Not sure if I should trust my gut or not, help me please?!

[PoshPants]

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

[kaydove]

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.

[devon]

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.

[marliah]

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.

[MamaLump]

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.

[UnderTheStars]

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.

Originally Posted by marliah 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.

I point-blank asked his GI doc about food allergies at his last appointment and she said no, it wouldn't be that, he would have different symptoms if that were the case (rashes and diarrhea, for instance, which he has neither of). Eliminating dairy would be REALLY hard for us to do - his diet is severely limited right now and his main source of nutrition is PediaSmart with yogurt being one of a small handful of "safe" foods and the last time I tried to mess with that, he stopped eating altogether and ended up on a feeding tube (granted, that was over a year ago...).

Originally Posted by MamaLump 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.

Our pediatrician is absolutely amazing, she is a mother and she really helps out as much as she can...but she has no answers for me. Only referrals, and it's those specialists who aren't looking at the whole picture. Since I last posted, he did see a psychologist and they think that he may have a chronic tic disorder but were hesitant to label it because it hadn't been going on for long enough to make an official diagnosis. They dismissed the fatigue and the tummy aches, as usual.... We did at least get him in to urology on Monday for the peeing thing so maybe we will know a little bit more then. Thank you everyone for your suggestions!

[Happy Mommax4]

Originally Posted by devon 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.

Big (((hugs))) mamma-that's terrible!

I was following this thread, hope you get some answers soon

[Sweet_Fantasy_Fox]

Originally Posted by tinyblackdot Yes! If your Drs are not listening to you find some that will! As a mother of a child with cancer, ALWAYS listen to your instincts! Does he have any lumps under the skin?

I agree 100%, take him to another dr but don't ignore these symptoms.