Monday, October 5, 2009
OK - so my question to all of you is.... WHY do so MANY children (and adults too, for that matter) with autism spectrum disorders have SUCH a difficult time falling and staying asleep???
Over and/or under stimulation? This is probably the biggest problem right there. Too much outside noise or not enough. Too much outside light or not enough. Being overfull from dinner, or maybe even HUNGRY. Too much "screen time" before bed. Not enough time for relaxation before sleep. Not enough deep pressure/stimulation or maybe even too much.
--I've yet to actually figure out if anything I do with regards to this helps Ashton sleep or not sleep. It seems like whenever I get him figured out, that he changes it up on me, just to spite me! Ok, so I know it's not really to spite me, but sometimes it feels like it! I don't think our children are inherently trying to cause us strife; I don't think they master the tools of manipulation, but hey, maybe I'm wrong! :) I am tired after all! Insomnia? If insomnia is already a problem, then not sleeping is already putting you/them at a disadvantage. It perpetuates the entire cycle and makes things worse, and worse.... and even worse.
--This definitely happens in my house. It seems like the more tired he is, that the more he fights going to sleep. The evidence of this is when he's wide-awake and bushy-tailed at 2 o'clock in the freaking morning sitting in the bathroom flapping and clapping and filling up the bathtub with water. He doesn't even look REMOTELY tired at all, and you have to wonder WHY is he trying to take a bath in the middle of the night? (we asked ... we didn't get a reply, just a blank stare). I post this example because it happened last night. Luckily my husband woke up and heard it before the tub overflowed (I don't think Ashton would have known what to do at that point and I can't say that he would have come to wake us up).
Medications? I know there are some medications that make it very hard for some to fall asleep. Stimulants such as Ritalin, Adderall, Focalin, etc are all stimulants that are often used in the treatment of ADHD, which many children/adults with autism have symptoms of. Unfortunately, those medications can cause problems with sleep; both falling to sleep and staying asleep. ---- Now of course, there ARE medications that are traditionally used to help one go to (or stay) sleep. Melatonin is an over the counter herbal supplement that our body produces anyways, but many people just do not make enough. People that often have erratic sleep schedules due to work, school or travel, will take melatonin to help regulate sleep. There are many other medications that are used "off-label" for sleep issues.
--Some of the ones that *we've* tried are: Trazodone, Clonidine, Imipramine, Seroquel and even the good ol' standby, Benadryl. We've tried multiple combinations of all of the above medications (in conjunction with and without melatonin too!) and while we always find something that works, it's usually very temporary. Sometimes we'll get lucky and it'll work for a few months but most combinations only work for a few short WEEKS!
I strongly believe that if my son can fall asleep at 8:15pm and have to be WOKEN UP BY ME at 6:40am, than he really NEEDS that much sleep. I can even handle him not falling asleep until 9-9:30pm and getting up at 6:40am. It's the fighting sleep and not going to sleep ALL FREAKING NIGHT (twice now he's literally stayed up for nearly 24hours straight ... once he went to sleep around 6am; last night/early this morning he FINALLY fell asleep around 4:20am....). Even when he doesn't pull that number he will fight sleep and not go to sleep until 11pm or midnight. He has to be up at the latest by 6:40am to get ready for school and be on the bus by 7:05am.
So ... any suggestions, or words of wisdom? Commiseration? Want to laugh at my misfortune? (go ahead, it's good for the soul sometimes! ;))
I went and bought a BABY MONITOR today .... for a TEN YEAR OLD! I didn't tell Ashton what it was, nor did I tell him what it was for. I made sure he had his "cocktail" of sleep medicines tonight and then let him soak in a warm bath with some lavender scented epsom salts. I turned the light off in the bathroom and made him whisper and told him *NO CLAPPING*. He was very calm and very relaxed. Got him cleaned up and then dressed for bed and put the radio on and let him lay down on the couch. He went upstairs to bed at 8:30pm (same time I took Holden upstairs for a shower) and I haven't heard a peep from him yet. This technically means we're in the clear as far as him GOING to sleep. We'll see if he stays asleep ALL night like he's supposed to. Anyways .... I KNOW someone, somewhere out there, can completely commiserate and is just as desperate for sleep as we are. So ... here's some sand from the sandman and wishing you all a good night's sleep!
