Author Topic: Allergy testing - *met our fantastic Paed!!!! And we have a plan p7*  (Read 23482 times)

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Offline koe2moe

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Re: Those who have had allergy testing done - *new reaction and pics p.3*
« Reply #90 on: February 28, 2012, 06:14:11 am »
fx!  hugs xx



Offline MasynSpencerElliotte

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Re: Those who have had allergy testing done - *new reaction and pics p.3*
« Reply #91 on: February 28, 2012, 12:37:04 pm »
{{{hugs}}} and good luck at the appt! Gotta love those mystery hives!
Heidi




Offline my3girlsjde

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Well the appt is tomorrow morning and not soon enough. E was up all night with four separate bouts of mucousy diarrhea between 2am and 8am. She was inconsolable most of they day and really seemed to have some gastric cramps as well :( It's not a bug, it's the same reaction and the fact that it's followed after hives and the amount of bread and wheat products she's had lately has me guessing all over again.

I have compiled a 14 page file including pictures of reactions, notes from various Dr's who have seen her and the dermatologist who classified her eczema, a chronological history of her sensitivities and two videos of her breathing. Surely that's enough. Surely that's enough for a Paediatrician to step up and get us referred for allergy testing and deal with what we think is asthma. If not, I hope he's got someone he can refer me to because I'm not leaving this time without being taken seriously. This has gone on long enough and she really is starting to suffer.

Any spare vibes you may have for this child to get a break and the Paed to take us very seriously would be greatly appreciated. We can't do this on our own any more. We need help with her and we need someone to see that.

But just in case, I'm digging out my boxing gloves and lacing up my boots. I'm going to fight every inch of the way on this one.
Vicki - nursing student and proud mother to three refluxers in two years





Remembering my sleeping angels: 17 Jan 06, 30 Jul 09

Offline koe2moe

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Re: Those who have had allergy testing done - *vibes please p.7*
« Reply #93 on: March 01, 2012, 07:35:11 am »
remember not to take the gloves out until they are really needed!  Perhaps you will get the best paed who is great!  vibes for that!!!! 



Offline deb

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Re: Those who have had allergy testing done - *vibes please p.7*
« Reply #94 on: March 01, 2012, 11:25:11 am »
Vibes on the way from us! Go get 'em Momma Bear!

Offline Mom to M&M

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Re: Those who have had allergy testing done - *vibes please p.7*
« Reply #95 on: March 01, 2012, 11:47:47 am »
Sending vibes on the double. Thinking of you and hoping for answers. Hugs!
Karen: Proud Mama to Marisa (8-11-05) and Matthew (6-5-09) and happily married to my best friend and love of my life since 10-13-01

Offline MasynSpencerElliotte

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Re: Those who have had allergy testing done - *vibes please p.7*
« Reply #96 on: March 01, 2012, 12:41:44 pm »
{{{hugs}}} and tons of vibes Vicki! 
Heidi




Offline Jimbob

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Re: Those who have had allergy testing done - *vibes please p.7*
« Reply #97 on: March 01, 2012, 18:56:39 pm »
{{{{{{{{{{Lots of hugs}}}}}}}}}} and ~~~~~~~~~~~vibes~~~~~~~~~

Kelly x



James has atopic eczema, multiple food allergies, asthma and late talker

Offline my3girlsjde

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Re: Those who have had allergy testing done - *vibes please p.7*
« Reply #98 on: March 02, 2012, 05:30:32 am »
Thanks everyone :)

Long day (aren't they always when you have a big appointment?) and just getting settled in to sort my head out about it all. First off, the Paed is AMAZING!!!!! We're not crazy, he confirmed that and he's got us on the path to get some things sorted out with E. Unfortunately he's taking a year off starting in July to specialize but he's passing his patients on to the other Paed he shares an office with and he said they are like minded and have the same views on allergies. He said she is aweseome and smarter than him so we're happy with his confidence in her. He said in cases like E, both of them would likely choose the same route of testing and treatments if possible to treat. So we're happy with that.

Within seconds of describing the weight loss E endured while bf'ing and the symptoms she exhibited then, he said right off Milk Allergy. We went through her history and she's got some big red flags that this needs to be investigated further. What's more is he confirmed that I did the right thing by going on an ED. I can't even describe how good it felt to hear that after having another Paed imply that I wasn't bf'ing properly. We went through all of her triggers and symptoms and looked at our family histories. We went over what we know for sure and there is a definite concern about wheat. :( He advised against cutting ALL wheat as it hasn't been confirmed and it's such a huge thing and we're already incredibly frustrated trying to feed her. We discussed testing for Celiac and the amount of false negatives the blood test gives and the only way he said to confirm it is through a biopsy of her intestines while under GA. Where this is so invasive, and she's thriving he's leaving that up to the allergist. Dh and I aren't prepared to do anything that invasive until all other avenues to figure her out have been exhausted.

