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Thread: Diaper help again...AAAAARGH!!!

  1. #1
    Forum Committee - Moderator Robin's Avatar
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    Diaper help again...AAAAARGH!!!

    I am soooooooo frustrated right now! Target pharmacy has been amazing about filling our diaper prescription for Logan's size 7 Pampers Cruisers. I know they lose money on it, but they have been so wonderful. Unfortunately, they can only fill diaper prescriptions with products they carry in their store, and they have stopped carrying the size 7 Pampers! I've called around, and it seems to be all Targets, at least in our area. The pharmacists have tried to order them, but with no success. We knew we didn't have a lot more time that he would fit in them, but for now they still work. Now I have about 5 diapers left and no way of getting more. We also get the S/M Goodnites, but they fall off if they get too wet, so they are not an option for daytime. So..... right now I can either
    1. Pay for the Pampers out of pocket- the only place in town that carries them is about $12 for 18 diapers
    2. Find a substitute that will work and fit well AND that Target already carries (I have to drive at least 60 miles to get to Target) or
    3. Go with another pharmacy/DME provider and use whatever garbage diapers they want to give us.

    HELP! Are there any brand name, widely available adult diapers that are decent plus small enough for a 48 pound/ 44 inch 6 year old? The generics always fall apart or leak so bad that I might as well not put a diaper on him at all. We used Tranquility in the past, but I can't afford to pay for them out of pocket ($150 to $200 a month) and none of our local companies will provide them through Medicaid.
    Robin
    Mom to Avery, 13 yrs
    Logan, 10 yrs, MPS II
    and Kara, 8 years

  2. #2
    Senior Member Debra's Avatar
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    We get Wegmans brand pull-ups for Christian, and you're right, they aren't great but they work well enough. For Matthew they give us breathable attends, also at Wegmans. I can get the UPC number for you if you want, that seems to help them considerably (otherwise they give you these awful plasticky diapers). I'm totally satisfied with the Attends, and I know they have one smaller size than what Matthew wears. We have Medicaid so they're awfully picky about what they pay for. We also get overnight diapers, again, generic Wegman's brand.

    Debra
    Matthew (9, MPSIIIA), Christian (8, MPS IIIA), Melody (6), Caleb (4) and Daniel (1). Both Matthew and Christian are adopted.

  3. #3
    I don't know specifically about that brand, but our local Kroger Marketplace store seemed to carry a wide variety of larger size diapers when I happened to look recently. Case still fits in a 6 (41 pounds though) so we're still lucky. Are there no online pharmacy options? I hope you find something, and soon!
    Melissa, Mom to Tyson (9), Brock (7), and Case (6) - MPS II
    Ebook: Calmer: Medical Events with Cognitively Impaired Children
    SavingCase | Twitter | Facebook

    ~ The effectual fervent prayer of a righteous man availeth much.

    ~ I have heard your prayer and seen your tears; I will heal you.

  4. #4
    Forum Committee - Moderator PattyT's Avatar
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    Robin,

    I have switched from the Tranquilty's to a diaper that Prevail makes, but is better than their standard diaper. They are called "Prevail Breezers" They come in some pretty small sizes as well. Jesse is wearing a medium. (he has no A$$ or hips, LOL!) Our local medical Pharmacy orders them in for us.. they cost a $56.00 a case. A big savings from what the tranquilty costs and they work as well or maybe even better, plus they are breathable and have two velcro closures on each side that can readjusted anytime!! Here's one in youth sizes of a similar diaper

    http://www.cds-sales.com/item.php?it...category_id=90 You can order directly from them!!!
    God never gives me more than I can handle, though at times I wish the load was lighter :-)
    Love to you all!


