18M Old - With Genetics Against Her

[Aprilelayne]

Tomorrow is our allergist/immunologist meeting (finally!) and hopefully we will come back with some plan of action. Either additional testing or an action plan to manage her confirmed soy allergy.

 

She is still randomly reacting to something though, sh had a bad reaction on Sunday to something I cannot pinpoint.

I wrote her food log out before I forgot anything:

 

Sunday 4/21
Observed: flushed cheeks and bumps around mouth noticed around 3pm.

Foods eaten prior:
-Apple Cinnamon Nutrigrain bar (soyfree)

-1 piece of wheat bread for french toast (homemade, soy free)
-syrup (soyfree)
-turkey sausage (soy and gluten free)

-1 Betty Crocker Oatmeal cookie (soy in the ‘may’ category)
-Capri Sun fruit punch juice box.

-Stouffers’ Whale crackers (soyfree)
-sliced apple

*Flushed cheeks noticed at 3ish*

4:15-4:30 – three trips to restroom
4:30 – diarrhea response.
Irritability through evening and morning.

 

Yesterday when I picked her up from school I saw the flushing again and asked about her foods.  They saw the flushing as a result of her brief time outdoors which is possible, but I'm trying to make sure we are finding all these hidden sources of soy.

 

Yesterday she had mini-raviolis (soy content unknown so far, but obviously gluten) and fruit for lunch.  She got her soyfree alternatives for all the snacks of the day.

 

 

 

random note for my ailments:

Since doing the gluten challenge Feb-April, I am now losing a 2nd toenail randomly and continue to have bad headaches and nausea in the evenings after 4pm.

[Aprilelayne]

Met with the allergist yesterday...and honestly I'm not optimistic to answers.  That or I'm just frustrated.

 

We discussed her history and reaction patterns, I gave her the detailed food logs for the last three incidents, all of which were soy-free days.  Before we got to that she explained that soy is typically a minor allergy that kids do grow out of.  I then explained the cycle and extreme reactions she gets, gave her the daily logs and she agreed there is something else causing her the problem.

 

We have skin testing on 5/15.  She's testing wheat again because she's suspect of that despite the blood test (which is good for allergy sake, not celiac) and focusing on her suspected reactions to fruit.  She's testing a slew of things but specifically adding wheat and the fruits.

 

I was just slightly disappointed because while a very pleasant doctor , she seemed not overly concerned because she wasn't have any breathing or wheezing issues with her reactions (as in like a severe peanut allergy) so I felt like it was 'oh, she just gets red cheeks?--no biggie'

I explained that if whatever she is struggling with if anything like mine, she is likely in abdominal pain from spasms or cramps.  That we need to know what to avoid even if she's frigging labelled IBS, I just need to know what to weed out of her diet to let her not vomit once a week or have four to five bowel movements a day.

 

I'm cranky.

 

I've been nauseous every night for almost two weeks, no doubt stress induced. 

 

3/10 - Gastro appt - to discuss scope for reflux

3/15 - Allergist appt - for skin allergy testing

[GottaSki]

You have every right to be cranky. Unfortunately - many of us have had many experiences just like this with our doctors....even more unfortunate is even the top doctors in their specialties do not often look at the entire patient - they treat symptoms not the whole body.

IMO - the worst sentence uttered by nearly every doctor I met with for several decades is:

What are you here for today? Rarely do doctors have time to play detective for their patients - sadly that is our job as patients and as parents of patients -- key word and what we need by the truckload = patience.

[Aprilelayne]

And I'm fully aware that I'm now more on an allergy quest than a celiac one if necessary, but honestly I haven't found another forum that  is similar enough since her issues are prominently gastro related.  Just being clear that I am fully aware that celiac is not an allergy.

 

I do know that I have a refluxy,ezcema laden kiddo who vomits regularly and has upset stomach daily who can barely get to the bathroom in time for her foul diarrhea. She will soon hit the embarassment issue at school for her explosive and noisy movements as the toilet is just a sub room within the classroom where everyone (classmates and teachers) can hear what's going on.

I have an irritable, clingy toddler every evening who needs her back patted to help expel the gas.

 

 

 

I am sure that my health deteriorating is due to the stress and focus on hers right now.  But I'll keep chugging along and just vent and whine in here (nobody feel the need to respond! ha, just let me get it out somewhere)

 

i need a nap.

[pricklypear1971]

And I'm fully aware that I'm now more on an allergy quest than a celiac one if necessary, but honestly I haven't found another forum that is similar enough since her issues are prominently gastro related. Just being clear that I am fully aware that celiac is not an allergy.

I do know that I have a refluxy,ezcema laden kiddo who vomits regularly and has upset stomach daily who can barely get to the bathroom in time for her foul diarrhea. She will soon hit the embarassment issue at school for her explosive and noisy movements as the toilet is just a sub room within the classroom where everyone (classmates and teachers) can hear what's going on.

I have an irritable, clingy toddler every evening who needs her back patted to help expel the gas.

I am sure that my health deteriorating is due to the stress and focus on hers right now. But I'll keep chugging along and just vent and whine in here (nobody feel the need to respond! ha, just let me get it out somewhere)

i need a nap.

Honestly, I don't think you can determine if she has allergies vs. intolerances at this point. Allergies can be missed during testing, and there aren't reliable tests for intolerances. Over time, an allergic reaction may become crystal clear, unfortunately.

