Matthew Won A Contest!

http://www.ageofautism.com/2008/12/holiday-autism-supplement-contest-from-lee-silsby.html

Happy Holidays Everyone!

It's been almost 3 weeks since my last post. It's been hectic to say the least...John has been back & forth; Matthew has been sick, had ring worm (a yeast rash), and now has a very yeasty gut; and I had hernia repair surgery last Monday and spent most of the week in bed (mom came to care for us). I'm slowly getting better and get my stitches out tomorrow.

Good news: John will be home for Christmas and Matthew's blinking has diminished. It hurts to sit at the computer, so I'll make this short and sweet: we wish everyone a merry Christmas and a happy & healthy New Year! Hope you enjoy the video of Matthew singing Jingle Bells - he knows many of the words, and when he forgets he just improvises!

3 Weeks Later - Video Update

It's been 3 weeks since Matthew's blinking started. We've seen his pediatrician since my last post on this topic. He says it's a "tic" that *might* have been set off by the dilating eye drops and "may or may not go away". Unlike the eye doc's recommendation (to punish Matthew with saline drops), the ped said to ignore the blinking/don't bring any attention to it. So that's what I've been doing. Since Friday, it seems as if he's blinking harder with one eye than the other. I took this video tonight and emailed it to his neurologist to get her opinion...I'm sure she'll reply with "let's do an MRI!" but the answer is still "no more sedation!". I don't feel they are seizures b/c he repeats and answers questions while blinking. So tell me what you think...if you have seen a child do this who in fact has seizures, I'd like to know. I'm also looking for more info on tics and what can be done to decrease them. BTW, I received the results of his blood strep tests today and they are negative (= good, no PANDAS). We go to see the DAN doctor on the 12th.

Other news: John was home for Thanksgiving. It was just the three of us and Matthew was very happy to see his daddy again! John is in Norfolk this week but will be home next week. He'll be home every other week during December...which is good b/c I am having my hernia surgery on the 15th (mom is off for a month so she'll stay with me on the days he is away). It's a 2-4 week recovery period, and I'm not allowed to lift anything over 15 pounds for 6 weeks...that includes 40 pound Matthew!

10 Commandments for Parents w/ Special Needs Kids

1. Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.
2. Never underestimate your child's potential. Allow him, encourage him, expect him to develop to the best of his abilities.
3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.
4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.
5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.
6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.
7. Be honest with your feelings. You can't be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.
8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.
9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.
10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

Author Unknown

Update to: Horrible Reaction to Dilating Eye Drops

I took Matthew to his pediatric eye doctor last Friday. On Monday (maybe Sunday?) I noticed he was blinking hard with both eyes..Matthew never blinks like that. The only thing "new" that we did was get the dilating drops in his eyes. Here we are one week later and Matthew is still blinking and doing it more often. It is very disturbing for me to watch. I called his eye doc and his advice was to put saline drops in Matthew's eyes whenever he blinked...that would teach him to stop blinking (aka punish him)..I don't think so! Matthew is NOT blinking on purpose...watch the video, it is completely involuntary (he is trying to watch a Veggie Tales movie).

I found out that Johns Hopkins Children's Hospital has an Eye Emergency Room so we are driving 1.5 hours tomorrow to find it! Hopefully someone there will tell us what we can do about this...I firmly believe it is a side effect of the drops which contain: cyclopentolate hydrochloride, benzalkonium chloride, boric acid, edetate disodium, potassium chloride, sodium carbonate, and hydrochloric acid. Please pray that the blinking stops.

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SATURDAY UPDATE: The trip to Hopkins was a total waste of time. There was a young Resident on duty there and he obviously had no experience with such blinking or kids for that matter. He actually wanted to put more dilating drops in Matthew's eyes to examine him. I said NO WAY and he said there was nothing else for him to do. I kept asking: "What is this?...Why did it start and how do I stop it?...Have you ever seen this before?" He had no answers and told me to see our pediatrician. Wow, I drove all the way to Baltimore for that?!

Halloween, Blog Anniversary, & My Birthday!

It's been a festive weekend...today is my 38th birthday, Friday was Halloween (watch video) and also the one year anniversary of this blog. Don't ask WHY I started the blog on 10/31 last year...it just happened!





Matthew had a blast on Friday night. He was a Cowboy (b/c he loves horses) and enjoyed going door to door for candy (which I later switched out with GFCF versions). He said "hello...trick or treat...thank you" at every house. He received many compliments and one lady even said he was her favorite and gave him a special toy. Unfortunately, John wasn't here to participate but I have plenty of photos. (See Facebook :)

Weekend Update

It's been a little over a week since my last post. Yes, I've been spending more time on FaceBook (renamed 'CrackBook' by my friend Nissa b/c it is so addicting) than on blogs lately. I will try to play catch-up this week.

