Advice for toddler with food allergies

izzetoot

This is probably a stretch but I am hoping to find someone that has some experience with what we are going through.  Here goes...

My son who is 20 months, has always been underweight (currently 21lbs) and has had a vomiting problem since we started him on solids.  At our 18 mo check up our Pedi suggested we see a GI doctor for his persistent vomiting and inability to gain weight.  He has gained about 1.5lbs in the last 10 months and has also stopped growing longer/taller, he's 31 inches now.  We took him to a GI yesterday and we are waiting for someone to call us to schedule a number of tests and xrays to see if they can find what is wrong with him.  They are throwing around words like EoE, celiac, food allergies, GERD, inability to thrive and it is completely freaking me out.  We also have never been able to sleep train him because if he cries too intensely for more than a few minutes he starts vomiting, so the CIO method has never been an option for us. He's woken up at least twice a night for anywhere from 30m to 3 or 4 hours for over 6 months. We are all completely exhausted and now scared about what the future holds.  EoE is apparently pretty rare but that is what my GI is leaning towards. Ive been researching all over the internet for a while and it is only making me worry more   Im wondering if anyone has a child with the same condition or similar or knows anything about it that can help shed some light?  TIA

RedMar

I'm so sorry you have to go through this! That sounds awful! Did he have to go through an endoscopy?

I have experience with Celiac's, but not EoE (had to google this). We have had my son on a gf diet since that's how we eat and it is hereditary. The one time we did give him gluten, he had a weird rash and didn't poop for 3 days and it was miserable.

Good luck with everything and keep us posted as to what the doc says.

izzetoot

We're supposed to be getting an ultrasound and UGI testing done first and then if those are inconclusive we will do an endoscopy, which scares me bc of the anesthesia ;( I had never heard of EoE either which is why I Dr Interneted for a while until I scared myself silly. Im also super annoyed bc they were supposed to sched the tests yesterday and I still havent heard from anyone and I called once already today.  

RedMar

Oh man, hang in there momma. Specialty docs can be torturous to schedule something!

izzetoot

Thanks, they called. Finally! We have an appt on Thursday 

crispy11

Good luck on Thursday. I have a toddler with more traditional food allergies. My 2.5 is allergic to peanuts and was diagnosed by skin testing (and blood work) at 13 months. Keep us updated. I'm hoping for the best for your little guy! Also, probably not for food allergy reasons, but my 2.5 has slept through the night about twice in her life and is still nursing.  I am SCARED! I have 8 months to get our sleeping routine in gear.  

izzetoot

Thanks @crispy11 I keep telling my DH its totally normal that he still wakes up during the night.  I mean he's not even 2 yet! But DH is convinced it is somehow linked to this stomach problems. Maybe so and we'll get some answers soon. But yeah, I'm scared with you.  We need to get his sleeping routine in check before number 2 starts adding to the party   

schuberta

I sort of lurk on this board since I'm due in September, but I'm also super Internet-awkward, lol... But I have EoE as an adult, and it's such a frustrating disease! I feel for your son, and I'm so sorry he has to deal with this! Thank the stars that your doc is talking about allergies, because my GI doc just dismissed it and said it was incurable and I'd have to take pills for the rest of my life. Went to an allergist and eliminated all the foods I tested positive for, and I have had a dramatic reduction in symptoms. 

My advice is, if it is EoE, definitely see an allergist. My allergist said a lot of GI docs are dismissive about treating EoE with food elimination for some reason. But I really feel 100 times better now than even when I was on my medications. 

What my dr suggested when I got diagnosed with EoE is to try an elimination diet of the main 8 allergens (wheat, soy, egg, milk, peanuts, tree nuts, fish, shellfish), and see if symptoms subside. Statistically, it's most likely to be one of those things, and they're all hidden in so many things. Then you add back in one food category at a time, for like a week, and see if symptoms return. If not, it's most likely not the trigger. That's something you can do while you're waiting on testing, at least! Though if he's going to be tested for celiac, don't cut out wheat because he has to be on wheat for the testing to be accurate!

RedMar

I totally agree with PP. I learned through my battle that doctors like to give you the meds vs. be proactive and identify the source of the issue. How else would the pharmaceutical companies make $$? They're most definitely in cahoots. We have all of these drugs (as seen on TV) and it seems their side effects are way more daunting than the original ailment. "Ask your doctor about such and such...and then bleed out your anus"

izzetoot

Thank you @schuberta!! I read about the elimination diet and his GI mentioned that if EoE was the diagnosis we would begin treatment with dietary changes.  Luckily she doesn't think its milk bc he never had any trouble with breastmilk or formula as a baby.  Can you tell me if its a gradual process of the esophagus becoming inflamed after being exposed to whatever allergy it is over and over again and then the vomiting is then triggered bc the passage way is so narrow that no food can pass through easily? Thats kind of the impression I got, but am unsure if thats what is really happening.  But it does make sense since we cant seem to pinpoint one type of food over another that seems to trigger the vomitting. Which means it could in fact be dairy?

izzetoot

LOL agreed @RedMar !!

schuberta

That's so great that his GI doctor is enlightened about this kind of thing! I'm not sure about how the vomiting works, since I think that's a reaction that kids get but adults with EoE usually don't. But I do notice that I can eat something that I am allergic to for a day and be fine, but after a couple days I flare up. For me it's more about getting really bad reflux and food can get stuck in my throat because of the narrowing. So it seems to me like it's a logical deduction that the eosinophils build up after several exposures and then cause symptoms.

The other thing my allergist mentioned is that some trigger foods are delayed triggers--so you eat something like dairy today, you get no symptoms so you assume dairy is fine, but then a day or two later you have the symptoms and end up trying to connect it to something you ate that day. That's why elimination diets help, because if you're only adding one food back at a time and being very careful to avoid the other potential triggers, if he starts vomiting during that week then you know it's a possible trigger.

kmullins26

We had a similar problem with my step daughter we tried probiotics and they made a huge difference. She didn't have the bacteria in her stomach to digest food and after a while we didn't need the probiotics anymore. It worked for us!