Does anyone have a child using the Daytrana patch?

[ruadisneyfan2]

Ds9 was diagnosed with ADHD back in kindergarten. By 1st grade, he was able to swallow a pill with juice (Concerta) all was good until he started gagging a lot with it and having trouble swallowing it. Our ped. suggested putting it in ice cream. This worked until around end of 2nd grade when dh and I went on our 1st and only trip w/o kids for 4 nts for his big bday. My parents stayed at our house and, in our absence and for no particular reason, decided trying jelly instead of ice cream. (grrr....who on Earth likes a mouthful of jelly?) By the time we get back, he can't do it with either. He was so upset and increasing anxiety over taking his meds.

So we switch to Metadate sprinkles in pudding. This has worked for a while but several times this year he says he's taken it when really he just can't gag it down. He holds it in his mouth almost crying/trying to swallow.

He really really needs it for school. Without it, his behavior is just outrageous like laying on the classroom floor pretending to swim, besides not getting work done, staying focused, etc.
School will call us out of work when they realize he's not medicated since it becomes a completely non academic day for him. They also need to separate him from the rest of the class since he would be way to disruptive to let him stay. This has happened 3x this school year.

He is a non stop eating machine and really has no physical swallowing problems otherwise. We joke that he's part shark. This is why I think it's an emotional issue, not physical.

It takes him so long to muster the courage to even pick up the spoon and then holds it for 10 mins before finally getting it to his mouth.
I have tried being firm and yelling, patient and quiet, you name it. Nothing works. It gets him more upset when I sit at the table with him and watch him so I take a shower while he takes his med and puts his shoes on.

I already get up at 5:30 am to get us all ready, pack lunches etc, to be at work by 8. I have to clock in and can't be 1 minute late. I have been late so many times, I've been suspended and now in trouble again. (Must have 0 latenesses for 1 yr. to get out of trouble.) Now is not a good time to lose my job and I outearn my dh by 30% so if we wanted 1 parent to stay home anyway, it would have to be him. I just don't have 45 mins extra in the morning to wait for him to take his meds. Also it seems if I allotted 45 mins. he'd hold the spoon that long and we'd still be rushing. I currently wake him up 1 hr. before we have to leave and dress him too or we'd never get out the door.
Older ds13 has ADD and has been on Concerta since 1st grade when he could 1st swallow a pill and never had any issues with it.

I pleaded with my ped and finally she is willing to write for the Daytrana patch. (Sorry, you were wondering when I was going to get to that...)

If anyone has used it after using another med, how does it compare? Did your child have a hard time having it peeled off?

I was reading about recalls, not safety related, but in how it peels out of the package (tearing, etc.) One business article mentioned it hasn't made any $ for the manufacturer and it flat out doesn't work so when are they finally going to pull the plug on it.
I'm worried about starting something that who knows if it will be on the market next year.

Has anyone had any success with it? It sounds too good to be true.

I'd appreciate any feedback.
Thanks!

ps. We had to wait for the pharmacy to get some special authorization from our ped to get it filled so we can't pick it up til tomorrow.

 

[Caropooh]

DD15 was on it 3-4 years ago. We discontinued using it because it was really irritating her skin. She put it down near her hip and would rotate from one side to the other and her skin would still be red the next day. We also had problems peeling it off the backing sometimes.

 

[worm761]

DS used it until I changed insurance and the new insurance won't cover it. I loved it! He had none of the skin irritation. It starts working within 15 mins of being on and stops within 15 mins of taking off. DS showered and swam in pools and the gulf with it.

 

[ruadisneyfan2]

DS used it until I changed insurance and the new insurance won't cover it. I loved it! He had none of the skin irritation. It starts working within 15 mins of being on and stops within 15 mins of taking off. DS showered and swam in pools and the gulf with it.

Sorry to hear about the insurance issue. We haven't been able to pick it up yet b/c our insurance is making us jump thru hoops to get it. The pharmacy has to have our ped give the ins. company some authorization stuff for us to get it. It's taking longer than I expected. Hopefully by Monday we'll be able to pick it up.

 

[ruadisneyfan2]

DD15 was on it 3-4 years ago. We discontinued using it because it was really irritating her skin. She put it down near her hip and would rotate from one side to the other and her skin would still be red the next day. We also had problems peeling it off the backing sometimes.

This is what some of the recalls were about. I am hoping by 15 he can swallow a pill. Concerta is working great for ds13.

