri can correct me if I am wrong (which is highly likely..lol) But I was under the impression that IgG had to do more with gastro issues. Here is [prayers that Soy milk goes well, but if not, at least you live in MD and neocate will be covered Oct 1st.

PS: that allergist doesn’t know squat if he said that you had to be on whole milk to get fat. And you are a FANTABULOUS mom! Fat comes from all places (including my belly..lol) and Landen will be fine! The coconut milk is a great idea. I actually give McKenzie some coconut oil each day as it has the yeast fighter and she still isn’t really taking off with her weight gain. Keep us updated on the soy trial!

[Anonymous]

Thanks everyone!

Emily, we did try soy for a couple of days, I knew it wouldn’t work, I was sort of humoring myself I think and Landen occasionally gets a sip of Kaden’s and didn’t react, so in the back of my mind it made me think “can he handle it now?” so I had to know. Well, I gave him a few ounces of his own and it’s weird what I’ve learned. His intolerance reaction to soy is within 1/2 hr and it causes BLOWOUT diarrea (sorry for anyone trying to eat at their PC right now. lol) I tried again the next day, not a fluke, same reaction and on day 2 there was mucous and angry red ring and rash.

Then I decided to try Pediasure, 2 oz mixed into his potato milk, to thicken it up and give it a vanilla flavor and see if he can handle some dairy. His intolerance reaction to milk takes 5-8 hrs and causes him severe stomach cramping for about half an hour first, then he has blowout diarrea with mucous.

So at 18 months, he has not outgrown his intolerances to milk and soy and I have pinned down the timing almost to a science. I guess I don’t need a test to tell me he’s intolerant to those things. lol. I know rice still bothers him if he gets too much and if he has anything with banana or tomato, he refluxes and is up all night. I always wonder if there is more though. I don’t know if I will ever figure his excema out. I hope he outgrows it like Christine said. 🙂

[Anonymous]

kristin—-from what i have learned in my studying of autoimmune diseases—which seem to plague our family—psoriasis is considered an autoimmune disease. a few months ago my dad was diagnosed with autoimmune pancreatitits, which is usually resolved with prednisone. but i guess the steroids lower your immune system and he ended up with a staff infection in his spine. he has been pretty sick the last couple of months and i didn’t even know it until a few days ago.

i discovered that autoimmune pancreatitis is often connected to primary schlerosing cholingitis (a liver disease) and inflamatory bowel diseases—both of which one of my sisters has.(plus autoimmune hepatitis). my brother has type 1 diabetes, which is piggyback on the same gene as celiac.

i have been having terrible carpal tunnel problems so the doc checked my B-12 and thyroid. my thyroid is low. the psych took me off the meds because the surgeon had shut my normally functioning thyroid down on purpose years ago because of thyroid lumps. first test was normal, so i didn’t even think about it again until our bone doc checked it. i just read that sometimes low thyroid can either be caused by a pituitary problem or it can be in the thyroid itself—-and sometimes it is an autoimmune problem. i think i have read that they are wondering if fibromyalgia might be an autoimmune problem sometimes.

i don’t think i would mind going back to the days when atopic dermatitis was by biggest problem. i’m so used to the rashes that i hardly think twice about them unless they get to really hurting my fingers with cracks, or if i get some unbearable itching. but, i have been using steroid creams for over 35 years and i am wondering if it has had any effect on my adrenal system—something new i just read about—but i think it is only with extensive use over alot of the body and it sounds like it is usually reversible by itself, but occasionaly needs a little help to resolve.

sorry, i guess i kind of hijacked this thread a little.

[Anonymous]

kevieb wrote: kristin—-from what i have learned in my studying of autoimmune diseases—which seem to plague our family—psoriasis is considered an autoimmune disease. a few months ago my dad was diagnosed with autoimmune pancreatitits, which is usually resolved with prednisone. but i guess the steroids lower your immune system and he ended up with a staff infection in his spine. he has been pretty sick the last couple of months and i didn’t even know it until a few days ago.

i discovered that autoimmune pancreatitis is often connected to primary schlerosing cholingitis (a liver disease) and inflamatory bowel diseases—both of which one of my sisters has.(plus autoimmune hepatitis). my brother has type 1 diabetes, which is piggyback on the same gene as celiac.

i have been having terrible carpal tunnel problems so the doc checked my B-12 and thyroid. my thyroid is low. the psych took me off the meds because the surgeon had shut my normally functioning thyroid down on purpose years ago because of thyroid lumps. first test was normal, so i didn’t even think about it again until our bone doc checked it. i just read that sometimes low thyroid can either be caused by a pituitary problem or it can be in the thyroid itself—-and sometimes it is an autoimmune problem. i think i have read that they are wondering if fibromyalgia might be an autoimmune problem sometimes.

i don’t think i would mind going back to the days when atopic dermatitis was by biggest problem. i’m so used to the rashes that i hardly think twice about them unless they get to really hurting my fingers with cracks, or if i get some unbearable itching. but, i have been using steroid creams for over 35 years and i am wondering if it has had any effect on my adrenal system—something new i just read about—but i think it is only with extensive use over alot of the body and it sounds like it is usually reversible by itself, but occasionaly needs a little help to resolve.

sorry, i guess i kind of hijacked this thread a little.

feel free to hyjack, esp on this subject! my family is plagued with autoimmune problems as well. my mom has fibrmyalgia, rheumatoid arthritis and was JUST diagnosed with what they thought was rheumatoid vasculitis, but it was actually a severe allergic reaction to the ONLY IV medication that was keeping her RA under control (Orencia) she has been on all other RA drugs and reacted to them in some form or fashion (remicade, MTX, Humira, etc etc) she is now on just steroids. this sucks b/c now she is just going to get worse. 🙁

my grandmother had a weird autoimmune disorder where her eye would droop and they would have to surgically tie it up and on that same side of her face, her throat would close up and she’d have swallowing problems. I forget what it was called. my aunt also had RA (she passed away) but not from RA!

i live in fear all of the time that i will get an autoimmune illness. so far i suffer from migraines and a jaw that clicks out of place (my mom had that problem about 20 years ago) but no other symptoms other than a sudden appearance of keratosis pilaris (rash on the back of my arms) that just popped up like FIVE minutes after I delivered kaden and never went away no matter what i use on it.

sorry to hyjack your hyjack. LOL

[Anonymous]

Hey Jill,

sorry the allergist was so rude.

We went to 3 allergist before i found one that was nice and helpful enough. Our skin prick test showed nothing as well. The patch test however did showed about 10 foods problem. We started with that list and have eliminated other foods with positive reaction.

I hope you can figure out all the food that make him sick.

hugs

Leo

[Author]

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