We've been legally GF for one week now. So far so good, but we're leaving for TN on Wednesday afternoon and I am worried about "infractions" during our visit. The following info is for anyone interested in a gluten-free diet...it is also a reminder of the hidden foods we need to avoid during the trip:
Common foods containing gluten: Wheat Rye Barley Oats (sometimes contaminated with gluten) Bulgur wheat Tabooli Couscous Bread Pasta/Noodles Pancakes Baked goods: cakes, muffins, cookies Crackers Flour
Hidden sources of gluten: Baking powder Barley malt Bouillon cubes Hydrolyzed plant or vegetable protein Meats: lunch meats, hot dogs and sausages, self-basting turkeys Miso Monosodium glutamate (MSG) Mustard powder Packaged foods Soy sauce Soba noodles Textured plant protein (TPP) Textured vegetable protein (TVP) Misc. Foods (some have gluten so check labels): curry powder, most white pepper, dry seasoning mixes, gravy mixes and extracts, meat condiments, catsup, chewing gum, snack bars, pie fillings, baked beans, salad dressings, sandwich spreads, muesli, instant coffee, breadcrumbs, vanilla and other flavorings made with alcohol, most dips.
We often use abbreviations when chatting on boards and posting on blogs. I thought the following list might be helpful for my readers. There are MANY terms and abbreviations that are used when discussing Autism...these are the ones I use daily:
ABA = Applied Behavioral Analysis (therapy method) ASD = Autism Spectrum Disorder DAN = Defeat Autism Now! DX = Diagnosis EI = Early Intervention GFCF = Gluten Free/Casein Free diet
HFA = High Functioning Autism IEP = Individual Education Plan NT = Neurologically Typical ("normal" child) OT = Occupational Therapy
PAC = Preschool Autism Class PDD/NOS = Pervasive Developmental Disorder, Not Otherwise Specified PT = Physical Therapy SID = Sensory Integration Disorder SPED = Special Education ST = Speech Therapy
I took Matthew to the bank today because I had to cash two checks. The last time we went to NFCU he kept running away from me, so this time I put him in the stroller. Of course, it was crowded - it always is! We were only there about 5 minutes when he had his meltdown. There were at least 20 people in line ahead of us and I could see the line was not moving so we left. (I just couldn't take another public screaming session.) Going in, I had thought he would be ok because he had a paci, a cup of juice, and a small toy. I don't know what else I could have done to make him comfortable...at this point he just cannot tolerate waiting in line.
A crazy old man slammed into my car in the parking garage while we were leaving the hospital today. He must have been 90+ years old and was totally out of it. He hit my car while pulling into his spot, then backed out and went full speed ahead into the cement wall. He didn't even blink! I walked around to see if I had any damage and didn't see any so I got back in the car. I was trying pull out when the man opened his door (almost hitting me again) and then wobbled past me down to the elevator. Not once did he look at me, my car, his car, or try to apologize. He must have dementia or something. I just wanted to get away from him! Hopefully my car isn't messed up...I couldn't imagine trying to get this man's insurance info. He should not be allowed to drive!!!
I took Matthew to see a Nutritionist this morning. I had made the appointment months ago before we ever saw our DAN doctor or started the GFCF diet. She asked me why I was there and I told her I'm worried about Matthew not eating fresh fruits or any veggies, him not liking the milk replacements, and wanting to make sure I'm giving him a balanced diet. Well, she had never heard of a DAN and did not recommend GFCF (b/c there haven't been any official studies to prove it helps autism...even though thousands of moms swear by it). She simply advised me to give Matthew V8 juice, read the "Sneaky Chef", try Quinoa (another GF grain), and make fruit smoothies.
Matthew did surprisingly well at the eye doctor today. I kept waiting for him to freak out and he never did! Our appointment was for noon but we didn't get called until 1pm. In the meantime, Matthew played with the toys in the waiting room and ate snacks. He did not fuss or ask to go to the "ki" (car). Then they called us back and the doctor came in two minutes later. Matthew sat on my lap in the examining chair and let the doc shine lights in his eyes and I kept thinking "who is this kid...where is Matthew?!" I guess we've been there enough now that it's no longer stressful for him. The doc said to come back for a recheck in 4 months. I asked if Matthew will eventually need surgery for the cross-eye and he didn't think so. I also asked if Matthew would need glasses for the rest of his life and he said he would probably outgrow them by puberty. I really like Dr Parelhoff...he's been practicing for 25 years and is wonderful.
Matthew and I went to visit his preschool class today. He will begin on January 2nd. When we entered the classroom he was fine. Then I had to change his diaper b/c his leaked and his pants were wet. I did it on the changing table there and he refused to lie down but we managed and I had spare shorts (need to add pants!) in his diaper bag.
Then he went over to play with some toys while all 5 kids were lining up by the door. The teacher said it was time to go to the gym. So I tried to get Matthew to follow and he didn't want to leave the FP school bus (his favorite) so he started crying. We had to drag him down the hallway (with the bus) to the gym and for the next half hour he screamed and cried and only wanted to be held by me (standing up). Everything was new to him (the lights, smells, sounds, other children in his face) so he was very overwhelmed and out of his comfort zone.
We finally made it back to the classroom and he was still crying. I told him we were going to the car and he stopped, caught his breath, and said goodbye. The teacher said it was normal for him to cry and be upset and this would happen for at least the first week of school but it will get better. It is heartbreaking to watch but I know it will make him stronger and by the time he gets to kindergarten he will be a pro.
