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!!!

6months GFCF.....

My 2 gorgeous boys, Holden (6) & Ashton (9)

Well, it's our 1/2 year anniversary since going GFCF, so I figured we should celebrate, right?! :-D Ashton is doing extremely well, all things considering. Through the journey, he's battled several illnesses (and seems to be on the verge of another... argh!) such as pneumonia (which quite literally, knocked him on his butt for 2weeks.....!) and sinus infections. He's of course also dealt with the yeast monster (which we're treating with Nystatin and probiotics) and he's taking Super Nu-Thera, Calcium and Cod Liver Oil. Unfortunately, he's battling another cold/upper respiratory junk right now so he hasn't had the supplements/meds in a couple of days. He'll be back on track tomorrow though as I don't want his system to get used to NOT taking them, if you know what I mean? So .... BEFORE the diet ... 1. we had CONSTANT diarrhea, MULTIPLE times a day along with a nasty rash all over his behind 2. CONSTANT meltdowns over the SILLIEST things (move his plate an inch, screaming banshee comes alive!) 3. he had very little interest in his peers 4. was a CONSTANT battle to get good work out of him 5. and he just seemed so combative over EVERYTHING! So... AFTER the diet ... 1. his stools are down to ONCE a day (woohoo!) and are mostly formed. They got a bit icky when we started Nystatin (and each time we raised the dosage) but they're "okay" now. Not back to what they were pre-Nystatin but ANYTHING is better than runny water MUTIPLE times a day! 2. We're able to talk him through most of his meltdowns, which are really NOT meltdowns, just some minor "fussing us out" because we're asking him to do something he doesn't want to do. 3. he's become a social bug! He'll approach peers (and others) with interest and try to engage in conversations. Still a long ways to go but heck, I'm just happy that he's interested in other people, besides ME! lol 4. He does pretty good work with his system of reinforcers, with very few (if any) verbal reminders. 5. he is back to being our easy, laid-back kiddo! His eye contact is SO much better, his spontaneous speech has increased dramatically and he's a whole lot more conversational. Still working on him using SENTENCES as opposed to 2-3word phrases, but it's better than having to second guess him all the time. His eating habits have improved drastically and he's eating things we thought he'd NEVER eat, woohoo! I'm anxious to see what the future holds for us, and as long as we see improvements, we'll keep trying new things. We're getting the heavy metals toxicity test done and that's our next step I think. We'll see. SO ... if anyone out there knows someone contemplating this diet for an OLDER child (over the age of 5 or so...) please feel free to forward my email to them. I know SO many people think "oh my kid is set in his ways, he'll never go for it..." well, I thought the SAME EXACT thing and my kid is surprising me every day. Just wanted to share!

