Yet Another Follow-Up on Daytrana

4 11 2010

J has been on the Daytrana patch for about 3 years now… we put it on before he wakes up and take it off as soon as homework is done in the evening. We’ve gone up on the dosage and gone back down and generally speaking it’s been good.

Lately, however, we’ve noticed that there is a bell curve on the effectiveness of Daytrana during the day.

  • 6:30 Patch goes on
  • 7:15 Rise and Shine!
  • 8:15 bus comes– pretty smooth ride to school
  • 9:00 all hell breaks loose
  • noon– zombie time to 2:30 ish
  • 2:30 very productive time of day– good conversations, descent focus
  • 4:00 home from school and homework– very smooth
  • 5:00 patch off– play time (usually computer, editing)
  • 7:00 my son comes back to life (hungry, funny kid!)
  • 10:00 bedtime

Not sure if there is a moral to this story but, I talked to his teacher and this is an accurate portrait of his day… so, I’m going to talk to J’s doctor and see about switching meds at Christmas Break so that if it doesn’t go well, we can go back to the tried and true-ish when school starts back up.

By the way– we have recently figured out that Band Aid brand blue no hurt antiseptic wash works great on the red-sore icky spot the patch’s adhesive leaves behind… Just thought you’d want to know.

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Spring Break at the Smithsonian

15 05 2008

Earplugs, Cousins and Dinosaurs

J and Cousins on the Mall, Washington, DC, Spring 2008

J at the Smithsonian Castle, Spring, 2008

J and Kermit the Frog, Smithsonian, Spring 2008

J and his Cousins at The Smithsonian Musuem of Natural History, Spring 2008

I am so behind with my blog!  But here you have a few pictures from our spring break in Washington, DC and Maryland. I haven’t gotten the video done yet… Shame on Me!! But, we really had a great time! We went to the Smithsonian Museum of Natural History three times and saw the Dinosaur IMAX movie each time– J loved it! There were a few things that made these excursions a success– we had earplugs, went at his pace and the museum is designed so that anything that is touch-able is ok to touch. It’s a great place!! J did a lot of reading and learned a lot about Mammals and Dinosaurs. He had no interest in several sections so we didn’t linger there– like butterflies and birds– those freak him out…

We did go see Kermit the Frog twice at the temporary exhibit at Air and Space. (American History, where Kermit usually lives, is closed for remodeling). J loves Kermit! We also saw R2-D2 and C3-PO (J calls him CPA! HA!!) The place was crowded… there were lines and J did great anyway. 

My goal is for J to have a full life with lots of experiences and memories. The fact that he has autism (not the other way around!) is not a deterrent– it’s a factor.  I carry earplugs, snacks, an extra t-shirt in case he gets it wet (that’s a BAD thing!) and he carries a “guy” or two. We go at his pace and there is some negotiation– first we go see the dinosaurs then Mom wants to see the Hope Diamond, then we’ll get pizza.

We build in alone time for J whenever we travel. We make sure he has a ton of his comfort things– favorite shoes, jammies, toys and always– a DVD player with headphones. We carry extra clothes and an umbrella. Autism doesn’t limit what we do– it only affects how we do it.

The kids in the photos with J are my sister’s kids.

(My apologies for being silent so long, Darcy!!)

 





A Follow Up on Daytrana

15 05 2008

Daytrana is a wonder-drug! We love it!! But– there are a few side effects that we are dealing with so I want to share the little tricks we’ve discovered to make the side effects less horrid.

REDNESS AT THE PATCH SITE

J is hypo-sensitive which basically means that he doesn’t feel pain– or pleasure– as acutely as most people. This isn’t all bad but has to be watched. Anyway, J’s skin gets really red and irritated with the Daytrana Patch.  We apply Bath and Body Works “Put it on Ice” which is a pain relieving cooling gel with Lidocaine immediately after pulling the patch off. It cools it and deadens the pain.  I assume that any post sun lidocaine lotion/gel would work we just had this at home already.  FYI– the first aid creme we tried first didn’t work. 