Matthew is doing fine. We received the results of all his Doctor's Data lab tests and he "had some good heavy metals pulls" from the transdermal DMSA (according to his DAN) and a lot of yeast and bacteria in his gut. So I'm getting his rx antifungal filled (Ketoconazole) and added Candex and Grapefruit Seed Extract to his daily juice concoctions. I also added Selenium b/c his blood test showed he is low and he needs that to help move the mercury out of his body.

We had a good/busy weekend...John came home from CT for 36 hours to attend a wedding (at Woodlawn Plantation in Alexandria), to celebrate his 39th birthday, and spend a little time with Matthew.

I attended a 26 year reunion...a bunch of people I went to elementary school with reconnected on FaceBook and met up in Gaithersburg, MD for brunch. I hadn't seen most of them since I was 12 years old and it was fun!

Neurologist Visit

I took Matthew to see his neurologist yesterday. His 24 hour EEG showed no seizures but did show some abnormal/slow brain waves which the doctor wasn't too concerned about..said it could be from a brain abnormality OR b/c he was tired that day.

She once again brought up the MRI..I told her we didn't want to do it b/c I've heard plenty of regression stories (due to sedation) on the various autism-related Yahoo groups I'm on. She said fine but if we notice any seizures, headaches/blurry vision, partial paralysis, etc I'm to call her ASAP. She told me she had another patient (a 5 year old boy with autism) whose parents didn't want to do an MRI but she finally talked them into it and found a brain tumor. I really don't think Matthew has that and he would tell me if his head hurt. Anyway, John & I agree that it's not worth the risk of losing all the skills Matthew has worked so hard for over the last year. Maybe when he gets older (and can lay still for 20 minutes) we will do one.

P.S. Matthew was on his best behavior at the hospital...very well-behaved, friendly, and cute!

Fun Weekend: Cox Farm & Old Mine Ranch

Matthew and I went to two farms/fall festivals/pumpkin patches over the weekend. Above are 2 videos of him riding ponies...well, the first one was really a horse, it was huge! When I get a chance I'll create a slide show of our adventures b/c I took a lot of cute pictures.

On Saturday, we went to Cox Farm in Centreville, VA with Jenn, Carol and her baby girl. It was hot and the place was packed. On Sunday, we went to the Old Mine Ranch in Manassas, VA with the Mankin family. It was a lot smaller/low key and the kids enjoyed running in the corn maze and jumping in the moon bounce. Both places had pony rides, steep slides, petting zoos, hay rides, and lots of pumpkins/goodies. Matthew was so worn out that he came home and collapsed on the couch. I'm glad we went and will look for more horse riding opportunities next weekend.

Stressful Days * Plus Update *

Cyndi Update: My internist called to tell me the lump is a benign breast tumor called a "fibroadenoma" and that I need to go back in 6 months for another sonogram. (The radiologist found another one by accident that day so I must have several of them.) Thanks for all your kind thoughts & prayers! :) 10/08/08
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On Friday, I had a breast biopsy done b/c they found a solid mass on my mammogram & sonogram...I should know the results by Thursday. John is now attending a 2 month Navy course in CT but did come down for 2 days to celebrate our 15 year wedding anniversary and to take me to the procedure. My mom drove up from the VA Beach area to care for Matthew while I was recuperating...I was just really sore/swollen for 3 days afterwards and not allowed to pick Matthew up.

On Saturday, I noticed a brown spot on Matthew's tooth so I'm afraid he might have a cavity and he currently doesn't have any dental coverage. So John is working on that and I need to find a pediatric dentist who won't try to push fluoride (a neurotoxin) or nitrous oxide (a potential cause of regression) and has experience with ASD kids.

Today, I had to take Matthew to LabCorp to get his blood work done (4 vials full). This had to be done before breakfast and after obtaining a first morning urine sample (not easy for a boy who still wears diapers and refuses to wear a collection bag)...but Matthew did comply and peed in the little potty so I got the sample. Of course, the blood draw didn't go as easily, but there was less screaming/kicking this time. (I just hope they did the Doctor's Data kit correctly and remember to call DHL for pick-up!)

I forgot to mention we also did a stool sample on Sunday...that's always the easiest of the three tests...which are to check his metals excretion, kidney & liver functions, and red blood cell counts during chelation (and need to be repeated every 2 months - ouch!).

