Posted By Posting
Sep 14, 2010
dcd
Finally, some answers.
I took Kylie in for allergy testing at the hospital yesterday. This was one of our last stops before the dreaded upper GI testing we finally scheduled for next week. I know she has a milk protein allergy and considered it possible she also has a corn and/or pet allergy...but really thought more than one allergy was a stretch.

Turns out, she is a very sensitive baby. They tested for 74 things. She is "severely" allergic to 22 different things; mildly allergic to many others. She is allergic to 5 things in the "trees" category, 1 in "weeds", 8 in "molds", 2 in "environmentals", 2 in "smuts and rusts", and 5 in "foods".

Of the foods, milk and corn are in her Nutramigen formula. No wonder she is still reacting to it - the milk is broken down, but it still has the corn. I'm kicking myself for not going with the Alimentum ready-to-feed, which has tapioca solids vs. corn syrup solids, from the beginning. We have now switched her to the Alimentum RTF.

The doctor had us do a scratch test with the Alimentum at home last night and she didn't react, so we are HOPING she will be able to tolerate it. If not, she will need to be on the Neocate which is - what? $600/month? Insurance won't cover it even with medical necessity and we don't qualify for WIC. I guess I would need to check in to whether there are any assistance programs through the state. Anyone know anything about this? We are in Texas. But like I said, we are HOPING hoping hoping she will be able to tolerate the Alimentum and we won't have to go the Neocate route.

Of the environmentals, one is...dun dun dun...dog. She's not allergic to cats, go figure. Our (indoor) Lab will have to go. We are sad, but it is what it is.

We are hopeful that changing the formula and getting rid of the dog will help a lot. We're hoping the other stuff can be managed by the Childrens Zyrtec and nasal sprays. No exaggeration, I left the appointment yesterday with 10 prescriptions. We don't have to get them all filled immediately, but the doctor wanted us to have them on hand if she starts having other problems. Particularly with her breathing. She is at a high risk of developing asthma because of all of the allergies. I am intimidated/overwhelmed by this as I know nothing about asthma, but I suppose I am about to become an expert. We will do everything we can to head off asthma to the extent possible.

The doctor said that all her symptoms - the disturbed sleep, fussy feedings, eye rash, constant spit up, nighttime cough, and nighttime congestion - are probably allergy related. Of course, sometimes she may just have a regular old cold. But we now know she doesn't have reflux. Which explains why she has not responded to the Prevacid - even with Buffer Babies and at 27 mg/day! We took her off it immediately and I am going to cancel the UGI test!

The doctor also said that scratch testing is pretty accurate. In babies her age there can be false positives but no false negatives. We were instructed to take her off all solid foods and just do formula and rice cereal for the next 6 weeks. In 6 weeks we'll go back and bring purees of several of the foods we want to give her. They will do a scratch test with these foods and if she doesn't react we'll be able to add them back in one at a time.

The doctor said there's a good chance she'll outgrow the food allergies but it's less likely she'll outgrow the environmental stuff.

Our immediate hurdle will be getting Kylie to drink the Alimentum. She hates it, even more than she did the Nutramigen when we first introduced it. Last night she completely refused to drink her bedtime bottle at 6:30. She woke up at 8:30, starving, but still refused to eat. She finally woke up hungry enough to eat at 10 and took 6 oz. At 4 a.m. she woke up again and took another 6 oz. Thank God! I know she is going to give the daycare girls a hard time with her daytime bottles this week, but I'm hopeful we can get her used to it in a few days. I sent the girls a box of chocolate-covered strawberries this morning with a thank you note. They really bear with us through everything and are so good with her. We are lucky.

I know we have a lot of learning and adjusting ahead of us, and that life won't always be easy for Kylie with all these allergies. I wish she wasn't allergic to anything, but mostly I'm just thankful to finally have some concrete answers. The worst is knowing something is very wrong with your baby but not knowing what it is. Feeling helpless is the worst. And allergies are better than where my mind was starting to go with all the GI possibilities... I feel like now we can finally help her and she is going to start feeling better.

I want to note that Kylie's milk protein allergy is pretty bad - but she never had blood in her stool or a diaper rash or diarrhea, which I know are some of the most common signs. Also, even with 22 severe allergies, we've not noticed any problems with her breathing other than congestion and cough - but these are only at night and the cough is only once to a few times a night...it isn't persistent or wracking. And she hasn't ever had a hard time catching her breath or anything like that. She doesn't have itchy or watery eyes. She's never had hives and doesn't get a rash from touching the dog. She doesn't sneeze a lot. And she has always been in the 50th percentile for height/weight even with all the spit up.

