9 replies to this topic

[Muskie]

it has been a little over 2 months since my son's accident, and while he is making progress slowly, the agony that we feel every time something goes awry is almost numbing. The education I am receiving is scaring the hell out of me. Autonomic Dysreflexia enough said. My wife or I sleep in the hospital room with our son in case he needs something during the night, well 3 days ago AD reared its ugly head again. I went to take a phone call in the day room and the next thing I know he is sick as a dog with his BP up near 150 and splitting head ache. He catheter is constantly getting clogged, so this morning he goes for a cystoscope, this maybe the one time I am thankful he can't feel anything there. The kid drinks a ton of Gatorade could this be a problem or perhaps sugary drinks? He was a lifeguard at the time of his accident with a swimmer's body less that 5% body fat this injury ate his muscle to the point where he lost 35 pounds, I figure empty calories or not the more calories we got into him the better. I don't know just venting I guess and not having a good day, but not nearly as bad as his. I am just so angry

[Vanessamaee]

I was told by my doctors that sugary drinks can help cause UTI's which is what can cause the clogging of his caths... My last UTI I ended up in the ER because I couldnt pass urine because the UTI clogged everything with a giant plug. Also losing a lot of weight is common :/ I lost 40lbs. I actually ended up on a calorie count because the doctors were afraid I may be running into more problems (I had eating disorders before my accident...) and as far as AD goes.. It is ugly... but is triggered by something. One of those things where you take a deep breath and go through all the steps. Seems like theres a lot of that when it comes to paralysis. Bowel, Bladder, Sores, In grown toe nails... etc. Bowel and Bladder are huge things though. I hope your and your sons day get better!
Vanessa (:

[Millard]

Hello Muskie,

Have you asked your doctor about Nitropaste to quickly lower your son's blood pressure during an AD event? This should cause the headache to quickly ease also.

Good luck.

[Muskie]

Funny you mention that, I just went to an SCI education class and the doctor giving the class mentioned it, But I guess I will need to remember stuff like that for when we leave the rehab and go home

[edlee]

You are going to find that YOU and HE are going to need to be educated about SCI, and AD,,, as many ER doctors are not. There are preprinted cards with info about AD and the reccommended treatments, that you can carry and hand out to the appropriate peiople when visiting a new doctor or the ER. You will be surprised at the ignorance you will run into.

No,,, it nevr ends,,, but it gets easier. You learn to adjust and anticipate. So will he.

I wish you much luck.
ed

[Nicus]

Hi mate.
I used to get clogged allot as well. Almost every week. I started to use Tibb Renotone herb tablets weren't a fan of herbal remedies but it really works for me 1 uti in 6 months with indwelling catheter.
Fizzy Sugary drinks do help on uti's and the fizz caused me some bladder spasms causing AD. Would recommend diluted juice NOT 100% if he gets tired of drinking water.I am a year in and it really gets allot better as the body adjusts. Also please remember He's only as strong as the people around him. Will pray for you all for strength and grace.

Strongs and welcome to this site of knowledge.

[August]

Muskie, on 07 October 2011 - 01:31 PM, said:

it has been a little over 2 months since my son's accident, and while he is making progress slowly, the agony that we feel every time something goes awry is almost numbing. The education I am receiving is scaring the hell out of me. Autonomic Dysreflexia enough said. My wife or I sleep in the hospital room with our son in case he needs something during the night, well 3 days ago AD reared its ugly head again. I went to take a phone call in the day room and the next thing I know he is sick as a dog with his BP up near 150 and splitting head ache. He catheter is constantly getting clogged, so this morning he goes for a cystoscope, this maybe the one time I am thankful he can't feel anything there. The kid drinks a ton of Gatorade could this be a problem or perhaps sugary drinks? He was a lifeguard at the time of his accident with a swimmer's body less that 5% body fat this injury ate his muscle to the point where he lost 35 pounds, I figure empty calories or not the more calories we got into him the better. I don't know just venting I guess and not having a good day, but not nearly as bad as his. I am just so angry

My son had a lot of problems with blocked catheters during his early days in hospital. Unfortunately the nursing staff did not seem aware that this was a problem nor did they learn from observing him that it was. Ho hum. Anyway, I remember reading an article which said that newly-injured spinal cord patients had significant calcium loss following their injury. The calcium is excreted in the urine, thus catheters are likely to block.
My son also lost a lot of weight and we were told that the number one dietary priority was calories followed by protein. While sugar delivers calories, it is best to consume other high-density foods that also provide proteins, minerals and vitamins.


