We just thought we where allergy free....

[tinyblackdot]

First a little back history (im going to make this as short as possible), Maddie was born with meconium, at a hospital, she was taken away to the NICU because both she and i where running fevers when she was born. They gave her formula (even though i specifically asked them not to). I wasn't allowed to go in to see her for 24 hours (until my fever had gone away) so i was pumping like mad. Anyways......From the start dd was fussy and "colicky". She would never sleep and would scream all night long, no matter what......fast forward to 5 months, she started pooping blood, i was referred to a GI specialist, they recommended Neocate, I BF for another month, nothing changed so the GI dr highly pressured me into doing 100% formula. I did, and nothing changed.......so ff again to 9 months, we had our first colonoscopy,because if bleeding. But Dr couldn't continue because her colon was bleeding so bad.......another colonoscopy at 14 months, Dr didn't see any reason for the bleeding.......(oh and since dd was 5 month she has been on a egg/milk/soy/beef/pork/fish/peanut/corn free diet.) anyways ff to about 2 months ago....GI dr tings dd has a fissure that is causing the bleeding, and says we don't need to see him anymore, Yay! I take DD to a allergist to get their opinion on weather she actually has allergies or not, they test her and she test negative to EVERYTHING, and not only that her allergy cells are so low (at about a 3) that there is no way (so says the DR) that she could possibly be allergic to anything......

So we stared trying out some foods, porkchops (fine), fishsticks (fine) peanut butter(fine) corn (fine) and then milk.......so now the last week dd has been super hyper, wont sleep, won't go to bed on her own, is waking up and not going back to sleep, is waking up SCREAMING for no reason, isn't really eating like she normally was, and then today she threw up all over everywhere after eating some goldfish crackers........

What do you think? Would you relate her behavior to milk allergies, or just keep trying it and see if it goes away? Her Pedi, allergist and GI dr are not convinced that she even has allergies, but with all these signs i just cant see it possible for it to be something else.

Does anyone else see their child's behavior change in relation to the food they eat? She seem completely incapable of going to sleep. and just sooo cranky and hyper!

[kjbrown92]

Have they ever heard of a thing called intolerance? If they have an intolerance, and they test for an allergy, the test will be negative. Duh. It doesn't mean they don't have a reaction to the food. It makes me so mad that doctors are unwilling to accept a reaction to food that is not an IgE response. It happens. all. the. time.

When my DS is getting the foods he's not supposed to, it takes him hours to fall asleep. When he's off the foods, he's asleep within 10 minutes. He cries the whole next day if he has eggs. He has tantrums if he eats soy. Look at the Feingold diet, or the Failsafe diet. Read the book, "Is This Your Child?" by Doris Rapp. You'll find evidence that there are a ton of kids who have behavioral changes because of food (and yes, digestion problems such as rectal bleeding as well).

[tinyblackdot]

Originally Posted by kjbrown92

Have they ever heard of a thing called intolerance? If they have an intolerance, and they test for an allergy, the test will be negative. Duh. It doesn't mean they don't have a reaction to the food. It makes me so mad that doctors are unwilling to accept a reaction to food that is not an IgE response. It happens. all. the. time.

When my DS is getting the foods he's not supposed to, it takes him hours to fall asleep. When he's off the foods, he's asleep within 10 minutes. He cries the whole next day if he has eggs. He has tantrums if he eats soy. Look at the Feingold diet, or the Failsafe diet. Read the book, "Is This Your Child?" by Doris Rapp. You'll find evidence that there are a ton of kids who have behavioral changes because of food (and yes, digestion problems such as rectal bleeding as well).

I knew you would help me!

Thanks for the book and the diet plans! im going to google them now!

[Munchkimo]

Neocate isn't corn free, is it? I must be missing something.

[tinyblackdot]

It has Corn Syrup, which according to my Dr, isnt the same as corn. Now i had the same concerns, aswell, but really there isn't much i can/could do about it.

[nalo]

Originally Posted by tinyblackdot

It has Corn Syrup, which according to my Dr, isnt the same as corn. Now i had the same concerns, aswell, but really there isn't much i can/could do about it.

