***Ilovetivo...how is Zoey doing???

[Corie]

Hey Julie,
I realize that you guys are in the middle of Zoey's 10-hour test. I hope she is hanging in there and that everything is going well !! :)

[anamika]

I was thinking about her too. Hope everything went fantastically well. Please update when you get a chance.
Funnily enough, even DH asked me about her last week since I had mentioned the whole scenario to him.

[AmyZ]

Yup -- sending vibes from here too! Hope it went well.

Amy Z

Eliana 2/04
Abigail 1/07
http://www.gynosaur.com/assets/ribbons/ribbon_gold_12m.gif[/img][/url]

[Corie]

bumping this back up...

[buddyleebaby]

She posted in around the house that they had a failed challenge.

; (

[Corie]

I'm so sorry to hear that!! I didn't even think that she
would post an update in her Toy thread in Around the House.
I should have checked their first!

Thanks for letting me know, Alicia!

[ilovetivo]

Thanks Corie and everyone for asking! I know, my prayers/toy thread is lost over in that forum. Here's all the info


We were testing for 2 different dairy allergies: IgE food allergy and a FPIES (food protein induced enterocolitis) food allergy. IgE is your standard food allergy where the immune system is affected and anaphylaxis can occur which would need epinephrine (EpiPen) to stop it. FPIES is T-Cell mediated food allergy and the reaction occurs in the gut. For Zoey it causes non-stop vomiting for hours. Epi Pens don't work with FPIES. It's just as life threatening if you don't get IV fluids right away. Veins can collapse very quickly.

At first Zoey did great all day. She was in the bed at the Day Hospital the whole time. We watched tons of movies, played games and did lots of crafts. She ate the food no problem and "passed". We officially we free of the dairy allergy! Then about 15 min after being in the car she vomited...a lot. We went to the ER at Evanston and she got sick again. They gave her an IV again for fluids and steroids. Talked to her allergist today and the challenge was officially "failed". Her blood tests proved it. So she passed the IgE allergy, but she's still has the FPIES allergy to dairy.

Here's the detailed info:

- 10 am - Got to hospital
- She got her IV (taped down/no fluids), heart monitors and finger lead. Took blood.
- 10:45 am - she had 2 oz milk, divided in 3 parts and given every 15 minutes. She drank it no problem.
- 11: 15 am - We waited 4 hrs.
- 11: 30 am - Said stomach hurt, nothing else happened
- 2:45 pm she had 1 cheese stick (= 8 oz milk/one serving) over 45 min (that's how long it took her to eat it).
- 3:15 pm She allowed to eat what snacks she wanted
- Waited 3 hrs after she finished.
- 4:45 - Took blood
- 6:30 pm - Still no IgE allergic reaction or FPIES
- 6:40 she was released
- 6:55 pm - Got in the car
- 7 pm - she said "my tummy hurts". I asked if she was pretending or if it hurt for real and she said pretending.
- 7:05 pm she starts crying, wants up and out of car seat.
- 7:10 harder crying and agitated
- 7:15 - huge huge huge amount of vomit. We were closer to another hospital than 1st one, so we went to their Emergency Department.
- 8 pm - She vomited again (not too much, mainly mucus).
- 8:15 pm Got IV
- 8:30 pm - IV hooked up - fluids, steroids, zofran (anti nausea).
- 8:35 pm - Fell asleep on on Bob for 2 + hours.
- 11 pm - We left. She was happy and hungry.
- 11:45 am - Got home. She was still hungry, in a great mood and said "let's play!"
- 12:15 am - We all are finally in bed.

I was hoping it was car sickness (traffic, rain, windshield wipers, dark, lights flashing), tight seatbelt, exhaustion, hunger etc. Allergist thought it was a very delayed reaction in her voicemail to me, which also gave me hope. However when I talked to the Dr. this morning, she said it was an FPIES reaction. The bloodwork proved it. At 10am her neutrophil (white blood cell) count was 2000. A FPIES reaction is 3500 higher than baseline (or 3500 total, I'm not sure). At 4:45 pm, her count was 8000 higher, or 10,000. A clear-cut reaction. The dr. thinks because she ate so much normal food 30 min after finishing the serving, that it slowed down the digestion of the milk. Thus, the delayed reaction.