    Patty and Jesse
    MPS III A


    http://www.caringbridge.org/md/myjesse < click here for Jesse's website

  5. #5
    Is there any way to order the diapers online (like at diapers.com) and then submit the receipts for reimbursement?
    Sarah, Mom to Gracie MPS 1 - Hurler's Syndrome
    Cord Blood Transplant on May 8, 2008


    Visit Gracie's Blog!
    Saving Grace

  6. #6
    Senior Member nicksmom's Avatar
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    Robin
    I get Nicholas' diapers through a Home Health Pharmacy here in town-they file all the Medicaid paperwork. Nicholas gets 3 cases a month.
    Good News-Nicholas also uses Prevail like Jesse. They are just like baby diapers. They come in very small sizes as well-when we were going to swich she gave us a lg to try-it was a youth lg and it looked as if it would fit the 6mo old across the street. I agree w/Patty I think you would really like them.
    Julie
    Mom to Nicholas-MPSIIIA-August 6, 1993-April 16, 2012
    and Jamie-21yrs old-Senior in college

  7. #7
    I do not have this issue right now but when I did there was one kind I liked that was not covered by medicade. Our medical suplie store got a letter from our Dr saying this was the only brand that Zach could use. We got them. Good luck.
    Hugs From Shaun mom to.
    Heather 20 and Married to Ethan
    Zach 19 MPS1-ERT
    http://www.caringbridge.org/or/haynes/

  8. #8
    Retired Staff - Forum Advisor Sharon Cochenour's Avatar
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    I got a letter from my pediatrician for medical neccessity. I called Andrew's wavier case manager and she gave me the places in town that took the wavier. I contacted them and got a sample and went with the generic brand of pull up they carried. If I didn't like them they said they would order something different.
    Sharon
    Mother to Andrew 12 yrs old with severe Hunters (MPS II), Natural History Study. Recieving ERT at home.
    Patrick 10 yrs old (not a carrier)

  9. #9
    Senior Member Momtoprettygirl's Avatar
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    We use Pampers Underjams for Emma. They are for bigger kids. Emma wears the size small/medium. I found that the huggies type for bigger kids don't fit over her butt..I would have to put them on backwards so she would not leak out of them.
    Underjams are a fairly new product, at least here in Canada they are.
    Good luck with finding something that works!!
    BECKY, VERY PROUD MOMMY TO :
    EMMA-LYNN AKA PRETTYGIRL MPS1- 6 YEARS OLD BMT 09/29/05 5 years ago
    BAILEY JOSEPH - 12 YEARS OLD The BEST big brother and son in the world!!

  10. #10
    Question about diapers - it sounds as if some of you get prescriptions for them and insurance pays for them.... Is that right? I mean, we would love to potty train Case, but is that likely? When would insurance begin to pay for diapers? Sorry for all the questions! Robin, I hope some of the answers above are helpful!!!
    Melissa, Mom to Tyson (9), Brock (7), and Case (6) - MPS II
    Ebook: Calmer: Medical Events with Cognitively Impaired Children
    SavingCase | Twitter | Facebook

    ~ The effectual fervent prayer of a righteous man availeth much.

    ~ I have heard your prayer and seen your tears; I will heal you.

  11. #11
    Melissa it used tobe that insurance would pay for diapers after a child is past pottytraining age I think 4 or 5 but that could have changed.(Its been a few years).
    Also it can never hurt to try and potty train. With Zach we tried he was 13 by the time he finally potty trained completly. We always would take him and put him on the toilet a few times a day. Good luck.
    Hugs From Shaun mom to.
    Heather 20 and Married to Ethan
    Zach 19 MPS1-ERT
    http://www.caringbridge.org/or/haynes/

  12. #12
    Senior Member nicksmom's Avatar
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    Melissa
    Nicholas started getting through Medicaid when he was still in Huggies lg. I remember the home health place just got them by the case at a local
    grocery. They got a Medical Necessity from his pediatrician. Hope this helps
    Julie
    Mom to Nicholas-MPSIIIA-August 6, 1993-April 16, 2012
    and Jamie-21yrs old-Senior in college

  13. #13
    Thanks guys! As always, so helpful!
    Melissa, Mom to Tyson (9), Brock (7), and Case (6) - MPS II
    Ebook: Calmer: Medical Events with Cognitively Impaired Children
    SavingCase | Twitter | Facebook

    ~ The effectual fervent prayer of a righteous man availeth much.