Oh.My.God. How does a person even respond to that? What a flippin' IDIOT!!!!!!! (sorry, but it's true). It boggles the mind that a DOCTOR?!?! can't figure out that corn syrup is corn and will be dangerous for someone who is intollerant to corn.
I am so, so, so sorry you have been dealing with doctors who don't understand this (but certainly not surprised). It sounds as if your sweet LO has been consuming "bad" food for her entire life because of the less than stellar information you have gotten from docs. I would definately go to a really strict diet (not a TED or anything, but just very careful planning) with her to remove all the top intollerances/allergens and start letting her gut heal up. She will need lots of healing support like probiotics, cod liver oil, and perhaps others like vitamin c and quercetin. You have definately found the right place to get info and support on food intollerances. Good luck in this journey.

[Chinese Pistache]

Ditto to everyone. While many allergic babies can tolerate hypoallergenic and elemental formulas, not all can. It's really negligent of the doctor to say that your lo couldn't be reacting to ingredients in the Neocate. Even the company that makes Neocate doesn't make that claim.

Up in the resources sticky are a few links about how to do an elimination diet and what to do for gut-healing. Take a look at those

[tinyblackdot]

Well before i switched her to Neocate i did the Dr searl eliminateion diet for about 2 months strait. I was milk/soy free at about 2 month pp, and then from there did the Dr sears, and lived on Brown rice, squash, zuchini, and sweet potoates and chicken. But it didn't seem to help one bit.

She was tested 3 times for corn/celiacs, but it was always negative. But there was a time right before we started solids and started formula that things seemd better. Then we started that darn formula and it only got worse, maybe becaus of the corn syrup, i have no idea.......

DD got salmonella somehow ( i still don't know how she got it) which made the bleeding worse and then the Drs where convinced that she had sallmonella all along.

DD also has some vascula abnormalaties, so they thought that there could be vascular issues in her GI tract that was causing the bleeding, then i thought that maybe all of the antibiotics they gave her in the NICU could have killed off all of her good digestive bacteria and she has an imballance somewhere in her gut......maybe her paind son't even come from the food, maybe it comes from somewhere else.....


Oh well, it looks like we are going to be starting over from square one.......

thanks ladies!

[kjbrown92]

First, celiac is a reaction to gluten from wheat, barley, etc. (not corn).
And if the TED doesn't get you to baseline, then you have to switch out the foods one at a time, because one of those foods might be the triggers (for example, my DS can't have turkey or rice, so those would have had to be switched out).
It seems like you have a bunch of stellar doctors there. Is there any way to see a new doctor (or two or three)? You do need to determine if anything is structurally wrong. You bring up possible salmonella, possible fissure, possible vascular problem, and none of the doctors seem to have a clue. This poor baby is suffering. Ugh. I would explore everything at the same time (as in eliminate everything that was getting you somewhere at the beginning, plus try to see some new specialists or naturopath or homeopath or someone else).

[Chinese Pistache]

To me, it sounds like your basic cow milk protein intolerance, which is not the same as an IgE allergy to cow's milk protein (somewhat different reactions and will not show up on traditional allergy testing). Basically, it's determined by observation and elimination. And usually, it is determined by a ped GI. They can sometimes scope, but the scope only identifies intestinal inflammation, but not the cause of it. The diagnosis is becoming more common, since doctors are beginning to recognize it. Since your lo has never actually been dairy-free, I'd start there. Keep a food journal and do a strict elimination of it (watching for hidden and trace amounts). See this: http://www.mothering.com/discussions...d.php?t=934866

Also, it can take 6 wks for it to leave the system and for inflammation to recede, so don't be alarmed if you see blood for a little while longer. And I'd start gut-healing. Kirkman's makes a dairy free probiotic that contains the bacteria babies need: http://www.kirkmanlabs.com/[e-mail]

And more on healing the gut: http://www.mothering.com/discussions...923&highlight=

[kjbrown92]

She said she was off milk/soy for 2 months and it didn't help....

[Chinese Pistache]

Originally Posted by kjbrown92

She said she was off milk/soy for 2 months and it didn't help....

Oops, sorry I missed that.

I'd still do an elim diet, but switch up the foods. My ds reacts to sweet potato, for instance.

[tinyblackdot]

Originally Posted by kjbrown92

She said she was off milk/soy for 2 months and it didn't help....

Yeah that is while i was BFing, i was milk/soy free while BFing for about 4 months and it didn't help. Then we started Neocate, without foods and it didn't help, and we have been completely milk/soy free (other than the formula) since then (just about 2 years now).

We just recently started the to introduce dairy recently with suggestions by all of our Drs.

