Re: Urinary tract problems

[Guest guest]

Great, Chrissy (said with sarcasm). It seems like if it is

associated with RSS, Max eventually gets it. I thought that by 15

(he'll be 15 in a few more weeks - July 2), things would have calmed

down by now and we would be over the hump. I think that hump is

getting bigger and bigger. No wonder I am such an emotional mess!

Jodi

[Guest guest]

Jodi,

I think this is a great topic for the convention. Storm has a problem

wetting his pants every once in a while (while awake). He also

occasionally complains of burning, but usually he just says he didn't

notice. I wonder if it has to do with muscle tone!? He is always dry

through the night, but not through the day! I would like to know what

it is all about too!

Carmen

[Guest guest]

Wow, Carmen. Maybe we are onto something here. I wonder how many

other of our RSS kids have this problem? I'm going to try to call

Dr. H. tomorrow and I will let her know about Storm as well.

Last night, to make a long story short, I had to call the fellow on

call to contact Dr. H. to make sure that a certain medicine the

pediatrician wanted to use was okay. She was not happy that it was

10 at night, but I don't care. Max did not tell me anything until

9:30, so what could I do? She approved the med that the pediatrician

wanted to use and it seems to be working today. She also prescribed

a nasal spray which we have used in the past for the nighttime, but

it did not work last night. I'm hoping that by using the pills today

and then the nasal spray tonight, Max will not have a problem. I've

also told him to wear underwear and boxers under his shorts so there

is an extra layer and it won't go through his clothes. (The ped.

suggested a pantiliner, but try to get a boy to wear one of

those!!!!)

As per the ped's advice, I will call the urologist tomorrow and speak

to a nurse to get Max in ASAP. Socially and psychologically this

really qualifies as an emergency and he has to be seen right away. I

can't ask a teenager to wait days or weeks for an appointment for

this. If I have any trouble, I will get the ped to call herself.

I'll let you know what happens. And I will try to contact Dr. H. to

see if we are onto something new with RSS. By the way, she did say

that Max having dysmotility in his GI tract could affect his urinary

tract. Very interesting....

Jodi

[Guest guest]

Jodi,

I would be very interested in this train of thought. Matt still

isn't dry at night, he sleeps too sound and we can't even wake him

up to try to pee! But the really weird thing is, he has to pee a

lot during the day. Seems like as soon as he drinks something, he

needs to go, and he does. Sometimes it is a stalling technique to

delay bedtime or meal time, but usually he does go. We have checked

him for diabetes, but I am wondering if his frequent urination is

due to the bladder spasms? I am assuming Max is on Pyridium, which

is what turns his urine orange. They give that for bladder spasms.

It is a wonder drug! Every woman should have some on hand for those

middle of the night bladder infections!

Beth

[Guest guest]

Beth,

Max does take Pyridium, but I never knew about it before because I

have never had a bladder infection. Actually, either does Max, but

we don't know what is going on. Obviously there is some sort of

inflammation and I hope to get an appointment tomorrow to see the

urologist. He is supposed to be very nice and understanding. I'll

let you know.

As for the orange peeing, Max has been upset because his white

underwear has been stained from the accidents he has had. I was able

to get them out with Chlorox, so he feels much better. He was so

worried that I would have to buy him new underwear - as if I really

care. If he needed new ones, I would happily buy him new ones.

Jodi

By the way, the Dilantin has worked today. No accidents!

[Guest guest]

Beth,

Max does take Pyridium, but I never knew about it before because I

have never had a bladder infection. Actually, either does Max, but

we don't know what is going on. Obviously there is some sort of

inflammation and I hope to get an appointment tomorrow to see the

urologist. He is supposed to be very nice and understanding. I'll

let you know.

As for the orange peeing, Max has been upset because his white

underwear has been stained from the accidents he has had. I was able

to get them out with Chlorox, so he feels much better. He was so

worried that I would have to buy him new underwear - as if I really

care. If he needed new ones, I would happily buy him new ones.

Jodi

By the way, the Dilantin has worked today. No accidents!

[Guest guest]

Jodi

Just a side note on dilantin it can cause the overgrowth of gum tissue in the

mouth. Just make sure Oral Hygiene skills are as best as possible, this will

help prevent some of the overgrowth. Electric toothbrushes work well. Just

thought I would mention it since he has been up and down the rollercoaster on

having things happen to him..

Maloy mom to Tori gained 6 oz from Mon to Thurs. with g-tube just placed

Re: Urinary tract problems

Beth,

Max does take Pyridium, but I never knew about it before because I

have never had a bladder infection. Actually, either does Max, but

we don't know what is going on. Obviously there is some sort of

inflammation and I hope to get an appointment tomorrow to see the

urologist. He is supposed to be very nice and understanding. I'll

let you know.

As for the orange peeing, Max has been upset because his white

underwear has been stained from the accidents he has had. I was able

to get them out with Chlorox, so he feels much better. He was so

worried that I would have to buy him new underwear - as if I really

care. If he needed new ones, I would happily buy him new ones.

Jodi

By the way, the Dilantin has worked today. No accidents!