Now I'm waiting on a call from our DAN nurse b/c we agreed to change Matthew's DMSA formula due to a rash from the cream. We're supposed to change it to a emu oil base, but now the big-wig pharmacy is giving me a hard time about it...so the nurse is calling the owner to see what the problem is. I hope we don't have to go back to the other pharmacy b/c their shipping charges were 3x as high (overnight vs. 2 day air), they wouldn't bill our Tricare insurance directly, and the cost of the Glutathione cream wasn't being covered!

So now I wait... on many results.

P.S. Happy Birthday Dad/"Popeye" (Matthew's term for his Grandpa)...he turned 69 today, and mom (aka "Nini" = Granny) is probably stuck in traffic trying to get back home to him!

Dx - One Year Later & ABC Video

Today marks one year since Matthew's Autism diagnosis. (And what a year it has been!) Matthew has progressed consistently and I am less fearful for his future than I was back then. Matthew still babbles sometimes but also had a large vocabulary and can put sentences together. He still stims but less so and doesn't act as spacey as he used to...he is more aware of his environment and has better eye contact. It's hard to attribute where his gains have come from...is it the GFCF diet, the preschool autism class, the in-home ABA, the private OT, the DAN supplements/anti-fungal meds/chelation, or maturity? We will continue his current treatments in the hope that one day he will get out of special ed and be "mainstreamed" in the school system. And if that doesn't happen, we'll accept that...all we REALLY want is for Matthew to be happy and healthy.

Here is a video I made last night after Matthew's bath. It is him is singing the alphabet song. He still has some pronunciation issues but has come a long way and we are very proud of him. Remember, this is a boy who only had 3 words at age 2...he didn't point, had limited eye contact, only sometimes responded to his name, and was often in his own little world. But even then, he was very loving and quite the little ladies man! :)

Hide & Seek Video

John will be leaving in a few days for 2 months (he's going to CT for a submarine course). Matthew's Occupational Therapist recommended that we make some videos of Daddy so I can play these for him when he asks "where daddy?" or "daddy home?". Here is the first one...Matthew LOVES to play hide and go seek with his dad. He requests it every night as soon as John walks thru the door!

P.S. Please cover your eyes when I show the dining room table!!! It is covered with Matthew's school art projects, his lab test boxes, etc. That room looks like a bomb went off in there...I will clean it one of these days!

TGIF! and New OCD Behavior

I can't believe I haven't posted in 11 days...I think that's a record for me! It's been hectic, plus I discovered Facebook and now have a semi-addiction to it. If any of you are on there, let me know and we can be "friends". :)

So it's another chelation weekend and we're getting the hang of it now. The only bummer is having to stay up late OR go to bed and wake up at midnight to give him his 3rd dose of the day. (I apply the creams at 8am, 4pm, and midnight.)

New since the last post: Matthew's obsessive-compulsive behavior. This started about the same time school did. He has to walk in a certain way or else he goes back to where he started and does it all over again (and says "no go this way"). He does this when coming down the stairs, walking thru the hallway, and going to the car in the garage. And today his teacher told me he is doing this at school as well. It is very frustrating, especially when we're in a hurry. I'm not sure WHY he's doing it or what to do about it other than try to redirect, but then he starts to scream/cry and create lots of drama. So if you have any insights/advice, please comment!

Round 2 of TD Chelation

We did transdermal DMSA again over the weekend (Fri/Sat/Sun - applied every 8 hours). I'm a bit tired from the midnight applications, but other than that nothing bad to report. Matthew is no longer afraid of the gloves and tolerates the creams. He does seem to be more verbal and is putting little sentences together. Now we have our 11 days "off".

Back to PAC!

After a 2 week break, Matthew is back at PAC (= preschool autism class). In his class, there are 6 students ages 2-5, one teacher, and 2 aides. Matthew, Heather, and Simon are returning students and the other 3 are new to the class (although one was in PAC at another school last year). Matthew was supposed to change schools this Fall but they "redid the boundaries" so he is staying where he is...which is good b/c he avoids the transition. Here is a picture of Matthew with his teacher, Miss Heather and his only female classmate (little) Heather. They attend 27 hours per week.

Doors, Elevators & Merry-Go-Rounds

Matthew has a door obsession. Over the last year it has changed from the electric garage door to the bi-fold pantry doors to the sliding screen door, and now it's automatic doors (especially glass ones that slide sideways) at public places. For the last week, we have been working on his sliding door fetish and it is getting better (at least when another person is around like John or his therapist) but still needs work. Matthew gets upset if he doesn't follow a certain order, must watch the doors close behind him, and likes to repeat the process. This can make Mommy a little nutty when she is trying to get into/out of the library or grocery store in a timely manner!

