My dd - need a plan, update - 22 months

[rileyscoutmom]

I would love help sorting out and coming up with a plan to help my Scout, she is 22 months old. She has slept through the night comfortably only 4 nights in those 22 months. Many days she is in mild to severe pain - either from reflux or in her tummy. About 4 days a week she refuses a meal. She has gone down below 10% on the growth chart

History:

Hospitalized for seizures at 5 weeks, determined they were not seizures but a result of acid reflux

Hospitalized at 6 weeks because she stopped breathing and turned blue. Placed on apnea monitor for a period of months.

Even on Neocate, an elemental formula, she was not symptom free or able to be comfortable.


Symptoms:

1. Constant, frequent night waking - screaming, crying, gagging. (She has only slept peacefully for 4 nights in her entire life. Not consecutively). Lots of back arching in her sleep.

2. You can often feel the acid coming up if you have your hand on her.

3. She often swallows really hard then sucks voraciously.

4. Frequent wet coughs and burps

5. 3 or 4 times a week, she will play and her play is interrupted by frequent, brief outbursts of screaming and or crying. This is intermittent but she is clearly in pain.

6. Various rashes (face, hands, belly, tush) - photo documented

7. Horrible, loose bms with other descriptors I will leave out. Those who know will know. Sometimes stringy like the inside of a pumpkin or has mucous.

8. Frequent paci sucking or drinking and grazing. Will drink up to 80+ ounces a day if you let her.

9. Frequent bloating and gas

10. Sometimes when she is eating she will have moments when she cries out.

11. Constant runny nose (rhinitis)

12. Lifts shirts, puts hand on tummy and tell you it hurts

13. Sometimes she will take a few bites of food and gag or cry and then refuses food.


Other things the doctor noted:

1. She always has fluid in the ear and is on the verge of an ear infection or has an ear infection

2. Red, raw throat

3. Low iron

4. Eats 24/7 but has only gained 1 lb. in the past 6 months (She has been 22 lbs and a few ounces since around 12 months, today she was 23 lbs and 1 ounce). She has gone from being in the 95th percentile to the 20th for weight and the 35th for height. Head size is pretty consistent. On 8/24 she was back down to 22lbs. even


Doctors Appointments and Testing:

5/28 Stool samples were negative for bacteria and parasites.


6/2 Allergist update: Skin prick tests were negative. Allergist said a frank food allergy is different then a gi food allergy (or food intolerance). Sent us back to gi specialist.


Did a gluten food challenge for 2 weeks. Symptoms increased significantly during this time period.

Daycare provider mentioned she no longer slept at nap time, lots of moaning and gagging in her sleep.

More rashes appeared. Did not play during the day.


6/11 - Blood draw, stopped consuming gluten again.


7/8 - Still red, raw throat. Now skipping about a meal every 3rd day. Daycare has even noticed a couple of skipped meals. Sometimes sleeps restlessly/fitfully at naptime - always at nightime. Wakes up coughing/gagging. On maximum dose of prevacid. Ped wants us to add children's zyrtec or clairitin to her arsenal. Doctor also ordered a swallow study to see if she is aspirating as doctor witnessed her coughing while drinking out of sippy cup. I reminded doctor that one of my complaints is that she coughs almost every time she drinks, and often when she eats. Weight down slightly. Dr. again mentioned she felt strongly that gi specialist needed to test her for EE. Next gi appointment is 7/23


8/17 - Swallow study, all clear and good


8/24 - Upper Endoscopy and Flexible Siegmodoscopy

Told that day there was blood in her stomach and small intestines, inflammation and nodules up colon - indicative of food allergies


8/30 - Told that biopsies showed she was negative for Celiac and that her Esophagus was clear of EE (phone call with Dr.) Dr. wants to put her on respitol or something - an antihistamine like Benadryl - to stimulate her appetite and help her sleep. We are requesting copies of her records and exploring our next options - a second opinion? another allergist? something other than gi - perhaps autoimmune? just throw our hands up and accept that this is her life and carry on as we have been?



Through trial and error we know that she can't eat:

Dairy

Wheat/Gluten

Soy

Corn

Tomatoes

Oranges

Carrots



Eating Issues - a snapshot in the days of Scout

2 times on vacation, cried through lunch and would not eat

Friday 7/2 - would not eat breakfast

Sunday 7/4 - would not eat dinner

Wednesday 7/7 - would not eat dinner, indicating pain

Thursday 7/8 - did not eat lunch or dinner, indicating pain

8/12 - Threw up approximately 30 minutes after dinner

8/21 - threw up breakfast, cried in car (an abrupt change in behavior, rode rest of way with head turned to side, indicating pain)

8/22 - playing and had abrupt change in behavior laying head on ground and crying, ate green beans at dinner and asked for seconds. After 2 more green beans she refused anymore pushing bowl away and sitting in chair with head turned to side and back arched.