We'll discuss in 1 year if we will challenge dairy again at that time or not. Either way, we'd make sure we wait for the test results next time, and make her wait longer to eat regular food. In a year, we'll also talk about challenging peanut, tree nut, and shellfish. Until then, she's considered allergic (IgE) to them and we still need to carry Epi in case of a reaction.

Good news: She's not IgE allergic to milk anymore. She did do ok with the 2 oz in the morning, so it takes a decent amount of an ingestion to make her react (instead of a teaspoon when she was little). But we now know her tummy hurting after only 2 oz was a symptom. She vomited at a 45 minute interval (instead of 45 seconds when she was younger), so the FPIES is less severe.

Also good: We don't need to worry about cross contamination of shared lines/shared facility with dairy anymore. We still need to make sure she doesn't eat any milk products, but we can not be as worried. She got the IV 1 hour after the vomiting began, and veins didn't collapse. We can wait to see if she reacts (w/ accidental ingestion) before going to ER. However, if it's a decent amount of dairy, we'd go to the ER and wait in our car or waiting room (w/o admitting her). If she vomits, we check in right away.

More good news: In a few weeks we can challenge seeds, flax, and fish (not shellfish) at home, one at a time. We can also try food cross contaminated (shared facility/shared lines) with peanuts and tree nuts. If all goes well with all of these, we won't need to call any more companies. Reading the labels will be sufficient.

Thanks for all your support!!!

ETA: just got confirmation - the word is neutrophils - white blood cells

[Aunt to sweet baby boy]

Zoey is so cute! I am sorry that the challenge was "failed", but I am glad to hear that she can now eat some foods that have been processed on dairy equipment. I hope that your at home challenges go well, and that Zoey is able to tolerate those additional foods.

Ilana, aka Nana to my sweet nephew Avi

http://lilypie.com/pic/071010/DkhE.jpg[/img]http://b4.lilypie.com/iOMom7/.png[/img][/url]

[bubbaray]

Sorry I didn't get a chance to post earlier. Thanks for the update. Sorry to hear Zoey is still allergic, but it sounds like you and she are getting excellent care.

She's a cutie pie!!


Melissa

DD#1: 04/2004

DD#2: 01/2007

[ett]

Zoey is a cutie! Sorry about the failed challenge, but I'm so glad to hear that you don't have to worry about dairy cross contamination anymore. Keep us updated on your other food challenges at home.

[sweetpea]

Aw, I'm sorry to hear you had a failed challenge but what a brave little girl. You must be so proud of her!!!

[mudder17]

Thanks for your update! She is such a sweetheart! I'm sorry she failed the food challenges, but glad her allergies are not quite so intense as they used to be. My DD#2 has mild allergies to eggs and sesame and it's already difficult making sure my diet is egg free--I just can't imagine how difficult it is to make sure Zooey doesn't eat something she shouldn't.

Thanks for sharing your journey with Zooey. It is one of the things that has been very helpful for me in figuring out food allergies over here.

Hugs,

Eileen

http://www.gynosaur.com/assets/ribbons/ribbon_amethyst_36m.gif

http://www.tickercentral.com/view/6wrn/5.png

http://www.tickercentral.com/view/6wrn/2.png

[Corie]

First, Zoey is adorable!! What a long day for her! She
did such a great job! :)

It sounds like your day had some good and some bad. I
was so amazed reading through your post. You are so on
top of everything.

Hopefully, Zoey's food allergies will continue to get better
as she gets older.

[ilovetivo]

Thanks everyone!!

She's still doing really good considering. I think the steroids mon/tue/wed made her a little hyper and cranky at times. She was pretty cranky yesterday (thurs) and i'm sure she's still not caught up in her sleep. Hopefully today is better with the crankiness.

I, however, have my ups and downs. I'm really trying hard to concentrate on the positive. I'm just still P.O'd that we were told we could leave without knowing the neutrophil count. Not to mention how much the 2nd hospital will cost.

On top of it? I thought so, but really wish i knew now back then:

- keep the allergist's number in your cell phone, along with what numbers to push for the on call doctors in an emergency (i had to listen to the very long message 2x)

- wait to leave the challenge until all tests are back that would confirm a pass or fail (if there are any)

- wait at least 1 hour to give any regular food after the challenged food, allow the challenged food to digest. Also, less regular food at that time, and in the morning at home (if allowed)

- keep your Epi and emergency info & numbers in the car with you. we had it in the trunk with all the suitcase stuff. That's the 1st time ever i didn't have it next to me.