Matthew also loves elevators...hmm, maybe b/c they have sliding doors! He will go up & down 50 times if you let him. The funny thing is he used to be terrified of these as a baby...he would shake with fear and I'd have to hold his hand/tell him it was OK. Now, I have to pull him out!

He also used to be afraid of the merry-go-round at Burke Lake Park. I don't know when/how he got over this fear, but he really enjoys the one inside Springfield Mall. Here are 2 video clips...one of us in the elevator there and the other of Matthew with his daddy on the ride.

GFCF Noah's Pretzels & Trip Down Memory Lane

Today we took an impromptu trip to Gaithersburg, MD which is about 45 minutes from our house and one of the towns I grew up in (I was an IBM kid). The main purpose was to go to Lake Forest Mall to visit Noah's Pretzels b/c they offer GFCF ones there. Here's the link/story behind the shop (whose co-owner has a son with autism): http://www.noahspretzels.com/

We hit the pretzel shop first and introduced Matthew to the employees and ordered his special pretzel. They asked if I wanted to put a picture of Matthew on the wall (along with the other ASD kids who have visited there) and I said "sure!" and just happened to have one handy. (I brought a pic b/c I heard thru the grapevine that they would post it.) The sweet young lady (who said her 8 year old brother has autism so I'm thinking she is the owner's daughter) taped it right above the Time Magazine cover so if you look over Matthew's head here you will see his placement on the "wall of fame". We then took the pretzel to our next stop Red Robin for lunch. Supposedly their fries are GFCF so I let Matthew have a few along with the pretzel (which he liked but wasn't really sure what it was) and the food I brought for him.

After lunch, we rode the glass elevator and played in the middle of the mall. Matthew loved watching the elevator from the play area and all was good until an older kid body-slammed Matthew into the glass retaining wall and Matthew hit his head/back. The boy's mom apologized and told her spun-up son to go sit on the sidelines. Matthew was fine but shaken up so we left and went across the street to Marshall's.

After shopping, we went down the road to my old elementary school where Matthew climbed the stairs twice and briefly played on the playground. I had to add this pic so you could see the stairs the crazy builder made when designing the school. I started there in the 3rd grade and remember having to go up and down those stairs in the rain, snow, heat...what a work-out (especially for the kindergartners)!

* You can click on the pics to make them larger.

After the school, we drove by my old house. It looks basically the same but the trees in the neighborhood have matured. I moved there when the neighborhood (and actually the whole area of Montgomery Village) was only a couple years old...I remember everything being so new and "modern" for the late 1970's. (Hard to believe that was 30 years ago!)

First Round of DMSA Chelation

We started transdermal chelation last weekend. It wasn't as scary as I anticipated but it was exhausting. We began Friday morning and dosed every 8 hours around the clock until Sunday night (well, it was really Monday morning). I had to mix and apply the creams to various parts of Matthew's body (where the skin is thin)...1/4 ml of DMSA with IPM and 1/4 ml Glutathione with it's IPM. I must wear gloves which Matthew is afraid of b/c they remind him of blood draws, but he is getting better with them. The hardest part for me was having to wake in the middle of the night to mix/apply the cream.

The schedule we use is 3 days on, 11 days off and we'll always do it on weekends so I can monitor his reaction. I was expecting a rash (a somewhat common reaction) at the application sites but he didn't have any. (Thankfully, he is not allergic to sulphur.) The only difference I noticed was that he was more tired/crabby on the 2nd and third day and then for 2 days after that. On the 11 days "off" I'll continue to give him his daily Glutathione cream at a larger dose (1 ml)...this helps with detox.

From what I've read, it usually takes anywhere from 1 to 3 years to chelate a child with heavy metal poisoning...hopefully it won't take too long for Matthew. He is young (almost 3.5) and has less exposure than older kids (especially the children that were clobbered with thimerosal during the 1990's). We'll keep doing the DMSA cream until we don't see good "pulls" (of metals in the urine/stool tests) any longer and then I think we'll ask for DMSA and/or ALA in capsule form (which I could mix in his juice). I know suppositories and IV chelation would get bigger pulls/faster results but I'm just not interested in doing those right now...besides our DAN doesn't do IV's and Matthew wouldn't let anyone put one in him!

P.S. Here's the link to the pharmacy/product we are using: http://www.leesilsby.com/dmsa.php

24 Hour Video EEG

Yes, I know the girl pictured right is not Matthew but I forgot to take my camera to the EEG last Tuesday and this is the closest/cutest pic I could find on-line! We checked into the children's hospital in DC around noon and left there 24 hours later. It was a stressful experience. I chose not to put Matthew under general anesthesia b/c I heard stories of children with autism regressing b/c of it (especially nitrous oxide) so instead they wrapped him like a mummy in a sheet to attach all the wires, etc.

