Allergy Testing – Questions.

[Anonymous]

I don’t post here often, but it seems as if Christian’s reflux is not entirely under control and I have some new questions. His ENT is seeing a lot of research that indicates reflux is a symptom often times of an underlying cause and most doctors are not working to find that underlying cause. So he sent him for allergy testing. Here is what we now know:

Last Thursday Christian had a blood test for allergies. The DR called with the results.
There were no official positives.
The negatives – which doesn’t mean negatives are as follows:
Milk, soy, fish, dust, dog, egg, wheat, peanut, cats, cockroaches.

His initial suggestion is to reduce the above items and then reintroduce slowly to see if his reflux/congestion symptomology decreases. His first start was definitely milk.

Problem: Christian is still 50% tube fed with a mixture of pediasure and ensure plus with duocal. Both items contain soy and milk.
GI: Claims there are no adequate calorie non dairy/soy formulas that will work for Christian’s growth requirement. He is requiring the ENT to forward his request to reduce milk/soy – and they will call me on Monday to discuss.

I KNOW that there has to be an option out there. Christian takes a rate of 48ml/hr over 8-9hrs. We have tried faster with no success and longer – he wakes screaming for us to take tubey off or won’t tolerate it running while awake. So he still gets 680 calories daily by tube and takes nearly 500 by mouth and is barely growing.

What suggestions do you wonderful women have – you gals are so AWESOME!!

Thanks.

[Anonymous]

Could you do neocate or ellacare with a calorie addative. I know there is something prescription they can put in b/c my aunt did it with my cousin bfore her heart surgery to beef her up.

We did 24 cal neocate when Owen had his ng tube at 30cc/hr for 10hrs.

If he’s getting 680 cals from g-tube that would be 28 oz over night of 24 cal neocate and that’s a whole lot. I think from your other post you said it ran at 40cc/hr???

That would only be like 320 cal for 10hrs so you would really have to beef it up somehow. I wonder how much of a calorie addative they can add? I know reg neocate is 20 cal/oz, we made it by a different formula and that made it 24cal/oz so I would think you could make it even stronger than that somehow??????

There is a neocate jr since he is 2, maybe that would be more appropriate. I just don’t know what the cal/oz is on that.

I don’t know I’m just really trying to think outloud for you. Neocate and Ellacare are the only two true “hypoallergenic” formulas that I know and I’m so new to all of this that’s the best I can do for you! Good luck!

[Anonymous]

Okay so I read your post and it’s 48cc/hr? So that means he’s getting about 16 oz overnight which means you would need something with about 42.5 cals/oz to get his requirement in during the night…… I don’t know, but maybe ask your pedi about a calorie addative????

By the way I hope I’m doing all the math correctly! Don’t laugh at me if I am way off, it’s been a few months since I went through all of the ng tube stuff so I’m a little rusty!

[Anonymous]

Well, now I just re-read that he only likes it on 8-9 hrs and my calculations were by 10hrs so you would be off a little. Man that’s tough in such a short time period. Could you do a little at nap time?? That would probably cause him to not take as many cals per mouth during the day though. Isn’t this sooooo frustrating sometimes!

[Anonymous]

Ok – so here is the math.

9 hours at 48ml/hr

Pediasure (30cal/oz) + 2TBSP Duocal (10cal/oz) = 40 cal /oz

Ensure Plus (45cal/oz) +2tbsp duocal (10cal/oz) = 55cal/oz

We use 8 oz each and then put it in the bag. So my math shows it is around 47.19 cal/oz when it is mixed all together. We run at least 450ml per night. So that is about 707calories by tube at night.

I hate math.

[Anonymous]

Erica – he eats a huge lunch during the day right before nap. Usually 2-4oz of milk, a couple of chicken nuggets, 4oz of applesauce. So I fear pumping anymore into him that quickly would cause the vomit cycle. He has a tiny tummy (hence the only 48/hr). He eats 3 meals and two full snacks per day – so I hate to take that from him so I can pump more through the tube. I REALLY love oral feeds and so does he. Much different than when he was a baby and had such oral aversions.

[Anonymous]

Yeah, infant formula is a lot less cal/oz. Is doucal the prescription stuff I was trying to describe??

I’m so sorry, I know how you want them to just be able to go with oral feeds and how much more at that age that they must want oral feeds and you certainly don’t want to discourage that!