Saturday, October 3, 2009
Doesn't this creamy-looking dish look delicious?! Would you have guessed that it was gluten-free & casein-free? If I hadn't been the one to make it last night, I'm not sure that I would have known!! :)
What kid doesn't love a creamy, warm, satisfying bowl of macaroni & cheese once in a while? But for some children (my older son, Ashton, included) having that satisfying bowl of creamy macaroni & cheese can make them seriously ill, or even lead to a severe allergic reaction! I will let this lead me to say that prior to going on the gluten-free, casein-free diet, my son was the lover of all things macaroni & cheese. If it looked like macaroni & cheese, he'd eat it! But when, on a whim, we decided to try the gluten-free, casein-free (otherwise known as GFCF) diet for him, he could no longer have this creamy, yellow goodness! I found lots of substitutes (every one of which, Ashton would eat) but I found them to be less than stellar and some, downright disgusting! Some even smelled like dirty socks out of the package, YUCK! I was determined to find SOMETHING that I could feed to my son that didn't leave me gagging or with the desire to throw it in the trash before he dug in. So that leads me to last night.....
Well, this delicious looking bowl of creamy goodness came pretty close and was a HUGE hit with Ashton last night! I had went to Navan Foods earlier this week and saw that they now carried both the mozzarella and cheddar forms of the Teese cheese substitutes. I, being the adventurous soul that I am, decided to try the cheddar form and use it to make my son some macaroni & cheese. As I've previously said, I find that most mac & cheese subs just look nasty and smell even worse and I have no clue how they taste because I will NOT taste them, AT ALL. In one word, I find that most are N.A.S.T.Y! Well, I knew I had the pasta at home and wasn't really sure what I would use to make it but I set off with a mission in hand; to make my son a delicious bowl of mac & cheese that wasn't gross and that *I* didn't mind looking at!
So, last night was the night I decided to make it.....
I set out my ingredients
Andean Dream Quinoa Macaroni, Teese cheddar style, Earth Balance spread and Pacific chicken broth
And then I set out to make my son the most
yunmiest mac & cheese *EVER*! :)
Here is the recipe I used (I followed a tip from a fellow GFCF mom and used the broth instead of a dairy-free milk substitute .. that helped, A LOT, in regards to taste I think!)
1 box of Andean Dream quinoa pasta
1 roll of Teese (cheddar style)
2oz Pacific Organic Free-Range Chicken Broth
2 TB of Earth Balance Soy-free spread
sea salt, ground black pepper, onion powder and garlic powder (season to taste)
At this point, you get cooking! ;) I boiled the pasta according to the directions on the box. While waiting for the pasta to finish, I cut up the teese (which by the way, doesn't smell all that awful straight from the package like I was fearing it would) into small chunks and placed them in a smaller sauce pan. I then mixed in the earth balance spread as well as the chicken broth and let them simmer until the cheese was melted. Once melted, I added in the sea salt, pepper and garlic and onion powders and let it all simmer while the pasta finished.
cheddar sauce once melted .... it looks pretty runny, right?
Admittedly, I was a bit perplexed at how this watery cheese sauce was going to properly cover the pasta to give my son the macaroni & cheese I was envisioning for him.
But alas, once the pasta was drained (and I rinsed it just a tiny bit) and then mixed with the the cheese sauce, I had my beautiful looking mac & cheese!! Can you believe it?!
I WAS SHOCKED!!!!
It LOOKED like normal, gluten & casein laden, processed macaroni & cheese from a box! And even better, *I* could tolerate the smell of it! It didn't smell like Kraft, but it certainly did not smell horrible either. I even tasted the sauce (that's how impressed I was, I NEVER would taste most of the subs) and I was quite impressed! It had a creamy texture/flavor and it tasted pretty good! Sure, I like my Kraft or Velveeta mac & cheese anytime, but for my son who can't have those, this was certainly what *I* considered to be a suitable replacement!
Here, you can see, that he's enjoying his macaroni & cheese! He wouldn't smile for me because well, he was too busy eating and was getting mad that I was making him look at me! LOL!
