So Frustrated.....

[Piper2017]

had appointment with consultant today and after previously telling us that my daughter does not have an over active bladder (last year he said her problem was a short urethra + loose sphincter muscle) today he said she does have a over active bladder and to put her on solifenacin (she has previously been on oxybutinun,betmiga, ephedrine + movicol)I am wondering what kind of side effects have people found with solifenacin as she had some horrific effects from oxybutinun and ephedrine. He said if this drug doesn't work after 6-8 weeks he will do Botox on her bladder.has anyone had good success with Botox?.he did scare me by saying that sometimes the Botox makes the bladder do nothing and you then have to catheterise daily till the Botox wears off.

I have a complete tension headache from the stress of the day to be honest as we also had an appointment with a nurse that wants us to do daily bowel clear outs.

Any advice or thoughts would be really appreciated,I just feel broken at this stage we are over 5 years now seeing specialists in this field and we still have a really upset child wetting 10+ times a day

[MrsSquirrel]

No great advice. Just wanted to send you a hug. We have known there was a bladder problem from age 5 and have been seeking an answer ever since. At consultant level and also had oxybutynin, solifenicin, betemegron (even though its not liscenced, our GP told us, for children!) and movicol twice a day. Still getting up to 20 accidents a day. Night incontinent too. We also have had contradictory statements, not overactive but yes overactive. No to Botox as not overactive so would not help. Tried the bladder control exercises with machine - biodynamics - no joy as he cant isolate his pelvic floor. Waiting for TENS machine to see if that helps. He's now 10, almost 11.

We have wondered about going private (probably can't afford it though) as NHS route is so painfully slow and you never get a clear answer. What about a referral to another service - Evelina Hospital is said to be very good (London).

How long does it take for Botox to wear off? 3 months?

Sorry you're on this same long path. xxx

[Piper2017 in reply to MrsSquirrel]

Thanks for taking the time to reply,yes this is a very long and lonely path to be on....sorry that you are on it too.

He said the Botox takes 5-6 months to wear off so if it did paralize her bladder it would be a case of catheterising her 5+ times a day which would be a real struggle.

We live in Ireland...I have thought at times would it be worth going to the UK to get another opinion but it is a big deal to do that especially during the current climate.we have seen several different specialist here and we just seem to get nowhere with any of them....I'm quite down about this latest appointment and I just feel heartbroken for my daughter

[Hidden]

Some people have good results from the Botox *some I have read, have called it a life-changer*, however nobody has a crystal ball on the future. I hope you and your child can get some relief. I wrote you a message if you want to talk in more detail as well, or want to vent. Sometimes, doctors unfortunately do not know everything, and sometimes we have to figure things out ourselves.

[Piper2017 in reply to Hidden]

Hi,thanks for your messages.yeah I believe if Botox works for you it is amazing but he has made me nervous with the fact that there is a 5-8% chance that it could paralize the bladder and result in having to catheterise her multiple times a day...I mean I don't know how we would manage that with school.

I'm going to ask if he would consider PTNS first as it is less invasive

[Hidden in reply to Piper2017]

Keep us posted. I personally sometimes do intermittent self catheterization and honestly, it isn't bad. I wish no one had to do it, to be fair, but it can be really helpful for me in stopping leaks.

[Piper2017 in reply to Hidden]

The thing is my daughter is only 8 and she had a really bad experience getting catheters in for various tests and I know she would just lose her mind if we ended up having to do it daily

[Hidden in reply to Piper2017]

I can relate, I personally hate foley's but its possible I may end up needing one later. I sincerely hope she does not need them. I would weigh out the pros and cons *Not sure how upsetting the wetting can be for her, I was upset for awhile then over time I managed to adjust*, so the choice comes to you. I would say go with what you feel is best in this case. I would do the botox, personally but I am older than her significantly. It is a tough decision to make. Have you tried timed voiding? When I can't feel/tell if my bladder is full, I set a time to go when I get very busy. The doctor seems very unhelpful.

[MrsSquirrel]

How old is your daughter? How does she cope at the moment? Does she wear pads or pull ups at school? And how are the other children - does she get teased or are they accepting?

With our son, he wore pull up/pad in the morning so his maths/Eng wasn't too disrupted and then just changes clothes (takes 3 changes with him) in the disabled loo. They had a cupboard in there he could put his stuff in.

Currently we are home educating (for other reasons) but I have to say it is easier to cope with taking school out of the equation. Just a rest for all of us (but not the washing machine).

[Piper2017 in reply to MrsSquirrel]

My daughter will be 9 next month.she wears pads for school,she has an assistant that takes her to the toilet 4 times a day + helps her change clothes if needed.she wears pull ups at night.A lot of her class know she has some kind of problem as they have seen her go in & out of class a lot...most of the time the kids are ok sometimes there are comments.

Like you I never get to the bottom of the wash basket.

[Hidden]

Just a quick chime in before my run-My doctor had mentioned in some people, the kidneys or uterer *spell check* can fill more quickly, for me it seems my bladder is "perfectly healthy and normal" despite I have urge, stress, and overflow incontinence. He mentioned in some people the kidneys fill faster than normal and can cause leaks later, from what I remember. I hope both of you can find some peace and feel free to reach out if you want to chat more.

[Pte82]

Piper, I shared this with foxglove and I hope this information benefits your daughter. My wife had OAB recently and used a form of thiamine called TTFD. The product specifically was Lipothiamine but as you'll learn in the first link it goes by other names too. In less than a week using one 50mg tablet a day the urgency was gone. She continues to use it and gets a good nights rest. The first link will explain TTFD thiamine and the next link is about thiamine's role in OAB. The others help explain other important matters. Thiamine needs adequate magnesium to make it bioactive. I hope you research all the benefits of thiamine as well as it's water soluble forms. Always consult with your health care professional before using any supplement.

nootropicsexpert.com/vitami...

eonutrition.co.uk/post/thia...

eonutrition.co.uk/post/when...

eonutrition.co.uk/post/thia...