Absolutely devastated

[Piper2017]

my daughter went for cystocopy today and they discovered that she has a short urethra which is affecting her sphincter hence the fact that she leaks urine all day long and basically the consultant said that there is only ONE drug that might help her (we tried to get it on way home from hospital and were told they will gave to try +get it from Europe and it might take 10 days and it's €400+ a month)and if this drug doesn't work there is nothing else they can do for it and MAYBE there is a possibility that her urethra will grow as she ages???.....has anyone been in this situation I feel truly heartbroken for my girl that she may well be like this for the rest of her life.

[Charlie5angel]

Oh my lovely, I really feel for you and your daughter, it’s really hard to hear when they give you news like this, I’m really surprised that this is all they offering your daughter, surely there must be something else they can do, as for the medication, I cannot believe that is something you may have to pay for! Surely this is wrong, it’s not fair to of gone through all this for very little, all I could suggest is getting a second opinion to see if whether someone could offer another solution to her problems, bless her heart and yours, it’s so much to deal with, if you ever need to talk, I’m always here, we know only too well how hopeless things can feel at times but I have done a lot of fighting and pushing for my daughter to get where we are today, keep fighting and keep strong for her, look after yourself and take care xxx

[Livinonaprayer]

I am so sorry to read this.

You must be finding this bombshell incredibly difficult.

If you do manage to get the medication it might be worth seeing if you can get it with a prescription prepayment certificate. My Dad did this when he was having treatment that was very expensive and it saved him thousands. It was something like £100 for a year. It was a few years back though so I’m not sure if things have changed. You can look online or call them on 03003301341.

I hope this helps a little.

You are in my thoughts and I will be hoping for some positive news to come your way.

[Piper2017]

Thanks for your reply,I'm in Ireland so we don't have the same thing with chemists as you do in the UK.if the drug would work for her I'll find the money somehow.its just the fact that it's unlicensed and seems to have some major side effects,I will have to take her to Dr twice a week as it can give you high blood pressure,it's called Ephedrine Hydrochloride- I don't know if anyone has had any experience with it?.

I know I should be looking on the positives that they didn't find something wrong with her kidneys and that she needed to go on a transplant list or something even worse.

I just didn't expect it to be so final I mean consultant said if this drug doesn't work no other medication will and that if her urethra doesn't grow as she grows she will be incontinent for life.

[Slice]

How old is your daughter? Is she old enough that she can (with perhaps some occasional guidance) manage this herself? I am no medical expert but this seems a little leery to me. Ephedrine HCL is typically used in patients with low blood pressure issues like orthostatic hypotension (BP drop with sitting or standing up). Pseudoephedrine is related to Ephedrine HCL and is the active ingredient in Sudafed. This drug is now strictly controlled in the US because of the ease of making methamphetamines from it. Before you make any decisions, I would seek out a second opinion and get the medical files from the other doctor(s) involved to take with you. Check out these articles I found: en.wikipedia.org/wiki/Ephed...

differencebetween.net/scien...

There are other possible options here as well. First is that she can learn how to use protection such as Drynites or other pull on protection. If she is around 9 or 10 there should be no reason why with a lot of guidance and support she cannot manage this herself. So far as school is concerned, you need to get together with her school(s) and get them involved. Most likely they be happy to help, especially if this is a documented medical issue. Things like providing her places to change and clean up and arranging it with her teacher(s) that she can leave her class whenever needed to change. Yes, she will be troubled with it from time to time, but the more independence she has to cope with this (if able) the more it's likely to help her and her self esteem as well as accepting what's happening. If at some point it's clear that further growth is not going to help, you might want to look into the possibility of her having a urostomy. It would be much easier for her to deal with, keep discreet, and if cared for properly would significantly lower her risks for UTI's. As I have said this, there is also the issue of whether she has any physical or intellectual challenges that would preventing her from managing this on her own. Lots of luck to you and I hope things will work out.

