Re: Another Update/ and the GI topic from last week

[Guest guest]

In a message dated 10/13/2006 3:47:50 P.M. Eastern Standard Time,

gldcst@... writes:

wish I had a cute skirt story to tell. The only " cute " thing she is doing is

trying to pull her boobs off and has generalized it to dad while in the pool

hehe. And last Thu at gymnastics she was up to her old " grab the boys'

weiners " trick. sigh.

hmmm maybe a possible career for ? She could do breast reductions.

lol As for the wiener grab, maybe a social story on which handle is good to

pull and which isn't? :-) (sorry just couldn't resist)

Carol

Trishasmom

She isn't Typical, She's Trisha!

[Guest guest]

Yesterday I get a call from the Gastro's office....it'Yesterday I get a call

from the Gastro's oYesterday I get a call from the Gastro's

office....it'<WBR>s probably malabsorbtion. (HELLO....isn'<WBR>t that what Dad

and I have been

saying for 15 years????). Anyway so far she's on iron pills 4 times a day

(her tummy will just love this I know), more and a different brand of calcium,

increased dose of

Sherry,

I'm really out of it right now but since I was just diagnosed with severe

anemia I wanted to mention, what you probably already know, that the iron and

calcium need to be given at different times. Calcium interferes with iron

absorbsion.

I'm sorry to hear about the problems but at least you have people

acknowledging there is a problem.

Karyn

[Guest guest]

Sherry,

do you have a chart you use to keep track of the meds when given and to

chart any oddities? I just made one for us to use with Trisha, I will probably

have to tweak it a bit until I have exactly what I want but it's a start

anyway. I'd love to see what you use.

When you finish the boardmaker visual I'd love to see it. :-) I'm still

waiting to see the period book. lol

Carol

Trishasmom

She isn't Typical, She's Trisha!

[Guest guest]

<<hmmm maybe a possible career for ? She could do breast reductions.

lol As for the wiener grab, maybe a social story on which handle is good to

pull and which isn't? :-) (sorry just couldn't resist) >>

Yeah most 17 yo girls want implants...at least we don't have to worry about

that. It seems to be an OCD thing cause they're just starting to get bigger

(darn) and obviously they " don't belong there " .

How about a boardmaker visual schedule for what she can grab and what she can't?

I need to borrow a baby boy to teach her the difference. I knew we should have

had another kid- but it was too late. Oh boy this is going to be as much fun as

my " Period " book I made for her.

Sherry

[Guest guest]

Karyn

<<I'm really out of it right now but since I was just diagnosed with severe

anemia I wanted to mention, what you probably already know, that the iron and

calcium need to be given at different times. Calcium interferes with iron

absorbsion.>>

Thank you, yes I learned about this the last time she was anemic and it makes it

so much fun to have to dose her all day long....she needs it given with food

also. Actually the doctor herself prescribing the calcium didn't even

acknowledge the issue when I mentioned it couldn't be given WITH the iron. They

both want their own treatment to take precedence so I'm glad to hear it

emphasized again from you.

I know you must feel horrible but if you get a moment could you possibly list or

explain to me what the severe anemia makes you feel like other than exhausted?

can't talk to explain it to me. She just seems to hurt and be very grumpy.

But she's also showing alot of emotionality.

Hope you are better soon! seemed to rally after only a couple of weeks of

supplementation last time so I hope it is as quick for you.

Sherry

[Guest guest]

Hi Sherry,

Whew, poor , my first thought is, how are you doing, secondly, how are

you planning to get to drink that gross barium junk? I gagged just

watching my Dad drink it. I had to leave the room. I think prefers things

flat and in their place. Zeb would enjoy doing gymnastics with , LOL.

Charlyne

Mom to Zeb 13 DS/OCD/ASD?

gldcst wrote:

Seeing imitation is the highest form of flattery I'm going to copy

Carol and give our also crazy update on .

A couple of days ago they faxed her bloodwork results to me (from the GI guy)

and all her red blood counts are low.... again with the calcium, vitamin D, and

protein. (This kid eats more protein than any carnivore known to mankind). She

had a double appointment tuesday with the endo and the hematologist. We're still

waiting for results from the work they did that day (like thyroid) but

apparently she has a double form of anemia.... B12 and iron. The Cal, Vit D

(which we hoped would get better after we weaned her off of a high dose of

Prevacid for 4 years....so much for that theory) has been an ongoing problem for

years. The protein thing has too but all the doc's horses and all the doc's men

can't figure out how to put back together again. The three of them are all

on the same floor at the hospital and they were scurrying around trying to come

up with something that resembles an answer.