As for getting other Drs opinions, this is our 2nd Pedi, and our 3rd Gi, and i just got the Allergist. We don't have allot of options, there just are not any good Pedi GI drs that will take dd's insurance. I have to go through the childrens' hospitals, and they just all have been taught the same things.....so they all think the same way.

kjbrown: after reading some of the info on the links you posted, i think i am going to try to get her into a holistic Dr, if i can find one that isn't a quack, and that i can trust.......i just don't know what else to do. It seems like all of the mainstream Drs are all just saying the same thing and giving us meds to help dd sleep, or miralax, or previcid, some pill to fix the problem....er uh.. to treat the symptoms, NOT fix the actual problem.

And im getting so stressed out without a support group here, its gotten to where all of my family and my friends think i am some kinda crazy mom, that has my dd at the Drs every week. Its like they don;t even care anymore.......one of my DHs friends actually said to me that he thinks i am making my child into a hypochondriac!! It just kills me! DH and my mom are the only ones that really understand since they watch her all of the time, and see her screaming and not sleeping........

And we have allot of different issues....kidney reflux, Vascular Birth marks, possible NF (its being ruled out be we are still waiting on more tests), Asthma (im still not convinced of that one, but the DR thinks so) and the GI issues, plus dd is running high fevers every other week.......there is just alot on my plate, and i feel like i can;t catch my breath, you know? And then with people not caring and acting like im crazy.....it just kills me!

UGH! Sorry to unload.....its been a really long week!

[Chinese Pistache]

Well, make yourself at home. This is the place where we can all be sane together!

WRT dairy, I wouldn't count it out entirely, even though you eliminated it for two months with no improvements. It could just be that dairy wasn't the ONLY problem food. It could have been one piece of the puzzle but you couldn't see it because it was masked by a reaction to something else. It's just VERY rare for kids with food allergies/intolerances to not have problems with milk/dairy. That's why it's one of the most, if not the most, common allergen in North America. Something about it or the way it's processed or the way our bodies are damaged makes it one of the first to cause problems. Anyway, just don't count it out yet.

I hope you find a good holistic doc. If you post in the Finding Your Tribe section, someone may have a recommendation for your area.

[WuWei]

they just all have been taught the same things.....so they all think the same way.

Mama, my latest soapbox is that antacids CAUSE allergies!
http://www.mothering.com/discussions...59&postcount=3

I'd bet $100 that baby received antibiotics at birth. You all started out with an imbalanced gut. Btdt, got the leaky gut as a souvenir. Unfortunately, you are two years into damaging the gut.

Ladies, what IgE testing would you all advise? I'd at least get a general idea of what to avoid. And do a modified elimination diet, including as much gut healing as possible. The basics are finding ways to include virgin coconut (or palm) oil (medium chain fatty acids); raw, unheated, local honey; cod liver oil (Blue Ice-fermented); homemade chicken bone broths; liver (1/2 oz 3x/week); magnesium (Baby Calm); zinc, Vit C. PROBIOTICS, cultured and fermented whole foods: water kefir, homemade coconut yogurt (or Cocobiotics), GT Dave's kombucha (1-2 oz per day).

By rebalancing the GI gut microflora, you should be able to stop the antacids in a week or two, imo. You can use "Gripe Water" or "Tum-ease" for indigestion.

There are some yeast killing foods to include. http://www.mothering.com/discussions...&postcount=648

And focus on alkalizing foods. http://www.mothering.com/discussions...&postcount=720

And NO dairy or casein for at least a month. Here is a list of hidden dairy: http://www.kellymom.com/store/handou...dden-dairy.pdf

During that time, see if you can find a source of raw goat's milk. And start making raw goat's milk yogurt and kefir. They are EASY. No yogurt maker needed, even. Dogmom, (an MDC member) is a reliable resource for quality yogurt starter and kefir grains: http://www.culturesforhealth.com/zen/

Also, add some Bubbies sauerkraut, if she'll eat it. Just a teaspoon a day, or a teaspoon of the liquid brine. And Bubbies pickles daily.

Specific bottle probiotics for bifidum bacteria for infants and children, dairy free. Ladies, which brand??

Here is the link to the "Healing the Gut" thread. But, the basics are above. http://www.mothering.com/discussions...d.php?t=434071

The allergist isn't going to help. The GI guy isn't going to help. You need to improve the immune function. Gut healing will help asthma also. Also, find a classical homeopath and they can turn this around.


Pat

[WuWei]

Please tell me she isn't on antibiotics for kidney reflux.