Anyways, I hope this recipe helps any that are looking for a good recipe for some good-tasting and good-looking macaroni & cheese. Since I made the entire box of pasta and the whole roll of teese, he's got plenty for leftovers and is asking to eat more of it for today's lunch, which I will let him indulge in. Now I am anxious to try the mozzarella teese for pizza and as a topping for spaghetti, yummy!!! Thanks for looking and stopping by! :)
Saturday, August 15, 2009
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!!!
Saturday, March 21, 2009
I found THIS recipe while surfing for a GFCF Sun butter cookie recipe for Ashton; it was found on Karina's Kitchen. I made a few modifications... here's what *I* did for this recipe...... 1 cup sunflower butter, stirred 1 cup light brown sugar, packed 1 egg, beaten 1/2 teaspoon vanilla extract (I used Meraby's brand; it's gluten AND corn free) 1 teaspoon baking soda 1/3 cup GFCFSF chocolate chips (I used Enjoy Life brand chocolate chips) 1 tablespoon milk (I used Living Harvest Original Hemo Milk; use whatever dairy-free milk substitute you like)) 1 tablespoon of ground milled flax seed 1/3 cup of granulated sugar in a bowl A small pinch of sea salt 1. Pre-heat oven to 350 degrees Fahrenheit 2. Combine the sunflower butter, light brown sugar and beaten egg in a mixing bowl. 3. Add vanilla, baking soda and salt; mix well with a wooden spoon. 4. Cover batter mixture and set in refridgerator for 1 hour to allow the mixture to firm up a bit. 5. Pull off pieces of the dough with oiled hands and roll into 1-inch balls. 6. Roll each ball in granulated sugar and place the balls on a foil-lined or parchment-lined baking sheet. 7. Using a fork, press the balls slightly to make a criss-cross pattern- making the cookies roughly 1 1/2 inches. 8. Bake for 9-11minutes or until cookies are brown on the edges. 9. Let set for 5minutes, then remove to cooling racks to completely cool. Just some notes The milk was to keep the cookies from being so dry/crumbly (which I had read was a problem). It served it's purpose and didn't take away from the yumminess of the cookies! Flaxseed was added to add some nutritional aspect to the cookies (lots of good for you things in Flaxseed!). I rolled the cookie balls into sugar to add to the taste; they MADE these cookies!! In hindsight, I would have added 1/2 cup of chocolate chips... not enough chocolate taste for my liking, but still QUITE yummy! ENJOY!
Thursday, February 26, 2009
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!
Saturday, February 14, 2009
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! :)
Sunday, February 1, 2009
Officer Holden at your service!
Holden had to dress up for his Career Day project, and he chose to dress up as a police officer. The belt was actually part of his pirate costume that I unstitched and then pinned to the shirt and used safety pins to attach the handcuffs and walkie-talkie! He then had to stand in front of his class and tell about his job and what service he provides to the community. He got 100% on his project (40% of which was dressing up!). YAY!! Speaking of good grades... he had an AWESOME report card!! Out of 31 areas that were taught both in the 1st and 2nd grading periods, he brought 13 of them up; some of which were Ns (needs improvement) and he brought up to Ss (making satisfactory progress!). He still had a couple of Ps (progress, though still needs help) in writing, which is something I'm going to bring up with the teacher. He just has such a hard time coming up with original ideas when it comes to writing. If he's writing about something he's learned, he can do it; but creative writing is not one of his better areas. But overall, I was EXTREMELY impressed his report card and he got his much sought-after request; a white bakugan and a big bakugan set that comes in a tin. He was ECSTATIC!! The ADHD meds he is on have truly helped him be successful in school. The meds didn't make him get good grades.... he did that but they certainly HAVE helped him have control over his impulsiveness and his attention span in class. I was in his class on Friday to read to his class (along with several other mothers) and I was able to witness first hand his ability to sit still, listen and not interrupt when something is going on that might not be all that exciting. YAY! Just had to share!! :)
Monday, January 19, 2009
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
Wednesday, January 14, 2009
And the stool sample results are in... Ashton's culture came back positive for yeast. This is obviously, not a good thing. It can result in lots of diarrhea (which we don't usually have anymore, unless he has an infraction in relation to his Gluten-Free, Casein-Free diet), red "dotty" rashes (which he seems to constantly have!), and even some OCD behaviors can be attributed to yeast overgrowth (which Ashton has PLENTY of). A good link to look at to understand how yeast (other-wise known as Candida) can affect people and what symptoms of Yeast Overgrowth can be is ... http://www.autismhelpathome.com/biomedical/about_candida.php So, now we start a one-month course of Nystatin (yes, another prescription). It's to help get rid of the yeast. I'm also going to limit (though not, eliminate) sugar in his diet. Yeast feeds on sugar and Ashton, much like his mommy, has a major sweet tooth! It also means decreasing the