8/28 - Told me stomache hurt

8/29 - threw up breakfast, developed rash all on stomach and back as day progressed

9/13-17 - days of pain, daycare workers said she was whiny and needed a lot of consoling, didn't eat dinner 2 nights in a row

You can see pictures of her rashes at this link:

Read more: http://heal-thyself.ning.com/profile...#ixzz0zuhUYkP8

[mamafish9]

Karen, remind us - what nutrients/supps have you tried with her? B12 and minerals would be the ones I'd want to try first.

Have you tried enzymes? Pancreatic enzymes were enormously helpful for my son.

On her stool samples, what did her good gut flora look like?

[rileyscoutmom]

Supplements: Probiotics, Vit D, CLO, Brainchild Nutritionals Minerals and Brain Child Nutritionals Vitamins

Um, they didn't say anything in the stool sample about good bacteria. They just said they all came back "negative".

I bought when she was little some digestive enzymes that they sold at Whole Foods. But it said for kids 3 and up and I was afraid to try them with her.

We just got a $700.00 for the endoscope/colonoscopy that told us nothing. When I can - and hopefully soon - I am going to send out for Igg testing.

We did a hair test around 9 months ago and she had High levels of Cadnium and low levels of Calcium. Those were the most notable things. I would have to go dig it out again to see what it said. But really, I think we need to do a retest at this point. And I guess it was the wrong kind of hair test.

Her skin prick test was negative but they said her insides had typical findings of kids with food allergies.

Karen

[lil_miss_understood]

remind me, are you food journaling? I hate to ask but you know that neocate is ncorn right? nak so gtg

[rileyscoutmom]

what about elecare? I am pretty sure that the corn is why even on nothing but neocate she was still having such strong reactions.

I have attempted to food journal but am not currently doing so because I got tired and just lost control of everything. We are seriously thinking about my quitting my job just so we can help figure this out. They are great about it at daycare. But then I did find out that they were giving her some days canned fruit which had HCFS in it - they only asked about it because they were concerned about the sugar!!!! They didn't connect HFCS with Corn. But even this week without any of that kind of stuff she still had 4 really really bad days.

[lil_miss_understood]

Originally Posted by rileyscoutmom

what about elecare? I am pretty sure that the corn is why even on nothing but neocate she was still having such strong reactions.

I have attempted to food journal but am not currently doing so because I got tired and just lost control of everything. We are seriously thinking about my quitting my job just so we can help figure this out. They are great about it at daycare. But then I did find out that they were giving her some days canned fruit which had HCFS in it - they only asked about it because they were concerned about the sugar!!!! They didn't connect HFCS with Corn. But even this week without any of that kind of stuff she still had 4 really really bad days.

I have heard from some moms that their kid(s) did better on Elecare than Neocate (although I've also heard the opposite). I think that it might be worth a try if she's never been on it.

[rhesp1212]

Is she still on the Neocate?? My son reacted horribly to neocate for multiple reasons...the corn, canola oil and coconut oils in it. He reacts to all three of those pretty severely. So, neocate and the like were just awful for him! I believe elecare is also corn based. The hard part is that dr's will tell you that the proteins are broken down completely into amino acids and kids "shouldn't" react to it. Obviously not always!! If she is eating a decent amount of solids, I would stop the neocate if you're still giving it and see if you see any improvement over a week or so. It's possible that she may do better off of it than on it.

[mamafish9]

I think trying a few days off the neocate is a fab idea if you can swing the calories - it has corn, soy, and coconut ingredients - and the first two are in the top 4 food intolerances (and you think she reacts to corn & soy, right?). Like PP said, docs think kids only react to proteins, but intolerances can be to any part of the food. If I fed my DS corn syrup every day (first ingredient in neocate), he'd be a mess.

You've got a lot of the nutrients covered. I have some other ideas, but I'm thinking the no-neocate trial screams as the first thing to try.

If that works, you could try coconut milk, as a possible alternative - you could use it as the base for a nice smoothie (get one without any additives, to avoid corn derived preservatives). Lots of good fats.

[lil_miss_understood]

I am always hesitant to suggest going off of formula since I don't know the situation intimately, but yes, I completely agree with both Rhesp and Deb on trying that, assuming that you think you can manage to meet her calorie needs in another manner.

[rhesp1212]

If the Neocate is the trigger, being off it will help her tummy feel better and she will probably eat more of the other foods too!! It's worth a try anyways!

