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Jun 10, 2009
johnniesnewmommy
Allergy results just in
Hey The allergy tests came back for Johnnie. He was at the top of the charts for milk, egg, peanut and dog dander and in the moderate range for soy. They did a very limited general testing- so there are a million things they didnt test for. They did give me a rx for an epipen to keep with us at all times just in case. So now im even more concerned over what im going to feed him. Any suggestions?
Jun 11, 2009
mommato3
Is Johnnie in Early Intervention? Every state has one and they are wonderful. They send speech and physical therapists as well as nutritionists to our house. Our nutritionist is wonderful. My oldest son had severe food allergies to malt, oats, yeast, dairy, eggs, rice, tomatoes, green beans. It was quite overwhelming to feed him. He outgrew all of his allergies now at age 5 except we have to still carry the epipen for shellfish and some different types of beans. There are some great websites that I will try to look up later. I know it is overwhelming now but you will find things to feed him and it actually does get better as you get use to it. So the main thing is to make sure it is dairy and soy free. You can cook with rice milk as well. You will just become an avid label ingredient reader! I will try to find some of the websites i use to use. Big hugs b/c i know how overwhelming it is especially when you are already concerned about what they WILL eat now you have to be concerned about WHAT they will eat!
Jun 11, 2009
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.
Hi, my son, who is now 3, is allergic to the same things, plus has EE & asthma. How old is your child. I will say that Neocate One Plus (or Junior) has been a life saver in our case. His behavior improved, skin cleared, symptoms reduced, etc., plus you are getting them the nutrition they really need at this point in their life. Rice milk, etc. does not cut it. I wanted to recommend the site kidswithfoodallergies.org. There is support, information, a database of receipes, etc. It will be easier in the long run, now that you know what was wrong. Good Luck. Ellen
Jun 11, 2009
mommy2k
I don't really have any suggestions but label read, label read. It's good to know what's causing him problems and maybe now he can start feeling better. It sounds challenging but you can do it. It'll take some adjustment. I wish the best. I would definitely take advantage of the free services that are out there like mommato3 said. Good luck
Jun 11, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
Well, at least you have some more answers. I think it is a huge load off when at least you know what is going on. THese things sound so overwhelming when you first start but just take it slow and before you know it, it will all be second nature.
Jun 11, 2009
mommato3
It all depends on how he is doing with solids and table foods. My son at one year old was eating real well so instead of transitioning him to whole milk like others were we transitioned him to soy milk (he was allergic to rice). It Is forified with everything whole milk has in in with the exception of the fat. My son was and is still in the 97th percentile for height and weight. We did not have to do formula. He was able to eat like a normal child it just required a lot more creativity on my part. Like I said he remained at the 97th percentile and still is to this day. Now if he is diagnosed with EE or has trouble still with weight gain b/c of very little intake of solids that is a different story. Once we eliminated those foods though he was a different child no throwing up, no skin rashes, improved behavior. We became very creative at making sure he received the fat he needed but as long as he willl eat a variety of foods don't panic thinking your son will have to drink formula. I have some great recipes for cupcakes that are dairy, egg free as well as many other recipes I found online.. I read labels and found many things my son could eat. Some brands are different than others. I could usually find one brand of things that my son could eat. It is VERY hard to do this but once you learn it will get easier. Life will also be easier as he will be healthier. I would cook some things like I normally would but if the recipe called for milk I would use soy milk or in your case rice milk. But if you are concerned about nutrition still you can always use the Neocate Junior, ect to get in the extra fat. I would however try to get a nutritionist. I didn't have one with my oldest boy. I researched everything on my own, but I have one with my baby and she is a life saver.
