DS not growing (height or weight)? Dr. update post 13

[FindingMercy]

Originally Posted by Delaney21 My DS NEVER slept! I think he was in too much pain! But I have heard of other kids that sleep constantly because their bodies don't have enough energy to keep them awake. I have 13 month old twins and they have food allergies, but not Eos. My DD has a couple allergies and my DS2 has quite a few.

For my DD I don't think it was necessarily pain, but gluten seems to have neurological effects for her, including inability to sleep. It was awful.

My DD2 has no food issues at all, although we will have to keep an eye on her because Celiac can develop at anytime in life.

[Delaney21]

Originally Posted by FindingMercy For my DD I don't think it was necessarily pain, but gluten seems to have neurological effects for her, including inability to sleep. It was awful. My DD2 has no food issues at all, although we will have to keep an eye on her because Celiac can develop at anytime in life.

I just read a small piece of your blog and I think I just totally fell in love with you and your family! Best wishes to you and your family as you await your DS!

[FindingMercy]

Originally Posted by Delaney21 I just read a small piece of your blog and I think I just totally fell in love with you and your family! Best wishes to you and your family as you await your DS!

That's so sweet. We are very excited.

Back a few months there's a 3-part series on how we got our DD's diagnosis and how it's affected our lives if anyone wants to know the whole story. It's a lot to type out so I usually just point people there!

[pharmmama]

The random comments from people that don't understand are irritating and sometimes downright rude. My aunt, and others, have often told me that lactaid should clear it right up. No, it won't. I'm removing my kids from their daycare because I know they don't get DS's condition and I worry about him all the time. What if they forget and give him one of the cupcakes a parent brought in? He knows what he can't have, but since we make all those things with safe ingredients at home and he trusts his caregivers he'll just take it and eat it. DD tries to watch out for him too, she's such a good girl.

Just hang in there! It will never be easy, but it can be done! Other food allergy mamas are always there with good advice.

[Housefullofgirls]

Originally Posted by Delaney21 For us - I nursed my DS pretty much around the clock - most was for comfort because he was in so much pain. When he got the diagnosis at 11 months I was told I had 2 weeks to get him weaned and onto Neocate (elemental formula which will prevent the Eos and heal the gut). If you are on KFA you can go back and see my posts about that - it was horrible! We ended up cold turkey weaning and DS never would drink the Neocate. After 3/4 days of him literally starving himself, he was admitted intot he hospital for malnourishment, FTT and dehydration. They spent 5 days trying to figure out why he wouldn't drink it and they finally gave up and gave him a tube. Honestly, the tube was the best thing that ever happened to him! At 12 months, he was the size of a 6 month old and with the tube and Neocate he gained 3 pounds in a few weeks!! DS is now 5 1/2 and we have been trialing foods since he was 1 1/2. So far he only has 8 foods, so at this point, the tube is a permanent thing. Please keep in mind, he is considered to be a severe case, most kids find foods a lot faster! First thing, a lot of people take their kids off foods that make them sick because they don't want them to be sick. It's natural to do that. Unfortuntely, in this case, that's not a good idea! If you take her off the offending foods, her scope may not be accurate. You really should keep her on the foods that make her sick until after the scope! Given her age, the easiest thing to do is to go straight to formula. That way you will have a clear baseline and can start trying foods. Of course, you could try this after you eliminate top 8 and go to formula if that doesn't work. It's a lot easier to take food away from a 1 year old than it is a 5 year old if it doesn't work down the road. My DS NEVER slept! I think he was in too much pain! But I have heard of other kids that sleep constantly because their bodies don't have enough energy to keep them awake. I have 13 month old twins and they have food allergies, but not Eos. My DD has a couple allergies and my DS2 has quite a few.