-Keep her emergency card in my wallet (i made one up with all the pertinent numbers and stuff, but keep it in the epi kit, which was in the trunk)

- don't take her clothes off until you're in the hospital, no matter how disgusting it is (when i got her out of the car, she was covered in vomit. i can't believe it, but i took off her sweater and shirt - fast and it was warm enough out for the 10 seconds, but still - i didn't want to be covered in it too, even though i had changes of clothes for all of us. I carried her like a baby to avoid the puke on her pants getting on me, but i could have done that anyway w/ her shirts on. Don't know what i was thinking. I guess also that i didn't want her to freak seeing and smelling it.

- keep a barf bag in the car. After challenges, have it opened and ready to go. I had a bag, but couldn't see in the dark, I just held it unopened under her. It did nothing. The hospital had these nifty ones that have the mouth of it held open with a ring.

[Corie]

Seriously, Julie, you should write a book about food allergies.

I find your posts so informative!


What all do you have in Zoey's epi kit? And what kinds of
information do you have listed on her emergency card?


Also, I keep a couple of extra Target bags in the car for
dirty diapers or barf bags. But sometimes the Target bags
have little holes or snags in them and the vomit could leak out.
There is nothing worse than vomit in the car. Yuck!
I need to find a better bag to keep in the car for emergency use.

[ilovetivo]

I know nothing, it seems, compared to the parents at kidswithfoodallergies.org

If anyone wants my exact Word document that's already formatted PM me

I got the idea and general format from a KFA mom, and modified it for us. It's about 2 1/2 x 3 1/2, laminated in business card laminators you can get from Office Max

--front page --

EMERGENCY MEDICAL IDENTIFICATION CARD

PICTURE

First Name Mid Ins Last Name
DOB: x/x/x Blood Type:
As of 11/1/07: xx lbs, xx in

MEDIC ALERT BRACELET
ID # xxxx 1-800-ID ALERT

LIFE THREATENING FOOD ALLERGIES:
All milk products, peanuts, tree nuts, fish, shellfish. Food Protein Induced Enterocolitis to milk. See Dr’s note in red medicine bag.

DRUG ALLERGIES: Penicillins, Erythromycins, Sulfas

IN CASE OF ALLERGIC REACTION, DO THESE STEPS IN ORDER:
1) Give one EpiPen Jr injection in outer thigh (in tube with green cap)
2) Call 911: Say “Allergic reaction has been treated, bring epinephrine�
3) Contact parents
4) If possible, give 1 1/2 teaspoon (7.5 ml) Children’s Benadryl orally

--- back page ---

EMERGENCY NUMBERS

PARENTS: Names Address
Home: (x) x-xxx City, State, Zip
Mom’s Cell: (xx) xx-xx Dad’s Cell: (xx) xx-xx

GRANDPARENTS:
xx xx H: (xx) xx-xx C: (xx) xx-xx or xx
xx & xx xx: H: (xx) xxx-xx C: (xx) xx-xx or xx

ALLERGIST: Dr. x x (xx) xx-xx - Press 0# for on call Dr
PEDIATRICIAN: Dr. xx xx (xx) xx-xx
POISON CONTROL: (800) 222-1222

OTHER IDENITYING INFOMATION: info on hair, eyes, body marks

MEDICAL INSURANCE: xx

You have our permission to seek ANY emergency medical treatment (including epinephrine) for our child, XX XX.
- Parents Names (I sign it too)


ETA: card info

[ilovetivo]

http://www.cardinal.com/mps/catalog/ASP/EME-BAG.asp?cat=Med_Surg

emesis bag - i snagged a lot from the hospital

[ilovetivo]

Medicine bag i keep in her diaper bag (i also have the same at home and 1 at school:

Red Medicine Kit bag from FAAN

-In ziploc:
CVS 1 tsp dropper
small plastic leakproof bottle filled with 2 doses of Benadryl liquid

-Travel Pack of Wet Ones
-Food Action plan - laminated and folded
-FPIES letter from doctor to ER doctors - laminated and folded (there's a copy of the letter in the book Understanding and Managing Your Child's Food Allergies By Sicherer
-1 epi pen
- Emergency Medical ID Card, posted above
- tylenol
-medic alert card
-band aid

i think i'll put the emesis bag in it too

* in the diaper bag, I also have a wristlet with 1 epi pen, the id card, wipes - i carry this with me if i'll have quick access to the diaper bag, but don't want to bring it all - like at the kid museum and i can put the diaper bag in the locker

[Corie]

I have never seen such a thing! It is perfect!