Jun 11, 2009
johnniesnewmommy
He eats very few real foods. He can eat a few of the stage 2 veggies and fruits. Anything with texture he gags and vomits. I have been trying to get him to eat regular green beans and he will start to put them in his mouth but then he spits it right out. I did go to the health food store today and found some baby biter biscuits that were all free of his allergens. We do have an appointment to see if he qualifies for early intervention but it's not for a few weeks still. I think then they will allow us some more help but until then im on my own. His weight is still at 4% but he has gained 2 lbs in the last couple months so I am thrilled. Most of that I am contributing to his night time feeds- he will take a bottle every 3 hours in his sleep and doesnt vomit at all. I am scared half to death that if I take him off his formula and try rice milk etc that he wont get the nutrition he needs. The neocate one - is it a by prescription formula???? I am so glad someone has a recipe for cupcakes- I was starting to think his first birthday cake was going to have to be a Jello one! LOL
Jun 12, 2009
mommato3
I am lucky my guy took to real food. In fact he loved. now I'm sure my baby will be the one on formula for years b/c he is like Johnny in that he won''t eat a lot of food without gagging, etc. But Holden is so aversive to the bottle that we are trying with the help of our feeding therapist and nutritionist to get him to take more solids and to use a straw bear cup. His formula is 26 calorie per oz. He sleep feeds his bottles. What formula is he on now? I know Elecare makes one for kids over 1. Early Intervention does take forever but once you are in, they are wonderful resources. I will pray Johnie gets in quickly . I made a dairy free birthdaycake for Landon that actually turned out pretty good. He wasn't allergic to soy though so I don't remember about that but with some research online I am sure you could find a dairy soy free recipe. I still haven't had time to look for the site that was helpful to me as it has been a couple of years but it was a forum and the moms posted lots of recipes.
Jun 12, 2009
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.
Yes, Neocate is a prescription formula. Just keep it in the back of your mind if the other things don't work out. Also, wanted to mention that Cherrybrook Farms sells an allergy-free box mix for making cupcakes/cake. This can be found at places like Acme/Shop-Rite. El
Jun 12, 2009
johnniesnewmommy
I will definitely be asking for a rx for the neocate 1 plus. I am hoping maybe his insurance will help pay for it if it is prescribed. I think the GI could prescribe it- I think the ped thinks I need to try to let him starve a little on table food versus another formula- but he can't lose any weight so I'm not willing to go backwards. We just started gaining some ground. Worse case scenario I will just keep giving him the nutramigen but try to do table foods at day and sleep feed formula for extra nutrition. Thanks for the suggestions for the birthday cake- I will definitely look into that. I may just make his own 1st birthday cake and another regular one for the rest of us- does that sound horrible?
Jun 13, 2009
mommato3
We had two cakes-one for him and one for us. Do you know it never bothered my son that he had to eat something different. I guess because he never knew the difference. I would make up a batch of dairy free cupcakes and freeze them and if we went to a birthday party, etc. I would take one of those. I also found some cookies, etc at Whole Foods that he could eat and I would take him for a "special treat". If he is that allergic to milk nutramigen still has milk proteins in it. Neocate and Elecare don't. I'm sure you know this though. You can usually fight and get insurance to pay for it. They will usually tell you no at first though. Yes, your GI and/or ped can write a script for it although for insurace it is more powerful coming from GI. Technically, you can order it without a prescription. You can go to Neocate's website or Elecare's website. I know Elecare has some resources of ways to get some help with the costs. I would bet Neocate would too. Good luck!
Jun 13, 2009
johnniesnewmommy
That would explain why he is so congested after drinking the nutramigen then. I just figured it was all reflux. I will call the gi on monday and see if they can get it switched.
Jun 13, 2009
mommato3
Bless your heart! It shouldn't be a problem getting it switched especially with his allergy tests. Alimentum and Nutramigen say hypoallergenic but there are still proteins b/c they are only partially broken down. Elecare and Neocate are totally hypoallergenic b/c they are amino acid based. Over time the small amount of milk protein in the nutrimigen and alimentum (in some kids if they are truly allergic) will build up and cause the reaction. Elecare comes in vanilla flavored or unflavored (we use this and add flavoring) and I'm not sure if Neocate comes in any more flavors but if he is close to a year old they may want to go ahead to Neocate Plus or they may want to try regular neocate or elecare to see how he does if it helps then when he turns one year they may try transitioning him. That is prob. the reason for the congestion after he eats. It is so crazy that food allergies mimick reflux so much. It can also be a combination of the two. I am surprised the ENT didn't mention that to you about his formula still having milk proteins in it. Big hugs! It is always one thing after another but once you get this allergy stuff figured out it will be much better.
Jun 13, 2009
johnniesnewmommy
the ENT didn't speak a lot of english so that would probably explain why he didn't mention it! LOL
Jun 18, 2009
araylee
The speech therapy for feeding can be FANTASTIC. My older DD is almost 4 and has been in therapy for almost a year. HUGE strides. She had what I know believe was undiagnosed reflux as a baby and has major food issues now. We are doing "food chaining"-you can read about it in a book if you want to try at home. If he's over 3 he won't qualify for EI but you CAN take him to a therapy center to get evaluated, sometimes for free. (call around!) If they see a need for services they can work with your pediatrician and a nutritionist to get your son the help he needs. Big hug, it does get better! Bianca
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