My 8 year old ds has been on 10mg Daytrana for 40 days. We started with a 10 day script to test it out and then I got a 30 day script when that was over. We went to Disney for Christmas and so I took 10 patches with us to cover any delay in flights etc. While in Florida we had issues of the patch tabs "backing" coming off. When we would try to take the tab off to apply the patch the tab would stick and the med would actually peel off onto the tab. I really thought that this was a result of being in Florida and being humid. But, when we returned we still were having issues with the patches that we left here. So, even though this is not medication that requires it to be refrigerated I put them in the fridge thinking that if they got cold they would peel better. I also thought I may have just gotten a bad batch. Since then we have up'd his med dose to 15mg. New script new med and the first morning that I tried the new patch I ruined 3 patches. Same thing happened the med peeled off onto the tab. So, I called my pharmacist who I really think is sick of hearing from me (we have a pharmacy through my work). He said that I would have to contact Daytrana directly. The first time I called them I was on hold for 40 minutes and then left a message to have them call me, It said on their recording that they would return the call within one buisness day which they did not. I called back the second day and stayed on hold for another 40 minutes and finally a representative answered. I explained the story as stated above and she informed me that she could help me but I would have to drive to the next nearest state pharmacy.
They are aware of the issues with the med peeling and are working on this issue. In the meantime they are giving out to people what is called a "Trial Card". I had to go to his doctors and get a new script and once the trial card comes in the mail I am going to PA (I live in NY) and going to give them the script and trial card and I will received 40 new patches. There is no limit to the trial cards as long as you have a script. Shire (who makes Daytrana) advised that they do not want people to use any of the patches when the med comes off. I figure as long as most of the patch is there then at least he is getting something. I was worried because I ruined and three and then that meant that there was three days that he would have to go without.
The reason NY does not participate in this is because they consider getting a controlled substance med for free peddling. Which is illegal. But, apparently other states do not. I do know that NY is pretty strict with their regulations on dispensing a controlled substance for instance our scripts have to be on a triple script pad not a regular script pad etc.
So, now I am waiting for the trial card. The craziest part about this is that now that the patches have been in the fridge since dec they now peel off without a problem. I told the lady from Daytrana that and she said "Isnt that weird".
Anyone else having issues with this med. This is all new to me.
Update:
I did not go to PA with the trial card. My ds woke up with a really bad rash and cracks on his legs were the patches were. I had a meeting with the school Thursday morning (son to qualify for 504 which he did). The teachers in the meeting said that they know that the med is working for me but he still is not focusing or sitting during class. He still is getting up and walking out of the room. He screams at the top of this lungs for no reason extra. I thought maybe I could up his meds but for anyone dealing with the patch the higher the dose the bigger the patch. My poor little ds legs are not big at all and if I up him to 20 or 30 he wont have a leg left. There will be no more room to alternate legs.
So, I talked with my husband and my son and we decided that we were taking him off the patch and going to put him back on Dexedrine 10mg with a 5 mg in the afternoon. The only reason I put him on the patch was because of how long it lasted with not remedicating but the legs are a big issue with me and he now is taking off the patch during school. No wonder the school says it is not working. It can not work if it is not on.
Since I took my ds off and put him on something else I had to yet again follow up with the doctor. He looked at his legs and stated that he is allergic to the adhesive on the patch. He did recommend Eucerin healing cream for his legs. I will let you know.
I wish anyone who is still using the patch good luck and I will look for updates on how they are fixing the tabs issues.
If any of you would like more experiences then go to the ADHD medication forum. There are many threads about Daytrana. I think that most of us have some problems with the patch at first. We have been on the patch for quite awhile now and it is fantastic for US. We did have problems with the backing at first and with rashes and red spots. Diaper rash ointment is great. DS is 9 and is on the 20mg. He also just made the AB honor roll for the first time.
DS also chewed his cuticles years ago when we had him on other meds. He doesn't do it anymore. Some of the meds made him SUPER nervous.
It is all a trial for these kids but, when you find the right med it is wonderful. Good luck
I received my trial card today and will go to Pa tomorrow hopefully to get the "free" ones. I will try the cortaid or Avenoo and maybe that will work. His legs are pretty red right now. We do wash off the leg with babyoil to remove the patch. I was told that the stickiness is the med not adhesive and that we need to make sure it is all off or he will eventually be over medicated.My son has been using the daytrana patch since it first became available. I am very lucky that because I am a nurse that works part-time at a pediatric clinic and full time at a dermatology clinic I am able to utilize the knowledge of both doctors I work with. When my son's skin gets irritated the over the counter cortaid (highest strength steroid you can get without an rx) knocks the redness and irritation out fast. Also during his bath I have him soak the area with a soapy washcloth for awhile, that has seemed to help get the adhesive that stays on afterward off easier without more irritation. I then put a thick, creamy moisturizer like cetaphil on that area. I like it because it is good for sensitive skin and the thicker it is the more it moisturizes.
My son has been on the 30 mg patch since he started and had been doing really well on it, except for his appetite. Though lately I have started to notice that he gets really emotional over little things and has started chewing his nails and picking his cuticles until they are painful. I have tried to do some reading on long-term effects of daytrana but since it is new there is not a lot to read. I am beginning to think that we may need to cut him back to the 20 mg patch. In some of the reading I was doing it looked like maybe the meds build up in the system after awhile or maybe stay in system longer and I am wondering if the 30 mg is too much. I would love to know if anyone had to reduce their childs dose and why?
YES!!!!!!!!!!!!!! I thought I was crazy! I am so glad you have this problem well not glad but I have hte same issue! I was putting htem in our medicine cabinet above the stove and thought that was the issue. I will try the fridge!Thanks so much! I have to give my son(5 yrs) 15 mg in the morning because the patch takes 2 hours to get into his system. We are on the 20 mg. Datrana.I thought the pharmacy and Shire "Daytrana" company thought I was out of my mind. Maybe by now I am since I put a non refrigerated med in the fridge but at this point I am willing to try anything. When I called Daytrana they did not give me a time to expect the trial card. I am glad that they giving me the card I was worried what would happen when I got the end of the month and needed more patches because I have ruined three already this month.
"Reactions" The only thing right now we can see is that his skin is really dry where the patch was. I am trying different creams to see if I can get it to clear up before I put the patch there again. Any recommendations let me know.
My son too would have that problem with his skin. Also, the glue stays on after his bath. I took him to the pharmacy and asked if it was an allergic reaction and they said not to the medicine. I put Aveeno Anti itch creme in a tube. I put it on really think before he goes to bed plus I now alternate 4 places instead of two each day I put it on. Upper hip right, upper hip left side hip right then side hip left... Baby oil rubbed on the glue with a wash rag helps get it off easy and it helped with the redness. I am going to call DAytrana in the morning to report the trouble.
My DD has been using the patch for about a year now , and was involved in the phase 2&3 med trials. Shire is well aware of the adhesive issues with it.....beleive me I made them aware!
As far as rashes, we have had none as long as it is placed on dd's hip and not her leg. For some reason the skin there works better with the patch. She actually does not even change hips, as she prefers it on one side all the time.
Update Again:
We started to use the Eucerin on Friday and today is Sunday and his legs are looking 100% better. He has been on the Dexedrine 10mg since Saturday. He will go back to school Monday and I am hoping that they will see a diffence.
He will start to take a second pill at school. I hope that it all goes well.
I am the type of person who wants to have all the control over the meds and to turn that over to the school makes me worry.
Pray that all goes well.
Maxed Out