Saturday, August 30, 2008

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):

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!)

Friday, August 29, 2008

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:

Thursday, August 28, 2008

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.

Monday, August 25, 2008

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.

Thursday, August 21, 2008

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!

Monday, August 11, 2008

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 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.

Saturday, August 2, 2008

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.)