One year of being GFCF!!!

Ashton - 1oyrs (July 2009)

Well, we've done it. We've made it to a year since having gone GFCF (gluten free, casein free)! We started the diet in late August of last year and WOW, what a year it has been! We've removed him from his 2 behavioral meds (Focalin XR/Adderall XR and Risperdal). For some reason, both medications all of a sudden stopped working; and in fact, were putting Ashton to SLEEP within 20-30minutes of taking them. Odd, but I guess it was his body's way of letting us know that he was done with those medications. We've also taken him off of melatonin as it was no longer doing any good, but we've got him on Clonidine and Imipramine to help him sleep at night. It's still not perfect but at least with this combination of meds, he's not waking up half a dozen times to pee! Oh, speaking of peeing ... HE IS POTTYTRAINED! And not just day-time trained for pee, but day AND nighttime for pee AND poop! WOO freaking HOO!!!! We started him on the regular Monavie in May of this year and within two weeks, he was totally pottytrained with NOTHING having changed on our parts. It was like a lightbulb went off in his head and he was trained. He does the whole deal on his own. He goes without us having to tell him, he wipes himself and the WHOLE BIT! Now if we could get him to stop stripping everytime he uses the bathroom (this IS getting better, slowly!) we'd be doing great! He only does this in people's homes, nowhere out in public, thank goodness! But at 10years of age, it's SO GOOD to not have to drag a backpack and wipes/pull-ups with us EVERYWHERE we go. I still keep an extra change of clothes in the car (for both boys, actually) but that's more of a habit now and we don't ever carry it in with us anywhere. We were JUST about a month ago able to take him off of Risperdal. While he hasn't gained any weight in the last year on it (and also subsequently, his dosage hasn't changed either), I wasn't fond of him being on this. So, coupled with the fact that it seemed like he no longer needed it along with the hesitation of being on such a powerful atypical anti-psychotic drug, I stopped giving it to him with 100% success! WOOHOO! YAY! We removed the FocalinXR/Adderall XR (we switched from one to the other but they both basically do the same thing) in December when we noticed that he was always sleepy after taking it. Weird, but whatever works and he's been off it successfully ever since. Yes, he still takes 2 prescription meds for sleeping, but he's NEVER been a good sleeper, EVER. He goes through good phases, but they typically die off and go right back to constant waking-up all night long. At least now he goes to sleep between 9-9:30pm and I don't hear him awake until 6:00am or so. He might still wake once a night but he doesn't come in MY room anymore (that's a plus!) and he doesn't go in the room over the garage. It's getting better, slowly. Ashton still takes a calcium/vit D supplement since he is dairy-free. He also takes a high dose probiotic to keep the yeast monster away. He also takes cod liver oil and super nu-thera. Nothing has really changed as far as supplements go, other than the Monavie. I'd like to switch him to the Monavie Active, but we're trying to get through our supply of the regular Monavie first. It'll be interesting to see if we notice any big changes with the Monavie Active, but we'll see.

And, for the first summer since he was 4years old, we didn't send him to summer school! We made a HUGE gamble on this, but in the end, it turned out it was the SINGLE BEST THING for Ashton. Last year's experience was such a DISMAL experience that I was unwilling to have him regress AT ALL considering all the gains he's made in the last year. Instead, we signed him up for 3 weeks of Camp Gonnawannagoagin, alternating every other week. HE DID GREAT!!! He did so many FUN things (aquarium, zoo, ocean breeze, bowling, air boat rides, bounce houses, and lots of other fun things) and was quite social with his peer buddies from what I was told. I think the next time we send him, I'm going to ask that he be paired up with an older teen male, to see if that makes a difference in his level of participation in the more active activities. He LOVES the attention he gets from girls, but I DO think that a male could encourage him to be more active, whereas the girls are more likely to "baby" and fawn all over him and let him be a bit sluggish. Either way is good, but I'd LIKE for him to start showing interest in more active things not just sitting and reading a book (which is all well and good, but ya know what I mean). School starts in just over 3weeks and other than the fact we have NO IDEA who the teacher is going to be, I foresee another great year for him. He's had a lot of personal and social growth and cognitive growth so we'll see. We're also gearing back up to start OT and ST, neither of which he's had since the spring (we stopped OT back in March and stopped ST in June). He also hasn't had ANY services ALL summer, which is mind boggling because usually you make sure you have services during the summer to PREVENT regression. But, he hasn't had ANY! YAY!! So all this to say that a year into GFCF, and we're still going strong. Still plodding forwards without too many backward steps. We've been lucky and blessed to have such an easy-going kid to begin with. Further blessed by the support network we have (family, friends, therapists, school personnel) and further by our two boys. Have a wonderful rest of the summer and start of the school year!!!