They glued about 30 leads onto his head and then wrapped it in gauze. The process took what felt like forever b/c Matthew was screaming and crying the entire time. By the end of the application, he had broken blood vessels all around his eyes and looked like he had big red freckles on his face (he still has a few). Matthew has sensory issues so having a stranger touch his head, clean the spot, put on the cream, place the lead, apply the glue, blow the glue dry... was pure hell for him. I had to help hold him down with another technician b/c he kept rolling over and shaking his head. (Matthew only weighs 40 pounds but he is a fighter and very strong when he is under stress!) It's not something we will do again any time soon...if ever!

Matthew was better once he got out of the sheet "straight jacket" and moved to his private room - which was in the new neuro wing and was very nice...had a gorgeous view of a reservoir and an old fort. He had a pack hanging from his head down his back and that was plugged into the computer with a very long cord so he could walk the length of the room. He did get the cord caught on furniture twice and pulled off the gauze cap which caused all the wires to fall onto his face and I was freaking out b/c I thought he would try to rip them off this scalp. I opened the door and yelled for help and the nurse came in and put his "silly hat" back in place.

I brought GFCF food and we were provided with meals (for him only) so I ate those and Ni-Ni (his Granny) went to the cafeteria. John came to visit after work. We couldn't use the DVD player b/c it interfered with the equipment so we watched TV, read books, sang songs and just hung out. Matthew would not put his head down to sleep so I got in the hospital bed with him and had him lean up against my chest. Once he was asleep I moved his head to the pillow and I stayed in the bed with him. He woke a few times during the night and I was glad I was right there to comfort him back to sleep. My mom also spent the night in the room.

I was supposed to press a button when I suspected a seizure but they (=staring spells) happen so infrequently that I never pushed it. I also had to move the video camera around when Matthew moved out of position so that was kind of neat playing with the mouse and watching his brain activity. It will be several weeks before we get the results. We go to see his ped neurologist in October.

Beach Video 2 (of 2)

Here's the second beach video. We had a stressful week so it was good to relax on the beach. I'll add some posts on his 24 hour EEG, first round of transdermal chelation, and aquarium "visit" (not!) soon.

Beach Video 1 (of 2)

We took Matthew to the beach on Sunday. He hadn't been since last summer and really enjoyed it. He has no fear of the ocean...which is surprising b/c he is afraid of showers and doesn't like to get his hair washed in the tub. He got knocked over a few times by the waves and it didn't phase him at all.

New Pediatrician (Mr. Rogers wannabe)

I took Matthew to his new pediatrician on Monday. We are changing practices b/c his other ped is retiring and I am not impressed with the remaining doctors in the group. This new ped used to work at the Kennedy Krieger Institute (John's Hopkins) so he has experience working with children with autism. Of course, he is anti- all the bio-med treatments we are doing (GFCF diet, vitamin/mineral supplements, anti-fungals, and now transdermal chelation), but we only need him in case Matthew gets sick between his annual "well-child" visits...and they have weekend office hours! I had to attach this pic of Mr Rogers (remember his TV show?) b/c the new ped looks a lot like him and was even wearing the red sweater (with a teddy bear tie)...and it was 90 degrees outside!

Last Day at Summer School...and my first "video remix" creation!

Great DAN Visit!

We went to Richmond to see our DAN (Defeat Autism Now) doctor on Friday (pictured right). She's a developmental pediatrician with 30 years experience, has been a part of the DAN movement since its beginning, and has testified before Congress regarding the link between vaccinations and developmental disabilities. This is the third time we've seen her and I like her more each visit. Matthew was an angel at the office and flirted with the staff...the nurse there calls Matthew "her little boyfriend". :) But things got ugly when we went to a nearby lab for the blood work. I'm hoping that will get easier for him with time/experience.

Matthew will continue the GFCF diet, his daily supplements, and will begin DMSA transdermal chelation this month. If I hadn't done so much research on this topic I would have been scared/said "no way", but I am confident in what we're doing and excited to start the heavy metal detox process. We will apply the cream to his arms (or feet, or back) over a 3-day weekend twice per month. That's it...pretty simple...no suppositories, no oral meds, no IV's. It is the least "invasive" way and I am very comfortable starting out with this low/slow method. Eventually we might switch over to the [Andy Cutler] oral method, but let's just try the cream for now and see what we can pull! We'll be checking his blood (for kidney/liver functions & mineral levels) every 2 months. We'll also keep an eye on his gut yeast issues b/c that tends to flare during chelation (but less so with the transdermal). I bought some Yeast Aid from Kirkman's and have a prescription for an anti-fungal in case we need it.

