Matthew's Heavy Metals & MTHFR Mutation

Above is a picture of Matthew's Fecal Toxic Metals test results. As you can see he is high in Antimony, Nickel, and Tungsten...and pulling lots of other metals. (Mercury is always the last to come out so it is low here.) I've been getting some good advice from my autism mamas on FaceBook, but if you have any advice please comment! This test was done after his 10th round...a round is 3 days on, every 8 hours of transdermal DMSA (cream applied to his feet, back, shins, thighs, or forearms), then we take 11 days off. Most people say transdermal is ineffective and go for oral, suppository, or IV chelation. Well, in Matthew's case, the transdermal is effective and we are sticking with it. His DAN wrote "incredible pull of metals" on her note..which is great that they're coming out, but not good that they're in his little body to begin with!

His blood tests showed that Matthew has the "double defect in MTHFR" which is a genetic mutation. Per LabCorp: "two copies of the C677T mutation were identified. Results for the A1298C were negative." ...so he has 2 copies of the same mutation (C677T), which means he inherited them from both John & I. I will call my doctor next week to schedule a blood test. I read some of the risks associated with this mutation are: heart disease, blood clots, stroke, etc. Our DAN noted that Matthew will have to be on B6, B12, and folate for life (all of which he is already taking - but B6 in P5P form and follinic acid which is folate broken down). This is not good news, but at least we know he has this and can plan accordingly. (BTW, I specifically asked for this test b/c I had heard it was more common in kids with autism.)

Snow Day!

We have SNOW!!! John is home visiting this week & Matthew hasn't been at school since last Friday. He had a 4 day weekend and then school was cancelled today due to snow/ice.

We took Matthew out to play in the snow and he rode on a sled for the first time.


He LOVED it!

Quick Update & A Few Pics

Happy New Year everyone! Family update: John moved to Georgia on Sunday (he's attending school & then reporting to his new submarine); Matthew returned to autism preschool yesterday (his new line: "I can-ant go to school"); and I'm almost recovered from my hernia surgery/the holidays & have begun my [annual] new year's diet/exercise program (hopefully this year it will last!). Here are a few pics from Christmas...yes, Matthew is still cute and his blinking has stopped - yay! :)

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!)