Replies to This Discussion

Permalink Reply by Cyndi on December 21, 2009 at 9:35pm

cheryl cliff said:

Cindi,

We are in the process of attempting to register our son as 504. He is currently in private school and hasn't needed that designation yet, but will starting next fall. Would you mind sending the 504 request to me? It would come in really handy!
thanks,
cheryl

Cyndi said:

My son's school installed a Guldmann's lift along with a large table to support his aide assisting with preparing him for using the toilet. The system followed him through his school career and also benefited other disabled students as well. I had it written into his 504 plan and we had no issues with the school. At our first meeting I brought a tape and the representative for the product with ample information. It was wonderful for both his aide and other aides. The student was comfrotable and confident with the transfers. We have one in our home and love it.

Note: This started when he entered 6th grade and followed him through school even when we moved to another county. It is important to have it in his records for that reason alone. If you like and I can find it I would be happy to send you the 504 plan request for it. He has been out of school for 2 years now, but I am sure I can find his folder. Get the PT on board. They will have to train the aides at school.

Cyndi

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Permalink Reply by Cyndi on December 21, 2009 at 9:38pm

be happy to! tell me where to email it and I will. Also, they are some counties in states that will work with private schools. When we lived in Florida that was the case. My son started in private and then we moved him to public. I will say that it was difficult for me and he loved it !!!. lol.

Cyndi said:

cheryl cliff said:

Cindi,

We are in the process of attempting to register our son as 504. He is currently in private school and hasn't needed that designation yet, but will starting next fall. Would you mind sending the 504 request to me? It would come in really handy!
thanks,
cheryl

Cyndi said:

My son's school installed a Guldmann's lift along with a large table to support his aide assisting with preparing him for using the toilet. The system followed him through his school career and also benefited other disabled students as well. I had it written into his 504 plan and we had no issues with the school. At our first meeting I brought a tape and the representative for the product with ample information. It was wonderful for both his aide and other aides. The student was comfrotable and confident with the transfers. We have one in our home and love it.

Note: This started when he entered 6th grade and followed him through school even when we moved to another county. It is important to have it in his records for that reason alone. If you like and I can find it I would be happy to send you the 504 plan request for it. He has been out of school for 2 years now, but I am sure I can find his folder. Get the PT on board. They will have to train the aides at school.

Cyndi

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Permalink Reply by cheryl cliff on December 21, 2009 at 9:41pm

Thanks Cyndi, I really appreciate that!! :)
send it to cherylcliff@gmail.com


Cyndi said:

be happy to! tell me where to email it and I will. Also, they are some counties in states that will work with private schools. When we lived in Florida that was the case. My son started in private and then we moved him to public. I will say that it was difficult for me and he loved it !!!. lol.

Cyndi said:

cheryl cliff said:

Cindi,

We are in the process of attempting to register our son as 504. He is currently in private school and hasn't needed that designation yet, but will starting next fall. Would you mind sending the 504 request to me? It would come in really handy!
thanks,
cheryl

Cyndi said:

My son's school installed a Guldmann's lift along with a large table to support his aide assisting with preparing him for using the toilet. The system followed him through his school career and also benefited other disabled students as well. I had it written into his 504 plan and we had no issues with the school. At our first meeting I brought a tape and the representative for the product with ample information. It was wonderful for both his aide and other aides. The student was comfrotable and confident with the transfers. We have one in our home and love it.

Note: This started when he entered 6th grade and followed him through school even when we moved to another county. It is important to have it in his records for that reason alone. If you like and I can find it I would be happy to send you the 504 plan request for it. He has been out of school for 2 years now, but I am sure I can find his folder. Get the PT on board. They will have to train the aides at school.

Cyndi

• ▶ Reply

Permalink Reply by Karen Barnett on December 22, 2009 at 1:52am

Hoyer also makes the Easy Stand lifts and yes they use no slings. They pull you up with a padded support that goes under the arms and around the back.. We use these at work as well. They are great for toileting. The person has to have enough upper body strength though to hold onto the lift to stay up.

christine good said:

It's called a sit to stand lift. No need for a sling. The person does not need to weight bare.

Warren Papenmeier said:

They use a staff bathroom that is large enough for his chair and a lift. I guess they were just wondering what would be the best lift to use and how it works with getting his pants down.

