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18M Old - With Genetics Against Her


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137 replies to this topic

#16 Aprilelayne

 
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Posted 05 September 2012 - 10:46 AM

I'm at my wits end....finally got an official appointment with the peds gastro.

October 15th, 40days away!!

I have an 18month old with open sores and raw skin from diarrhea and we are supposed to stay as-is until seen??? I'm sorry, I can't purposely keep her in pain! I just don't know what it is or how to fix it at this point if its celiac/gluten or other food allergies or gastro complications.

I have an outstanding call to the peds triage nurse and the gastro triage nurse to try and see if we can get seen before then.
  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


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#17 pricklypear1971

 
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Posted 05 September 2012 - 11:38 AM

I've read this thread and must say i feel terrible for you and your daughter. You are trying everything you can at this point. Keep it up.

One suggestion, if you haven't already started this, is to not wipe her bottom but to rinse it with cool water. Also, if you can get them, try having her wear some cotton cloth diapers called prefolds around the house - without a cover.

My son had the same acidic d periodically and the best thing I did was to rinse him off in the sink, pat dry, and let him run around airing it out as much as possible. I didnt wait for bm's - i did it every time he urinated as well. I probably changed him every 30 minutes. Exhausting. I used Weleda calendula baby diaper cream, too. Calendula really helped his skin.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#18 Aprilelayne

 
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Posted 06 September 2012 - 05:08 AM

I've read this thread and must say i feel terrible for you and your daughter. You are trying everything you can at this point. Keep it up.

One suggestion, if you haven't already started this, is to not wipe her bottom but to rinse it with cool water. Also, if you can get them, try having her wear some cotton cloth diapers called prefolds around the house - without a cover.

My son had the same acidic d periodically and the best thing I did was to rinse him off in the sink, pat dry, and let him run around airing it out as much as possible. I didnt wait for bm's - i did it every time he urinated as well. I probably changed him every 30 minutes. Exhausting. I used Weleda calendula baby diaper cream, too. Calendula really helped his skin.


Thanks Prickly,
We are doing just that, I'm using luke warm water in the basic squirt bottle (from the hospital at her birth actually) and the baby washcloths to help clean her up. Then its naked time, which is the more difficult thing in that we have carpet throughout the house and well, we are cleaning up diarrhea puddles every so often. :( Just twice so far, but obviously she can't control it like she can her urine.

End of the day yesterday was with the gastro nurse returning the call upset that the ped hasn't done any initial testing and said she's on the cancellation list but to get back with her ped to at least get initial testing and a weight check if she's lost any weight. To check her for anemia and vitamin levels to get a head start on the gastro testing. She said we could also consider going the allergist route at the same as the gastro route to see if she has any true food allergies.

So she does have an appointment with the ped on Monday.

Yesterday's dinner was one chicken nugget.
and 1/2 cup dry honey nut chex (not intentially gluten-free...just the type we naturally eat)

She did however try fruit cocktail for the first time yesterday, so that was a milestone! I'm glad to have texture milestones to prove to someone that there is something more than a psychological reason for her feeding issues.
  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#19 Aprilelayne

 
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Posted 06 September 2012 - 11:38 AM

oh wonderful news!!

Gastro nurse just called about a cancellation for tomorrow!!
  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#20 Aprilelayne

 
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Posted 07 September 2012 - 05:27 PM

Good news! Seems my daughter's gastro is pretty proactive!

Today was an initial consult, agreed something is off. She took a lot of family history, loved my food logs and summary I prepared and ultimately let me ramble about my lifetime of gastro ailments.
Before we got to talk about my daughter she recommended me getting tested for celiac based on what I had shared. She suggested waiting until November though since I just started back in gluten in August after five months off.

We started the tested bonanza on my daughter it felt today.
Abdominal X-ray for a view for physical blockage or constipation.
CBC
Sedimentation rate
Immunoglobulin A
C-reactive protein
TTG IgA
Immunoglobulin E
Vitamin D
Comprehensive metabolic panel
Ova and parasites w trichrome stain
Pancreatic elast, fecal
Fecal fat qualitative
Stool culture

I have to take care of the stool samples this weekend, but the X-ray and blood was today.

In the meantime she's given samples of probiotics for her and recommended fiber powder once a day.

It seems like a lot, but she rattled them off so quickly I think we got at least half of the tests this site recommends.

Now we wait and see.
Pancreatic elast, fecal
  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#21 pricklypear1971

 
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Posted 07 September 2012 - 05:32 PM

Good news! Seems my daughter's gastro is pretty proactive!

