urinary retention/panic attacks

[Guest guest]

Just wanted to weigh in on the urinary retention issue. Lexi has struggled with this for the last 3 years. She didn't become fully potty trained until 4 and even then, she would not go regularly. I didn't realize how bad until her skin started turning yellow from all the toxins. That was when i figured out she was retaining up to 36 hrs. We did a test to find out what was going on and discovered that her bladder had become completely stretched out. the mito doc explained that Lexi was having trouble consistently getting her bladder muscles to contract hard enough to push the urine past the shincter holding the bladder closed. so she would just "hold it". After awhile, as her bladder got stretched out, she lost the sensation of needing to go potty so she literally couldn't feel the urge to go. We went thru bladder re-training and have got it fairly well under control at this point. Lexi's doc told me that she wants toddlers going potty every 4-5 hrs. this might be an issue to take up with your specialists. It could get ugly if it gets to the point where we were.

ruth

mom to Mitch (10 on Tuesday) and Lexi (now 7 and one week), both mito affected and my treasures

[Guest guest]

Sorry to bunch such different issues into the same post but like you,

time is short here. Molly appears to be peeing less frequently, but

then all of the sudden will go tons at a time. Has anyone seen this? Is

this normal? She has just become recently potty trained (about two

months) and she normally was going every few hours . Last night she

didn't go for about 16hours and then tonight she about filled a little

potty chair 3/4 full at once. That seems like alot . Any ideas? What is

normal for a toddler?

Now the other day at the docs it appears she had a panic attack. She

has been to tons of docs, ER visits, tests and no problems. We were at

the cardiologists for an ekg/echo and to hook up an holter. She had

never been there and her face got red, and think she passed out or had

a little seizure, she screamed like a baby off and on for over two

hours. When we left she was fine. We spent the rest of the day at the

hem/onc clinic getting IVIG and no problem. It is the weirdest thing I

ever saw. Her neuro said it sound like a panic attack. Has anyone seen

this in children this young? (3.5yr. old)

thanks for the help, Dawn M

[Guest guest]

Hi Dawn,

Something to watch for would be puffiness in her hands, feet and face related to the urinary retention. It can also cause irritability and maybe is a link to the panic attack???

Take care, Jonithefourofus03 wrote:

Sorry to bunch such different issues into the same post but like you, time is short here. Molly appears to be peeing less frequently, but then all of the sudden will go tons at a time. Has anyone seen this? Is this normal? She has just become recently potty trained (about two months) and she normally was going every few hours . Last night she didn't go for about 16hours and then tonight she about filled a little potty chair 3/4 full at once. That seems like alot . Any ideas? What is normal for a toddler?Now the other day at the docs it appears she had a panic attack. She has been to tons of docs, ER visits, tests and no problems. We were at the cardiologists for an ekg/echo and to hook up an holter. She had never been there and her face got red, and think she passed out or had a little seizure, she screamed like a baby off

and on for over two hours. When we left she was fine. We spent the rest of the day at the hem/onc clinic getting IVIG and no problem. It is the weirdest thing I ever saw. Her neuro said it sound like a panic attack. Has anyone seen this in children this young? (3.5yr. old) thanks for the help, Dawn MPlease contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

My most affected child takes Bethanechol for urinary retention.

Cindy-GA

Re: urinary retention/panic attacks

Hi Dawn,

Something to watch for would be puffiness in her hands, feet and face related to the urinary retention. It can also cause irritability and maybe is a link to the panic attack???