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Permalink Reply by Vicky Williamson on December 29, 2009 at 12:46pm

We just got our 17-year-old son a EZ Pivot lift which works wonderful as long as you're not on carpet! We have it for home use only at this time because in the 6 years he's been in a wheelchair, the first time he's had to go #2 at school was last week. Now they may look into the EZ Pivot. It can be used by just one person and the patient does not need to use his own strength for anything.

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Permalink Reply by cheryl cliff on December 29, 2009 at 4:33pm

Hi Vicky,

Who makes EZ Pivot?



Vicky Williamson said:

We just got our 17-year-old son a EZ Pivot lift which works wonderful as long as you're not on carpet! We have it for home use only at this time because in the 6 years he's been in a wheelchair, the first time he's had to go #2 at school was last week. Now they may look into the EZ Pivot. It can be used by just one person and the patient does not need to use his own strength for anything.

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Permalink Reply by Karen on December 31, 2009 at 11:07pm

Hi
Our son uses a hand held urinal and uses the staff bathroom (he has a key). He wears sweat pants that are a bit large. He sits in his chair, pulls the front of his pants down and goes pee. Some people train their sons to have bowel movements in the evening so school isn't an issue. Good luck. Some of the smallest issues cause the biggest hassles.

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Permalink Reply by Katherine M. Reynoldson on January 3, 2010 at 2:00pm

Something else you might want to consider would be to use an "external collection system" or condom catheter with a leg bag. It is very important to take in and pass fluids throughout the day for many reasons so it it concerning to read that some of your boys do not drink/urinate while at school. The external system is easy to put on and take off and gives complete independence in urinating throughout the day. You put it on in the morning and take it off at bedtime. It takes a little getting used to as most boys with DMD are resistant to change but it will definitely make going throughout the day infinetly easier, the individual just goes when ever they need to while sitting in their chair (no transfers, pulling down pants, etc.). Does not solve the needing to have a bowel movement but for that I would suggest getting your son(s) on a bowel program so that they go at the same time every day, (either before school or before bedtime). A bowel program is fairly easy to implement and one of the clinicians where you take your child could assist with implementation. This all may seem complicated but in actuality both are easy to implement. Would be happy to answer any questions you might have.
Good Luck,
Katherine

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Permalink Reply by Dave Click on January 12, 2010 at 4:23pm

I love all these discussions about toileting. This is one of the biggest daily struggles we face. My son, Alex, is nearly 11 and about 120 lbs. I carry him on my back into the bathroom and onto the toilet. I then "stand" him up while he wraps his arms around my neck as I pull his pants down and then he sits. His leg strength is very weak and pulling pants down is our biggest challenge. It works for now, but I worry about falls (and my back). We have a prescription for a Hoyer lift, but the legs are too wide for the bathroom door near his room. We also have carpet - and reading all these posts has me worried for a Hoyer lift's mobility. We installed an over-sized bathroom in the basement (and elevator), but sometimes getting down to the basement bathroom in a "timely" manner is tough. Still the issue of getting his pants down is ever-present. Where does one buy the side-snap pants? Sounds like that is our answer for the pants. Rambling, I know, but concerned as Alex gets older, weaker, and heavier.

Thanks,

Dave

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Permalink Reply by Samantha Dearing on January 13, 2010 at 9:00am

Dave--does he use a urinal to pee? That makes the bathroom trips so much easier. Justin started using a urinal before he stopped walking. Also, we have found most of our button pants on EBay. You can get them cheaper on ebay. We also have found them in Athletic stores, but they are alot more expensive.

--Samantha

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Permalink Reply by Dave Click on January 13, 2010 at 4:24pm

Thanks, Samantha! Very helpful. Yes, we use the bottle every now and then, but the bathroom backrides have become small bonding experiences between father and son. Need to change that though due to weight/back issues. Still, the problem is for #2. Getting those darned pants (and underwear) down is an ever-present challenge. Thanks for the leads to breakaway pants. Will check them out.

Dave

Samantha Dearing said:

Dave--does he use a urinal to pee? That makes the bathroom trips so much easier. Justin started using a urinal before he stopped walking. Also, we have found most of our button pants on EBay. You can get them cheaper on ebay. We also have found them in Athletic stores, but they are alot more expensive.

--Samantha

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Permalink Reply by Samantha Dearing on January 15, 2010 at 10:58am

See if you can get him to stop wearing underwear. Justin was resistant to it at first, but once he tried it and realized how much easier it is to use the urinal and the toilet, he was sold on it!

--Samantha

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