Special Olympics "Young Athletes" Program

Matthew had his first session of the Young Athletes program today. This is a free program that meets for almost 3 hours every Saturday in August. (Today he only lasted 1.5 hours, but that's ok.) Matthew had a great start...he loved dancing to the warm up music and wasn't shy about going into the center of the circle.


Then the kids (who are aged 3 to 7 years) were broken into groups and sent to one of six stations: soccer, baseball, track, obstacle course, bowling, and basketball. Matthew refused to participate in the basketball corner and ran around the gymnasium instead (as did a few other "explorers"). He was a little more interested in bowling and absolutely LOVED the obstacle course.


A pretty volunteer tried to get him to play baseball, but it didn't last long b/c there are sliding glass doors outside the gym and those are Matthew's favorite thing to watch (open & close). He never made it to soccer (he was pretty overwhelmed by then).

We did stay for the parachute activity, and Matthew enjoyed running underneath it but got frustrated when it came down and the kids had to get out. So we waited for him to stop fussing, offered him juice, and said let's go home. We wanted to leave on a positive note so he'll be excited to go back next week. I think this 5 session "camp" will be really good for him b/c he's with a group of 20 kids (plus their parents/siblings & camp personnel) and is being introduced to sports/new physical activities. (P.S. You can click on the 3 pictures to make them bigger.)

Boo-boo & Band-Aid Song

Matthew fell on the sidewalk and skinned his knee on Saturday. Since then we have been putting a band-aid on it every night after his bath. I tell him not to touch it and that the band-aid will make his boo-boo better. He's been singing the commercial jingle: "I am stuck on band-aid brand and band-aid's stuck on me". Here's a video of him singing part of it...he was sitting on my lap so I was holding the camera at a weird angle and then he jumped off/stopped singing, but at least you can hear some of it. I didn't realize until we started recording that he had just just taken the band-aid off...for the first time in 3 days!

My Obsession: Pear Juice

Matthew has yeast in his gut and I've learned from other ASD mommies that pear juice is the least of the "yeast feeders" (as far as juice goes). I send Matthew to preschool with juice for lunch and snacks, so I usually try to send him with 1-2 boxes (depending if it's a long or short day) and a sippy cup of 1/2 juice, 1/2 water for lunch. Let me tell you that pear juice is not easy to come by (unless you buy the Gerber kind in the baby aisle...but I prefer the organic).

We have 3 Whole Foods stores nearby that I frequent for his GFCF foods. Today I hit the jackpot in Fairfax...pear juice boxes! As you can see in the pic, I now have 48 of them...woo-hoo! The last time I went there they didn't have any, and now they don't b/c I cleaned them out! And none of the grocery stores carry pear juice in bottles anymore...what's up with that?! So if you ever see pear juice (any brand), let me know b/c I'm always on the hunt!

"Secret Ingredients" that = Gluten & Casein

A friend from the GFCFKids Yahoo Group emailed this list. It comes from The Kid-Friendly ADHD & Autism Cookbook (which I have, but am still reading!). Matthew has been on the Gluten-free/Casein-free diet since December. It is an on-going learning process and now with this new info, I need to check the labels on all his food (once again) to make sure we are still "legal"!

Gluten: wheat berry, couscous, flour, graham, semolina, durum, bran, bulgur, cracked wheat, rusk, oat bran, oat germ, oatmeal, oat flour, rolled oats, malt, starch, barley pearl, rye starch, hybrid of wheat and rye, species of wheat, ancient wheatlike grain, mixture or oat, malted drinks, ovaltine, postum, beer, ale, some grain alcohols, some artificial colorings & flavorings, caramel coloring & flavoring, confectioners sugar, syrup (unless 100% maple syrup), soy sauce, worcestershire sauce, ketchup (unless organic), dextrin, monosodium glutamate (MSG), citric acid, hydrolyzed plant protein (if wheat), modified food starch, malt (barley), canned soups, bouillon, powdered broth, imitation seafood & bacon, processed cheese spreads, pudding, mashmallow cream, stuffing mixes, breading, bread crumbs, gum, glues, binders & fillers, play-doh, school glue.