 

[barkley]

daytrana has been life altering for ds and us. it's been a difference of night and day. no more school complaints that he's distracted for the first hour (until the pills tended to kick in), no more crashing melt downs when he got home (they tended to wear off around 4 or 5 p.m.). AND -his appetite is much better. he's managed to put on 25 pounds in the past 3 years (he's still thin but now his ribs are'nt showing).

if you get a batch and the patches are hard to remove from the backing you can call the manufacturer and they will look up the serial number and send you a voucher for a free replacement batch.

as for the removing them-we use products like "medisol" (you can order it on-line) which are little wipes made to soften medical adhesive. just hold it over the patch and it comes off easily. it can also wipe off the residual glue and help protect the skin (they look like little alcohol swabs).

if you're having a problem with insurance ask your pediatrician if they have or will request one of the free one month vouchers from the manufacturer. this way you get to try one month free and it can provide the substantiation the doctor needs to get the insurance company to buy into covering it (ours initialy turned us down on covering it, but when the ped tried again the next month and could report the benefits vs. the other meds ds had been on we got green lighted).

the only p.i.t.a. about it is-because of the schedual it's assigned to you can't get refillable perscriptions, you need a new one every month-and it can't just be called into a pharmacy, you have to physicaly pick up the script from the doctor's office. then there's the fact it only comes in 30 day boxes so you end up periodically short one on 31 day months.

 

[ruadisneyfan2]

daytrana has been life altering for ds and us. it's been a difference of night and day. no more school complaints that he's distracted for the first hour (until the pills tended to kick in), no more crashing melt downs when he got home (they tended to wear off around 4 or 5 p.m.). AND -his appetite is much better. he's managed to put on 25 pounds in the past 3 years (he's still thin but now his ribs are'nt showing).

if you get a batch and the patches are hard to remove from the backing you can call the manufacturer and they will look up the serial number and send you a voucher for a free replacement batch.

as for the removing them-we use products like "medisol" (you can order it on-line) which are little wipes made to soften medical adhesive. just hold it over the patch and it comes off easily. it can also wipe off the residual glue and help protect the skin (they look like little alcohol swabs).

if you're having a problem with insurance ask your pediatrician if they have or will request one of the free one month vouchers from the manufacturer. this way you get to try one month free and it can provide the substantiation the doctor needs to get the insurance company to buy into covering it (ours initialy turned us down on covering it, but when the ped tried again the next month and could report the benefits vs. the other meds ds had been on we got green lighted).

the only p.i.t.a. about it is-because of the schedual it's assigned to you can't get refillable perscriptions, you need a new one every month-and it can't just be called into a pharmacy, you have to physicaly pick up the script from the doctor's office. then there's the fact it only comes in 30 day boxes so you end up periodically short one on 31 day months.

Thanks for the tip about the adhesive removers. I work in a hospital so I'm very familiar with them. I am used the PITA part, with the 30 day supply, must pick up script, etc.

I found a $60 coupon on the website but no free 1 month supply. I will contact them and ask. It seems so many ins. companies deny payment on it. I wonder how much more it costs compared to Concerta, Metadate, and others?
I sure hope we can get approval. It sounds perfect. He's currently on Metadate and his teachers say it's worn off by 2:30. It's extended release med but still his metabolism is so fast, even Tylenol lasts him 3 hrs max and Motrin 4 hrs max for fever reduction.

 

[barkley]

Thanks for the tip about the adhesive removers. I work in a hospital so I'm very familiar with them. I am used the PITA part, with the 30 day supply, must pick up script, etc.

I found a $60 coupon on the website but no free 1 month supply. I will contact them and ask. It seems so many ins. companies deny payment on it. I wonder how much more it costs compared to Concerta, Metadate, and others?
I sure hope we can get approval. It sounds perfect. He's currently on Metadate and his teachers say it's worn off by 2:30. It's extended release med but still his metabolism is so fast, even Tylenol lasts him 3 hrs max and Motrin 4 hrs max for fever reduction.

it just so happens i have the receipt from safeway that comes w/ds's daytrana, and they post the cash price next to what we pay as a co-pay. now i'm sure the insurance companies get a break, but if i had to pay case out of pocket for ds's 20 mg. script it would be $219.99 per month.

the one month free coupons are given to the doctor's offices and are usualy in some kind of flyer packet from the manufacturer.


my ds does'nt have the issues with time release on meds, but he does get the opposite reaction effect to meds some adhd kids get-benedryl makes him react like he's been power chugging espressos, and we have to go to a pediatric dentist whose had training in how to administer novacaine and nitros oxide for kids with this kind of reaction.

with ds's patch since i get up about 2 hours before he has to get on the bus, which is about an hour earlier then he needs to get up i just apply it to him while he's still asleep. he tends to wake up in a much better way (seems to take about an hour to kick in).