amount of carbs he eats, because again, yeast feeds on those. This shouldn't be all that hard, but we'll see. We'll start the Nystatin tomorrow or Friday and when we go back to the DAN! doctor in February we'll see where we stand. We've also started Calcium, EFA *essential fatty acids*, and Spectrum Complete (although he's not liking the taste so I'd like to start Super Nu-Thera with Ashton sometime in the next week). I don't know if I had mentioned it, but we took Ashton off his Adderall XR (a well-known ADHD drug). I noticed over the holiday break that everytime he took it, he'd fall asleep within 2hrs of taking it and proceed to sleep for 2 to 5 HOURS! I couldn't believe that an ADHD med was having THIS result on my child. So, I stopped giving it to him and let his teachers know and they said that he's been just fine at school. They even went so far as to say that the last 3 days that he's been very social, happy, engaging and working VERY hard to get his work done. He's also been very loving (he's giving mommy's hugs away.... *booooo*!) and is seeking out other people. Who knows what this is attributed to (diet, supplements, maturity, etc..) but I'll take it! Good news is always well received around here! :) So, that's it for now. I'm watching American Idol so I'm gonna end this blog post for now. Just wanted to update (if anyone even reads this!).
Thursday, January 8, 2009
(If you click on this blog post title, it will take you directly to the .pdf file on Wendy's website containing the list of Gluten-Free menu items) Ok... so it's a small wonder, but what a wonder it is! The very fact that they actually have taken the time to find out which of their products ARE Gluten-Free, and then actually put it ON their website, is pretty remarkable to me. Burger King lists the 8 top allergens on their menu items, which is good as well, but it's nice to have a straight-forward list of the items that are gluten-free. Sadly ( :( ), Wendy's french fries are NOT gluten-free, which is a bummer. Ashton hasn't been allowed to eat them since he started the diet, so that's not a big issue, but still, it IS indeed, a bummer. Their hamburger patties are gluten-free though AND since he's started eating baked potatoes, he CAN have a plain baked potato from Wendy's as well! Yay! It's always nice to find safe "normal" foods for Ashton to eat. Other fast food places that we eat at that are "safe" for Ashton are: Burger King (hamburger patties, their french fries ARE GF, apple fries and usually a soda of some kind), Chick Fil A (fries only.... I haven't tried getting him to eat the grilled chicken breast......). Now that I know Wendy's is "safe", we'll be letting him eat there, as well. Of course, keep in mind, if you are avoiding casein (dairy) containing products as well, you have to make sure you're not consuming the items that have casein in them. Just because it's GF, does not mean it's CF. :) Just thought I'd pass this along
Friday, January 2, 2009
Ok, so it's not the best picture in the world of Ashton. It was getting close to bedtime and he HAD already eaten HIS dinner of S'better Chicken Fingers *gfcf* and Ian's Alphatots *gfcf* and his "milk" (dari-free powdered milk substitute). But when I made my husband and I's dinner (bacon-wrapped filet mignon steaks and green beans and dinner rolls) I thought of trying a trick and seeing if it worked. My trick was: telling Ashton that the green beans were green FRENCH FRIES!! (he ADORES french fries of any kind that are safe for him to eat) He quizically looked at me and said "Those aren't green french fries, those are green beans!". Oh his speech therapist would be proud; negation used, complete sentences, eye contact; you name it, he did it correctly! Anyways, to get to the point, I asked him if he wanted to try some and he looked at me said "No, I don't want to try green beans" and turned away from me. I told him if he didn't try ONE bite (it was a miniscule bite) that I would turn the TV off (this punishment, or rather, the THREAT of this punishment almost ALWAYS works!). He looked at me and said "No, turn the TV off, I want green beans!" hahaha .... so he gingerly took a bite (plain) and proclaimed it yummy whilst he had an awful look on his face. I asked him if he wanted to try them with kethcup (hey, Ronald Reagan said it WAS a vegetable after all, right???) and he perked up and said "YES PLEASE!" So I drug out the ketchup and he dipped his green beans in and ate probably 15 or so green beans before he decided he'd had enough. (he had already eaten HIS dinner if you remember). But the amazing thing is .... he hasn't eaten green beans in probably 8, or possibly even 9 YEARS!!! Anything squishy (liked cooked veggies tend to get) wouldn't last 2 seconds even NEAR his mouth, let alone in his mouth, chewed up and swallowed (at which point they would of normally been gagged on and thrown up). But he said he liked them and it even enticed his younger, 6yo, brother to try them and he proclaimed them YUMMY! Maybe we'll actually get them both to try a bigger variety of veggies but hey, this was a great and HUGE step forward. So YAY for Ashton!!!! He's getting past his texture issues and is actually trying (and liking!) new foods. Better yet, the foods he's trying are usually much healthier for him than he's ever eaten. Whew! Celebrate the small steps; they add up to BIG GIANT LEAPS!