Finally, she's a very very happy baby. She is smiley and social and loves to play even when she's been up 10 times the night before. Because of this, I had a hard time getting anyone to take me seriously and have had to figure this out on my own with little help. Even with the supportive family and friends I could sometimes tell they were rolling their eyes inside, thinking I'm being obsessive/crazy/overbearing. Even my own husband has been skeptical many times and commented that maybe she just needs to "grow out of" all this! But a mom knows when something is not right with her baby.

Right now we're confident the allergies are the root of her problems, but we could be wrong. For now we are going to enjoy the fact that we have these answers, even if we find out later there are still more questions. I am praying she will be feeling much better very soon.

Sep 14, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
(((HUGS)))

You can buy Alimentum from Ebay WAY cheaper than in the store. We did this alot!!!! You can also buy coupons for it on Ebay as well which will save you money too!!!

Also, talk to your Ped. Ours was more than willing to give us ALL of the Alimentum samples on the days that the sample people dropped them off. One time I picked up 26 samples containers at one time!!! Saved us hundreds of dollars.

Jedd was the only child in the practice on Alimentum so it was going to go to waste!!! It's the powder but at least it's something and it's FREE!!! We used to mix a whole days worth at one time in the blender and put a big jug in the fridge. Made it much easier.

Even if we used strictly RFT we still had to have the powder to make the calorie content higher per Jedd's Cardiologist.

Also, have you considered a scope yet?? Right now would be the perfect time to get one done.....before switching to another formula. That way you can rule out EE.

Sep 14, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Wowza!! Huge hugs to you! I am sure your head is realing but to finally have answers and a game plan is huge. Way to keep pushing. Allergists are amazing people. In 10 minutes with one we figured out that Ryan was allergic to Motrin. That was the source of the recurrent canker sores on his throat... not a virus.

There are sites like this for kids with allergies. I suggest finding one so you can share ideas.

Best of luck on your journey.

Sep 14, 2010
dcd
Thank you ladies! And thank you...I will certainly consider a scope to rule out EE, will talk to my doctor about samples, and will find a support group for parents of kids with allergies.

ps. In my note above I meant the doctor said there can be false NEGATIVES, but NOT false POSITIVES. Mistyped.

Sep 14, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I think this is the site alot of families use when they have multiple food allergies.

http://www.kidswithfoodallergies.org/?gclid=COnikJHMh6QCFRv4iAodAW6HGg

Sep 14, 2010
kavyamom
So glad that you have some answers and I sure hope that going elemental or the Alimentum route helps Kylie. BTW did they do both scratch testing and RAST (blood testing) for each of the things tested? How did they correlate? How did K handle the scratch test? Do you know the iGE value of the milk allergy? Kavya's was 2.1 and I was told that it is a moderate allergy to milk (the doc said something like 5 or 6 would be severe). We are going to try the Neocate tomorrow. First I have to hope that Kavya will drink it! Yes, Kidswithfoodallergies.org is a good site and I am a member but just haven't had the time to look at it much beyond registration!
Sep 15, 2010
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Trust me, I can relate to everything you posted here & more. Just for the record, Neocate is worth every penny if you need to go that route. We fooled around with all the other "hypoallergenic" formulas - they didn't help nearly as much. We have all the environmental stuff too (plus EE). If you need support, I highly recommend kidswithfoodallergies.org. See you there? El
Sep 15, 2010
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
I'm sorry I don't know how old your daughter is...but may I add that allergy testing is SUPER wonky with these little ones...my son tested so high for peanuts on RAST and scratch testing that they sent him home with an allergy pen...he eats peanuts ALL the time...seriously...he also tested positive for cats and dogs...he tested positive for almost EVERYTHING...turns out he's super sensetive, but NONE of that was making him puke...it was just stupid old reflux. Time was our best friend...he still lives in a hairy house with a big lab, a cat and lots of peanuts...but he stopped puking... I beg of you, before you get rid of a dog that is not only a member of your family, but trusts you implicitly, TEST first...have your dog stay with a friend for a week or two...steam clean your house from top to bottom...THEN see if it improves...we did this by going on vacation....Mexico, clean room every day, no pets...and he puked himself silly. We knew the animal wasn't the issue. If I'm wrong and your lab is the source of the problem, well, that's a bridge you can cross later, but seriously...test first... they told us all the same things that they told you about your daughter...Zyrtec, a bunch of creams and a nasal spray...astham fears, nebulizers...and now at 3, he's relatively normal...his skin still reacts to LOTS of things, but it's just because he's super sensitive...Z's eyes were red from day one...excema everywhere...runny nose...super puking...he had it all. but it wasn't allergies doing him in. Prevacid wont stop any of that either, but if it IS reflux...the prevacid will save her esophagus and her teeth...and keep her more comfortable...I wouldn't cancel the UGI. Anyway, just my opinion...but I hate to see a dog leave a family if your daughter is at all like my son... GOOD LUCK!
Sep 15, 2010
kavyamom
zach's mom, that is interesting because Kavya's skin is also super sensitive and for kids like this I really wonder how accurate the scratch test is. How do they differentiate between an allergic reaction to the allergen and just a sensitive reaction of the skin to anything foreign?
Sep 16, 2010
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
They usually test for several things at one time & they have one spot that is just histamine????- like a test spot to see if it is working correctly. My son tested positive to eggs, dairy, peanuts (as far as the foods) and the bloodwork (RAST) was consistant with that. He was tested at Children's Hospital of Philadelphia.
Sep 16, 2010
dcd
Hi guys,