August.

[atyler]

The biggest asset to your son is the love and caring you give. I have been para for eight years. No matter how much knowledge your son has, he will have to learn to live in his new body and strive daily for rebuilding his life, appreciating what he has, and counting his blessings!
LIFE GETS BETTER, I PROMISE! This is not the end of life. My life has quality and his does also.
Encourage him daily and do your best to take care of yourselves while you take care of him.
Love and encouragement, along with daily living and education, are the very best assets to you and your family. Thank God for his life. Encouragement and praise for every accomplishment he achieves will help to heal.
This is not easy, but life can be wonderful. Assess what is present, thank God he is still alive and can get better, and look forward to a bright future! LIFE GETS BETTER!!!

[jdub]

It is important to get educated and the internet is a great source. Also, spinal cord centers are around the US, so depending on where you live, maybe they could help.

I was a collegiate swimmer before my accident (a diving accident how ironic). And I too went through bladder issues, but it is possible to overcome the problems.

So his catheter is becoming blocked resulting in a dysreflexia. I am assuming he has an indwelling catheter. Is it urethral or supra pubic? Supra-pubic caths tend to become less blocked since you can use larger diameter cath. Also suprapubic is not in the body as much as urethal. However, before doing a suprapubic, make sure the surgeon has done them before for spinal cord injury, since a bad placement suprapubic could be trouble.

Next question, what kind of blockage? If sediment in the catheter is gritty, then it is caused by the bacteria Proteus Mirabilis. Using antibiotics effective against proteus mirabilis is better than general antibiotics. If it is gritty, a bladder scan might be useful since bladder stones can quickly form.

Does he drink enough? I dont know how much I drink, but I usually empty my catheter bag 3 times per 24 hours at about 1600 ml each time.

What kind of catheter does he use? Latex catheters tend to be more susceptible to infection since latex is organic versus silicone caths. Kendall has a silver-impregnated cath that i use and I have not had a blockage since.

How frequently do they change the cath? Longer the cath stays in, the more bacteria colonize and form biofilm. Biofilm is very difficult to kill, so I change frequently (every 2 weeks or less).

In terms of calories, protein is good. Your body needs protein to fight infection and keep the skin healthy.

[Muskie]

jdub, on 21 November 2011 - 02:23 AM, said:

It is important to get educated and the internet is a great source. Also, spinal cord centers are around the US, so depending on where you live, maybe they could help.

I was a collegiate swimmer before my accident (a diving accident how ironic). And I too went through bladder issues, but it is possible to overcome the problems.

So his catheter is becoming blocked resulting in a dysreflexia. I am assuming he has an indwelling catheter. Is it urethral or supra pubic? Supra-pubic caths tend to become less blocked since you can use larger diameter cath. Also suprapubic is not in the body as much as urethal. However, before doing a suprapubic, make sure the surgeon has done them before for spinal cord injury, since a bad placement suprapubic could be trouble.

Next question, what kind of blockage? If sediment in the catheter is gritty, then it is caused by the bacteria Proteus Mirabilis. Using antibiotics effective against proteus mirabilis is better than general antibiotics. If it is gritty, a bladder scan might be useful since bladder stones can quickly form.

Does he drink enough? I dont know how much I drink, but I usually empty my catheter bag 3 times per 24 hours at about 1600 ml each time.

What kind of catheter does he use? Latex catheters tend to be more susceptible to infection since latex is organic versus silicone caths. Kendall has a silver-impregnated cath that i use and I have not had a blockage since.

How frequently do they change the cath? Longer the cath stays in, the more bacteria colonize and form biofilm. Biofilm is very difficult to kill, so I change frequently (every 2 weeks or less).

In terms of calories, protein is good. Your body needs protein to fight infection and keep the skin healthy.

Hi jdub,

Nick just has an in dwelling cath right now he is getting up the courage to do an IC, he is currently being evaluated for a study for bladder stones since he produces a quarry every month. I think you are on to something I do believe he needs to increase his fluid intake.

Btw way my son was a lifeguard and was hurt during a swimming relay race when the geniuses running the race decided not to remove the buoy line in the shallow end of the lake and he tried to dive over it.


Muskie