Today was an initial consult, agreed something is off. She took a lot of family history, loved my food logs and summary I prepared and ultimately let me ramble about my lifetime of gastro ailments.
Before we got to talk about my daughter she recommended me getting tested for celiac based on what I had shared. She suggested waiting until November though since I just started back in gluten in August after five months off.

We started the tested bonanza on my daughter it felt today.
Abdominal X-ray for a view for physical blockage or constipation.
CBC
Sedimentation rate
Immunoglobulin A
C-reactive protein
TTG IgA
Immunoglobulin E
Vitamin D
Pancreatic elast



That's great news!

Be aware she didn't order a complete Celiac panel. If those don't come up + I'd request more tests and/or endoscopy.

Tests: http://www.curecelia...s3_Antibody.pdf
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#22 Aprilelayne

 
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Posted 07 September 2012 - 05:35 PM

Thanks! I thought we missed some.
you posted while I edited but I thought the same thing.

This should at least give us something to work with for now I hope. I'm focused on the acidity of her diarrhea right now since that seems to be causing her so much pain.
  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#23 pricklypear1971

 
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Posted 07 September 2012 - 05:37 PM

Thanks! I thought we missed some.
you posted while I edited but I thought the same thing.

This should at least give us something to work with for now I hope. I'm focused on the acidity of her diarrhea right now since that seems to be causing her so much pain.


It's a very good start, and most importantly you have a doctor who is listening.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#24 nora_n

 
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Posted 09 September 2012 - 06:42 AM

you definitely need the new deamidated gliadin tests.

Here they do the ttg IgA and the DPG IgG as screening tests.
  • 0
gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#25 Aprilelayne

 
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Posted 10 September 2012 - 05:00 AM

I should have made my username "PoopMom" ....or change it after this weekend at least!

The samples were not easy, but I managed.
We started the probiotics on Friday night and fiber therapy Sunday morning.

She has been great and eaten some better choices this weekend, more fruits and veggies yesterday than in an entire week! I was hopeful that we may have turned a corner.

Uh no.
This morning was a wide wake up call that things are working, but not correctly.
I won't get into the gory details, but it involved a bath for little one at 6am and a load of laundry including bed sheets, mattress pads, dolls, everything. I had to scrub her down and wash her hair and hands, literally EVERYWHERE.

The mixed status:
good for increased food options and healthy choices
bad for amount of poop and its looseness.

(dropping off 5 stool samples this afternoon)
  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#26 pricklypear1971

 
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Posted 10 September 2012 - 06:02 AM

I should have made my username "PoopMom" ....or change it after this weekend at least!

The samples were not easy, but I managed.
We started the probiotics on Friday night and fiber therapy Sunday morning.

She has been great and eaten some better choices this weekend, more fruits and veggies yesterday than in an entire week! I was hopeful that we may have turned a corner.

Uh no.
This morning was a wide wake up call that things are working, but not correctly.
I won't get into the gory details, but it involved a bath for little one at 6am and a load of laundry including bed sheets, mattress pads, dolls, everything. I had to scrub her down and wash her hair and hands, literally EVERYWHERE.

The mixed status:
good for increased food options and healthy choices
bad for amount of poop and its looseness.

(dropping off 5 stool samples this afternoon)


Oh my goodness. Hang in there.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#27 Aprilelayne

 
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Posted 10 September 2012 - 06:24 AM

I just realized that nobody told me how long the blood test results would be?
The draw was at 4pm on a Friday, so I figure today is day1 in regards to processing time.

Any ideas on how soon to expect results? ten business days?
  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#28 pricklypear1971

 
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Posted 10 September 2012 - 06:26 AM

I just realized that nobody told me how long the blood test results would be?
The draw was at 4pm on a Friday, so I figure today is day1 in regards to processing time.

Any ideas on how soon to expect results? ten business days?


I'd call and ask. Mine usually take 5 days....every lab/practice is different.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#29 BettyinMD

 
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Posted 12 September 2012 - 05:19 AM

your poor little girl!!(and poor Mommy too)

reading with interest to see what those tests come back as.

My daughter has an appt tomorrow with her Doc and we'll be getting some tests as well.
  • 0

#30 shadowicewolf

 
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Posted 12 September 2012 - 07:55 PM

Mine were done in about a week.

Poor baby! It is a good thing your are addressing this now and not later.

I lived with "D" for a long time before i went gluten free. Cold shower the area then add corn starch baby powder seemed to help the most.

Carrots, or so i've heard, can help slow down "D".
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