[ilovetivo]

Coop? :)

the bag part collapses into the ring part and they stack

[Marisa6826]

Julie-

Can you cut/paste/create this in a new thread in the Kid Food Forum?

I think it would be a great resouce for other parents of kiddos with Food Allergies. They wouldn't know to look for it here.

I don't think that this script has the ability for me to split the thread and keep it in both places.

-m

[ilovetivo]

Sure, what parts do you want? What's in my Med Kit and on my ID cards?

Is the Kid Food Forum the right place? As a parent of a FA kidlet, i would never know to search or look there.

It's really a medical issue. Do we have a medical forum?

let me know what you think please.

[Marisa6826]

Yeah, the Med kit and ID info stuff would be great.

Basically, what you would want with you in the event of an allergy crisis.

I think that since it directly relates to food, The Kid Food Forum's probably where it should go for now.

Since we're hoping to migrate scripts soon, the Fields want to hold off on creating any new Forums. Once we're in our new home (hopefully soon!), we'll work out kinks about new Forums, etc.

Thanks!

-m

eta- I just looked and 'food allergies' are already listed in the forum description, so any newbie moms would be directed there (for the time being)

[ilovetivo]

done

i never noticed the FA description in the forum, sorry

[ilovetivo]

Update:

If you remember, Z was allowed to trial fish and seeds at home, per her allergist. The reasoning is she had negative skin tests which are 98% predictive of a negative result when there's no history of reactions to that food.

So we successfully have done these foods (2x a day, 3 days each)
Fish: Salmon, tuna, pollack, whitefish
Seeds: Sesame, flax, sunflower, poppy, pumpkin, fennel, mustard (this one she's been doing for a year)

We talked w/ the allergists office and those foods should be representative off all the types seeds and fish she'd have. So, she has officially passed all seeds and fish!!!!!!! WOOO HOOO!!!

Also, regarding milk - she now successfully eats food items that are made on shared production lines and shared facility w/ dairy items. However, as you recall, she still cannot eat any foods with dairy proteins in them. We probably won't re-challenge dairy until she's 5. It was just too traumatic and there's really no need to do it sooner.

We still haven't fully trialed shared line, shared faciltiy with peanut, tree nut and shellfish yet, but so far so good.

The American Academy of Pediatrics has changed their guidelines on introducing other top food allergens. Our allergists may change their recommendations too. So instead of age 5, in the summer, we may skin test her again for peanuts, tree nuts and shellfish, since she's never had a confirmed, clear-cut reaction to them. The skin results were negative in October. If negative again, we MAY be able to challenge them (within a month of the skin test). The challenge would probably be in the dr's office, since in general they're more likely to be serious reactions).

IF she passes these, we'd be Epi Pen free!!! We wouldn't need to carry Epi even with the dairy allergy, because the dairy allergy is only a non-IgE allergy now (delayed gastro reactions only, that don't respond to Epi). Positive thoughts and prayers for that please! :)


FYI -
Dairy includes: cow's & other mammal milk in all forms, butter, margarine, ice cream, yogurt, cheese, casein, lactose, lactalbumin, many "non-dairy" items, whey, ghee, etc.

For more dairy/milk names, here's the How To Read a Label sheet: http://www.foodallergy.org/downloads/HTRLsheet.pdf






---

[DrSally]

I just saw this msg. after I pm'd you about the dairy stuff. I am so happy for you guys about the seed and fish!!! Seeds are in so many things. With DS's mustard allergy, I don't want to try any seeds. And the neg skintest for nuts and shellfish--who ho!! That would be so awesome to be epi-pen free. It would reduce a lot of anxiety. She is so darling. I'm sure that milk challenge was so hard for her, poor baby. Crosusing my fingers for you guys!

[ilovetivo]

Thanks so much!!