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Really, God?; Do ya just like to watch me panic.
Topic Started: May 11 2011, 07:23 PM (1,461 Views)
bellaluna
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Magical Leopluridon
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Of course you're on edge, who wouldn't be?!?! :argh: That's great that they are doing all the testing, I really hope they figure this out soon and that it's easily remedied :luck: :luck: :luck: :luck: :luck: :jingles: :jingles: :jingles: :jingles: :jingles: :jingles: !
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gunnar
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Oh FG you make me cry! I cannot imagine the stress you are feeling! Do not doubt yourself! You are a great Mother and you are not a flag misser! Give yourself a break! Big hugs from me!
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Trialbyfire
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Awwww....I feel so bad for you all.

Not sure if you've taken gluten out of his diet yet but if not, I'd do that as well. I have several friends who have various gluten issues and the GI reactions are pretty severe for some of them. And my one good friend who is gluten intolerant thinks her daughter is as well, but her issues are worse for dairy, so the daughter is going dairy free but still having trouble. Her mom thinks the real culprit is gluten, and it's triggering the dairy....so they are working on that. (I think I might have already told you all of this).

I really don't know too many people with severe allergies except to food -- not saying there aren't any, but food seems to be a bigger problem with more severe reactions -- so I think you should try not to freak out too much that it could be something environmental [like 3 random horse hairs on your clothes]....because you'll go crazy!!!

Make up some fruits, veggies, rice, things that he has had no trouble with in the past....and hunker down. Keep your epi pen handy..... your allergy appointment sounds like a long time away. :( I wish I could help! :sigh: :sigh:

Massive hugs and jingles coming your way!!!

:hug: :hug: :jingles: :jingles: :hug: :hug:
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stephjm
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It'll be an adventure! We're going on an adventure!
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I have no more real advice to give, other than saying I am still thinking about you and praying that Colton will have no more issues and you can get this figured out!! :hug: :jingles: :jingles:

I would say don't freak out, but being a mom myself, I completely understand why you are. Just try to focus on the good things, like he has had a good day today, etc., and know we are all thinking about you. :hug:
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FlashGordon
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TBF, interesting about the gluten. I was thinking of cutting it out of my own diet so it wouldn't be a stretch to do it for him. I give him mostly whole, organic foods I prepare myself, mostly fruit and veg, some protein. I had ventured off into some other organic, but processed stuff but since all this started I've cut back again.

Also you are right in that severe allergies like this are usually food related, not environmental. I guess there are instances where a combination of specific allergens can cause anaphylaxis.

Yeah Tuesday seems like a long time to me too. :( He has to be off steroids and antihistamines for 5 days before they can do the testing. So the earliest it can be done is Friday. We are on the cancellation list so I'm crossing my fingers we can get it done this week instead of next.

Kena has a follow up with her cardiologist on Monday so I'm a minorly stressed about that but she's been doing wonderful so I don't anticipate any problems.

And thanks again to all the TOC aunties for the concern and the support. I appreciate everyone's collective good thoughts and jingles and advice!!!
Edited by FlashGordon, May 17 2011, 05:59 AM.
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onthebit
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Flashy, how could you not be stressed - this IS stressful! I hope you get a cancellation for Friday, that would be wonderful. Just wanted you to know I'm thinking about you. I will write soon about what Mr. OTB does for his angioedema. His allergy testing didn't point to anything being THE culprit and he's never found a pattern for when it happens. His throat/air passage is the first area to start swelling, it is scary. I can't imagine going through this with a little baby that can't tell you exactly what is happening.

The good news is Mr. OTB lives his life as usaul and it doesn't really affect his daily life, but we do have drugs stashed in a few places just in case, and always travel with them.
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Reynard Ridge
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Drivin' The Short Bus
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More :jingles: :jingles: for FG and her family. What a rough time you have been having.
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Little Diva
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First of all -- :hug: :hug: :hug: :hug:

Second of all, you are NOT MISSING ANYTHING. Trust me on this. I went through exactly all the same thoughts as you did with my son and I know how awful and helpless you feel, and those feelings are multiplied when the child does not have the verbal skills to be able to tell you exactly what hurts and where.

You are doing the absolute best you can do and you are doing it in the right order. I am thrilled that they are willing to do allergy tests on a child so young, however, you need to prepare yourself for the chance that there could be no definitive results. That was the most frustrating thing for me was the fact that the results did not point to one clear allergy, just a bunch of irritants.

You are being a great advocate for both of your children and that is all a parent can do -- be the best possible advocate that you can and continue to push and demand answers and information. And stop looking up symptoms on the internet, okay? I am still suffering with poison ivy or something or other and so far, I have had scabies, flesh eating disease, ringworm and a host of tropical skin conditions :o all because I look up the damn symptoms on the internets. :rolleyes:

When I was an infant, I was deathly allergic to all dairy, eggs and wheat, which was probably gluten and back then no one dealt with those kinds of allergies. I had to drink soya milk, which in the 60's was hard to find and very, very expensive. My parents like to regale me with the story of the old country doctor who told my mom to feed me mushed up bananas and something else (cannot remember) to clear out my system and re-start me. And it worked -- 50 years later I am still here, but I do have issues with milk, and gluten and I love bananas and can eat an egg everyday. And you know, my mom went through exactly the same feelings you are going through right now. She has told me of her heartbreak at how sick I was and how helpless she felt until she met that country doctor. It still can bring tears to her eyes.

Keep your diary, do what the doctor says, and try and relax just a wee bit. You do not do you or Colt or Spicey Girl any favours if you get sick or run down. :hug: :hug: I know how hard that is when they are this sick. You feel like you can jump outta your skin the minute they cough or burp. I understand that feeling (and I still have it with my son and he is 26) :hug: :hug: :hug: :hug: :hug:
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FlashGordon
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LD, thank you SO much for all of that! I really appreciate your perspective having gone through this.

I didn't even think about the fact that we may not get a definitive answer.... I'm glad you mentioned it, at least I can prepare myself then! I am not good at not having concrete answers when it comes to anything. I guess I am very black and white in that regard. I want to KNOW and have people be SURE but sometimes with medicine and science I guess that is not the case.

Yeah Dr. Google is AWFUL. When Makena was sick I didn't have time to google anything or read anything while it was all happening, which was a very good thing. I've not had much freelance this week, it is raining, I'm stuck inside, so of course I'm googling away scaring the sh!t out of myself!

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Onelanerode
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No wise words, just hugs to you ... ALL of you!!

:hug: :hug: :hug: :hug:
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JanM
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Flashy-I wish things were better, but there is nothing else you can do now. None of this could possibly be your fault, and you have to stop beating yourself up with guilt over something that you couldn't have stopped. Sometimes things just happen and the odds of two major illnesses in the same family during this short of a period aren't all that great, but sometimes this happens.

You are being a wonderful mother to both of your kids, and you are doing all you can for your kids in being an advocate and standing up for your babies. No one could do more for your children than you have, and I hope that soon you'll have definitive answers and both of your kids will be back to normal and you'll be as stress free as a mother of two can be.
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gunnar
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What JanM said!
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