Casein: Mammal milk, buttermilk, evaporated milk, yogurt, kefir, cream cheese, sour cream, cream dressings, ice cream, sherbert, cheese, curds, cottage cheese, whey, butter, canned tuna, nondairy creamers, whipped toppings, salad dressing, bakery glazes, breath mints, fortified cereals, high-protein beverage powders, infant formula, nutrition bars, processed meats, some nutritional supplements, milk solids, lactose, galactose, lactalbumin, lactoglobulin, caseinate, lactobacillus (if not dairy free), calcium caseinate, galactose, hydrolyzed milk protein, hydrolyzed vegetable protein, lactalbumin, lactalbumin phosphate, lactate, lactic acid, lactoglobulin, lactose, magnesium caseinate, potassium caseinate.

First OT Session

Matthew went to his first OT appointment yesterday. He will be going for 1 hour per week. The therapist is very nice and knowledgeable. She immediately noticed Matthew's toe walking and hypotonia. After playing with him and doing some tests she said he is "gravity challenged", has motor planning problems, and is tactile defensive. She will focus on gross motor activities and core/upper body strengthening during his sessions (and give me ideas for home).

Matthew's favorite part of the session was jumping on the mini-trampoline. His least favorite part was having her put a dollop of lotion in his hand and then rubbing it on his arms...he didn't like the feel of the lotion or her light touch, so to combat that we will do deep pressure. She said his fine motor skills are age appropriate and was impressed with his attention span. The session went well and it's at the same clinic Matthew used to visit for speech so he is familiar with it and was very excited to return.

Updates: Summer School, Lab Results, EEG, OT

Matthew started summer school this week (they call it Extended School Year). He'll be going to his usual preschool autism class for 20 hours/week for five weeks. In addition, he is a student in the PAC Beginning Hands-on Training and for that he stays an additional 2.5 hours per day (for 5 days)...we volunteered to do this as it helps train teachers.

We received the results of his Urine Toxic Metals test (we sent a sample to Doctor's Data). The heavy metals Matthew scored higher in are Nickle, Lead, and [the dreaded] Mercury. (A hair test a few months ago showed that he also has high Arsenic, Antimony, & Tin.) We go to see his DAN doctor in August...I think it might be time to start detox/chelation.

I am in the process of getting Matthew signed up for a 24 hour video EEG at Children's in DC. We need to do this to hopefully rule out seizures. He has staring spells which are common in kids with autism, but sometimes absence seizures/petit mals grow up to be grand mals and we need to know in order to control that. The worst part will be attaching the many leads to his scalp...from what I hear they attach them with a stinky cement and they're hard to remove. Matthew has sensitivity issues so I dread having to hold him down for 10 minutes while they put them on. He hates people touching his head so this will not be a fun experience for him.

Lastly, we got word from the Chesapeake Center that they hired a new occupational therapist and b/c we were at the top of the waiting list (we've been on it since last August) Matthew will start OT next week, for 1 hour per week. We will finally get that sensory diet we were promised by Early Intervention 11 months ago! :)

New Train Table!

I did it...finally bought Matthew a train table. Matthew received a GeoTrax train set for his birthday last March, and since then it has been sitting on the living room floor. Ever since the first time Matthew went to Peter's house, he has been talking about his train table...sooo, we are keeping up with the Mankins :) and now have a train table! John put it together like a champ and Matthew is using it. We can't wait to have Peter come check it out!

Fernandez Family Visit

Long-time Navy buddy Ed Fernandez came to visit with his wife Karen and kids on Saturday. Matthew had fun playing with 4 year old Daisy and her 2 year old brother Alex. Daisy was quite a little charmer and complimented me on several things (such as the "lovely foot stool" in the bathroom)...did I mention she is only 4?! The kids had fun running around the backyard, playing on the swings, and watching a Care Bears movie. I never knew boys would be into Care Bears but Matthew LOVES them...especially Wish Bear. It was great seeing everyone.

Fun With Peter & Emma

Today we had a play date with Peter and his sister Emma. Most of it was spent outside in the backyard playing on the swings and with bubbles (thanks Kathy!). We did go inside towards the end to have a quick snack and play with trains (you just can't have Peter and Matthew together without trains being involved!). I think I might have to break down this weekend and buy Matthew a train table...I saw one on sale at Toys R Us for $79.

Won A Contest!

I am the proud winner of the GFCF Poop Blog contest. As a result, Matthew will be receiving a month's worth of free diapers/pull-ups and we are very grateful for these! Check out the website (warning: pictures of kiddie poop) and/or Tori's other blogs:

http://gfcfpoop.blogspot.com/

http://gfcfblog.blogspot.com/

http://lend4health.blogspot.com/

Matthew's Friend Camryn

Matthew has a friend named Camryn (she has known Matthew since he was born!). We saw her last week during our very brief visit to Chesapeake. Camryn is 4 and as you can see in the pics, she is gorgeous! Matthew had fun playing "elevator" with her (one of his obsessions), playing with toys in her room, and watching Bambi (he loves this movie). Camryn was a great hostess...I wish our families lived closer so we could spend more time with them!