Things are going so well right now! Kylie has only been on the Alimentum for 2 days but she's doing amazing so far. We've already seen such a change. I hope she will continue to tolerate it. I'm thinking the hydrolized milk in the Nutramigen was ok, but she was still reacting to the corn syrup solids (as she is allergic to corn). Because she's done a 180 on the Alimentum.

Since she finally drank it that first night we haven't had any problems. She sucks down her bottles - no more hour-long feeding sessions, no more crying, no more having to switch between the paci and the bottle. She just drains them! I think now that that Nutramigen must've been giving her stomach pain as she was drinking it. [This thought makes me super sad :(] She now latches on to the nipple like a normal baby. With the other formulas, she'd developed a habit of halfway latching on and letting a lot of the milk drain out of the corner of her mouth as she was drinking. She'd also developed a habit of doing this strange Sandifers-type arm twitching thing every time she ate. That has stopped too. She has already increased her daily intake by 1-2 bottles - and it's only been 2 days!!! I definitely believe she was reacting to the corn.

Also - our test was like Blueleopard's. At the hospital, and they did a histamine prick to establish a baseline by which to measure the other reactions. The allergic reactions were graded with two numbers - the first being the size of the welt and the second being the degree of redness surrounding the welt. So, for instance, her milk protein allergy is a 4-10 (same as dog). Her corn allergy is a 3-5. She is most allergic to cockroaches (gross!) at 5-5. She tested "severely allergic" to 22 of the 74 things they checked for. They defined "severely allergic" as anything 3-5 or above, based on her histamine prick. Also, our doctor does not do the blood testing in babies her age (7 months) - just the scratch test.

As far as how do you differentiate between regular old sensitive baby skin and the allergy tests, they used a clear plastic ruler-type thing to measure the welts. But even to my untrained eye, I could tell the difference between the allergic reactions and the ones that did not react. The allergic reactions were very distinct mosquito-like welts, whereas the others just looked irritated by the scratch.

Also, they had us do our own scratch test at home with the Alimentum that night. I think we got a little overzealous trying to make sure we did it right and scratched her arm a little more than we needed to. It swelled a bit and got red, but there was no welt - you can definitely tell the difference between the allergies and nonallergies.

The doctor told me that there can be false negatives but no false positives. That's at odds with Vigilantmom's experience. But for us, I think the allergy testing has been the key. Kylie is already sleeping so much better just on the Alimentum and with the Children's Zyrtec. The past three nights she's only woken up to eat and then fussed one other time. Her rash is starting to go away with the topical medicine they gave us. And I think once we get our dog out of the house things will improve even more.

Speaking of our dog - that actually has a happy ending. Boo has been with us for five years and is a boisterous indoor Lab that sheds like crazy. The doctor believes a lot of Kylie's eye rash, congestion, cough, etc. can be attributed to the dog. He said we don't actually have to get rid of her; she could become an outdoor dog or stay in only one part of the house. Both of these options are unrealistic (Texas summers are too hot for outdoor and she sheds so much there's no way to keep it contained to one area.)

So she's going to go live in DC with my in-laws. She probably loves my MIL more than she loves us! B/c my MIL always treated her like a human grandchild before she actually had any human grandchildren...and after we started having babies she continued to shower Boo with the treats, toys, and marathon fetch sessions when she visited b/c Boo expects it and she loves her. Boo will actually be happier in DC as she's been a bit neglected since Baby came along. She'll get more attention and will be spoiled. Also my neice/nephew live up there and they love dogs and are NOT allergic. She will be very well cared-for. Plus, we'll still get to see her several times a year. The doctor said as long as Kylie takes her antihistamine when we visit and it's a limited exposure, her dog allergy shouldn't be a problem.

Vigilantmom, I feel like I need to clarify - we do not think the reflux/spitting up are caused by the dog allergy. Those things and other digestive upsets are attributed to the food allergies (milk/corn ingested in her formula). The dog, along with all the molds, trees, weeds, smuts/rusts, and other environmentals she's allergic to are probably responsible for the coughing, congestion, rash, and frequent night waking (actually, the disturbed sleep is probably caused by all the allergies, including the foods, working together). So I don't expect Kylie's throwing up to improve when Boo moves out, but I do expect the other things to get better.

