New Here, Looking for Insights and Advice

[Cheryl]

Hello all, I'm here because of my son David, who was born with cerebral palsy, severe intellectual disability, and other birth defects. He is almost 19, although very small for his age, and due to his disabilities he is completely incontinent and in diapers 24/7. Our background story is long and complicated so I won't get into it. But just to set some context, I was forced to give him up for adoption at birth not even knowing his condition and just got custody of him last fall. I just brought him home a couple of months ago so in effect I'm a new mom still learning and trying to find my way. I did a lot of work and research preparing for him and in the process I discovered lots of web sites, forums, support groups, and resources for parents of babies and children with disabilities, and for adults with disabilities, but there seems to be very little out there for the "in-between" kids like David. He's not really a child and he's certainly not an adult so finding the right products and the right group of people to share experiences with has been very challenging. But I am devoted to my son and his quality of life so I'll keep searching until I get him what he needs.

So why am I here? As the topic says, I'm looking for insights, specifically on the physical aspects of diapers. And please forgive my use of the word "diapers" instead of briefs or protection. I don't see anything wrong with it and David certainly isn't embarrassed so that's what I call them, but I understand others might prefer a different and I certainly don't mean anything by it. David is essentially a baby in a small teenage body, so he can't tell me what he wants, or what feels uncomfortable. Sometimes I can tell but other times I have no clue. If anyone here can offer advice on what products work best and feel best to you I'm hoping I might be able to give my son a better experience.

Right now I have David in a no name brand disposable from a local medical supply company but he has a lot of leaking and gets a lot of rashes. I've tried all the others the company has including Depends, Attends, and Tena but nothing worked any better as far as leaking and rashes. I'm also wondering if reusable cotton diapers might be better. I've been reading other posts and it sounds like that could be a real option.

So, I guess I'm just saying hi and if you have any thoughts to share I would love to hear them.

Thanks,
Cheryl

[Inconinmiss]

Cheryl,

Welcome to this caring community.

In my opinion, you're better off sticking with disposable diapers rather than going over to cloth. However, if you can possibly afford it, you should use a high-quality, higher-capacity isposable, such as Abena, Molicare, or ComfiDry 24/7. High-quality diapers cost more, but the fact that you will likely use fewer of them may mean that the net cost is not that much more than cheap store brand diapers. If properly applied so that the diaper fits snugly around the legs and waist, you will have many fewer problems with leaks. Something else to consider is shaving or closely clipping any hair that is growing in the diaper area. The presence of hair makes it harder to clean the diaper area during diaper changes, and getting rid of it will helps many of us reduce rashes. Something else to keep in mind is that, while it's very important to change a diaper quickly after a bowel movement, it's often OK to go longer between changes if the diaper is only wet.

You mention the possibility of going to cloth diapers. You'll likely hear a lot of different opinions on that, but I advise against it. First, caring for cloth diapers and plastic pants is a lot more work than using disposables, and I rather imagine that you do not need that extra work. Also residual detergent in cloth diapers can be a cause of rashes. In my own experience, I find that I get fewer rashes when I use disposables. However, the chemical composition of disposables varies slightly from brand to brand; and some people have difficulties with certain brands. In my case, I have the fewest problems with Abena; but people's sensitivities vary.

Good luck. Keep in touch with us. We all wish you well.

[schoppy]

Hello all, I'm here because of my son David, who was born with cerebral palsy, severe intellectual disability, and other birth defects. He is almost 19, although very small for his age, and due to his disabilities he is completely incontinent and in diapers 24/7.
So, I guess I'm just saying hi and if you have any thoughts to share I would love to hear them.

Thanks,
Cheryl

Howdy Cheryl

Welcome to our family here on this forum.
Just keep one thing in mind, YOU ARE NOT ALONE
Im sure that you will find a lot of help and support here.

Schoppy

[Papa]

Dear Cheryl, Welcome. You will get more advise here than you may want. It is all given with caring so pick it apart and go with what suits you and your son best. You must be a very special person to undertake your sons care after so long.
You have heard the case for disposable diapers above. I prefer cloth diapers. I use disposables also but use cloth diapers primarily. Disposable as pointed out above can be convenient for sure but also contain chemicals that can irritate. Cloth diapers are way cheaper to use although costly to get started with, unless you sew your own. They will last years although the plastic pants will not. 4 disposable diapers a day will run you at least 5 dollars/day for quality diapers. That is $1,800.00+ a year. Washing and drying not included but minimum cost really with cloth diapers. As far as comfort, cotton vs paper diapers (you can figure that out). You actually would be best off to just try cloth diapers at night. Easily adjustable to any amount of wetting. If you find that works, and you will, Use in day time as fits your needs. Disposable diapers are definitely needed or best in certain circumstances. It is a learning curve. As i said you will receive a lot of advice. Unfortunately, as you said, he can not tell you what he likes so you have to decide. Again, you must be amazing. Papa

[MSUSpartan]

Most of us are not offended by the word diaper, so feel free to use it.

It has been my personal observation that any adult diaper you can buy in a store isn't worth buying. You will most likely have to get them online.