Yesterday I get a call from the Gastro's office....it's probably malabsorbtion.

(HELLO....isn't that what Dad and I have been saying for 15 years????). Anyway

so far she's on iron pills 4 times a day (her tummy will just love this I know),

more and a different brand of calcium, increased dose of Rocaltrol (vit D),

acidophilus 3 times a day, yada yada..and we go back in 2 weeks to retest

everything.

She's been very lethargic and irritable so I knew something was up but figured

it was probably Thyroid. Still may be. Anyway if you have read this far, bless

you, and here is the question I have for all of you

HELP HELP (for emphasis) 's scheduled for a " UGI xray with small bowel

follow thru " .

I know we were all talking about these tests last week but I have malabsorbtion

of the brain so if those of you who have experienced this could repeat your info

I'd appreciate it. Apparently it's the barium swallow thing and they're

apparently going to x ray it thru to the small bowel? Anybody remember how much

barium gunk we have to get into them? (we did the swallowing thing when she was

7 so it's been 10 years for us.

Meanwhile we're still doing zantac, synthroid, clonidine, zinc etc. so Carol, my

fellow pharmacist, I empathize.

Any help or suggestions greatly appreciated. Oh yeah they're also gonna do some

sort of blood test that has to be sent specially to california to determine

whether or not she has inflammation in the GI tract. Anyone know about this one?

Thank you all,

wish I had a cute skirt story to tell. The only " cute " thing she is doing is

trying to pull her boobs off and has generalized it to dad while in the pool

hehe. And last Thu at gymnastics she was up to her old " grab the boys' weiners "

trick. sigh.

Sherry

[Guest guest]

Jordan has been through four barium swallow studies... each time, we fought

her to drink that nasty stuff. Although it comes in flavors like chocolate

and grape, it's still nasty and looks like liquid chalk. I think they only

need to drink 4 to 8 ounces of the stuff during the process.. of course more

would always be great but all we've ever been able to get out of Jordan was

about 4 ounces.

Judi

Re: Another Update/ and the GI topic from last

week

> HELP HELP (for emphasis) 's scheduled for a " UGI xray with small

bowel follow thru " .

> I know we were all talking about these tests last week but I have

malabsorbtion of the brain so if those of you who have experienced this

could repeat your info I'd appreciate it. Apparently it's the barium swallow

thing and they're apparently going to x ray it thru to the small bowel?

Anybody remember how much barium gunk we have to get into them? (we did the

swallowing thing when she was 7 so it's been 10 years for us.

>

> Meanwhile we're still doing zantac, synthroid, clonidine, zinc etc. so

Carol, my fellow pharmacist, I empathize.

>

> Any help or suggestions greatly appreciated. Oh yeah they're also gonna do

some sort of blood test that has to be sent specially to california to

determine whether or not she has inflammation in the GI tract. Anyone know

about this one?

>

> Thank you all,

> wish I had a cute skirt story to tell. The only " cute " thing she is doing

is trying to pull her boobs off and has generalized it to dad while in the

pool hehe. And last Thu at gymnastics she was up to her old " grab the boys'

weiners " trick. sigh.

> Sherry

>

>

[Guest guest]

<<I think they onlyneed to drink 4 to 8 ounces of the stuff during the process..

of course more

would always be great but all we've ever been able to get out of Jordan wasabout

4 ounces.>>

Aw thanks Judi....and how much barium were you wearing when it was done? This is

going to be a real fun time I can see. I can usually get an oz of something like

mylanta down her using a syringe and going in thru the side of her mouth...takes

2-3 shots....so all I have to do is eightzuple that and we'll be good? Unless of

course she needs more cause she's bigger??

Should I wear white ya think?

Sherry

[Guest guest]

Better than I would have been able to do.

Charlyne

Mom of 2 beauties wrote:

Jordan has been through four barium swallow studies... each time, we

fought

her to drink that nasty stuff. Although it comes in flavors like chocolate

and grape, it's still nasty and looks like liquid chalk. I think they only

need to drink 4 to 8 ounces of the stuff during the process.. of course more

would always be great but all we've ever been able to get out of Jordan was

about 4 ounces.

