Zipporrah's gastric emptying testand cat scan

[Guest guest]

This morning we did a gastric emptying test on Zipporrah and as

expected it showed major dumping syndrome. I only know what the techs said

thus far but know that by the time the first scans were taken, the formula

was already into the colon and all gone by the second scan. With all the

symptoms she has been having since she was abot 2 months old we knew

something was wrong but until last month when her ped suggested the sweaty

hands/feet could be dumping syndrome, we didn't know what was going on. She

still has several other tests to do in July to get the whole picture of her

gastro issues, but it seems like we are already getting some answers. Yeh!

The cat scan today was hard as they had to try 5 sites before getting a

vein. they mentioned that it seemed that her veins were not filled well.

Has anyone dealt with this? One experienced tech suggested the problem was

that they can see the veins well and get the needle into the vein but no

blood flows so they assume they are not in the vein anymore and start

prodding more only to lose the vein or break it/infiltrate it. We has had

problems placing IV's in her since she was 2 months and everyone has

commented on the difficulty but not known what the problem was. Many of

them say her veins are so tiny or not straight enough, but I think the tech

today made a lot of sense! Once the IV was in it was a snap as she totally

shut down and fell asleep from the stress, so at least the scans will be

clear.

Asenath has the gastric emptying scan tomorrow and an x-ray for

starters and then will be doing more gastro checks in July to figure out why

she keeps vomiting. Hope we get answers for her too!

We got into the Mc House a couple hours ago so we have

computer access now thankfully. We had a waiting list for the last few

days, so it's nice to be here now. I would appreciate all your prayers for

the girls, especially that Asenath will cooperate tomorrow for the scans and

not be crabby being in the waiting room for 4-5 hours.

Darla: mommy to:

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy,SID, dev. delays, asthma

Zipporrah (7 mon.) Mito, strokes, SID, G-tube, asthma, trach issues,

disautonomy, hypo & hypertonicity, migraines

and the gang

[Guest guest]

Darla--

Sending prayers your way.

Kim - Mom to and Lindsey

>

> This morning we did a gastric emptying test on Zipporrah and as

> expected it showed major dumping syndrome. I only know what the techs said

> thus far but know that by the time the first scans were taken, the formula

> was already into the colon and all gone by the second scan. With all the

> symptoms she has been having since she was abot 2 months old we knew

> something was wrong but until last month when her ped suggested the sweaty

> hands/feet could be dumping syndrome, we didn't know what was going on. She

> still has several other tests to do in July to get the whole picture of her

> gastro issues, but it seems like we are already getting some answers. Yeh!

> The cat scan today was hard as they had to try 5 sites before getting a

> vein. they mentioned that it seemed that her veins were not filled well.

> Has anyone dealt with this? One experienced tech suggested the problem was

> that they can see the veins well and get the needle into the vein but no

> blood flows so they assume they are not in the vein anymore and start

> prodding more only to lose the vein or break it/infiltrate it. We has had

> problems placing IV's in her since she was 2 months and everyone has

> commented on the difficulty but not known what the problem was. Many of

> them say her veins are so tiny or not straight enough, but I think the tech

> today made a lot of sense! Once the IV was in it was a snap as she totally

> shut down and fell asleep from the stress, so at least the scans will be

> clear.

> Asenath has the gastric emptying scan tomorrow and an x-ray for

> starters and then will be doing more gastro checks in July to figure out why

> she keeps vomiting. Hope we get answers for her too!

> We got into the Mc House a couple hours ago so we have

> computer access now thankfully. We had a waiting list for the last few

> days, so it's nice to be here now. I would appreciate all your prayers for

> the girls, especially that Asenath will cooperate tomorrow for the scans and

> not be crabby being in the waiting room for 4-5 hours.

>

>

> Darla: mommy to:

> Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

> hypotonicity, disautonomy,SID, dev. delays, asthma

> Zipporrah (7 mon.) Mito, strokes, SID, G-tube, asthma, trach issues,

> disautonomy, hypo & hypertonicity, migraines

> and the gang

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

Darla my thoughts and prayers are with you and your precious babies. Lots of Luck tomorrow. Jennieknovy4@... wrote:

Darla--Sending prayers your way.Kim - Mom to and Lindsey> > This morning we did a gastric emptying test on Zipporrah and as > expected it showed major dumping syndrome. I only know what the techs said > thus far but know that by the time the first scans were taken, the formula > was already into the colon and all gone by the second scan. With all the > symptoms she has been having since she was abot 2 months old we knew > something was wrong but until last month when her ped suggested the sweaty > hands/feet could be dumping syndrome, we didn't know what was going on. She > still has several other tests to do in July to get the whole picture of her > gastro issues, but it seems like we are already getting some answers.

Yeh!> The cat scan today was hard as they had to try 5 sites before getting a > vein. they mentioned that it seemed that her veins were not filled well. > Has anyone dealt with this? One experienced tech suggested the problem was > that they can see the veins well and get the needle into the vein but no > blood flows so they assume they are not in the vein anymore and start > prodding more only to lose the vein or break it/infiltrate it. We has had > problems placing IV's in her since she was 2 months and everyone has > commented on the difficulty but not known what the problem was. Many of > them say her veins are so tiny or not straight enough, but I think the tech > today made a lot of sense! Once the IV was in it was a snap as she totally > shut down and fell asleep from the stress, so at least the scans will be > clear.

> Asenath has the gastric emptying scan tomorrow and an x-ray for > starters and then will be doing more gastro checks in July to figure out why > she keeps vomiting. Hope we get answers for her too!> We got into the Mc House a couple hours ago so we have > computer access now thankfully. We had a waiting list for the last few > days, so it's nice to be here now. I would appreciate all your prayers for > the girls, especially that Asenath will cooperate tomorrow for the scans and > not be crabby being in the waiting room for 4-5 hours.> > > Darla: mommy to:> Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, > hypotonicity, disautonomy,SID, dev. delays, asthma> Zipporrah (7 mon.) Mito, strokes, SID, G-tube, asthma, trach issues, > disautonomy, hypo &

hypertonicity, migraines> and the gang> > > > > > Please contact mito-owner with any problems or questions. >

[Guest guest]

Darla,

Well it seems you may be getting some answers for Zipporah. Hopefully now they will be able to treat her better, making her more comfortable. As far as the IV goes, they have a very hard time with Grace. Even with blood draws it usually takes a couple sticks before they can get it. We have been there for hours on some days, trying to get essential bloodwork that cannot wait. From what it seems to me, the blood starts to flow and then just stops. If they do not pull out soon enough her vein will blow. Nobody really knows why this happens to her, but it does seem to be getting a little easier as she gets older. I do know of a few people at the hospital that are used to her, so we look for them to do her bloodwork. For anethesia she must have an actual anethesiologist doing the procedure so there new protocol for her is to give her the gas first, then try the IV once she is asleep. We also make sure she is well hydrated and has a full belly when she goes for blood, it opens the veins more. Another tip, but it seems cruel, Gracies foot is usually the easiest to use. I hate when they have to resort to it but it does work. Best wishes.