I agree about trying cloth at night first. Read up on care of cloth diapers, and how to strip them. At some point they all have to be stripped, no matter how well you care for them.

[Cheryl]

Thanks so much for the warm welcome, Papa. From reading through some of the forum posts I can tell this is a caring community and I really do want to hear what people think, and I am definitely a take what you can use and leave the rest kind of person so no worries about the volume of responses. Thank you also for your kind words. I don't know that I'm special because caring for David is a true labor of love, and it doesn't feel that hard. I fell head over heals in love with him the first time I met him and he has this special ability to connect with people--not just me! I've met more wonderful people and made more friends in the last few months because of his affect on people than I had in the past 10 years! Despite some very difficult circumstances and experiences in foster and institutional care during his life he is happy and affectionate with the most agreeable disposition you can imagine. He has his moments (and days) as we all do but the truth is it's easy to love and care for David.

4 disposable diapers a day will run you at least 5 dollars/day for quality diapers.

Yes, I've done the math and for us it's averaging more like 8 diapers a day. Cost is definitely a factor although my first and foremost consideration is David's comfort.

As far as comfort, cotton vs paper diapers (you can figure that out).

This is where I'm not so sure. I would imagine cloth does feel better than paper and plastic when it's dry, but how about when it's wet. Baby diaper commercials all talk about stay dry liners that keep wetness away from skin and feel dry. That sounds pretty good to me. And I know that when my cotton clothing gets wet it REALLY feels wet and uncomfortable. So I really don't think I can figure that out on my own.

You actually would be best off to just try cloth diapers at night. Easily adjustable to any amount of wetting.

I am really open to trying it if I could find the right cloth diapers. The only ones I've seen are the pull-up kind and that won't work for changing David. If I can find something more like baby diapers I think I would give it a try. Is there such a thing?

Thanks,
Cheryl

[Cheryl]

Most of us are not offended by the word diaper, so feel free to use it.

It has been my personal observation that any adult diaper you can buy in a store isn't worth buying. You will most likely have to get them online.

I agree about trying cloth at night first. Read up on care of cloth diapers, and how to strip them. At some point they all have to be stripped, no matter how well you care for them.

Thanks. To me it's a diaper and there's nothing wrong with needing one, but I'm also sensitive to others' feelings. I've been buying from a medical supply company so I thought they would have a full range of products. That's why I was disappointed by the lack of selection. The brands I've read about here were not available through them, or maybe I wasn't asking the right questions. I don't know. As I mentioned, I have been looking online but David falls into that in-between size range but I'll keep looking.

Thanks,
Cheryl

[sociologygeek]

Cheryl,
A warm welcome to you and your son! I am sorry to hear you were forced to give him up for adoption at birth.. I am also adopted, but from my understanding I was relinquished voluntarily. While I won't pry into matters you want to keep private, I am curious about how you regained custody..but if you care to answer that.. you can easily PM me. Where are you and your son from? I am from northern MI, and I actually have worked at a special needs camp 4 hours west of here, offering both a summer children's therapy camp, and an adult recreation camp. If you are interested, PM me for details.
I echo what Inconimiss said about using premium brand diapers if possible. In my own expereince with moderate to heavy mixed urge/stress/overflow incontience, I have found brands like Abena, ConfiDry, and Absorbency Plus excellent for extended wear use, while I use attends breathable for day to day use on a change-when wet basis. My situation is obviously different than David's, as I have some bladder control, and full bowel control, so far... knock on wood..

What is your son's waist size? That is actually an important consideration, because not all premium diapers are available in size small. If you are looking for an excellent source of premium diapers.. this is my one stop shop: http://www.xpmedical.com. The owner is himself incontient, and that gives him excellent insight and he can give great advice on product selection. His prices are the among the lowest I've seen, and his products ship very fast. I encourge you to give them a try! You can also get sample packs of the diapers he carries on his site.. hope this helps!

Peace out!

Rob

[JDinVirginia]

Hello Cheryl,

Welcome. You certainly have come to the right place both for support and information. You are sure to receive a lot of each here.

For your reading, I would recommend the two sources on wearing diapers listed below. They are the excellent and in-depth "The New Diaper Primer," and my own briefer white paper "An Introduction to wearing Adult Diapers, their Selection and Wear." Both works are in the Articles section of the site. I would recommend that you first look at my own introductory paper and then move on to the more detailed "The New Diaper Primer." Those two works should answer most of your questions and will help you to pose specific questions to the group.

THE NEW DIAPER PRIMER
http://www.incontinentsupport.org/primer_index.php

AN INTRODUCTION TO WEARING ADULT DIAPERS, THEIR SELECTION AND WEAR
http://www.incontinentsupport.org/Intro ... iapers.pdf

Good luck,
--John

[SeattleDoug]

All good posts above.

Another great adult diaper is from www.SecurePersonalCare.com and is called the X-Plus. That is a good over-sight diaper that is not so thick it can't be worn during the daytime, even in public. They has a thinner "Premium" diaper that is intended for day use. I found the X-Plus to be very good for either situation and since I'm completely incontinent having a great diaper is essential.

Currently I use the Abena M4 (product code 4164) for day and night because that is what my current insurance will buy.