 

[freckles and boo]

Both my kids have ADHD. My older daughter had bad skin irritation with Daytrana but my younger daughter has tolerated it very well for over a year. We put the patch on her at 6:30 on the morning and by the time she starts school at 8:30 it is in her system and working. We take it off when she gets home from school at around 3:30. She also has autism so this is a much better alternative than trying to get her to swallow a pill. It definitely is a hassle to have to call the doctor's office, have the Rx written, pick it up, take it to the pharmacy, etc every thirty days. Another hassle we had for a while was finding a pharmacy that regularly had it in stock. Walgreens was a PITA but CVS has been great. With our old insurance I was able to get a 90 day supply for her through mail order with a much lower co-pay. I haven't looked into it yet with our new insurance but our co-pay is now $50/month. We also haven't had too much trouble with the backings lately although that may be a matter of experience as much as improvement of the product. I probably wasted 10 patches the first week she was on it trying to get the things to work but Shire did send a voucher to replace them.

 

[Kat77]

It definitely is a hassle to have to call the doctor's office, have the Rx written, pick it up, take it to the pharmacy, etc every thirty days.

Two of the Dr.'s we use will mail scripts IF we provide them prestamped, self- addressed envelopes. I make sure to hand them a stack every time there's a medcheck. I still have to call monthly for the scripts though. It's worth inquiring...

 

[ruadisneyfan2]

Two of the Dr.'s we use will mail scripts IF we provide them prestamped, self- addressed envelopes. I make sure to hand them a stack every time there's a medcheck. I still have to call monthly for the scripts though. It's worth inquiring...

Yes, it's a PITA but the least of my problems. Our insurance is denying payment for it. Our ped called for some type of peer to peer review and I faxed a letter explaining all the steps we tried before reaching a decision to try the patch. Our ped says it's not looking good.

I really don't understand why when the patch is actually $35/month cheaper than the med he's on now.
They'd save $ and we'd all be happier.

 

[Kat77]

I really don't understand why when the patch is actually $35/month cheaper than the med he's on now.
They'd save $ and we'd all be happier.

I know for hospitilizations that insurance companies cut deals for stays/treatments... maybe meds work the same way and the one you want did not give a good discount? Our Dr's often have to fax tag with insurance over med approvals. It is usually just formality and means nothing unless the med is new on the market and/or expensive. In that case,
our insurance requires you try (and fail on) two "approved" meds before they will cover certain ones. We are currently paying OOP for DS9 meds because of this. I'm terrified of taking him off known working meds to play medication roulette with insurance. Ugh!

 

[ruadisneyfan2]

I know for hospitilizations that insurance companies cut deals for stays/treatments... maybe meds work the same way and the one you want did not give a good discount? Our Dr's often have to fax tag with insurance over med approvals. It is usually just formality and means nothing unless the med is new on the market and/or expensive. In that case,
our insurance requires you try (and fail on) two "approved" meds before they will cover certain ones. We are currently paying OOP for DS9 meds because of this. I'm terrified of taking him off known working meds to play medication roulette with insurance. Ugh!

This is it exactly. They have a list of approved meds. The patch is same med as Ritalin, Concerta, Medate, etc. just a different route to bloodstream, all of which we've tried. We would have to have tried/failed at 2 other types of meds (non Ritalin-based) or have an allergy/reaction/contraindication for them to approve the Daytrana. It's not that the med doesn't work, it's a matter of patient compliance, as my ped says.
I am seriously considering just paying oop. It works out to $6.33 per day if $190 per box of 30, what some of my coworkers pay or more for lunch while I pack from home every day. We don't use meds during weekends/summer/vacations unless he has a school project or something else that requires him to really focus.

I feel like I should at least try it for 1 month and see how it goes. Maybe he'll have a skin reaction and can't stay on it, maybe it will make our whole lives a million times easier. We won't know until we try.

Of course, open enrollment selections to change ins. companies at my work became effective 1/1/10. Right now we're on dh's ins. but could look into if one of my choices might cover it. I could have selected FSA contributions so oop would be tax free but now have to wait until next year for this.


Did you find that prices vary between pharmacies? Should I call around or are they all set at same price? It was hard just finding one that stocks it.

 

[kehlyrsmom]

My daughter is ADHD but also has Aspbergers. She was originally on a form of Ridelian(sp?) that the original small dose she was on did not work so the Dr increased her dose and all that did was enhance any of the bad behaviors she had. If she got upset she was a runner, did this at home and ran out of the school several blocks down the road. Also increased the intensity of her melt downs she would become quite violent.

She started seeing a pediatric neroligst who also diagnosed her as having the Aspbergers on top of the ADHD. Anyway she swithched her to the Daytrana patch which we actually cut in half (the patch is 10 mg) so she is getting 5 mg of Daytrana but she is also on Abilify the dose she is on is 2mg but we also cut that in half. She has made great improvements she has been on this combination for two years. The Abilify has made her gain a lot of weight so the neuroligst is going to have us try taking her off of the Abilify this spring. The Abilify is to help with the Anger and meltdowns caused by her Aspbergers. She also sees a conselor and they have worked with her on controlling those issues, but she will stay on the Daytrana the dose of it may possibly increase.

