Posted By Posting
Nov 19, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Jessicalynn and Ellen..anyother mom's with eosin. and allergies
Hi ladies,

I am taking matters into my own hands again and need some help here.

Jazzy has had the scratch test done for allergies, all came back Neg. they are not tesing for delayed reaction, as they say it's rare to have a Neg scratch test and have anything show up on delayed tests.

Any of your Lo test neg on the scratch but post. for the delayed reaction test? Do you avaoid feeding them the 8-10 most allergenic foods, or just what they are allergisc too? What sets off their colitis besides the foods that they allergic too?

Lastly, do your Lo's have normal days most of the time with flare ups, or are they pretty much suffering regularly?

Thanks for reading this.......Brenda :-)

Nov 19, 2008
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds

Brent has been on elemental formula since birth due to severe colitis, and elemental formula only and steroids a looong time, he still suffers daily, with nausea,retching,diarrhea, and in a ton of pain.He is on many other meds as well.In the past, everything he tried to eat made him worse.He actually developed EGID ON elemental diet only which is the treatment, he is an uncommon and confusing case lol. I am taking him to the CCED in Cincinnati per request of his GI

All Brent's testing cam back neg except milk.I am probably not much help, sorry. Have you tried her on formula only(neocate or elecare) yet? That would be my suggestion.

Nov 19, 2008
mommy2max&lucy
Patti, mom to Max (3/04) with EE and chronic sinus issues; Lucy (6/07) with reflux
Hi! Sorry to hear you are dealing with so much right now. Max was a disaster before we sorted out exactly what he could and could not tolerate. Max only tested positive to milk and eggs on skin prick testing. He has a ton of environmentals but those were the only two that he is positive for food-wise. However, he has EE and has several food triggers (chicken, turkey, soy, etc). He never has never tested positive for any of these using any test (SPT, blood, patch). Honestly, the only way we figured out his triggers was to eliminate all food. Then, we put him on Elecare for 8-10 weeks to heal him. It was unbelievable the difference after being healed. He was finally sleeping through the night, behaving better and just generally so much more peaceful. After this, we introduced one food at a time. It was usually pretty obvious within a week or so if the food was agreeing with him. If we saw him not sleeping well anymore or going crazy behavior-wise, we yanked the food and got him back to baseline before starting a new food. It was a long, tedious process but so worth it. He now has a fairly good choice of food options.
Nov 19, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
She absolutly refuses Neocate or elecare formula.....That's why her GI suggested Rice milk. I don't know though...the thought of stopping all solids is scary, since she is so underweight already. I was thinking of pulling all proteins and limiting grains, but keeping some fruits and veggies to see if this helps. Any of your Lo's flare up with Rice?
Nov 19, 2008
mommy2max&lucy
Patti, mom to Max (3/04) with EE and chronic sinus issues; Lucy (6/07) with reflux
I hate to say this, but rice was one of our son's worst. Eos docs docs will typically tell you to stop all grains...they are big culprits with eos disorders. Do you have access to a nutritionist? I really think you need the guidance of a nutritionist of you are going to stop most foods. Rice milk will not provide the calcium and other nutrients that are necessary. We use it now to cut down on the amount of formula Max wants...he is odd kid...he LOVES elecare and constantly wants it even though he only needs about 16 ounces a day. So, we use rice milk to give him an alternative to the elecare. In terms of fruits and veggies, our son did pretty well with most...but every kid is different. I would strongly suggest seeing a nutritionist. Hope this helps!
Nov 19, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Rice was Adriane's worst allergy. Of course, we knew that early one when we first tried rice cereal and she vomitted it almost immediately.

We did basically what Patti said on the pp. We eliminated everything except her formula for abour 3 months. She did fine weight wise and really didn't ask for food. We got the same results as Patti said. She was much happier. It was like a different child. We honestly thought she had a touchy personality. Come to find out she is very pleasant but when she was eating she didn't feel good. Her exzema has cleared up some. She isn't as uncomfortable as she used to be with her skin. Now she is on carrots. We are going to try another veggie this weekend, just trying to decide which one. She has been doing organic carrots steamed in their own pot, I don't use them for anything else. We still puree them because her guy can't break it down well enough still.

I sorry you are having to deal with all of this and you aren't getting much support from docs. I know how hard it can be. Keep trying. -Amanda

Nov 19, 2008
mommy2max&lucy
Patti, mom to Max (3/04) with EE and chronic sinus issues; Lucy (6/07) with reflux
I forgot to mention that it is probably a good idea to steam/cook all the fruits and veggies at first. Like the pp mentioned, uncooked fruits and veggies are hard for the gut to break down. You don't want to say a food is failed, if indeed it is only because it was raw. Max still has issues with raw carrots but does absolutely fine on cooked carrots. Finding safe food for kids with eos disorders is really an art more than a science.
Nov 19, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Thank you, what valuable info. I always suspected Rice milk, but my nutritionist says it's fine, so did the GI docs....But I always wondered... I steam all of her veggies (she just eats carrots and broccoli at the moment), but fruit would probably be a good idea since most of her fruit comes out of her undigested. The Dr said it was because of her not chewing, but I've cut it up into tiny pieces and still the same results.

mom2adriane%morgan, what is RCF?

mommy2max&lucy, does your LO tolerate any grains at all?