Pat

[WuWei]

Is the NF, Neurofibromatosis?

Have you seen a chiropractor?


Pat

[WuWei]

Btw, wild child (aggressive, sensory seeking, unable to hear other's needs) is totally dairy, and artificial colors here. Restless sleep and hyperactivity is wheat at our house.


Pat

[kjbrown92]

I wouldn't recommend doing the goat's milk until you're at a baseline, and then check to see if she can have it (there's a lot of crossover between cow and goat milk intolerances).

[tinyblackdot]

Originally Posted by WuWei

Mama, my latest soapbox is that antacids CAUSE allergies!
http://www.mothering.com/discussions...59&postcount=3

interesting....i had a feeling that they where making her worse, so i took her off of the previcid and she slept like a baby! Now things are back to the same old agian, but we did start tums for the calcium so maybe that has something to do with it......

I'd bet $100 that baby received antibiotics at birth. You all started out with an imbalanced gut. Btdt, got the leaky gut as a souvenir. Unfortunately, you are two years into damaging the gut.

Yup!
I know that that has allot to do with it! She overall has very slow bowels, and it seems hard for her to digest things, and i know it has to do with all of the good bacteria in her gut getting killed off by the antibiotics.

Ladies, what IgE testing would you all advise? I'd at least get a general idea of what to avoid. And do a modified elimination diet, including as much gut healing as possible. The basics are finding ways to include virgin coconut We use it as much as possible (or palm) oil (medium chain fatty acids); raw, unheated, local honey; cod liver oil Im still a little hesitant to start fish while all of this is going on (Blue Ice-fermented); homemade chicken bone broths; liver (1/2 oz 3x/week); magnesium (Baby Calm); zinc, Vit C. PROBIOTICS, cultured and fermented whole foods: water kefir, homemade coconut yogurt We do the Soy Delicious, (or Cocobiotics), GT Dave's kombucha (1-2 oz per day). I doubt she will drink tha kombucha.....what about just like a teaspoon of Braggs?

By rebalancing the GI gut microflora, you should be able to stop the antacids in a week or two, imo. You can use "Gripe Water" or "Tum-ease" for indigestion. I am going to go buy her some tummy tea, and see if that might help.

There are some yeast killing foods to include. http://www.mothering.com/discussions...&postcount=648

And focus on alkalizing foods. http://www.mothering.com/discussions...&postcount=720

And NO dairy or casein for at least a month. Here is a list of hidden dairy: http://www.kellymom.com/store/handou...dden-dairy.pdf

Yeah the dairy is gone again for now, DH and i where both somewhat vegan, so we know how to find hidden dairy, i read EVERY label!

During that time, see if you can find a source of raw goat's milk. And start making raw goat's milk yogurt and kefir. They are EASY. No yogurt maker needed, even. Dogmom, (an MDC member) is a reliable resource for quality yogurt starter and kefir grains: http://www.culturesforhealth.com/zen/

We did goats milk for a while, and we had REALLY REALLY bad bleeding issues.

Also, add some Bubbies sauerkraut, if she'll eat it. Just a teaspoon a day, or a teaspoon of the liquid brine. And Bubbies pickles daily.

Specific bottle probiotics for bifidum bacteria for infants and children, dairy free. Ladies, which brand??

We us Bluebonnet, but i got really lax about giving it to her...ill try again

Here is the link to the "Healing the Gut" thread. But, the basics are above. http://www.mothering.com/discussions...d.php?t=434071

The allergist isn't going to help. The GI guy isn't going to help. You need to improve the immune function. Gut healing will help asthma also. Also, find a classical homeopath and they can turn this around.


Pat

Thanks so much!

As for the antibiotics, we DONT do them. She had 3rd grade reflux, and our first UI wanted to do surgery and put her on antibiotics, we got a second oppinion, and he said to just wait and see what happens. That if she kept getting UTIs we ould see about antibiotics, but untill then they where not going to do anything about it. So its been about a year since her last UTI, so no surgery no anibiotics. However, she has ben on antibiotics on and off since she was born. Like i said before she is ALWAYS sick! We have never gone 3 weeks without going to our pedi.....like right now she is running a 100 fever......

And now her urin is dark brown and very potent, but we just went into the pedi last week and had a cath UTI and culture done because she was running a 104 fever.....and they all came back negative......but her white count was super high, but they couldn't pinpoint the infection......