Anyway it has worked very well for her. The only problem she has had if she forgets to take off her patch for some reason she will have a hard time sleeping at night. It is $$$ though (our insurance does not pay very well on our prescriptions though). It does help though that we can get the standard 30 day supply which will last us 60 days since she is currently on a smaller dosage. That may be something for you to consider if you can get a larger dose but cut it in half it will help with the co-pays and such.

 

[ruadisneyfan2]

ok. So I started calling around different pharmacies. Walgreen's was cheapest if we join their 'club' which is $20 per individual per year. It does give $40 off a 30 count box so the club would pay for itself with 1st box. $167.98 for the 20 mg.

Another option I wanted to share for anyone paying for this OOP, if you don't have a Walgreen's, you can buy it at drugstore.com but must mail in paper script w/in 30 days of date written, just like a brick/mortar store.
Dh was worried that it was some foreign pharmacy or something so I looked into it and they're based not far from me in Swedesboro, NJ and licensed for all 50 states.

http://www.drugstore.com/pharmacy/prices/drugprice.asp?ndc=54092055430&trx=1Z5006

hope this helps someone!

 

[poohguys]

DS9 has been on Daytrana now for two years. He can't swallow pills either. Has worked very well. We have had to increase him once from 15 mg to 20 mg. One previous poster said it works for thier child in 15 mins. I would say it takes close to two hours to be fully working on DS. I put it on him just before I leave for work at 6:30 (while he is still asleep) and by the time DH puts him on the bus at 8:30 it is working. Have had problems a few times with not being able to remove the patch from the plastic. Sometimes DS has a little irritation, but nothing that bad. He usually keeps it on until about 6:30 at night.

When work switched insurance co. out out of pocket went from $50 to $25. I feel for you having to pay totally out of pocket. I hope you are able to work out something to get the insurance company to cover it!

 

[ruadisneyfan2]

DS9 has been on Daytrana now for two years. He can't swallow pills either. Has worked very well. We have had to increase him once from 15 mg to 20 mg. One previous poster said it works for thier child in 15 mins. I would say it takes close to two hours to be fully working on DS. I put it on him just before I leave for work at 6:30 (while he is still asleep) and by the time DH puts him on the bus at 8:30 it is working. Have had problems a few times with not being able to remove the patch from the plastic. Sometimes DS has a little irritation, but nothing that bad. He usually keeps it on until about 6:30 at night.

When work switched insurance co. out out of pocket went from $50 to $25. I feel for you having to pay totally out of pocket. I hope you are able to work out something to get the insurance company to cover it!

OP here. We also got a $60 coupon from Daytrana that can be used 3x. Which brings the cost down to $107. This will get us through the end of the school year and give us a good idea of how it's working.

We tried Fri 1st time. I thought I could tiptoe in his room and just stick it on him. Not so smooth. Of course it woke him up almost 1 hr before he had to wake up. (5:45 vs. 6:30) I felt bad but that will come with practice. Some of the sticky kept sticking to the peel off part, just a teensy bit at the edge. I guess that too gets easier.

Good part: no tears, no yelling that I'll be late for work, no pressure. If this is the worst part, I'll take it!!

 

[ruadisneyfan2]

Quick question...
Ds is had some redness with the 1st Daytrana patch. It was gone by the next morning which was Sat and we don't medicate on weekends.

I got some adhesive remover wipes and used one. Then rinsed a little with a wet paper towel since that is a chemical too.

Is there something good to put on it after the patch is removed? topical Benadryl? hydrocortisone cream?
Dh put Aveeno hand moisturizer on before I got home from work but I'm thinking there is something else more appropriate.

Thanks!!

 

[poohguys]

DS has redness sometimes we do not put anything on it usually goes away on its own. Doctor had said you could use some Skin so Soft on it.

Hope the patch is working out for you!

 

[ruadisneyfan2]

DS has redness sometimes we do not put anything on it usually goes away on its own. Doctor had said you could use some Skin so Soft on it.

Hope the patch is working out for you!

Thanks it's good!
The only difficulty is for me not ds. Getting the backing off the patch is really a bugger. Esp since I'm so bleary eyed when I 1st wake up in the morning. I have to put on dh's thick reading glasses and used pointed tweezers to get the thing going. Then the sticky starts peeling off along with it. I've wasted 4 patches so far and saved them and will write a letter to Shire.
I've decided to peel half the backing off the night before and get the other half started so it's easier in the am. I hope that it sitting on the counter overnight doesn't decrease its effectiveness at all.

Thanks everyone for your input!