[Piper2017 in reply to Slice]

Slice- my daughter is 7 years old.she has assistance in school and they help her with changing of continence pads every hour and she is allowed to leave the classroom at any point if she needs to go more than once an hour.

We were told that the point of the medication is to strengthen the sphincter muscle to give her some control. I discussed it with the pharmacist who said she has been prescribed a very low dose and it's perfectly safe.i feel it is worth trying her on the meds to give her a chance of being dry as currently she misses out on so many social things,play dates etc...as she wouldn't last more than an hour without needing changing.

It's a hard road she is on but we have to try whatever options we are given.we have seen numerous consultants over the past 4 years and it's only now they have actually found out what her problem is.

[Slice]

Piper, I had some more thoughts on this. If this finding means that she is going to be incontinent of bladder, you'll want to do what you can to help her take charge of this herself. Obviously, there will be boundaries set up by you, but the sooner she can start learning to manage this herself the sooner she will come to accept that this is part of who she is. That can go a long way in terms of helping her deal with the reactions of other kids/people. Look at it this way, having this anatomical problem with her bladder and urethra is no different than someone who has a birth defect that affects an arm or leg. Yes, she's different, but everyone is. No two people are the same, not even identical twins. At 7, she will still need a lot of guidance and reminders, but the sooner she starts learning all aspects of this including remembering to check to see if she needs a change, the sooner she will begin to accept that this is just a part of who she is. Maybe not right now, but perhaps in the near future, she can, with the help of you or her teacher, talk to the kids and explain what is happening with her. If they understand that what's happening is something that she really can't help it might help. Her talking about it with you or her teacher there will assure that they understand that this is true. It also takes the mystery out of it for them. The key thing here is the word empowerment. It goes a long way. Good luck!

[Piper2017 in reply to Slice]

She does manage changes of pads/pants etc for the most part herself.she has decided that she doesn't want the class to know her problem and I support her decision as bullying is already an issue.she has a few close friends that she has trusted her secret with and they are supportive.

At the moment I don't want to take away her hope and tell her she has a life long problem ahead of her.she is just aware that we are trying this new medication and hoping that it helps her.so far her blood pressure has maintained in the normal range so hopefully she is not going to suffer the bad side effects.

My main thing is to give her coping skills and am thinking that play therapy with a psychologist to help her cope with bullying over her incontinence is a good way to go.its all about building confidence and support in the long run.

[Slice]

Yes, that's why I said perhaps sometime later. Kids at 7 or 8 are too young to really grasp the reality. Sometimes that bullying can be a way of saying that it makes them uncomfortable. Remember that this is still an age where there are kids who still have troubles with bladder control without medical conditions involved. It's still somewhat of a time of either you do or you don't in terms of day or nighttime accidents, and legitimate reasons aren't a part of that at this stage. Certainly to be more likely than when they are even 10 or 11. I would think that in another 3 or 4 (even 2 to 3) years from now their maturity would have improved enough to understand and to have more compassion about it. More ability to not see things so "black and white" (either it is or it isn't). Too bad you couldn't set up something like this play therapy one day (with a professional) to work on this with the whole class. That could also help end the bullying in a positive way rather than by discipline. Like I said, the bullying at this age I would think is more of a bad way of saying that this creeps them out. That and wanting to fit in with the crowd. Heck, even teens have trouble understanding how much their teasing and bullying hurts another person. To see what I mean, here's a huge homework assignment for you (no time limit). LOL There are two books written by Jodee Blanco and her experiences with bullying and her going into motivational speaking. The two books are "Please Stop Laughing at Me", and "Please Stop Laughing at Us. There's a small bit about an exchange with her worst tormenter 20 years later (and dreading it) only to see this woman in tears. She had absolutely no recollection of what she had done. They are two very powerful books, and at one time were actually required reading in many schools. Anyway, My best to both of you. A huge cyber hug to you and to your daughter.