My 12 Year old daughter getting cysto and hydro

[saltire]

Hi,
I would like advice about how you all feel about children getting the cysto and hydo done. My daughter is 12 and has had probs for the last 2 + years. It is very frustrating as we don't know whats wrong. We are at a point that her Urologist thinks we need to look. I do agree but i am scared of her getting this done. I hope we get some answers but i wish we could find them out some other way. She has been seeing different docs to rule out other things. It looks like it could be IC. She has other ailments too like joint pain, migraines, allergies, gastro probs. After reading further about IC I see that these can go along with it.
She has had pain and what we think are bladder spasms for a long time. She is on Dirtopan XL and Cardura. Not sure if they even help to be honest. The only thing we can say for definate works is Pyridium. I would appreciate any help with this.
Saltire

[vm]

Has she had an in office cystoscopy (without the hydrodistension)? Meaning, have the doctors been able to see inside the bladder yet to rule out any obvious problems other than IC?

If it was me, b/c this is so individual and we could never tell you what to do for your daughter, I would rather my child have the Potassium Sensitivity Test. If you're not familiar with that procedure, here is a little bit about it:

Following this, we administered a potassium sensitivity test (PST) to better identify bladder involvement in chronic pelvic pain. The PST can help diagnose patients who may have IC and/or a damaged bladder lining. Two solutions are instilled into the bladder (H20 and KCL) to check for sensitivity to either of these solutions. Water usually does not cause any reaction (though sometimes it does). If a patient reacts to the KCL solution, that suggests that their bladder wall is damaged and that they may be an IC patient. (link here to KCL info) If patients have any reaction to the potassium, then a third "rescue" solution containing heparin and an anesthetic (lidocaine) is quickly instilled into the bladder to relieve any symptoms the potassium may have caused. Some feel that the test might be unduly painful or uncomfortable. At Scripps Clinic, we take care to recognize any reaction to potassium quickly and stop that part of the test immediately if a reaction occurs. We have found that the test really only causes minimal discomfort, especially when compared with the classic diagnostic test for IC - cystoscopy with hydrodistention.

http://www.ic-network.com/guestlectures/kahn.html

I have had the cysto w/ hydro, it's how I was diagnosed and I did fine afterwards, but physicians seem to be moving away from using that procedure. Sometimes it does not show the "telltale" or "hallmark" signs of IC - even when the person does in fact have IC. It can also show the "signs" doctors look for in IC even when the person does not have IC....

The other thing is that she would be under general anesthesia for the cysto w/ hydro so wouldn't know what was going on and might not be as embarassed about the procedure and medical folks having to do things in that area. She would be awake and very aware during the potassium sensitivity test, but the procedure normally only hurts when the potassium is instilled and then they put a rescue instillation in so the patient is not in discomfort for long. The recovery from a cysto w/ hydro can be a few weeks.

Honestly, I would read as much as you can about the two procedures. You can search the entire ICN at this link:

http://www.ic-network.com/search.html

Just make sure you select it to search the ICN. But read as much as you can and then go with your gut feeling. I can't imagine making the decision for my child. Good luck.

[L. Thomas]

Is your urologist a pediatric urologist? I feel sure there is a subspecialty for children. Could you maybe check with the children’s hospital in your area and see if you could get a second opinion? 12 seems so young . It makes sense to me that a 12 year old would have special medical needs.

I know as a mother my concern would be “what positive outcomes will we see from this procedure?” I would want to have my uro explain what the test will show and how the test would help. I am sure that there aren’t that many children that he has evaluated with cysot-hydro.

[leelee88]

I agree with Kim on this one.. Having a Hydro/cysto was very very painful...

[saltire]

Thankyou all soo much,

Thankyou all so much. My daughter is to be having this done tomorrow, I have looked up loads and loads of stuff about it all. She has been seeing a Pediatric Urologist for over 1 year. She is a very good doc. We have tried loads of things to help, but she is still getting the pain. My daughter wants to have this done in the hoping it will tell her whats wrong. She has a hard time with this. They have not done the potassium sensitivity test tho, although her doctor has talked about it. I am really not sure it's something she could go through. She had the Urodynamics testing done and it was awful for her. The good thing about this next test is that she will be under a general. She would not let them near her otherwise.
Her doctors wanted to check out EVERYTHING they could 1st, i actually asked them about IC because i read about it online, but they were not willing to go that road at that time. Now they feel there is a good chance this is whats wrong. She has an appointment for a neurologist next if this doesn't tell us anything. I just feel so bad for her, she has been going to lots of different doctors, she has even seen a gynecologist to make sure everything is ok there. I hate she is going through this so young. I too had problems when i was a child. I still do. Never been properly diagnosed with IC but it seems i prob have it. Have you ever heard of it being hereditary? I feel quite scared about the side effects and things that can happen, like i have read about the bladder rupturing or the worse pain afterwards. Her doc told her that if it is IC in some patients getting this done actually can help a little.
Thankyou for your quick replies. Saltire

[smcclafferty]

There was just an article in the April Woman's Day magazine where two sisters developed the disease, so it is possibly hereditary...

