Cyclic vomiting issues again

[Guest guest]

Darla,

Lucas' feeding issues started with sudden episodes of repeated vomiting. He is J-tube fed and I will let you know what I think impacts it.

1. Sleeping without head elevated at at least 30 degrees. He is a wiggler and thus can even have his head lower than his feet. This happens for him despite being J-tube fed.

2. Constipation impacts him immensely. No bowel movememts the day or two before can be seen by increased vomiting.

3. We have had fluctuating gastric emptying scans. He has gone from normal to abnormal in a couple years time. It has actually been thought that Lucas has delayed motility and therefore even though the stomach empties that does not mean it can go further.

4. If we give too much volume or give him his morning meds too fast that can trigger vomiting episodes at the beginnning of the day. We even start his drip feedings about an hour afterwards and wait at least 30 minutes after his feedings that he received during the night.

Currently Lucas is J-tube fed and his G-button is vented into a urinary leg bag. The venting on a 14-20 hours a day was just begun this year. Prior we always had an extension available so we could attach a 60 cc syringe and vent whenever he seems to be belching more or starting to reflux. Sometimes no matter what you can't be quick enough. We initially carried a roll of bounty along with us now we will carry a washcloth or bath towel with us. Also, I have seen people taking emesis basins with them. Have they considered J-tube feedings? If she has a Mic-Key button they could make it into a G-J tube that you could feed her via the J-tube at night and prevent stomach volumes being too high. They make G-J buttons that would require radiology to put in.

HTH,

Loriann

mom to 3 boys- & 12 yrs old and Lucas 8 years old with suspected mitochondrial encephalomyopathy, hypothyroidism secondary to pituitary malfunction, cortical visual impairment, abnormally slow EEG, ataxic, global developmental delay, impaired motility, GERD, J-tube fed since 4 years of age but has the sunniest disposition

[Guest guest]

I had thought Asenath was starting to do better until this week. For a

couple weeks she only vomited a couple of times but then this week she has

vomited for the last 6 days in a row. A couple of those days she has

vomited more than once within a hour to two hour period. Today, thus far,

she has vomited three times within the past hour and a half. My questions

are: What are some things you do other than keeping your kids hydrated? (I

know we have talked about this recently and was wondering about other things

to be aware of besides hydration issues.) How do you deal with vomiting

away from the house as she has had " accidents " several times in public (all

over my daughter and I at Mayo in fact)? One person mentioned recently that

their child can not seem to handle morning feeds and I am wondering how much

Asenath's morning meds impact her. It seems that she will vomit within an

hour or two following her morning meds. I have tried different things to

try to see if it would make a difference, to no avail. She takes 6 meds in

the morning after her night feeding. (She takes three cans of pediasure over

night at a rate of 90 ml. per hour so not fast and has been doing so since

March of 2003) BUT she takes 4 meds in the afternoon and 10 meds at night

time with no vomiting! I have been wondering how much the night feeds

combined with the meds contribute to the problem. Even when I have given

her less pediasure at night she will still vomit though. She only started

vomiting this past May and the only change has been Vit. E (which doc says

shouldn't cause this) and more energy and activity. Has anyone else seen

vomiting that all of a sudden begin like this? Do you think there is

anything I can do to stop the vomiting? I am actually starting to think

about NO morning meds to se if it helps! Any help is appreciated. This

issue really has me frustrated!

Darla: mommy to

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

hypotonicity, disautonomy, SID, dev. delays, asthma, chronic vomiting...

Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach

issues, disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping syndrome...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), &

Marquis (2) (some with Mito symptoms)

[Guest guest]

Darla,

I don't know if she is on periactin but this has completely

stopped 's CVS. Hope she feels better.Head elevated while

sleeping would help too!

Dawn

[Guest guest]

I have a Bissell handheld mini carpet cleaner. It sure comes in handy for those times as well as tube feeding spills. Loriann

[Guest guest]

Unfortunately, I really can't be any help on this one. My

question is, since you mentioned vomiting in public, how do you deal

with it in carpets? What do people do? I wasted 2 hours this weekend

cleaning up messes. There must be an easier way. I'd really like to

get rid of the carpet in the bedroom but we can't afford to put

anything else down right now.

When Sheldon seems to be vomiting more, I try to be so careful

about how much he eats and drinks and he can't tolerate pedia sure at

all at those times. We're going to Boston at the end of the month to

see a GI doc about dysmotility issues.

I had

thought Asenath was starting to do better until this week. For

a

couple weeks she only vomited a couple of times but then this week she

has

vomited for the last 6 days in a row. A couple of those days she

has

vomited more than once within a hour to two hour period. Today,

thus far,

she has vomited three times within the past hour and a half. My

questions

are: What are some things you do other than keeping your kids

hydrated? (I

know we have talked about this recently and was wondering about other

things

to be aware of besides hydration issues.) How do you deal with

vomiting

away from the house as she has had " accidents " several times

in public (all

over my daughter and I at Mayo in fact)? One person mentioned recently

that

their child can not seem to handle morning feeds and I am wondering

how much

Asenath's morning meds impact her. It seems that she will vomit

within an

hour or two following her morning meds. I have tried different

things to

try to see if it would make a difference, to no avail. She takes

6 meds in

the morning after her night feeding. (She takes three cans of

pediasure over

night at a rate of 90 ml. per hour so not fast and has been doing so

since

March of 2003) BUT she takes 4 meds in the afternoon and 10 meds at

night

time with no vomiting! I have been wondering how much the night

feeds

combined with the meds contribute to the problem. Even when I

have given

her less pediasure at night she will still vomit though. She

only started

vomiting this past May and the only change has been Vit. E (which doc

says

shouldn't cause this) and more energy and activity. Has anyone

else seen

vomiting that all of a sudden begin like this? Do you think

there is

anything I can do to stop the vomiting? I am actually starting

to think

about NO morning meds to se if it helps! Any help is

appreciated. This

issue really has me frustrated!

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures,

G-tube,

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

vomiting...

Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma,

trach

issues, disautonomy, hypo & hypertonicity, migraines, possible

seizures,

dumping syndrome...

Luke (16), Leah (14), Rachael (12),

Isaac (10), Tirzah (7), Kezia (3), &

Marquis (2) (some with Mito

symptoms)

Please contact

mito-owner with any problems or questions.

Yahoo!

Groups Sponsor

ADVERTISEMENT