I did cancel the UGI. We can always reschedule if things don't continue to improve. The doctor does want her to continue on the Prevacid for a while. Based on her symptoms he thinks she has a lot of allergies and a little bit of reflux. I decreased her Prevacid dosing to 15 mg/day (still using BB). Once we have everything pretty controlled we'll try taking her off it to see what happens. I'm not convinced she really has reflux separate from her allergies...the daycare girls say she's barely spit up the past two days on the Alimentum.

I also talked to the doctor about EE and whether we should do a scope. They said if she continues to have problems even after all the changes and some time, it's something to consider. But there's no reason to think she has it right now so we'll wait and see. After all of your encouragement, I think I would feel ok about doing the scope if it did come to that.

But right now we're feeling optimistic! We've just noticed such a change in only a couple days. We're hoping things will continue to improve. I will definitely check out kidswithfoodallergies.com - thanks for sending me the site!

Sep 16, 2010
dcd
ps. Kavyamom - Kylie did really well with the scratch test. The first 3 or 4 didn't bother her. Then when she realized what they were doing (and that we were trying to hold her still) she got upset and cried really loud. It was over in 45 seconds to a minute probably, but it was a LONG 45 seconds to a minute!!! As soon as they did the last one I picked her up and she stopped crying. I really don't think it hurt her that bad. The rest of the appointment she was great. Just trying to crawl around and stick everything in her mouth. She totally charmed all the nurses and they've been such a big help to us this week with answering questions and giving us every sample they can come up with!
Sep 16, 2010
kavyamom
Dcd, wow so glad that Kylie is sleeping better!!! I'm so happy for you guys. It is amazing that just 2 days of Alimentum RTF has made such a change. I wonder if Kavya is allergic to corn as well...she has never been tested for it. Her allergy appt. is only on Oct 11th so until then I am just trying different things. I am tempted to try the Alimentum RTF now! Problem is she has become such a picky eater that I am sure she wouldn't drink it. Even the Neocate unflavored has corn as the first ingredient.
Sep 16, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Ya hoo!!!!!! I am doing the happy dance for you! I am so glad she is drinking the formula and is a new little lady!! That is wonderful! I know it is really expensive but worth every penny when you see those kind of results. Ask your doc and GI for all the free samples they are willing to give you.

I think you have Zach's mom and me mixed up. Zach is the puker with super sensitive skin. Ryan was a puker/swallower. Gross.. I know. Only thing he was allergic to was suspension Motrin. Crazy.. I know. No scratch test needed. The gynormous cancer sores on his tonsils every time I gave it to him. Oooops!!! No animals in my house unless you count Squisy the Fishy. That is far as I will go for a pet in the house. I was a farm kid growing up. Hee hee.

Dont forget your vents and duct work when you clean your house after your lab moves out. A good duct cleaning is about $120. We never had a dog but the previous owners that lived here for only 9 months had a lab. I about fell over when I saw all the black hair they pulled out of the air ducts... not to mention the drywall dust, saw dust, nails, etc. I get it done every 3 yrs now.

Here's to your little girl turning into a little piggy!

Sep 17, 2010
dcd
Hi Karen - You're right, I did get you and Zack'smom mixed up! I do know you and your boys individually, I just mistyped. :) I am with you on the duct cleaning. We have all tile in our house but I'm dropping my area rugs off to be cleaned, am getting a cleaning team in to scrub the house top to bottom, and am hiring someone to do the ducts. I'm kind of anal. I shudder to think of all the dog hair they're going to come up with!

Kavyamom, I wouldn't be surprised if Kavya also has a corn allergy. From what I have read it's not all that uncommon in kids/babies. Especially those with multiple food allergies. As far as the Neocate, it does have corn - but remember it's completely elemental so she shouldn't react to the corn just like she shouldn't react to the milk. (I had the same thought about the corn in the Neocate as you did and the allergist had to remind me about it all being broken down.) Ugh, I'm sorry you're having such a tough time feeding Kavya lately. That is so frustrating and at her age, I would guess it's hard to know if she's just being picky or if something is bothering her. If you are giving her something with corn in it (other than the Neocate) maybe take her off it and see how she does for a few days?

Thank you both for your encouragement and for celebrating with us!! It's so good to see her sleep. We still have a ways to go. I'm hoping the cough and congestion will improve over the next couple weeks and I'm worried about her developing asthma. And she's still spitting up quite a bit - nothing like before - but that makes me nervous that she might really need the Neocate. But we'll take it one day at a time!

Check with your
doctor first!