[kadi]

Hi Saltire,
I have IC, so do my mother & grandmother. In our family, it starts younger each generation. My grandmother got it at 70, my mom around 60 & me at 35. There is a genetics study being done at the University of Maryland, so if it turns out that you & your daughter have it, you might consider participating in that study.

I don't know what to tell you on your daughter's cysto/hydro or potassium test. That's a tough decision, & like vm said, you'll want as much info as possible.

Have you tried modifying your & her diets? Many patients find relief from eliminating acidic foods & ingredients. The diet is available in the patient handbook section of this website.

Hang in there, thinking of you....

[ICNDonna]

It sounds like you and your daughter have pretty well decided to go ahead with the cysto/hydro. I hope it goes well for her and that she will be among those who have relief from symptoms for many months following the procedure. After my first one, I went a full two years with very little discomfort.

I know it has to be very difficult to see your child in misery. Those first few times she urinates after the procedure are going to hurt, but after that it isn't usually too bad. When I have a hydro I plan on taking it easy for a few days. I do think you should probably be sure to have some pain meds to give her for a few days just in case. She may not need them, but better to have some on hand. I usually don't need any beyond the first day or two.

Please be sure to let us know how she is doing.

Warm hugs for both of you,
Donna

[kadi]

Oops, sorry, I didn't answer part of your post. Everyone's experience is different, of course, but my experience with the cystoscopy/hydrodistension was not bad, either.

I was relieved to have pictures that showed what my bladder & IC looked like & the post-surgery recovery was pretty simple. I had the cysto/hydro done on a Wednesday afternoon, went home that evening, needed pain meds only on Thursday & went back to work the following Monday, pretty much the same as I felt before I had the procedure done. The cysto/hydro was for me, the validation that my illness was real & treatable.

After that, I worked really hard on learning my dietary triggers, tried various oral medications, then eventually learned home instillation treatments. I can say that today, my life is pretty good. I work fulltime as a teacher, attend church, have hobbies, go hiking, do yoga, travel modestly. I do still have flareups, but my "bad" days today are what my "good" days were 3 years ago. I have a pretty happy life overall.

While this is very hard, I just want to encourage you to give your daughter hope for her future. IC is a great challenge, but can be overcome, one day at a time.

[Berkshire Road]

I just wanted to say, I have a twelve year old daughter also; she does not have IC, but she does have asthma and diabetes, and about two years ago she had to have hip surgery, so I guess I just want to say that I sympathize with you, I know how you feel, and I'm sorry anyone has to go through something like this. It is so much harder to see your children suffer, than to suffer yourself, isn't it?

Good luck to you and to her, and please let us know how everything goes after the procedure so we can all let out our breath!

[saltire]

Thankyou so much everyone

Thankyou so much everyone, I will definately let you all know how she gets on today. I really hope she doesn't have IC but I hope this can give us some answers whats causing all her pain. I will post later tonight, thanks again for the support, it really helps.
Saltire

[saltire]

she got it done

Hi,
Well my daighter got it done yesterday, still not exactly sure whats wrong. The doc said when she stretched out her bladder she had signs of IC, the broken blood vessels in the bladder walls, but that she had an unusually large bladder for someone with IC. They treated her for IC since she had some signs, they mixed a cocktail ( as the doc put it) and it sat in her bladder for 20 mins then they emptied it. They said hopefully it will help her. They said there was no inflammation either, which is good. WE have to keep a log and go back in a couple of months. She had a hard time yesterday but is doing much better today. The doc said that diagnosing IC is all really ruling out everything else. Plus some of the signs within the bladder. Does anyone know if you can get those broken blood vessels if you don't have IC?
So glad that test is all over, it was a hard day for both (mainly) my daughter and me.
Saltire

[ICNDonna]

It's possible to have the pinpoint bleeding and not have IC. It's also possible to have a normal, or larger than normal, bladder and still have IC. I very much hope your daughter doesn't have IC, but it's definitely a possibility.

Is she on an IC diet? If not, I think it might be a good idea to give it a try for a while. Some people with IC find that single step works very well for them.

Sending warm hugs,
Donna

[saltire]

Motrin

Hi,
Yes my daughter has been trying to IC diet, there are a couple of things that effect her, we are still working on finding the things that do bother her. I was wondering if anyone ever has problems taking Motrin? Both me and my daughter can't take it or we have pain when we go to the bathroom after it. It makes us very uncomfortable. Also my daughter does not have the urgency so much, more the pain and discomfort. I do go to the bathroom a lot.
Saltire

[saltire]

Oh i forgot

I also wanted to ask how often any of you are using Pyridium? My daughter has it "as needed" but the doctor said to use it periodically. She would use it almost everyday sometimes if i let her, i am worried about letting her have it as i am afraid of the side effects on her. We try baths and tylenol before the pyridium if she is at home. It is the only thing we can definately say helps her with her pain.
Thanks Saltire