    ~ I have heard your prayer and seen your tears; I will heal you.

  14. #14
    Forum Committee - Moderator Robin's Avatar
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    We are going to get a case of the Select youth size. They are made by Tranquility, although they don't have all the features. Logan's school gets these for the kids in his class. We have always provided diapers since the Pampers work best for him, but the Select diapers aren't too bad. I am still going to look around for something that will work better. I have a coupon for a free package of the Underjams, so I am going to try those as well. I know Target carries them, so if they work, it would be a good solution. When I am up there again, I will look at the diapers they carry. Unfortunately, I know that a lot of the adult diapers start at a size S/M, which is way too big for him. If nothing else works, I think I will make him diaper covers to hold the Goodnites in place. At least that way we would only have to wash diaper covers instead of lots of soiled clothes.

    Thanks for all the input!

    Melissa- Diapers are generally covered through Medicaid or the Medicaid waiver. I know that you haven't been able to get on these programs, but hopefully something will work for you down the line. Logan was eligible at age 3 with a diagnosed disability. As for potty training, we just followed Logan's lead. I would have tried training him if he had ever shown any control or awareness, but he hasn't had either. He will still pee or poop with his diaper off and he is pretty much wet any time that I check his diaper. Some kids are potty trained, so don't give up hope!
    Robin
    Mom to Avery, 13 yrs
    Logan, 10 yrs, MPS II
    and Kara, 8 years

  15. #15
    Senior Member Jack's Grandma's Avatar
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    Robin,
    I don't know if this will work well for you, but www.drugstore.com carries pampers cruisers in a size 7 , something in the vicinity of 42.00 for 92 diqapers and you might be able to mail them an RX. Also, they deliver, and you wouldn't have to drive 60 miles!
    Claudia
    Grandma to Jack with MPS II
    & Nicole - unaffected

  16. #16
    Robin,
    You might check with HDIS. We've gotten diapers from them forever, before we had medicaid for Ricky and now that we do. I think their number is 1-800- 2MYHOME. They will even send out a sample pack for you to try to see if there's a diaper medicaid will cover that you like best for your child. When Ricky started back in diapers he was wearing a youth size. We got there no. originally from exceptional parent magazine.
    Hugs,
    Anita

  17. #17
    Junior Member noahsmom's Avatar
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    Hey, Noah gets 300 diapers a month delivered to us. He is on the ill and handicapped waiver and they pay for them...Thank God, because he is so big that the reg. diapers you get in the store will not fit him. I know that in Iowa they will only cover them if the child is 4 and over. I do hope to get him potty trained but it is not as easy as I thought it would be. good luck!!!! If you don't have a DHS worker then I would def. get one. They are very helpful and will know everything that you can get. also the social service worker at the hospital where Noahs gets ERT has been very helpful also in getting us tons of info.
    good luck.
    RACHEL
    Mother to Noah MPSII (9/24/04)
    Much love to everybody!
    'God, grant me the SERENITY to accept the the things I canot change,COURAGE to change the things I can, and WISDOM to know the difference'

  18. #18
    Forum Committee - Moderator Robin's Avatar
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    Thanks for the continued tips! We are now using Select briefs, which aren't bad. They don't absorb as well as the Pampers, so I have to get used to changing him more often (the carseat cover AND the stroller pads had to be washed when we got home from Disney today). We are still using the Goodnites for overnight, but I can't get both in a month (because the provider who carries the Select diapers won't dispense Goodnites, and vise-versa and Medicaid won't pay two providers in the same month) I'll probably have to buy a bag or two this month, but I think what I will do is get a months worth of diapers (250) all in Goodnites about once every six months. 250 is more than we need in a month, so I'll be able to skip a month of the Selects from time to time to get the Goodnites. We have said good-bye to baby diapers forever, but Logan is 6 now, so I guess it is time!
    Robin
    Mom to Avery, 13 yrs
    Logan, 10 yrs, MPS II
    and Kara, 8 years

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