new to the support forum

[NEMOM]

My name is Cindy. My husband and I have a beautiful 3 1/2 year old girl with myloemeningocel and hydrocephelus. I found this forum wanting to get some advise on what to use after diapers.

I am looking at some type of disposable brief/pullup or something. I am pretty picky about chemicals/ petroleum but realize that may be hard to avoid. Also does anyone know about washable garmets for when we are home?

I am needing to decide on what product to go with. She usually knows when she needs to have a bowel movement and we want to encourage her to use the toilet. Diapers just do not work well for this and she is at the age where she can be cathed while sitting on the toilet. Again, diapers don't work well for this as you have to lay them down to get the diaper back on.

Any advise would be appreciated. She will need something to hold some urine as she occasionally wets between catherizations.

That also brings to mind another question. She sometimes will have a dry diaper and when I cath her I get about 120-160 ml. Sometimes she will be slightly wet, I will cath her and get only 10-50 ml. So sometimes she voids even though she had a small amount in her bladder and other times she will not void at all even though her bladder was full. No rhyme or reason. Anyone have any experience/insights?

Thanks,
Cindy

[Barb]

Huggies Goodnights work well. They are more absorbant than regular pullups and look more like underwear.

Nice to meet you!

[cutie patooties mom]

Hello Cindy,
My daughter went from diapers to pull-ups to a special pad and now she just wears undies. She just pushes her undies to the side to cath. Has your daughter had a Urodynamics study done yet to see what the function of her bladder is? My daughter has one every few years with good results. I think the leakage depends on if there is a tight sphincter muscle or not. Has her Dr put her on Ditropan or Detrol yet? Those have really helped my daughter. Best of luck with all of that. It has taken a lot of trial and error with us.
Bronwyn

[Dodger67]

Welcome Cindy

"No rhyme or reason." - is absolutely typical for a neurogenic bladder.
When will she be taught to do the cathing by herself? What is a good age for it?
I only started at about 7 or 8 years old - the whole concept was new back then. I was also only the second person in the entire country with SB to get an artificial sphincter - this was about 1983. Unfortunately it failed a year or so later due to excessive scar tissue forming around the "cuff".

[NEMOM]

Thanks for the input about what to use after diapers. I would like to know if Goodnights stay in place better, more like underwear?
:)
She is on ditropan because her bladder pressures are higher than normal. Are cmg's, etc. considered urodynamics?

When we were at CDC in February the occupational therapist discussed her learning to cath herself. She already was opening the package and holding onto the catheter and sometimes removing it. The OT encouraged us to continue to include her and encourage her to become more involved. She would like to see Kristen able to self cath by about age 5. I think the hardest part would be her learning to insert it. I suggested using a mirror and the OT thought that was a good idea.

She is a very sweet :) girl and easy going. She was 3 before she told us "NO" in a defiant way and only has a total of 3 times. Not that she doesn't express her opinion, especially to her sisters. She is just sweet and I don't foresee much struggle with her learning to self cath. That and with her being the 5th of 6 girls, we have learned lots of patience. I never pray for patience but God keeps teaching me anyway. :D So we aren't in a hurry and don't expect perfection or for her to get it right away. We know it will take a while.

Thanks,

Cindy

[cutie patooties mom]

Hello Cindy!
That is wonderful that they want to teach her at an early age! My daughter learned at 9. We made an appointment with the urologists nurse and she showed a video and gave her supplies to use. She used a mirror for the first month or two and now doesnt need it. We lived in Florida when Gabi was a baby and they said that she would start around 6 to self cath. Our Louisiana specialist told us that it would be around age 9. It must be our humid air that makes everything go at a much slower pace! LOL! I dont know what a CMG is, but it must be like a urodynamics test if they told you her bladder pressure. Urodynamics studies show bladder pressure, capacity, and the tightness of the sphincter.
Bronwyn

[rachiebaby]

Thanks for the input about what to use after diapers. I would like to know if Goodnights stay in place better, more like underwear?
:)
She is on ditropan because her bladder pressures are higher than normal. Are cmg's, etc. considered urodynamics?

When we were at CDC in February the occupational therapist discussed her learning to cath herself. She already was opening the package and holding onto the catheter and sometimes removing it. The OT encouraged us to continue to include her and encourage her to become more involved. She would like to see Kristen able to self cath by about age 5. I think the hardest part would be her learning to insert it. I suggested using a mirror and the OT thought that was a good idea.

She is a very sweet :) girl and easy going. She was 3 before she told us "NO" in a defiant way and only has a total of 3 times. Not that she doesn't express her opinion, especially to her sisters. She is just sweet and I don't foresee much struggle with her learning to self cath. That and with her being the 5th of 6 girls, we have learned lots of patience. I never pray for patience but God keeps teaching me anyway. :D So we aren't in a hurry and don't expect perfection or for her to get it right away. We know it will take a while.

Thanks,

Cindy

goodnights work i wore them for years and using a mirror works wonderfully i used to use one when i started cathing myself which wasn't till i was probably 10 or so but i think teaching her early is a great idea that way when she's at school she can use the regular bathroom i used to have to go to the nurses's room and she would do it for me till i was in 5th grade oh and welcome to the forum

[Dodger67]

I firmly believe it is absolutely essential for a child to be able to cath themself by the time they start school. To delay it past that point is a violation their dignity - which is already fragile due to their being "the gimp".

[NEMOM]

CMG must be a part of urodynamics. I know that when we go she is tested for capacity, pressures and such.

I agree that learning to self cath early would be better. Using the bathroom should be a private thing ( except when you have toddlers who always have to be where mom is. LOL.)

Cindy