[Guest guest]

Jodi

Just a side note on dilantin it can cause the overgrowth of gum tissue in the

mouth. Just make sure Oral Hygiene skills are as best as possible, this will

help prevent some of the overgrowth. Electric toothbrushes work well. Just

thought I would mention it since he has been up and down the rollercoaster on

having things happen to him..

Maloy mom to Tori gained 6 oz from Mon to Thurs. with g-tube just placed

Re: Urinary tract problems

Beth,

Max does take Pyridium, but I never knew about it before because I

have never had a bladder infection. Actually, either does Max, but

we don't know what is going on. Obviously there is some sort of

inflammation and I hope to get an appointment tomorrow to see the

urologist. He is supposed to be very nice and understanding. I'll

let you know.

As for the orange peeing, Max has been upset because his white

underwear has been stained from the accidents he has had. I was able

to get them out with Chlorox, so he feels much better. He was so

worried that I would have to buy him new underwear - as if I really

care. If he needed new ones, I would happily buy him new ones.

Jodi

By the way, the Dilantin has worked today. No accidents!

[Guest guest]

Jodi,

for what it is worth, Maxi goes to the bathroom, every 45 minutes,

and really has to go! I just figured his bladder was small, but get

him near liquid, and well... he doesn't wet at night, but then

again, this is a kid who wakes himself every four or so hours for

food! So he has opportunity to go at night. He will also wake to go,

but has had a few accidents, but also didn't get out of pull-ups

till after his fourth birthday. I wonder sometimes, though, with the

way he sweats and the way he goes to the bathroom all the time, if

it is related to RSS.

Hugs,

amyMarie

> Wow, Carmen. Maybe we are onto something here. I wonder how many

> other of our RSS kids have this problem? I'm going to try to call

> Dr. H. tomorrow and I will let her know about Storm as well.

>

> Last night, to make a long story short, I had to call the fellow

on

> call to contact Dr. H. to make sure that a certain medicine the

> pediatrician wanted to use was okay. She was not happy that it

was

> 10 at night, but I don't care. Max did not tell me anything until

> 9:30, so what could I do? She approved the med that the

pediatrician

> wanted to use and it seems to be working today. She also

prescribed

> a nasal spray which we have used in the past for the nighttime,

but

> it did not work last night. I'm hoping that by using the pills

today

> and then the nasal spray tonight, Max will not have a problem.

I've

> also told him to wear underwear and boxers under his shorts so

there

> is an extra layer and it won't go through his clothes. (The ped.

> suggested a pantiliner, but try to get a boy to wear one of

> those!!!!)

>

> As per the ped's advice, I will call the urologist tomorrow and

speak

> to a nurse to get Max in ASAP. Socially and psychologically this

> really qualifies as an emergency and he has to be seen right

away. I

> can't ask a teenager to wait days or weeks for an appointment for

> this. If I have any trouble, I will get the ped to call herself.

>

> I'll let you know what happens. And I will try to contact Dr. H.

to

> see if we are onto something new with RSS. By the way, she did

say

> that Max having dysmotility in his GI tract could affect his

urinary

> tract. Very interesting....

>

> Jodi

[Guest guest]

Maloy,

I don't know where my head was last night. Max is not taking

Dilantin. He is taking Ditropan. Well, they both begin with a d,

right?

I did get Max to a urologist today. He is unsure of what is wrong,

but gave him Ditropan XR so that he only has to take one pill once a

day. On Friday I have to take him for an ultrasound of his kidneys

and bladder. The doctor is not sure of what is going on, but thought

that perhaps Max has a virus of some sort. Who knows? There is so

much going on here that this is the last thing I need. I just want

to help him feel better already and the medication is having the side

effect of headache and nausea. Poor Max. When will it end for him?

Jodi

[Guest guest]

I would try not giving him the cranberry juice or anything else acidic

for a little while. Since the drs. are seeing no evidence of an

infection there's no reason to be raising the acidity of his urine.

It also occured to me that maybe the burning sensation is caused by

his urine being TOO acidic. Perhaps one of his meds is contributing

to this?

The reason I mention this is I've had it happen to me before. I've

never had a UTI, but have gotten burning sensation when I drank way

too much cranberry juice (which I love). It clear up when I cut down

on acidic foods/drinks.

Elaine

[Guest guest]

Elaine,

You are right about the cranberry juice. I took Max to a urologist

yesterday and he told me that Max should pretty much stick to water,

with an occasional soda if he really wants it. We have Max on

Ditropan, which is working for the most part. There is still some

wetting, but not as often. Max also has to use the bathroom every

hour, pee, count to ten then go again. On Friday he will have an

ultrasound of his kidneys and bladder.

I spoke to Dr. H. today and she does not think this is related to

RSS, although it could be related to the dysmotility. I hope not.

He has enough to deal with. We decided, Dr. H. and I, to wait until

I have the results of the ultrasound and then we will talk again.

Whatever it is, we will deal with it.

Meanwhile, with the increased water consumption, Max said the burning

is better, but not gone, and he can tolerate it just fine. We have

Pyridium if it gets really bad, but the doctor wants us to try not to

use it. By drinking lots of water, that will dilute his urine and it

won't burn like it has.

Thanks for your reply. For now, we know it is not RSS-related, but

you never know. Max always seems to be the first to go through

something that they later find out IS related. Sigh.

Jodi