Oh wow! I didn't know to keep giving the foods to her. I'm so afraid I hate seeing her sick & cry & so lethargic. But if I have to I will. Right now I have her at baseline with these minimal foods. Literally 5 foods & plain chicken that's it Besides the chicken nothing else is really protein & that scares me. I know she's not getting all the nutritrion but I'm stuck till the scope gah which is still a month away. Until a week and a half ago she slept 18 hours out of her 24 hour day. She was so tired all of the time. An hour after waking in the am she would fall asleep for the first nap. It was so sad and I cried alot knowing something was wrong & feeling like nobody was helping me figure it out. After being on the reflux meds for 2 weeks & going wheat & soy free in addition to milk, tomato & banana free she is doing better. So it will be hard to backslide. But she's not 100% normal either

[jen_batten]

Originally Posted by Housefullofgirls Oh wow! I didn't know to keep giving the foods to her. I'm so afraid I hate seeing her sick & cry & so lethargic. But if I have to I will. Right now I have her at baseline with these minimal foods. Literally 5 foods & plain chicken that's it Besides the chicken nothing else is really protein & that scares me. I know she's not getting all the nutritrion but I'm stuck till the scope gah which is still a month away. Until a week and a half ago she slept 18 hours out of her 24 hour day. She was so tired all of the time. An hour after waking in the am she would fall asleep for the first nap. It was so sad and I cried alot knowing something was wrong & feeling like nobody was helping me figure it out. After being on the reflux meds for 2 weeks & going wheat & soy free in addition to milk, tomato & banana free she is doing better. So it will be hard to backslide. But she's not 100% normal either

I just wanted to let you know that I'm praying for you and your DD. That sounds rough. Keep trying your best and do whatever you think is right for her and keep pushing to get her some help. Is there anyway anyone could get her in for the scope before a month? I know that has to be torture for you and for her.

[Housefullofgirls]

Originally Posted by jen_batten I just wanted to let you know that I'm praying for you and your DD. That sounds rough. Keep trying your best and do whatever you think is right for her and keep pushing to get her some help. Is there anyway anyone could get her in for the scope before a month? I know that has to be torture for you and for her.

thank-you, so far the allergist says no, we have to be on the meds for this time frame before the scope.

[Housefullofgirls]

I took Ella to the peditricain today for a fever the last 4 days. No ear infection, they cathed her for a urine sample & the the dipsticks I guess they use came out neg for nitrates & white blood cells. They are sending it for a full panel.

BUT bad news is she lost 1lb I cried the whole way home. I'm so scared & sad. I called the allergist and they can't get me in sooner than her June 20th appt becuase her Dr. is on vacay starting the 13th. I left a message for her to call me with the name of the ped GI she wants to do the scope becuase maybe I can get in sooner to them. Be ahead of the game by 2 weeks. I hate my daughter is suffering!

[Rdesonia]

I called an old friend who had a child with severe allergies. (My friend had cohns and her child had food allergies to everything. I remembered her son had to hospitalized several times and was not gaining weight.) She told me what finally worked to maintain weight was a mush she made. It was (unsweetened and washed) figs, a little almond milk, and coconut oil cooked together and blended. (She added the almond milk later but used water at first.)

Also Banana allergies are linked to latex allergies. I have a latex allergy. I can't wear anything with elastic (except Lastin which is latex free.). All my clothing is 100% natural fibers (cotton, ramie, wool, linen, etc). (No spandex, lycra, etc) I was constantly having a rash and was exhausted. I just thought I'd throw that our there in case you noticed any banding (red rashes at waists, legs, or other places where elastic might touch skin.)

[Housefullofgirls]

Originally Posted by Rdesonia I called an old friend who had a child with severe allergies. (My friend had cohns and her child had food allergies to everything. I remembered her son had to hospitalized several times and was not gaining weight.) She told me what finally worked to maintain weight was a mush she made. It was (unsweetened and washed) figs, a little almond milk, and coconut oil cooked together and blended. (She added the almond milk later but used water at first.) Also Banana allergies are linked to latex allergies. I have a latex allergy. I can't wear anything with elastic (except Lastin which is latex free.). All my clothing is 100% natural fibers (cotton, ramie, wool, linen, etc). (No spandex, lycra, etc) I was constantly having a rash and was exhausted. I just thought I'd throw that our there in case you noticed any banding (red rashes at waists, legs, or other places where elastic might touch skin.)

Intersting what you said about latex! I will remember that. She does fine with covers it seems but she can only tolerate 100% cotton diapers prfolds/flats. Polyester, bamboo, hemp, SC, fleece all give her terrible ezemea down her bum crack I'm actually in the middle of taking pic's of all the motherease brand diapers I just bought. When they said cotton i thought 100% well they have poly in them. I put her in a few to see yep. Reactions