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#31 |
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Re: Not sure if I should trust my gut or not, help me please?!
Sorry you are going through this, genetics is an evolving field, they don't know it all yet.
Sometimes all the tests in the world = no answer, yet you know there is something wrong, which is often more frustrating than having a not so good diagnosis. On the wee'ing front, I used to have that with my son and now he hardly goes (older now) he seemed to "grow out" of whtever it was. But they did some tests on him too cause it was crazy how often he goes. Now I'm the every 5 mins potty one in the house LOL Advertisement
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#32 |
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Re: Not sure if I should trust my gut or not, help me please?!
Our Naturalpath diagnosis my DHs dairy allergy with a blood test. We thought he had cancer or something! He was always getting sick, having the typical bathroom issues, but also getting migraines and neck pain, and the he thought he was having a heart attack from severe reflux. He went on Nexium but it didn't get better until he cut out all dairy - which included bread that has whey or casein or lactose in it. We have to be really careful because casein is used as a preservative in boxed food.
The GI Dr never mentioned a food allergy and just put him on meds while our Naturalpath actually found the problem and worked with us to solve it. |
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#33 |
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Join Date: Jul 2007
Posts: 74
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Re: Not sure if I should trust my gut or not, help me please?!
I know I am jumping late to this - but all of your symptoms SCREAM eosinophilic esophagitis to me. It's one of the Eosinophilic Gastrointestinal Disorders (EGIDs). These symptoms just SCREAM it to me. My 6 year old has it and was diagnosed when he was 4 - which was about the time that he was finally able to describe some of the pain things he was experiencing that previously he couldn't (like you said). Many GIs are not knowledgeable about this disease. Here are the things you list that are big flags with EGIDS, specifically EoE (eosinophilic esophagitis):
*pain in the chest/stomach area (which can be intermittent, can feel like stabbing/burning/glass) *refluxing up/throwing up food and swallowing it down, that is not necessarily treated with reflux medication (in fact, they want you on something like a PPI when they do the first scope/biopsies to make sure it is not just reflux because EoE won't respond to reflux medications) *texture aversions (soft foods feel better going down - kids with EoE at a young age often chipmunk their foods, drink lots of water to help swallow it, etc) *delayed reactions to a food - often EGID reactions *burping a lot *other allergic responses (like enlarged tonsils/adenoids) Other things that lots of kids with EoE and EGIDs present with is the fatigue - my little guy from age 3 to 4 majorly started getting tired, sleeping more, just laying around on the couch, not having as much energy. The SPD component is also another one that a lot of parents with kids this age experience with their kids with EoE before it is caught. My son was in OT for sensory processing issues at this age (3) because he was starting to have a lot of issues. When we finally got his first scope, his inside was a MESS. He had bleeding ulcers in his stomach, his esophagus was covered with white plaque and furrowed and the tissue was fibrotic. The doctor couldn't believe that he wasn't screaming in pain all day from it - and we discovered that his pain tolerance was SO high because he was pretty much in constant pain all day long. Once he got more verbal, he told us that it felt like he had glass in his stomach/chest. Once we started treating it and figuring it out, he started gaining weight again, his sensory issues went away, and he started getting so much more energy. He also started realizing what it felt like to NOT have pain - which helped us discover when he was having issues. PLEASE - go to community.kidswithfoodallergies.org/displayForum/forum/eosinophilic_disorders and look around and find a GI who knows about EGIDs and can evaluate him for it. |
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#34 |
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Re: Not sure if I should trust my gut or not, help me please?!
Have you ever thougt of food allergies? The blinking tic is what clued me in, my son started having that eye blinking thing and gulping alot and we realized it was happening when he was consuming milk or milk containing products, we pulled dairy from his diet and he hasnt had that since. I was talking to a friend of mine recently ans she said her dairy allergic son had the same symptoms when he was young (he is severly allergic and even has an epi pen because of it)
So is suspect dairy allergy, can you pull dairy for a couple weeks and see how he does? It can take up to two weeks for it to leave a persons system. If not dairy i would start keeping a food journal and systematically removing things from his diet. ![]()
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#35 |
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Re: Not sure if I should trust my gut or not, help me please?!
I'd look for a pediatrician who is also a mother. That's our situation and when I go in and say, "this isn't normal for my son" she actually believes me. She takes a mother's intuition seriously.
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#36 | ||
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Location: between the Mississippi and a cornfield
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Re: Not sure if I should trust my gut or not, help me please?!
Thank you, devon, for all of your information! I PM'd you, I will see if that's an avenue we need to check in to.
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#37 | |
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I was following this thread, hope you get some answers soon
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#38 |
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Re: Not sure if I should trust my gut or not, help me please?!
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