Thursday, January 1, 2009
Wow - good thing we have went GFCF; he shows a moderate reaction to Casein and a low reaction to gluten. Those are both probably in those ranges because he's been GFCF since August; imagine the reactions he'd of had if he hadn't been GFCF yet! The BIG surprise though is oranges and grapefruit! While Ashton has never had grapefruit, he has eaten oranges (one of the few fruits he WILL eat!) and drinks orange juice/ sunny D almost DAILY!! So now we're under the advisement to remove ALL citrus fruits from his diet! (and I will be checking labels ..... just to be sure....). This really isn't that big of a deal but the juice is one way I was getting vitamins into Ashton, ugh! So now I need to get the stool sample sent in; so we can get the tests done for the yeast. We'll see how this goes. It's good to know and have a validation that we made the right move going GFCF, yay! But it's also sad to know that he might not ever be able to eat "normal" foods again!
Well, as you can see, my guys didn't *quite* make it until midnight... they made it until 11:35pm, 25mins to go! In fact, *I* almost didn't make it until midnight! LOL They were so excited at the prospect of staying up SO late and then they didn't even make it. I looked at my husband shortly after midnight and said "We're too old for this crap!" - hahaha ..... Maybe next year we'll just tape "Dick Clark's New Year's Rockin' Eve with Ryan Seacrest" and watch it the next day. I somehow don't think it'll have the same meaning.
Now that it's officially a new year, bring on the New Year's resolutions! My resolution is; I want to lose weight; and not just lose it for the sake of losing it, but lose it and get healthier in the process. I am roughly 40lbs over what I should be and while it's not adversely affecting my health as of yet, I want to get my weight back in check so that I stay the healthy person that I am. So, I will say that I am currently weighing approx 165lbs; yes, at 5 foot, I am considered obese. I HATE saying that but if I'm not truthful, then how will I truly want to change? So, a new year brings a new diet plan and excersize plan. Once the boys start back to school next week, I plan on posting daily to update what I'm eating throughout the day (I figure if I have to post it in a public viewing forum, I'm more likely to watch what I'm eating) and will also post what excersize I'm able to do throughout the day. We have a Nintendo Wii so that will probably be the bulk of my excersizing, though I do plan to go and walk outside when it's not too cold. So, we've had lots going on this past Fall/Winter thus far. First off, I finally squelched my fears and put Ashton on the GFCF (gluten free, casein free) diet. He started it near the end of August, so it's been over 4months and wow, has it been life-changing! While we have had some minor infractions (and one major infraction of eating 2 brown sugar cinnamon poptarts on Halloween), the diet has been pretty succesful so far. Initially, we had some really positive behavior changes; more eye contact, better focus and attention and he was so calm. Those changes don't seem to be AS apparent now, which leads me to believe that there are either other foods that are irritating him, or maybe something else entirely different. However, we have noticed some absolutely WONDERFUL changes in regards to digestion, etc. Ashton used to silently reflux upwards of 10times a day (which I fully believe is what caused him to want to eat; if he was eating than his throat was always coated, etc .... which of course, over eating can cause the reflux to worsen so the circle continued on and on .....). Now, he's no longer taking Prevacid (a RX for reflux) and he MIGHT reflux once every other day or so. Also, Ashton used to have really weird bowel symptoms. Constantly pooping (4-5 times A DAY!) and it was ALWAYS runny. That ceased within a month of the diet. Also, he constantly had a "diaper rash". Horrible and as soon as I'd see an improvement in the appearance of the rash, something would set him off and it'd been bright red and bleeding again. We no longer get