Severe Stomach Pain

[gillian]

Harriet is having terribly painful stomach gripes and her parents are wondering if any of the families have ideas to help.
I found oxepam helped Kristen and the avocado a day.
WE woudl be grateful for any ideas.
Gillian

[rettone]

I am interested in any girls who have a G-tube and have reduced discomfort/pain by venting via the tube? Any feedback apprecaited.

[gillian]

Colic in the lower bowel is very common in RS, especially in girls who swallow air. You can give products with simethicone to remove air from the stomach, but once it enters the bowel, it can only be expelled as gas. Often, the abdominal x ray shows the entire colon full of gas and stool. VERY painful. Girls with a gtube can have the air "let out" by the tube but it often just builds up again. Best things to do are MAKE SURE THE GIRL HAS A BOWEL MOVEMENT EVERY DAY OR EVERY OTHER DAY. ON THE THIRD DAY WITH NO BM, GIVE AN ENEMA. Avoid gassy foods. Don't give too much liquid with a meal -- this can cause gulping of air which just adds to the problem. Give small amts of fluid with the meal, and the remainder when the meal is done. To avoid constipation, we recommend Miralax, a colorless, odorless, tasteless powder that can be mixed in fluid. The generic name is Glycolax. Do you get it there?

Massaging the abdomen may give some comfort, but it is such a truly painful condition. Lying her on her left side to expel gas sometimes helps, or getting her on her knees.

[rettone]

Hi All, An update on Sarah. She had a peg placed in Jan this year, she now has her Mickey button and I can plug an extenstion in and vent her gas out, it no longer goes to her bowel.....She has 90% less dis-comfort these days, which is so so great, she was in so much pain so much of the time. People at school and respite did not believe and even her gastro doc that she had so much air, took me 6 yrs to convince the doc to do g-tube!!!............Her pain meds were no longer working well enough as she had been using them for so many years.....apparently it was behaviour according to some of her docs and carers at respite!! Well all have noticed such a dramatic change in her:)...she can concentrate much more, she is starting to use switches etc...so good to see:)
Air swallowing can be so undetectable as she is venting every 15-30mins and everyone is suprised at how much air she has swallowed in that time and they didn't even know or see it.
It is labour intensive but that is what works for her and her is what matters......Yes i've had a job getting all involved in her care to co-operate!!...But in the end they have found out that the 2-3 mins it takes to vent her so out-weighs the irritableness, pushing, groaning, crying, fussing, screaming, biting herself, hitting herself, not sleeping well, crying after food/drink....have i missed any?.............
I still cannot believe it took so many years to get this for her, i had providing all the research and evidence of other rett girls having tube placement for gas venting and still took all this time, I think Sarah should be commpensated for all the un-nessecary years of pain and missed times in life because of it....................Due to the in-competence of DHB practioners...mmm

Anyhow that's my update, sorry for the venting(excuse the pun!!)...but i do really really hope that NO other Rett girl/lady should have to go through what Sarah has with this.....

Lisa & Sarah, nearly 16!

[SilentAngel's Grandma]

Hello to everyone, I hope you are all well.

I cant remember how old Harriet is but i wonder if she might be of the age of pre-menstrual pains which some girls have quite severely. If so 'Nutriway' Primrose Plus is a natural product in capsule form. Marketed through Amway, take a look at the website (a2k) there is a health consultation page where you can ask questions and get personal suggestions. Worth a look if it seems appropriate.

If she still to young they might have some other suggestions. I went to look myself but the site is currently temporarily down.

much love
Lyn