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Prayers and good thoughts for my daughter

Soror

By Soror,
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Pen

Pen

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59 minutes ago, soror said:

We tried some different things for gas relief and they had a different cocktail at the hospital but nothing has touched it so far. I've thought about cutting out the milk to see if that has an affect. We already had her cut back but she still has some (although not every day) she didn't have any milk products yesterday and was at a 7/10 half the day. I told dh we are just utterly flying blind here and she is so tired of trying things only to have no relief.

 

For some people, the effects of a single exposure to any of several food or environmental triggers can keep symptoms such as gut permeability going for a month or longer such that there’s a phrase to remember as one reaches for the tiny bit of _____ when one hasn’t had any for weeks:  “99% avoidant is 0% protected”. 

And sometimes because of the long tail to any exposure, it takes a couple of months on a trigger avoidant program, plus adding things to try to heal gut damage to experience any relief.  It isn’t always on a day by day or even week by week level, where improvements can be experienced.  So people tend to give up too soon, since the special food and other restrictions are hard and often eliminate favorite foods. 

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jen3kids

jen3kids

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2 hours ago, soror said:

And dealing with all of this and PMS, I'm trying not to lose my sh*t.

 She is worried this dr. won't have answers either. So are we.

I'm trying to juggle taking care of her, the house, and not neglect the other children. And the million other things you know we're supposed to do.

I felt like we had it under control but after the fruitless trip to the hospital we are all feeling rather down 😞

 

 

Completely understand - been there, done that... actually still there and dealing with the mental aspect of chronic illness with 0 answers

 

1 hour ago, Pen said:

 

For some people, the effects of a single exposure to any of several food or environmental triggers can keep symptoms such as gut permeability going for a month or longer such that there’s a phrase to remember as one reaches for the tiny bit of _____ when one hasn’t had any for weeks:  “99% avoidant is 0% protected”. 

And sometimes because of the long tail to any exposure, it takes a couple of months on a trigger avoidant program, plus adding things to try to heal gut damage to experience any relief.  It isn’t always on a day by day or even week by week level, where improvements can be experienced.  So people tend to give up too soon, since the special food and other restrictions are hard and often eliminate favorite foods. 

 

So true, and so frustrating.  

 

56 minutes ago, soror said:

When I called today they had a cancellation for tomorrow morning! Continued prayers of guidance for the dr. and answers.

 

That's great!  Hopefully you'll get answers as opposed to just crossing another thing off the list of possibilities.

 

1 hour ago, wintermom said:

Hang in there. All of the "ruling out" various things is part of the process doctors have to go through. They may have a list of 5 of the most common/obvious things, and they need to rule these out before looking into other things. It all takes time. It's super frustrating, for sure, but it's the reality of medicine. It's very complex. 

No matter what the causes of your dd's pain may be, there are still a lot of helpful things that you and she can do together to manage the stress, pain and frustration. Things like breathing/meditation, gentle physical activity, relaxing music, time in nature, and time with friends and having fun. Do some reflection on what factors seem to cause stress and anxiety in your life and in hers, and try to come up with some ways to reduce and counter-balance the stress with positive things.

All the best!

 

I think the meditation/mindfulness, gentle physical activity, and time with friends & family are so important.  Do everything you can to keep your dd engaged in life activities so that she doesn't feel isolated.  Yes, she doesn't feel well, but going for a walk or bowling doesn't make it worse (hopefully) and it may help her forget about it for awhile.    You have to help her make her mind over-rule her body.  I know it is hard, but it will be beneficial to her.   Stress reduction is key and has longterm benefits in many situations.  

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Soror

Soror

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Posted (edited)

I'm so sorry ladies, it was an epicaly long day.

We do not have answers yet but will be getting more testing. This is as expected as the testing we've done so far didn't yield any answers. We have some renewed hope that we will get answers.

Next up is a stool test (no time to do it here since we got in so quickly). Stool test will determine if she needs a colonoscopy. She will for sure get an endoscopy but might get a colonoscopy at the same time as well. Stool test results will take a week to get back and will get that dropped off Monday morning. When those results come back they will call to schedule whatever procedures we need. The dr. was thorough with questioning and had good bedside manner, this is the logical next step. Now, we wait, I'm hoping she just has to do the endo and praying for clear answers from that. I'm not sure where we go from there if it yields nothing but we'll cross that bridge when we get there. He talked about it perhaps being lactose issue, maybe some issue with FODMAPS, perhaps Celiac, IBS, HPylori will be ruled out, whatever they can test for while in there will be tested for. I just had this fear we'd be blown off, we'll tests show nothing so we don't know, too bad. We feel a since of relief to be moving forward somewhere and have a plan of action.

Yesterday, her pain was better(still present but not as severe- she rated it from 4-5 all day- on bad days she gives it a 7 and real bad episodes a 10) and she had no bad episodes, which is a big blessing. She had not had a 'good' day like that in awhile, still not where we want to be but improvement is improvement.

We got to take her to Ikea and the zoo after the appointment.

And when we were eating lunch the van was towed, dh ran out but no luck. I didn't even see a sign but dh said he did parking lot by Chipolte adjoins apartment parking lot. So, we got to call an UBER to take us to an ATM b/c they only take cash, $300. Uber got us back to the van and then finally we got to go home. I drove so dh could study and do homework.

We finally made it in around 4, mil brought the girls back shortly thereafter but then took dd1 back out b/c they saw a cat on the road. And yep, it was one of our outside cats, dead, their favorite of course.

There was lots of crying. Finally ds had his testing for his Black Belt yesterday (he did a great job) but we didn't make it home until 10 and I had to get up at 4:30 and had been up since 4:30 Friday, it was such a long, exhausting day.

We feel in a much better place. Next Friday I'll take her for labs to check antibodies for hashimoto's, hopefully that is negative but again we'll see and figure out our plan of action on that when we get there.

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wintermom

wintermom

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What a horrible day, except for the successful Black Belt test - Congratulations to your ds!!!!! Way to focus through all the stress. 

So sorry about your cat.  Really glad you have good medical follow-up in place. Hope you find some answers really soon. It's a lot of poking and prodding ahead. Hope the pain gets under control so she can handle all the upcoming procedures. well.

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