I wouldn't be surprised if all the testing comes up with no definitive answer...just evidence of reflux and gi irritation.

I truly think you'll have to take the issues into your own hands - elimination diets for all, to come up with answers.

I do hope the testing yields helpful information. All of you have certainly suffered enough.

[ravenwoodglass]

I hope you made sure that your allergist will deal with intolerances as well as true allergies. My allergist literally saved my live because my false negative blood tests meant the GI wouldn't even consider a biopsy.  A good allergist will give you a starting point for an elimination diet, a good idea for the both of you IMHO. Please don't put all your symptoms down to 'stress' and don't let the doctors tell you that her agony is in any way normal. I really hope you will do a strict elimination of gluten for you both. Inconvient as that may be. If you can't get her daycare on board looking for another care giver who will might benefit you both.

[Aprilelayne]

Small update....

 

We met with the gastro on Friday, who is now bringing the scope on the table sooner  than later in response to the allergist's plan.

 

We have allergy skin testing on Wednesday of this week to determine any other major allergen issues.  I am to call the gastro's office with the findings or to prompt them to obtain the results from the allergist.

 

she verbally simply said we would likely scope if any other allergens show as positive for an esophagus condition (dumbing it down for me I presume.)

 

Her handwriten note on the appt notes: "pending ai test (allergy skin test) probable endoscope to evaluate for ee"

 

So still moving forward, not celiac-based, but the quest to decipher her gastro and reflux problems.

[pricklypear1971]

Small update....

We met with the gastro on Friday, who is now bringing the scope on the table sooner than later in response to the allergist's plan.

We have allergy skin testing on Wednesday of this week to determine any other major allergen issues. I am to call the gastro's office with the findings or to prompt them to obtain the results from the allergist.

she verbally simply said we would likely scope if any other allergens show as positive for an esophagus condition (dumbing it down for me I presume.)

Her handwriten note on the appt notes: "pending ai test (allergy skin test) probable endoscope to evaluate for ee"

So still moving forward, not celiac-based, but the quest to decipher her gastro and reflux problems.

Excellent news things are moving forward.

I would INSIST they take samples for Celiac testing while they scope.

[Aprilelayne]

I would INSIST they take samples for Celiac testing while they scope.

ABSOLUTELY!

If we are sedating her at all, I want to address as many things as possible in one swoop.

[Aprilelayne]

Skin testing of suspected allergens was a bust yesterday. Nothing, not even soy showed up positive despite the RAST test and marked improvement since its elimination.

 

The allergist was apologetic and explained that while she may not have an IgE reaction or response, she obviously is having a gastro response to soy and other stuff.  She agreed that the endoscope is what she would do next to find out truly how damaged her esophagus is from the reflux. 

 

I dropped off the negative results to the gastro when I left the building yesterday at noon, so I'll call this afternoon to prod them along to see what the plan is.

 

All I do know, is that since having to be off of zyrtec and allergy meds for the skin testing, she complained about her chest and belly hurting almost daily   she stopped her meds last Wednesday and Friday is when things started going downhill with severe diarrhea again and the complaints.

 

I'm not sure on the EGID front though either....its just the next dx to eliminate.

[pricklypear1971]

It's possible that the allergy meds are acting on something that was untested. Any allergist will admit they only have tests for a fraction of possible allergens. It's also possible the allergy meds are suppressing her autoimmune reaction to something. I personally get great relief from autoimmune symptoms by taking antihistamines. It's a cheat to keep me going if things get really bad.

[GottaSki]

It's possible that the allergy meds are acting on something that was untested. Any allergist will admit they only have tests for a fraction of possible allergens. It's also possible the allergy meds are suppressing her autoimmune reaction to something. I personally get great relief from autoimmune symptoms by taking antihistamines. It's a cheat to keep me going if things get really bad.

 

Ditto.

[weluvgators]

Just wanted to pop in and let you know that our family has had heaps of difficulties with diagnosis and protocol development in our journey. To make progress, our family adopted a gluten, dairy and soy free diet. We experienced some extensive complications that resulted in hospitalisations for one of my children, most likely due to chronic gluten exposure at school. Our family manages both celiac and gluten allergy, and two of my gluten-free children report that Zyrtec helps with the bellyaches. We also find Zyrtec helpful in managing the extensive skin issues that we endure when our gluten exposures are not managed with enough diligence. We have been able to navigate childcare as well, and if your centre has good allergen training, they should be able to manage your child's medical condition well. Play dough is often one of the more difficult ones to work through for early childhood activities, and we have approached that in several different ways.

I am happy to share more specifics of our experiences if you want, and we have entirely more experience with juevenile arthritis issues than I want (a complication that I had not seen coming after months of extensive and chronic skin issues). I hope that you are able to find relief soon. We really had to scale back all dietary variables as much as possible to make good progress. We then had to refine our environmental exposures to ensure our good health. You may want to review "atopy" as it sounds like you may be dealing a bit with that. I didn't read all of the pages of this thread, so apologies if I missed important info. While my kids have not had elevated IgE readings, my skin tests and family history lead them to allergy predisposition. As such, and based on their past reactions, they each have a specific Allergy Action Plan. Good luck navigating this diagnostic process.