Trying different treatments

self-cathing key


 

blue_sc_func That was in first grade. I remember exactly, cause I was like, “What you do ? How am I going to do this at school without anyone noticing? Can we make it like the kind of lizard that blends in or something? Like a chameleon? So it’s just like I’m pressing my legs?” …I did them at home instead.

 

Meghan, age 8

 

yellow_sc_ana Nothing really seems to help
They always thought, “Oh, you’re seven, you will grow out of it.” “You’re nine, you will grow out of it.” So they always thought I would grow out of it and I never did. I’ve tried every medication possible, different combinations, and nothing really seems to help…The meds would seem to help for a period of time, a short period. So it would be like, “Oh, okay, it’s finally hopeful!” but then they would just stop working… We’re all hoping that it will sort of resolve itself. I am starting with physical therapy again…I went to the first evaluation but I haven’t really done anything yet. It’s going to be Kegels and then pelvic floor and hip strengthening. My pelvic floor is very weak, I guess. So I am going to be doing to that and see if that helps at all.

Jenna, age 16

 

yellow_sc_ana It wreaked havoc on my system
Whenever I’m on a certain antibiotic, I never get infections. From the time I was a baby until the time I was eight, I didn’t get any UTIs. I wasn’t really on any medicines; I was on a prophylactic antibiotic, that’s about it. And then that antibiotic went off the market and they put me on a new medicine and I got a UTI like that, right away! Then we had to switch medicines and I got another UTI, more severe, and I got another UTI. And they kept switching my medicines and switching my medicines every time I had a urinary tract infection and it wreaked havoc on my system…It was terrible, because they just kept switching my medicines and each time it was a shock to my system. It wasn’t until August of 2008 or whenever it was that I got put back on the original antibiotic and it’s gotten better.

Elizabeth, age 16

 

yellow_sc_ana The worst time
As I’ve gotten older the bowel problem got much more severe. I never really had a big problem – I used to have to wear pull-ups and I would have accidents, but it was so again common in my life that I didn’t really think anything of it. And then I went to this thing at Children’s Hospital called the CUB Clinic and they said, “Oh, you should take Benefiber (Wheat Dextrin) this day, then Imodium (Loperamide) this day, then Ex-Lax (Senna) this day.” And they tried to create this regimen for me, but it didn’t work at all, and it just wreaked havoc on my system. So there was this period of time, I actually think it was the worst period of time ever, because I was switching my medicines for my urinary problems, I was switching all my medicines for bowel problems, and it was puberty time. So it was just sixth and seventh grade, and it was just awful. It was the worst time.

Elizabeth, age 16

 

green_sc_neuro I kind of got used to it when I went the second time, because it’s not very hard to do it. You can learn. It’s kind of on the computer. You can see what to do, and they tell you – it, likes, directs you. You do the exercises two to three times a day. You have to do it fifteen times for ten seconds with the squeeze and relax.

 

Jaya, age 8

 

green_sc_neuro Side effects
Dad: We started anticholinergics

Ellie: Anti-what-a-what-a-wha?

Dad: The pills.

Ellie: Oh! I never liked those.

Dad: So sometime at the end of first grade we stopped anticholinergics, because of the side effects. What do you think those side effects were?

Ellie: Usually I didn’t have a good memory. Well, no, I didn’t have a bad memory, but everything was really a blur. Sometimes when I looked, seriously, it was blurry.

Dad: Mental focus was compromised: this is not uncommon. And so we stopped and started Botox injections to the bladder muscle.

Ellie: I like the Botox way more.

Dad: After about two days it’s great. Bladder relaxes and we don’t have to take meds and she can concentrate at school and she has memory. So that was a big improvement.

Ellie, age 8, and father

 

green_sc_neuro I think it’s starting to kick in
The doctors have tried everything that they know of. I was on medicines for a long time, but they gave me heart problems, so I had to stop. And the medicine wasn’t helping. I did muscle training, called biofeedback, but that didn’t help. I just started something called PTNS. Basically, they stick a thin needle in your foot and a sticky pad on the bottom of your foot. They then hook up a electrical source to the needle and pad. They turn up the electricity until you feel a fluttering sensation. You wait for thirty minutes. I think it’s starting to kick in.

Ryan, age 11

 

green_sc_neuro Now I’m on no drugs
At the beginning of the catheterization, and definitely before, there was some manipulation of drugs. I remember there was Ditropan (Oxybutynin), there was atenolol…I went through this phase of trying out different drugs to lower the bladder pressure, because that was a big issue before I was cathing. Now I’m on no drugs for my urine.

Sam, age 32