LOSS OF APPETITE

J is a skinny little guy. He eats white food and with Daytrana has been eating less of it.  Fortunately, Daytrana is out of his system within 3 hours of the patch removal. So, we take the patch off as soon as he gets home from school and have moved dinner to 7:30.  I am encouraging snacking all evening also.  We had been dealing with practically no eating at dinner and snacking starting close to bedtime so this works really well for us.

We ran an experiment along with J’s teachers and therapists– one week with Daytrana, the next week without.  On day two of no Daytrana, his teacher called and pleaded that we quit the experiment.  She saw so much difference in him!

Daytrana is a God Send.  J is doing so well in school and actually has two friends now– Moms are coordinating everything but the kids are doing so much better at interacting without too much prompting. So, we love Daytrana and feel that the side effects are manageable– well worth it.





ADD: The Patch

13 03 2008

J is doing pretty well with the Daytrana patch. He’s been on it for a week now and I’m seeing some positive changes in him. It hasn’t been bump-free though…

Two days were big cry– I want to go home– days at school and his poor bottom is checkered with little red squares… I’ve finally figured out how to help him with the skin irritation– Band-aid Hurt Free Antiseptic Wash helps get it off and a little first aid cream helps with the soreness.

The crying wasn’t such an easy fix– we couldn’t figure out what the problem was. He told me that he wanted to go home and Mrs. K wouldn’t let him so he was sad. His teacher, who should be sainted; “St. Mrs. K” said that she couldn’t find anything that was different or that could have triggered it.  One of the possible side effects are mood swings so maybe that’s what it was.

He’s had two good days in a row… so, here’s to it being taken care of and smooth sailing from here on.





ADD and Autism… Pass the Meds!

10 03 2008

J was screened for ADHD last week and is now on the Daytrana patch. I’m not sure how I feel about my little fella being on another daily medication (He takes Glycol for his constipation already) but, whatever it takes to help him grow into a productive member of society… we’re committed to helping him despite our reservations.

When I was filling out the questionnaire prior to the screening for ADHD I wanted to write paragraphs not just circle numbers– “yeah…. he hurts people physically sometimes but it’s not malicious! He gets overloaded… frustrated and just lashes out. He’s a good boy!” But, these questionnaires aren’t personalized… they don’t really want to know him just whether or not he has certain markers that categorize him. 

There are 10 possible markers for attentional (as opposed to behavioral) issues. J has 8 according to his teacher’s assessment, 7 according to mine and 4 according to his father’s… My husband tends to be a little rosy… and, his time with J is fun– he gets the play time, snuggle for bed time not reading time, not chores– just the fun stuff so he doesn’t know the struggle to get through a chapter of Junnie B. Jones or  getting the dogs fed. J does have ADD. (The H is for Hyperactive and J doesn’t have that part… just attention defecit)

We talked to the Doctor about several options– meds that come in pill, powder and patch form and we selected the patch.  With J’s food issues and past fights over taking cold medicine we thought that was the best bet.

He’s been on it for three days and we think we’re seeing some positive changes. His appetite seems to have decreased so I’m making pizza every night–he loves peperoni pizza so I’m hopeful that he’ll eat some.  So far so good… but, I’m concerned that he’ll loose weight– and he doesn’t have any to spare! At least he doesn’t seem to have any of the other possible side effects (headaches, dizziness) or we’d have to find something else.

I don’t want to be overly optimistic or see things that aren’t there but,  it seems as though the fog is lifting for J.  His speech is more complete– sentences! Responses to questions and responses to his name called…. he’s reading better– doesn’t have to be re-directed as often. He’s following through with directions and seems to be clearer.

I’m glad he’s taking meds. I hope we are doing the right thing for him. I hope this makes the difference for him.