Ashton's 2nd DAN appt w/ Dr Madren

We discussed Ashton's list of supplements; currently we're doing Cod Liver Oil, Super Nu-Thera, Calcium and Pro Bio Defense (a probiotic, to help promote good bacterial growth in Ashton's digestive system/intestines). Ashton is also still taking Risperdal (1mg), Clonidine (.1mg) and Melatonin (3mg). He's still taking Nystatin as well, but we changed the dosage from 2tsp/2tablets, 2 times a day to 2tsp/2tablets, 3 times a day. The feeling is, if we saw die-off symptoms with the initial dose of 1tsp, 2x a day and then an increase in symptoms from the 2tsp, 2x a day dosage, that we'll see even more die-off, and more positive changes from 2tablets (same as the 2tsp), 3x a day! Whew! So, with the additional Nystatin dose, we've had to revamp his med/supplement schedule, as he can't take the anti-fungal and the probiotic at the same time. We also decided to not use Omega Brite Kidz (Omega 3 supplement/Essential Fatty Acids), as I couldn't find any one place that I can go to and buy all the supplements. Plus, our Dr. Madren said that using Cod Liver Oil might be better than the Omega Brite, because of less ingredients to have to worry about. Whatever, it all works for me. So, the new schedule is as follows: 6:30 AM 1 mg Risperdal 1 tsp Cod Liver Oil 2 tablets Nystatin crushed 1 capsules Super Nu-Thera emptied 1/4 tsp Calcium/Vitamin D hypoallergenic powder 2:30 PM 2 tablets Nystatin crushed 1 capsules Super Nu-Thera emptied 1/4 tsp Calcium/Vitamin D hypoallergenic powder 5:00 PM 2 tablets Nystatin crushed 7:30 PM .1mg of Clonidine 3mg of Melatonin 1 capsule of Pro Bio Defense emptied Sounds like a lot, doesn't it? But in all reality, it isn't. I've seen some children's supplement schedules and they are FAR more detailed, elaborate, and full of many more supplements than what Ashton is currently on. For now, I think it's the right amount of medication/supplements and we're enhancing his base nutritional needs/deficits, so I think we're on the right track. It was funny, Ashton weighed 92.8lbs, WITH his heavy winter coat AND shoes on! He hasn't weighed that LOW at a doctor's appointment (except for his appt during his bout with pneumonia in December) since late '07! It was surprising and shocking, to say the least. *I* was actually really glad, because he had gotten up to 102lbs (yes, that's OVER a hundred pounds at less than 10years old!) and he was just looking SO unhealthy, weight-wise. Now, one of the bad things with this latest increase of the anti-fungals (Nystatin), is we're having a HUGE increase in the obsessive behaviors in regards to the tv/DVD player/computer, again. UGH! I thought we were done with that, but apparently, the yeast is still wreaking havoc in his body, as this OCD/perseverative behavior is usually a sign that yeast is still in over-abundance. So, we plug along with the anti-fungals and have started with the probiotics (Pro Bio Defense) and hopefully we'll battle this yeast monster, once and for all! This whole symptomatic behavior is related to the "die-off" of the yeast, more affectionately known as the "die-off period". But, he's really doing pretty well, overall. His teacher is not coming back from maternity leave, so they've got a new teacher, taking over for the long-term sub that had been in place since November. Ashton met her today and said "she's nice". LOL! How's that for an endorsement? Hehe! She'll be in place tomorrow and Monday, working with the long-term sub and then will be "flying solo" come Tuesday (the 2 aides in the classroom will remain the same, thank goodness!). There is a meet-n-greet/open house on Monday evening for the parents to meet the new teacher. I'm SO glad they're doing this because I want to make sure she realizes HOW important it is for Ashton to not be given ANY snacks/food items that have not been sent in by me, or that haven't been pre-approved with prior notice, by me. We also did another blood test; this time to check for actual food ALLERGIES, instead of just food intolerances/sensitivities. We didn't test for nearly as many foods as we did previously (96 foods, previously) but just the main 8-10 allergens. Hopefully we'll get those results back soon and see if we need to omit soy, eggs and peanuts from his diet as well. These 3 foods showed up on his sensitivity panel, but with low reactivity. We'll see. We also got the test kit for the urine test, which tests for heavy metal toxicity. I haven't done it yet, just because this week has been kind of busy and chaotic. I'll do the collection on Monday and stick it in the mail that day. We'll see where those results take us! We are to go back to see Dr. Madren in April (the 22nd) and we'll see where we go from here. Oh .... and an Ashton funny (and explanation for the picture.... ;) LOL) The other night, Ashton INSISTED that he wanted noodles for dinner. I'm thinking to myself.... he hasn't asked anything pasta, in like FOREVER, but okay, if noodles is what he wants, noodles is what he's gonna get..... I had some rice spaghetti pasta and made him some noodles and then put some marinara sauce on it and he went to town. I happened to be cleaning up the kitchen from mine and David's dinner and I heard Ashton say "I'm gonna be like Master Shifu" (a character from Kung Fu Panda for you uncultured non-parental people, LOL!). I turned around and Ashton had splayed a noodle across his nose (like a mustache) and was laughing and giggling and kept saying "I am Master Shifu". I, of course, had to grab the camera and capture the moment for posterity! I was laughing right along with him and watching him eat his pasta like this totally cracked me up. In any case, his imagination/sense of humor is shining through and he's enjoying making other people laugh. Okay... time to get the kidlets ready for bed and then it's gonna be time for Thursday night TV! woohoo! :)

Ashton's supplement/med list

We're still new to the whole biomedical approach and still wading ourselves through the possible supplements, etc. So far, we're only on a few meds/supplements (we haven't yet started Super Nu-Thera, OmegaBrite or Pro Bio Defense) I have to order these sometime this week. He's currently taking Spectrum Complete and EFA Powder in lieu of the Super Nu-Thera and Omega Brite.

• 1mg Risperdal - 6:30am
• 1/4 tsp of Omega Brite Kidz - 6:30am
• 1tsp Nystatin (increase to 2tsp on 1/24) - 6:30am
• 1 capsule Super Nu-Thera emptied into Dari-Free milk - 6:30am
• 1/4 tsp Calcium/Vitamin D hypoallergenic powder in Dari-Free Milk - 6:30am

• 1/4 tsp of Omega Brite Kidz - 2:30pm
• 1tsp Nystatin ( increase to 2tsp on 1/24) - 2:30pm
• 1 capsule Super Nu-Thera emptied into Dari-Free milk - 2:30pm
• 1/4 tsp Calcium/Vitamin D hypoallergenic powder in Dari-Free Milk - 2:30pm

• .1mg of Clonidine - 7:30pm
• .5mg-1mg of Melatonin - 7:30pm
• 1 capsule of Pro Bio Defense mixed into Dari-Free Milk - 7:30pm

I also gave my son an epsom salt bath last night and WHOA! He was SO calm within about 5 mins of starting the bath and he went to sleep about 5 mins after getting out and getting ready for bed (and taking his clonidine and melatonin). We'll do the epsom salt baths on nights he seems really wound up; my plan is to do these 3 times a week. So that's where we are right now .... pretty basic list. Have a great week everybody!