rashes that bad! It is easy to tell when Ashton's had an infraction now though; usually within an hour or so the diarrhea starts as does the rashy bottom (which can take a week or so to clear up again) so I've been very diligent in making sure he does NOT get ANYTHING that has even TOUCHED wheat/gluten containing items or dairy/casein items. We changed the med he's on for some minor ADHD issues and it's been a wonderful change. He's now on 1mg of Risperdal in the AM, 5mg of Adderall XR in the AM nd then 0.1mg of Clonidine at night. He also takes 7.5mg of melatonin at night and he's not only going to sleep shortly after going to bed, he's also sleeping ALL NIGHT!! WOOHOO - sleep IS indeed a precious commodity in this house! Unfortunately, Ashton got very sick a few weeks ago and stopped eating, for nearly a week. What little he did eat (Burger King or Chick Fil A french fries), would usually get thrown back up and he lost nearly 10lbs in the span of a week. Turns out the poor guy had PNEUMONIA! He was SO sick and was napping nearly 5-7hrs a day on top of sleeping all night long! That's how sick he was. He's still napping nearly almost every day and it's been a week since he really started feeling better. Luckily the naps are only about 2hrs long, so that's a good thing. I just hope the napping stops since school starts back up on Monday. He missed school from Dec 16th - Dec 23rd (which was the last day before Winter Break). At that point I didn't care HOW much school he missed, I just wanted him better before the Christmas madness hit. He's gained back a couple of pounds (keeping mind that it didn't HURT him to lose 10lbs) Holden was diagnosed with ADHD back at the beginning of December. It's more the inattentive type (meaning he is easily distracted and lacks the ability to focus on things he needs to, etc...) although he can and does have his hyper moments. He started on Vyvanse (30mg) soon after and has been doing WONDERFULLY! His progress report after starting the meds (which incidentally came home the day of his 2 week checkup after starting the med) was GLOWING with positive remarks from his teacher. Not only that, but the school work that came home was MUCH improved over previous school work that had been sent home. The handwriting was neat (well, as neat as a 6yo boy can write, LOL) and the work you could tell had been done thoroughly and with focus. YAY! I'm SO happy that the meds have helped. Our only issue is that he seems to have HORRIBLE insomnia! But then again, he has NEVER been a super great sleeper and we've been giving him 10mg of melatonin at night to help him sleep. His pediatrician even put him on 0.1mg of Clonidine (same med as Ashton, LOL) and it's not really making a huge difference. I plan on calling the ped on Monday to see if we can change the dosage or something. Last night (which was New Year's Eve) I gave Holden his 10mg of Melatonin and his Clonidine and he was rearing to go until 11:35pm. Yes, he was trying to stay up 'til midnight, but he wasn't even acting REMOTELY sleepy until around 11:20 or so. This is a kid that under great circumstances is asleep by 8:15pm and I have to wake him up at 7am to get him ready for school. We'll see. David and I celebrated our 10th wedding anniversary on December 10th. WOW! 10years with the SAME person! I've basically spent my entire adult life with the same person and I couldn't be happier about that fact. We got each other some pretty unconventional presents; he got the Lego Ultimate Collector's Millenium Falcon and I got a Canon EOS XS Digital SLR camera. David thoroughly enjoyed putting the lego set together (took him about 4 days total ....) and I have really enjoyed playing around with my new camera. I can't wait to take the boys to the park or zoo when it's warmer and get some great pictures! Anyways, after this long-winded blog post (typed while I've been watching the Capital One Bowl featuring MSU vs Georgia State), I think that's the end of my update. I wish you all a very VERY Happy New Year and may 2009 bring along the changes that so many of us in this country AND world are hoping for!