Matthew Update (finally!)

Wow, I can't believe it's been FOUR months since my last post. The summer just flew by! John was deployed and Matthew was busy with summer school, OT, ST, ABA, and therapeutic horse riding lessons. We recently moved from Northern Virginia to Jacksonville, FL...it is HOT here! Matthew is in pre-K now (the varying exceptionalities class, not the autism one). He has 1 teacher, 1 assistant, and 12 students in his class. He seems to like his new school and home. He definitely misses the DC metro and train at Burke Lake park, but we took him to the Jax zoo and the beach yesterday (which I think are making up for it.) Ok, time to get back to unpacking!

FUN @ the Fun Fair!

Matthew & I attended the "Chatterbox Fun Fair" on Saturday. It was sponsored by the FCPS' Assistive Technology Services and held at a local elementary school. They had crafts, games, and an appearance by Jimbo the Clown. Matthew had a great time. He LOVED the gigantic moon bounce. Here's a video with the pics.

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Attended my 1st DAN conference & loved it!

I was in Atlanta from Thursday til Sunday at the Autism Research Institute's (ARI) Defeat Autism Now (DAN) conference. I am not crazy about that title..I think Heal would be a better word than defeat...but that's another post!

I learned so much about neurotoxins, detoxification methods, diets, our kids' GI tracts and immune systems. I met some of my on-line friends (fellow warrior moms) and saw some of my scientific/medical idols like Dr. Bock, Kartzinel, Jepson, and Wakefield (who is HOT! :)

I want to list the lectures I attended to give you an idea of what ARI/DAN is about and what treatments I am researching/implementing for Matthew. [For those that don't know: we have been doing "bio-med" with the help of our DAN Dr. Megson for 1.5 years and have seen steady improvements. I am a firm believer in the protocol and while it may not recover/"cure" every child, it will certainly heal the yeast/bacteria in their guts (allowing them to focus/learn during school/therapy) and rid their bodies of the harmful neurotoxins they received from their environment (including mercury & aluminum from vaccines). We've been chelating Matthew (with transdermal DMSA) since last summer and the toxic heavy metals continue to excrete...it takes 2-3 years.]

• Defending your child from a toxic world (Dr. Freedenfeld)


• Intro to the DAN treatment approach (Dr. Mumper)


• The child as a whole: why biomedical & behavioral interventions [ABA] are both critical to growth & recovery (Dr. Granpeesheh)


• Nourishing our children, Evolving diets for autism (Julie Matthews)


• Achieving a quality elimination diet & beneficial nutritional supplementation (Dana Laake)


• The autism-digestion-brain connection (Dr. Lipski)


• Tools & strategies to survive the diagnosis, & thrive through the recovery of an affected child (Dr. Levinson)


• Biomedical interventions from A to Zinc (Dr. O'Hara)


• Mind & Gut: the GI tract & autism (Dr. Hanaway)


• The ABCs of immunology in ASDs: improving immunity & understanding inflammation (Dr. El-Dahr)


• Metabolic system in autism (Dr. Jepson)


• The brain concerns in ASD involve more than the gut-brain connection: neurotransmitters & neuroimmune issues in autism spectrum disorders (Dr. Bradstreet)


• Chronic fatigue syndrome, autism, and introducing autism360.org (Dr. Baker)


• Clinical approaches to detoxification in autism spectrum disorders (Dr. Bock)


• The road to recovery: walking with patience, peace, & perseverance (Dr. Levinson)


• T cell regulation, inflammation, & autoimmunity: resolving a chaotic paradox in autistic enterocolitis (Dr. Wakefield)

On Saturday night, I hit the town with Janine & Rebekah...2 moms that I met on-line shortly after Matthew's diagnosis and have kept in touch with on Facebook. It was great to finally meet them in person! :)

Happy Birthday Matthew!!!

Today is Matthew's FOURTH birthday. We are having a party for him tomorrow..invited all his friends from preschool (both autism classes). Here is a video montage of my favorite Matthew pictures taken over the last year. I hope you enjoy it & Happy Spring! :)

Make an on-line slideshow at www.OneTrueMedia.com
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Make an on-line slideshow at www.OneTrueMedia.com

Trip to GA/John's Change of Command

Matthew & I (along with my dad) flew down to Kings Bay, GA on Wednesday for John's Change of Command ceremony/reception. We were there until Saturday and it was a big break in routine for Matthew. Yes, he had some tantrums but had his good moments as well. It was his first time flying. He did better going than coming back...the flight attendant made him turn off his DVD player (he was watching Cars) and buckle up for landing & he didn't aprreciate that!

Here is a video montage I made from the pics we took...hope you enjoy it!

Photo and video editing at www.OneTrueMedia.com
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Photo and video editing at www.OneTrueMedia.com

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!