Jessicalynn, I can't beleive Brent still suffers the way he does poor baby. I am hoping that Cinncinatti will give you some hope. I am interested in hearing how your visit goes over there. Do you have an appoint. yet?

Nov 19, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Have u made it out to John Hopkins or anywhere else to see if they can help?

We have been on Ultracare for kids cherry banana flavor that is specially mixed for some time now. Dr. G had a nutritionist to make up a recipe so that if all Meggy does all day is drink juice, she is still nutritionally complete.

This has been the case most days with her. Still when she eats food, she refuses most anything for average of 3 days afterwards. It has not been easy at all, but it is important for me to give her whatever she needs no matter how hard.

She has gained some height and weight since being on Ultracare for kids. Prior to this, we had not seen any increase in size since February.

Ultracare for kids is a medical food and it is super pricey. U have to order ahead and make sure u don't run out because it is not easy to obtain locally. It also requires monitoring by a doc. and has a vitamin A. overdose warning on it. It is not nutritionally complete and would require a nutritionist to make up a recipe to give her everything she needs to grow and be healthy.

We are averaging about 1 container every 7-10 days at $42 a container. We then add oil, salt, sugar, water, all measurements given to us by the GI. We go with the cherry banana because it has the least corn. We also add phlexy-vits. This cost $42 a month. So, it is super pricey until I consider how much we were taking her to a physician prior. We used to average 2-3 doc. visits a week. Now we are seeing a doc. maybe every other week.

The best part of all of this is that during this past week we had 5 of 7 good days and one good night. It may not sound appealing, but for Meggy this has been a miracle.

I say all of this just to say consider your options. For skin prick test Meggy tested positive to soy and dairy. For the Rast Testing, she was positive for shellfish and pork. As far as journalling and keeping a food diary, I know that she is super sensitive to Gelatin, vanilla, dairy, soy, strawberry (although the nestle we used was recalled due to shards of metal being in it- I am just not willing to chance her reacting again because her reaction was pretty harsh.)

I am hoping our days will get much better and our nights too. Her pillow bed has also helped tremendously. Unlike the wedge and other forms of elevation, she mostly stays in place where I put her.

I am tired and need rest now, but feel free to email me if u have more questions.

Nov 20, 2008
mommy2max&lucy
Patti, mom to Max (3/04) with EE and chronic sinus issues; Lucy (6/07) with reflux
Hi! Max does tolerate all grains now. It took a good three years, but he is finally okay with everything. Surprisingly, wheat was the easiest for him. Of course, Max doesn't really follow the "traditional" path of passed foods for EE. He also passed beef very early...which is also usually not a good food for kids with eos. He never did well with lamb, turkey or chicken...supposedly the most hypo-allergenic meat groups.
Nov 20, 2008
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. Eric will have his patch testing done on Dec. 12th, so I'm not sure if we will find more foods to avoid then. Scratch/RAST testing showed 3 foods to definately avoid: peanuts, egg, dairy. We also avoid: soy, citrus, strawberries, tomatoe, fish, shellfish. I avoid these because I read they were allergenic & I don't want to start new allergies. I also avoid beef & corn because he showed reactions, even though he was negative on the tests. Symptoms were itching, diaper rash, wheezing, or eczema. I bet Children's Hospital will take him off wheat. Then we will officially be avoiding the top 8 allergenic foods. As far as his behavior, he has had far too many bad days in his short life. But, I have noticed that he seems happier lately (knock on wood). Maybe because he is about 4 mths. away from age 3 & just more aware of things. As long as he isn't sick, wheezing, constipated, having itchy eyes, and stays on his "safe" foods he is happy. I know it's a long list of variables, but since he did nothing but cry/whine for the first two years of his life, I'll take it. Hope this info. helps somehow. Ellen
Nov 20, 2008
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.
P.S. I think the advice about Neocate/Eldercare is great. And also, about introducing one new food per week after a while. These formulas have everything in them that a child needs to grow. Eric didn't grow/gain until he started supplementing with Neocate. Is there anyway you could mix some in with whatever she is taking until she gets used to it?
Nov 20, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
I'm going to give Neocate a shot again... You guys have been great.
Nov 20, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
RCF is a carbohydrate soy formula. Adriane has MSPI and an allergy to soy but it is all in the way the GI has us preparing it that makes it work for her. We have to add lactose and boil. Then we use lacteeze drops to break down the lactose. Then we have to let it sit in the fridge for at least an hour or more. It is a process but the alternative for her was IV feedings and as far as I was concerned that isn't an option. My family has bad kidney problems already without adding in what IV feedings can do to the kidneys! We are now able to add in a small amount of Neocate 1, she used to not be able to take it, for a higher cal formula.

If you read about the formula you read about her allergies. Those were positive scratch tests and we haven't done patch testing, that is supposed to be done in CO after the first of the year. She has others that she has had reactions too that haven't shown up on other testing. As hard as it all is to figure out the best thing to do was to take her off all food and start with a clean slate.

I hope all this has given you some hope and somewhere to start. Good Luck! -Amanda

Check with your
doctor first!