We've got a referral in to a Paediatric Allergist and should get in within a couple of months ::) ::) ::) But he's recommended us to a guy that doesn't like doing RAST blood tests because of the false negatives it gives. So it'll be a scratch test and that's what we wanted so yay :D I mentioned that E was on a daily dose of antihistamines and he said right there it would discredit the results of the previous RAST we had done. He seems so knowledgable and so proactive on getting E some help. We did discuss the differing opinions that allergists have but his position is to try to get all of the info before deciding what's affecting what. He agreed that E right now has a build-up in her body and that would likely explain why she's so sensitive ATM.

She likely has asthma :'( He explained how to use her inhalers properly and gave us a regimen to follow as soon as she gets a sniffle to help her out when she gets a cold. He did say that her coughing could also be due to her sleep apnea but more likely an asthmatic thing.

She is also exhibiting breathing reactions to something she's exposed to and it's likely food. We're thinking wheat right now and possibly dairy though she did it tonight after having a chicken nugget that was breaded and I didn't get all of the breaded stuff off. But sometimes the breaded stuff contains milk so not 100% sure. But we did have to discuss anaphylaxis after that due to our concerns with breathing problems as a reaction to food. TBH, that part does scare me a lot. I know she doesn't have anaphylactic responses to anything she's been exposed to so far, but there are a lot of other high risk foods she's not tried yet so my imagination does wander :( Thankfully the testing will shed some light on that.

We're going to do some stool samples to check for blood and one of the more common parasitic infections he's seen just to rule it out. He doesn't believe she has a parasite as this has gone on for almost two years and nobody else in the house has it, but just to be safe and it's not an invasive test he wants it run.

After her breathing episode during supper she had a bout of diarrhea and it burned her and now has a bleeding bum :'(. So things are still quite built up after having her on bottles all day yesterday. I'm thinking of doing meat strips for her tomorrow, rice and oatmeal with blueberries as it seems to firm things up for her. At a loss really as there are so many things that are triggering her and she's tantruming because I'm denying her food. This is where it's hard.

So we're finally heard. We have a plan to help her. It's going to take some time and we're left for the next couple of months to figure this out still but we have someone who WILL finally help us. I just need a plan to help her little body balance out so she can get some relief from these tummy upsets and the diarrhea.

Any thoughts would be greatly appreciated :)
Vicki - nursing student and proud mother to three refluxers in two years





Remembering my sleeping angels: 17 Jan 06, 30 Jul 09

Offline MasynSpencerElliotte

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Re: Allergy testing - *met our fantastic Paed!!!! And we have a plan p7*
« Reply #99 on: March 02, 2012, 05:45:13 am »
Vicki, if you haven't already heard of the Kids With Food Allergies site I would highly recommend it. Can't post a link as I am on my phone and off to bed, but I will in the morning. So glad the Dr was so awesome, what a relief to be validated!

(((Hugs)))
Heidi




Offline my3girlsjde

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Re: Allergy testing - *met our fantastic Paed!!!! And we have a plan p7*
« Reply #100 on: March 02, 2012, 05:46:09 am »
Will head over there now Heidi :-* thx
Vicki - nursing student and proud mother to three refluxers in two years





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Offline koe2moe

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Re: Allergy testing - *met our fantastic Paed!!!! And we have a plan p7*
« Reply #101 on: March 02, 2012, 07:14:22 am »
you didnt need your boxing gloves!!!!!  :)  good paed!  hope E feels better soon!!



Offline Happyface82

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Re: Allergy testing - *met our fantastic Paed!!!! And we have a plan p7*
« Reply #102 on: March 02, 2012, 11:03:57 am »
I have just read your whole thread. i'm so sorry you are going through this. We were at a similar stage last year but in a way it was much easier as K was only 1 year old at the time so she wasn't too fussed about what she was eating. I can imagine how hard it must be at this age!!! I'm really glad the aped was so awesome and I do hope the appointment comes sooner rather than later!!

Offline Mom to M&M

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Re: Allergy testing - *met our fantastic Paed!!!! And we have a plan p7*
« Reply #103 on: March 02, 2012, 12:11:20 pm »
I'm so glad you have a new Paed that you love and a plan! He sounds wonderful. And I second the suggestion for the Kids with Allergies site. So many hugs!
Karen: Proud Mama to Marisa (8-11-05) and Matthew (6-5-09) and happily married to my best friend and love of my life since 10-13-01

Offline MasynSpencerElliotte

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Re: Allergy testing - *met our fantastic Paed!!!! And we have a plan p7*
« Reply #104 on: March 02, 2012, 12:39:54 pm »
Will head over there now Heidi :-* thx

I don't get on there much anymore, but it is such a great resource! I'll just post the link in case anyone else is reading this:

http://www.kidswithfoodallergies.org/

I really hope the breathing issues don't turn into an anaphylactic allergy! That is my biggest fear, for me and my kids as alot of my adult relatives are developing later in life.  Ugh, in a weird way it makes me glad Spencer is sometimes oblivious to the fact that she is missing out on some foods because that would be so hard...she is so literal in her thinking that all I have to do is tell her that a certain food gives her an "owie tummy" and she wouldn't touch it on her life.
Heidi