And I certainly know how you don’t want to over fill the tummy. When we first started ng tube feeding overnight, I was cleaning up a lot of puke for a little 4 mo old tummy and my doc was always like “we’re only runnning at an oz per hr” and I just wanted to punch
him!

He also wanted me to do straight ng feedings and no orals and I just adamently refused! I was like you it was such a joy to see him take from a bottle I wasn’t going to ruin that!

Best of luck! But there certainly has to be something out there!

[Anonymous]

Has the allergist discussed possibly doing skin testing? I know that RAST (blood) testing tends toward false negatives, and skin testing tends toward false positives. So, if you do skin testing and it still comes up negative then there is a good chance that he really is negative. Of course, that only covers allergies, not intolerances. But… if it comes up positive then you could go to the GI and say that the allergic food has to be cut from his diet and ask him to be more creative in his solutions. I’m not sure, just kind of rambling. Sorry if it doesn’t help much.

[Anonymous]

It surprises me that your doc has him on Duocal but not Neocate. They are made by the same mfg. If you are tube feeding, the Neocate should be covered by your insurance also. Many kids who have reflux are allergic or intolerant to milk and soy and are on Neocate. You prob already knew this from reading these boards but I wonder if you should throw out Neocate to your doctor. Neocate is 24 calories if mixed correctly. We mix it so that Carson gets 28 calories. At one point we were on 32 calories but that constipated him.

[Anonymous]

also, none of the allergy testing would pick up intolerances. my son is intolerant to milk and soy protein and takes neocate. the doctor didnt do allergy testing bc she said it would prob show up negative, since his symptoms are of intolerance. i didnt want testing anyway. our insurance covers neocate.

[Anonymous]

Hi Laura!

I know this might sound dumb, but… does Christian still see a dietician/nutritionist? If so, could you ask her to help you to come up with a nutritionally/calorically comparable feed using neocate 1+, duocal, and whatever else you need to add. When we first started hypercaloric feeds for Hailey, we saw a dietician who had us concentrate the formula by adding more scoops, and then adding polycose on top of it. Good luck.

[Anonymous]

Update – the GI refuses to change his food from the pediasure/ensure plus to any other sort of formula until a skin test proves he has an allergy. The ENT who ordered the original allergy blood test is not happy and is supposed to call him today to explain the rationale.

We have an appt with an allergist/immunology on July 6. Our insurance is changing so we have to wait until after July1.

We are still working with a dietician. Once I get a formula plan from the doctor I can work with her to calculate a true goal. She is not too informative on formulas that are out there – she is more current with supplements.

I started reading food labels this weekend. He lives on goldfish, cereals, milkshakes, fruit chews, crackers/cheese, macnchz, graham crackers. I have NO idea what I am going to feed him when we have to eliminate all his favorites and staples.

[Anonymous]

This is a good link with milk/soy free foods. Some of the foods have soy lecitin but most kids can tolerate that along with soy oil – whihch is usually ok. I started with just a few foods from the list and added from there. As it is, Carson still only eats 7-10 foods total along with Neocate. The list is great as it is so hard to read every single label – this way it gives you something to start with. Some of the foods on the list have changed and when you read the label it will say that it contains milk or soy, but it is a good place to start.

https://www.infantreflux.org/forum/forum_posts.asp?TID=2718&a mp;PN=2

I am not so sure about the GI! A lot of these little ones here have intolerances which are not going to show up on a test. Trial and error is a great test! Do you have another in your area?

[Anonymous]

Laura,

I’m sorry that your GI and your allergist can’t decide on what’s best for Christian. I find it so hard when docs disagree- we’ve had that before as well, and finally I had to say “This is what I want to do, this is why, you guys can either try to work it out, or I’m going to have to go with the doctor whose opinion I value more on the subject”. I hope that they can figure things out. Do you even need the GI’s approval to change his formula/food, though? Is it b/c of the tube? I would think as his mother that would be your call, and that the dietician could help you come up with a balanced plan.

Good luck.

[Anonymous]

We are in the process of changing insurance companies – we lose our GI and have to go to a new one in a few weeks anyways – so I am hoping for a fresh opinion.

Yes the reason they are fighting is because of the g-tube. I believe most foods, especially to get them covered by insurance must have a script. Our ENT is not a specialist when it comes to enteral formulas. They are supposed to have a pow-wow tonight and I should hear something tomorrow – I hope. Then offshoot an email to the dietician.

Thanks for all your guidance

[Author]

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