Matthew's Friend Peter

Matthew has a few friends but the one he talks most about is Peter (he says "go to Peter's house"...see video below). Peter is in Matthew's class but will be heading off to kindergarten soon. He is 5 years old and has a super cool train table with LOTS of trains that Matthew loves to play with. We are looking forward to the next play date!

Pirate's Cove Water Park

Yesterday we went to a pirate-themed water park. It has a 24-foot high play structure with a 300-gallon dumping bucket, water slides, and waterfalls. It's close to our home and a good introduction to water parks (geared towards kids 3-6). Matthew enjoyed it until he went down the slide and went under water. Due to his sensitivity issues, he has an aversion to getting his face & ears wet. After that he kept repeating "go home, got to go home" so we left. We will try again in a couple weeks.

Afternoon @ Pohick Bay Park

Today we took our first trip to the Pohick Bay Regional Park which is off the Potomac River and only 8 miles from our house.

Matthew saw a deer ("Bambi's mommy") and some baby catfish (that a boy caught and put in a bucket).

He walked and sat on the dock and then played in the sand and threw rocks in the water.

I think if he had a bathing suit on he would have gone in the water! Since the park is so close and he enjoyed it so much we will be going there often.

Here's a short video...

End of School Year & New School News

Matthew had his last day of preschool on Friday. He's off for 3 weeks and then returns for 5 weeks of summer school (4 hours per day). He will be attending a new school in the Fall. It is the same PAC program but in a different location. It will be a transition for him, but we hear the school has a good reputation and one of his classmates will also be transferring.

The teachers at his current school made this video to be shown at a potluck dinner for all the preschoolers and their families. We had terrible storms that night so the dinner was cancelled, but Matthew's teacher sent a copy of the video home and Matthew LOVES to watch his friends. It's a 6 minute video and most of Matthew's "close-ups" are during the first song. (He's the only blond boy with glasses so it's easy to pick him out!)



P.S. All of the children in the video either have the "developmental delay" or "autism" label. They are a great group and we will miss them!

Number Two Nursery Rhyme

Here's a video of Matthew reciting a nursery rhyme. It's from the Baby Einstein Numbers Nursery video and the language cards that go with it. Matthew has it memorized...now we just need to work on pronunciation! Listen carefully!!!



"Call us a couple. Call us a pair. There are two of us, and so we share. Two apples and two lollipops, two pickles and two red gumdrops. We share two hugs b/c we're friends - on one the other can depend."

Green Our Vaccines Rally - "Too Many, Too Soon!"

Last Wednesday (June 4th) was the Green our Vaccines Rally in Washington, DC. Speakers included: Jenny McCarthy, Jim Carrey, Robert F. Kennedy Jr., Dr. Jay Gordon, Dr. Jerry Kartzinel, and Dr. Boyd Hayley. More than 40 autism and environmental organizations supported their efforts and an estimated 8,500 participated. Every state was represented including supporters from Mexico, Canada, and the Philippines.

I was really looking forward to marching but became sick the night before and ended up staying home in bed...wishing that I was there in my green shirt holding up a picture of Matthew. I want to thank the 8,500+ people who rallied to demand that our government take the neuro-toxins out of our children's vaccines. Toxins such as mercury (thimerosal is still in 11 FDA-approved shots), aluminum, ether, antifreeze, formaldehyde...the list goes on & on.

For the record, I am not anti-vaccine, just anti-the poisons they have in them and -the schedule that is pushed on unknowing parents (children receive 36 shots by the time they are 3 years old). Before Matthew was diagnosed with autism, I had no idea these toxins were in his shots. IF I had known, I would have used an alternate (delayed) vax schedule with one shot at a time. I also would NOT have given him Tylenol before and after each vaccination (as our peds advised) b/c acetaminophen reduces glutathione which the body needs to detox.

Here are a few links with news coverage and a blog with some excellent pictures from the rally. Please take a moment to look at them...

http://abcnews.go.com/Video/playerIndex?id=4995883

http://www.myfoxdc.com/myfox/pages/Home/Detail;jsessionid=1E14C6AE3818087A676F99DCB6577784?contentId=6698310&version=2&locale=EN-US&layoutCode=VSTY&pageId=1.1.1&sflg=1

http://www.cnn.com/video/?/video/showbiz/2008/06/04/bts.carrey.mccarthy.vaccines.cnn

http://adventuresinautism.blogspot.com/2008/06/it-was-good-day-in-dc.html