[chlobo]

Just going to throw this out there. I agree with the food trial

Also, are you able to do chiropractic care. The chiro we see said that ultimately you want to break the cycle and working on the spine while eliminating allergens can help sometimes.

[rileyscoutmom]

To clarify, she was on Neocate until the age of 1. She has been off of neocate for 10 months. I was thinking of doing either Neocate Splash (or is it Junior) or the Elecare to supplement nutrition.

We saw a chrio but have not been seeing one recently. I can look into doing that again.

Karen

[mamafish9]

Oops, LOL!

In that case, have you tried a rotation diet? Where you only eat a food every 4 days? That way, you might get some more guidance on the foods that are still bothering her.

[rhesp1212]

It's EO28 Splash made by Neocate (they come in juice boxes)....but, if you think she has a corn sensativity I would avoid it like the plague since it's corn syrup solid based. Neocate also has a toddler stage "solids" food available that my dr. was going to recommend to us until he reacted so badly to the EO28 splash. There is also a Neocate Junior that comes in vanilla, fruit and chocolate flavors I believe.

The splash is horribly expensive....about $150 a case. You might want to see if your dr. can hook you up with a dietician or something to get some samples of it to try. Warning....the tropical punch one tastes like grapefruit! The grape one is probably your best bet for flavor if you're going to try it.

[lil_miss_understood]

Ok, so to clarify then, she is eating everything except for the 7 things you first posted?
Could you run us through a "typical" day of food/drink for her?

[rileyscoutmom]

This was yesterday:

Breakfast: Hashbrown, Sausage, Water

AM Snack: Rice chex

Lunch: Pork chops, Brown Rice, Peas

Dinner: Apple, Raisins, Rice Chex, Coconut Milk (just a couple of sips)

This was last night:

7:30 lay down in bed to and read, she starts crying and says her tummy hurts. She cries on and off for an hour and a half. At one point she is pinching/hitting her tummy.

She falls asleep around 9 and sleeps for 5 hours. She then wakes up and keeps doing what I call the periodic reflux cough. This goes on for about 45 minutes. Then she falls back asleep.

20 minutes later she is passing bad gas in her sleep. This goes on for like 30 minutes.

She falls back asleep until 6, when she starts waking up again with the reflux coughing.

Note: She is not a good dinner eater. She never eats very much dinner and I assume it is because by this late in the day her tummy has already started a low degree "humming" of hurt.

[ASusan]

s to you and your DD.

Did you make the sausage yourself or is it "safe" sausage? I thought (some/most?) commercial sausages had dairy (as a starter?) in it?

Did someone up-thread mention salacylites? Your DD cannot do tomatoes, and both tomatoes and apples are high in sals.

[kjbrown92]

Could you make stickers out of colored sticker dots where the diffrent colors were hurts a little, hurts medium, hurts a lot, doesn't hurt at all. And she could do her own sticker chart at different times of the day - like waking up, after breakfast, after lunch, after dinner, bedtime? And start a food journal again (all ingredients listed) and see if you can correlate triggers? Even if you are keeping the food journal on here, maybe some of us would see something that you don't. Just looking at your list, I'm thinking of my kids (one couldn't do rice, apples, or potatoes) so any of those is a potential trigger. Raisins would be a salicylate too, if that's a problem. I think a craniopath/osteopath would be even better than a chiro, if you could find one that does nutritional as well as body work.

[rileyscoutmom]

So they inject gluten into chicken and use dairy in sausage? No wonder all of this is so hard. We live a little over an hour away from Whole Foods so it is not convenient (nor affordable) for weekly grocery shopping.

So I went and looked at the list of sals and there were a lot on there she eats: avocado, almonds (not often) apples, blueberries, brococoli, grapes, raisins, raspberries, strawberries, walnuts (not often)

Avocado and apples in particular she will eat a couple of times a week. I will have to look and see if there is a correlation there with the sals.

As for the pork, I cooked it with just black pepper and a little bit of garlic. I am not that good of a cook

Karen

[lil_miss_understood]

Originally Posted by ASusan

s to you and your DD.

Did you make the sausage yourself or is it "safe" sausage? I thought (some/most?) commercial sausages had dairy (as a starter?) in it?

Did someone up-thread mention salacylites? Your DD cannot do tomatoes, and both tomatoes and apples are high in sals.

in addition to the dairy concern, I'm curious about the corn status of both the hash brown and sausage.
I hope you don't take any of this as us being hypercritical, Karen. We all know that you're an awesome mom and that you're doing everything you can for Scout. I think all of us have, at some point, been using a product then checked it again and had an "Oh no!" moment.

eta: Doing a quick search, the only corn free sausage I'm finding is Shelton's.

eta: Also, if you aren't already aware, black pepper and paprika (most spices actually) can be a source of gluten contamination.