Judi

Re: Another Update/ and the GI topic from last

week

> HELP HELP (for emphasis) 's scheduled for a " UGI xray with small

bowel follow thru " .

> I know we were all talking about these tests last week but I have

malabsorbtion of the brain so if those of you who have experienced this

could repeat your info I'd appreciate it. Apparently it's the barium swallow

thing and they're apparently going to x ray it thru to the small bowel?

Anybody remember how much barium gunk we have to get into them? (we did the

swallowing thing when she was 7 so it's been 10 years for us.

>

> Meanwhile we're still doing zantac, synthroid, clonidine, zinc etc. so

Carol, my fellow pharmacist, I empathize.

>

> Any help or suggestions greatly appreciated. Oh yeah they're also gonna do

some sort of blood test that has to be sent specially to california to

determine whether or not she has inflammation in the GI tract. Anyone know

about this one?

>

> Thank you all,

> wish I had a cute skirt story to tell. The only " cute " thing she is doing

is trying to pull her boobs off and has generalized it to dad while in the

pool hehe. And last Thu at gymnastics she was up to her old " grab the boys'

weiners " trick. sigh.

> Sherry

>

>

[Guest guest]

well, ever since Jordan's esophagus surgery, she literally can't vomit... so

I don't get to wear any on me, but of course before the surgery, the

technicians got to wear it :-) As for the Mylanta, I have found that the

Orange cream is the best tasting stuff. Whenever Jordan feels like her

stomach hurts, she actually goes to the fridge gets the bottle and a spoon

and brings it to me :-)

Judi

Re: Another Update/ and the GI topic from last

week

> <<I think they onlyneed to drink 4 to 8 ounces of the stuff during the

process.. of course more

> would always be great but all we've ever been able to get out of Jordan

wasabout 4 ounces.>>

> Aw thanks Judi....and how much barium were you wearing when it was done?

This is going to be a real fun time I can see. I can usually get an oz of

something like mylanta down her using a syringe and going in thru the side

of her mouth...takes 2-3 shots....so all I have to do is eightzuple that and

we'll be good? Unless of course she needs more cause she's bigger??

> Should I wear white ya think?

> Sherry

>

>

>

[Guest guest]

Lots of praise and encouragement is needed... and I mean LOTS. I even drank

the stuff to show her that if mommy could do it, so could she. ICK.... I

wouldn't wish that stuff on anyone.

Judi

Re: Another Update/ and the GI topic from last

week

> Better than I would have been able to do.

> Charlyne

>

>

[Guest guest]

NOT WHITE> The barium is usually mixed with pink stuff. I used to wear a

cobbie type apron and put my hair up. It not only stains, sticks, it stinks

as well.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To: < >

>Subject: Re: Another Update/ and the GI topic from last

>week

>Date: Sat, 14 Oct 2006 13:24:20 -0400

>

><<I think they onlyneed to drink 4 to 8 ounces of the stuff during the

>process.. of course more

>would always be great but all we've ever been able to get out of Jordan

>wasabout 4 ounces.>>

>Aw thanks Judi....and how much barium were you wearing when it was done?

>This is going to be a real fun time I can see. I can usually get an oz of

>something like mylanta down her using a syringe and going in thru the side

>of her mouth...takes 2-3 shots....so all I have to do is eightzuple that

>and we'll be good? Unless of course she needs more cause she's bigger??

>Should I wear white ya think?

>Sherry

>

>

>

[Guest guest]

<<NOT WHITE> The barium is usually mixed with pink stuff. I used to wear a>>

Thanks for the tip Sara ....it was definitely white 7 years ago. I like pink so

perhaps that will lessen the disgust of being sat upon:-)

Sherry

[Guest guest]

<<Thanks for the tip Sara ....it was definitely white 7 years ago. I like pink

so perhaps that will lessen the disgust of being sat upon:-)

Sherry>>

That's SPAT upon sigh

[Guest guest]

Oh, when Jordan drank the chocolate flavored, it was brown. The grape

flavored was purple. Anyway, I guess each place is different. This was up

at Hershey medical center in PA.

Judi

Re: Another Update/ and the GI topic from last

week

> <<Thanks for the tip Sara ....it was definitely white 7 years ago. I like

pink so perhaps that will lessen the disgust of being sat upon:-)

> Sherry>>

>

> That's SPAT upon sigh

>

>

>

>