hi im new here and need sum help plz

[ROZALIND]

hi im a mother of a 5 year little girl wi sb and hydrocephalus my little girl has been dry since she was about 2 year old with the help oxybuytin think thats how u spell it lol and has been intermitent cath 3 hourly since she was 3month. in the last few months shes had the odd day where she was wet then for the last few wks she has been wet and has had a uti which she hasnt had 1 since she was bout 2 she has a new support worker at school who is doing her cathetar, the nurses at the hospital suggested her bladder wasnt empty properly so i changed to a diff cath which worked ova the wkend then as soon as she goes back to school she is wet again no 1 seems to care and isnt helping me im at my wits end im so worried bout her. i dont know if she needs her medication dose put up to stop the bladder spasms or if she needs a bigger cath size or its the cold thats making her wee then im thinking is it the support teacher but then i dont think it cud be cos i had done her cath a 8am at home then she was wet by 11am which is when her next 1 wud be due just after break time so she had been out in the cold so didnt know if it was that everythings running threw my head i dont like her wearing nappies for school cos she gets all embarrassed sorry im rambling on but plz sum1 help me

[LisaJoy]

Hi, Rozalind-- welcome. First my disclaimer -- I'm an adult with sb and have never been a mom. The moms on this forum probably have better advice than mine, since I've never dealt with a child's urinary problems and don't remember my own at that age! Did you get to see the urologist, or only the nurses? I'm not dissing the nurses, just thinking that the next step is to see the specialist. Also, keep this in mind -- any time there is a marked change in function in a person with sb, a neuro consult is justified to rule out tethering.

I'm sure you'll get some more feedback here soon.

Lisa

[Summer25]

Has she seen a neurosurgeon lately? Sounds like tether cord.

[Dodger67]

It could also be an inadequately trained caregiver at school. Have you personally checked how it is done there?
The only real permanent solution is for your child to learn to do her own catherterising ASAP! 5 years is rather old to still need help unless there are other factors involved.

[smoop]

Whenever there are bladder & bowel changes then tethered cord should be considered. I would chat with your urologist-- maybe have more tests run to see if there are any changes going on with urodynamics.

Whenever Analise, my 3 year old, starts leaking she has a UTI. Always a tell-tale sign for her. But in the back of my mind I'm always wondering if tethered cord is to blame so I have her urine checked.

Has she had her meds increased lately? Possibly it's time to change her dosage? Just a thought... Hope that all goes well for your child.

[angel]

i don't know about cathing a child but i know when my child leaks it is because his bowels are impacted

Angel

[ROZALIND]

Hiya thanks for all the replys, i have sent nurses in to make sure the support is doing this correctly i did go in myself but my daughter wanted me to do it and shes quite determined so wudnt change her mind. It was the nurses i spoke to but they then went and disscussed it with the doctor and he said the only thing he could think of was that the bladder was not getting emptied properly. Im now a bit worried with the fact it might be a tethered cord wot is this? and why would she get it? and what other symptoms would it involve she had an xray of her back not long ago and shes got slight curvature but nothing else was mentioned. Also my daughter has just turned 5 so i dont think she is old enuf yet to do her cath herself but maybe this time next year she will be doing this. thanks again for getting back to me.

[Dodger67]

Tethered chord would show up with just about any neorological symptoms - any change in the "detail" of her paralysis, back pain or persistent headaches. It can't usually be detected with ordinary x-rays, it takes an MRI scan or a myelogram. The topic is quite well covered elswhere in the forum.

I really must disagree with you about her self catherterising; unless there is a real extenuating circumstance she is old enough to start learning. The point of self cathing is that it eliminates the risk of her getting a UTI from someone else's germs.
Her immune system is pretty much "used to" her own germs which lowers her risk hugely. I have had the same colony of "tame" staphlococcus living quite happily in my urinary system for well over 30 years.

[angel]

I agree with dodger. I know it sounds young but i was doing it myself at that age as well. You would be surprised at how much easier it will be for your child to accept it and adapt to it when you start working with them in the very young years. At that age they want to do everything anyway, help clean and put on their own clothes and shoes. This is just another one of those things that will become just as routine to them as putting on thier shoes. By that age I had to be in school and had to be self sufficiant because there were no nurses or aids.

Angel

[LisaJoy]

Here's a tethered cord link that I posted elsewhere:

http://neurosurgery4kids.net/tetheredspinalcord.htm#signs

Note under "myelomeningocele" where it highlights changes in urinary continence and scoliosis as common signs of tethering. X-rays won't show it; she would have to have an MRI.

Basically, everyone with sb experiences tethering to some extent, so you always have to watch for signs, especially in children who are growing.

I don't mean to be alarmist, but I really think a neuro consult is in order.