Take care, Jonithefourofus03 wrote:

Sorry to bunch such different issues into the same post but like you, time is short here. Molly appears to be peeing less frequently, but then all of the sudden will go tons at a time. Has anyone seen this? Is this normal? She has just become recently potty trained (about two months) and she normally was going every few hours . Last night she didn't go for about 16hours and then tonight she about filled a little potty chair 3/4 full at once. That seems like alot . Any ideas? What is normal for a toddler?Now the other day at the docs it appears she had a panic attack. She has been to tons of docs, ER visits, tests and no problems. We were at the cardiologists for an ekg/echo and to hook up an holter. She had never been there and her face got red, and think she passed out or had a little seizure, she screamed like a baby off and on for over two hours. When we left she was fine. We spent the rest of the day at the hem/onc clinic getting IVIG and no problem. It is the weirdest thing I ever saw. Her neuro said it sound like a panic attack. Has anyone seen this in children this young? (3.5yr. old) thanks for the help, Dawn MPlease contact mito-owner with any problems or questions.

__________________________________________________

[Guest guest]

Dawn,

We have this issue at our house. iel has urinary retention, but also has fluid retention. Two very different problems and yet they can manifest themselves rather similarly. We can tell the difference because when he is retaining urine we can feel his bladder. We have had to cath him at times. We also were able to sort the two issues out by having a hand held ultrasound machine in our home. I would ultrasound him multiple times a day to check urine volumes in his bladder and that helped sort out what was prerenal fluid retention and what was urinary retention. We call it cycling and when a cycle breaks we feel as if we need to build an ark...

is not potty trained even though he is over 5 as he does not have control. We do potty on the potty, but he almost continually drips. Over the years we have been able to tie most of it together, although we do not have a cause other than Mito and possibly related to his elevation in long and very long chain fatty acids. He is also a cyclical vomiter and he would retain fluid prior to starting to vomit. We would take him into ER and he would have no urine in his bladder despite having taken huge amounts of fluid prior to the vomiting and from IV hydration. We now have the vomiting much more under control with Propanolol, however we still have fluid retention. We deal with urology for the urinary retention and nephrology for the fluid retention with some help from endocrinology and neurology.

I can not speak for the panic attacks, although he is autistic with SID and his symptoms/tendancies get worse when he is retaining urine or fluid.

Hope this helps,

Tammythefourofus03 wrote:

Sorry to bunch such different issues into the same post but like you, time is short here. Molly appears to be peeing less frequently, but then all of the sudden will go tons at a time. Has anyone seen this? Is this normal? She has just become recently potty trained (about two months) and she normally was going every few hours . Last night she didn't go for about 16hours and then tonight she about filled a little potty chair 3/4 full at once. That seems like alot . Any ideas? What is normal for a toddler?Now the other day at the docs it appears she had a panic attack. She has been to tons of docs, ER visits, tests and no problems. We were at the cardiologists for an ekg/echo and to hook up an holter. She had never been there and her face got red, and think she passed out or had a little seizure, she screamed like a baby off

and on for over two hours. When we left she was fine. We spent the rest of the day at the hem/onc clinic getting IVIG and no problem. It is the weirdest thing I ever saw. Her neuro said it sound like a panic attack. Has anyone seen this in children this young? (3.5yr. old) thanks for the help, Dawn MPlease contact mito-owner with any problems or questions.

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[Guest guest]

I have heard that during potty training kids will go a long time without going. They are still getting used to the control of it all. We are having a weird problem with Gracie and potty training. She will ask to go potty, but cannot seem to release it when on the potty. We are wondering if she has some control issues, since we can tell she is mentally ready to train. I guess with these mito kids we just cannot expect anything to go "normal". I would, however, keep an eye on it. Holding urine is not good for you. Maybe reminding her to go more often will help. If she just can't then I would ask your pediatrician.

As far as panic attacks go, Gracie was having them as early as 1 year old. She did not loose control, but would get sweaty and hot. Also her BP was extremely elevated. (her average was 110/90) I was taking her from doctor to doctor trying to figure out what it was. Finally we figured out that it was from seeing so many doctors, and so many blood tests she was stressed. After that we decided that she had to take some time off from appts and just be a kid for awile. I can't remember how long but it was at least a month or 2, that she saw no doctors and had no blood drawn. Thankfully it did the trick. Her BP is still high, but she is much calmer now. We still really try to avoid overloading her with appts. Thankfully her health has improved so this makes it much easier.

Best wishes

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