This is a sad week for us..we said goodbye to Valerie yesterday and had to do the same with Kim today. Kim was Matthew's private ST at the Chesapeake Clinic. She only sees clients there on Tuesdays (b/c she does EI home visits the rest of the week) and Matthew will be in school all day on Tuesdays. The only times Matthew could do private ST is on Monday and Wednesday afternoons and unfortunately Kim is not available.
I brought my camera and took a short video (see clip above) and some pics. Kim had some new toys today and one of them was a headband with ears attached. Matthew really enjoyed pretending to be a dog. She also gave him a gift (holiday play dough, birthday candles, and a little cowboy). Thanks Kim...we will definitely miss you (and the elevator)!!!
Today was a busy day for Matthew. He had his last session with Valerie (see post below), had ABA therapy with Jenn, and met Charlie for the first time. Charlie is 28 months old and is in the preschool autism class (PAC) that Matthew will join in about 2 weeks. He came to the house with his very nice mommy and younger brother Alex. Matthew and Charlie shared GFCF snacks, played, and watched a Spectrum Connections music therapy video. Charlie and Alex could not be any cuter and I have a feeling that Matthew and Charlie will be good friends...and their mommies too!
Today was Matthew's last ST session with Valerie. He is losing his at-home services through Early Intervention (Infant & Toddler Connection) due to the fact that he is transitioning to the public school system. This is an older picture of Valerie & Matthew...I forgot to take one today. We will both miss her very much. Hopefully she will come visit us sometime and bring her "hay-go" (= play dough).
Today is the first day of Matthew being 100% Gluten-free/Casein-free. (Wish us luck!!!) Here's what he ate today:
Breakfast: nitrate-free turkey bacon, 1/2 of a "Foods by George" (rice) English muffin (they're big like biscuits) with Smart Balance Light, 100% apple juice mixed with water and supplements, Gerber freeze-dried apples and 3 bites of the organic applesauce. (Matthew doesn't like fresh fruits or any kind of veggie so we have to be creative.)
Morning Snack: 100% cranberry juice (mixed with water & supps) and 5 (tiny) EnviroKidz organic vanilla animal cookies.
Lunch: combined left over snack juice (he didn't the cran) with 100% grape juice (w/ water & supps), Wellshire Kids nitrate-free turkey-ham lunch meat, the other 1/2 of his muffin, 1 slice of Galaxy Vegan mozzarella flavor "cheese"...which he HATED so I gave him some left over organic turkey (from last night), and raisins.
Dinner: 100% grape juice (w/ water & supps), lean ground beef with Heinz ketchup, Tinkyada brown rice pasta shells with Smart Balance Light, Gerber apricots & mixed fruit (thankfully he loves this one), and he'll have "legal" rice crispie treats (I just made them) later for Dessert.
P.S. If you are wondering why he always drinks juice mixed with water, it is because he hates all the milk replacements. Someone recommended Pacific brand rice milk so I will try to find that one. We have tried several other brands and flavors but so far haven't had any luck. Will keep trying!
I had planned on Matthew going 100% Gluten-free starting tomorrow morning but things have been HECTIC and I haven't had time to go to Whole Foods (alone) to get all the "legal" foods. I tried to take Matthew there a few days ago but he had never been before and he went into sensory overload from all the smells (tons of fresh flowers), sounds (loud holiday music), & people (it was crowded and the aisles were packed). He had a complete meltdown so we went to Giant instead (and he was fine there b/c it wasn't stressful) but they don't carry most of what we need. So the GFCF diet will begin on Sunday morning!
John, Jenn (our BCBA) and I attended Matthew's IEP meeting today. The other members of the "team" included his teacher, an OT, a PT, and assistant principal. Everyone was nice, the meeting went well, and we got to tour the school.
We saw Matthew's classroom and met the two aides (one male, one female). The only thing I did not like was the hard plastic changing table. Matthew doesn't like to be flat on his back (due to sensory issues) and is used to his table being cushioned and having a pillow for his head.
I realize that school is going to be a difficult transition for Matthew (and me too) but he needs the 27 hours per week of ABA-based instruction and supposedly Fairfax county has one of the best autism programs in the nation. His first day of school will be January 2nd...luckily it is a Wednesday so he will only have 3 days until the weekend.
I received a packet from Mathew’s DAN doctor today. It included three prescriptions and the following recommendations:
1) L-carnitine solution 100 mg per 1ml Give 2 tsp p.o. B.I.D. 600 cc 2) Diflucan susp. 50 mg / 5 ml 1 tsp p.o. B.I.D. 300 cc 3) Nystatin susp. 500,000 u per 5 ml. 2 tsp p.o. B.I.D. 600cc
Avoid daily use of highest oxalate foods (examples include peanut butter, soy protein, spinach, sweet potatoes, nuts & berries), but concentrate on GFCF foods.
Use activated charcoal 1 cap at bedtime the first week of yeast treatment (Diflucan) to decrease the “die off” reaction seen day 2 to 7 of treating for yeast. Ask for caps at the drug store.
Your child needs: CoQ 10 – add 50 mg per day Carnitine – Rx, add 1,000mg/day Glutathione – apply to skin daily (Rx from Wellness) Add P5P 50 mg/day (Kirkman Labs)
Call the office if you want to try nasal B12 or shots every 3 days. This is quite helpful and the labs indicated Matthew needs more B12.
Hair Test: Your child shows a c shaped profile. Your child shows displaced normal nutrients. Your child shows Lithium depletion. Call the office and we will fax a prescription for lithium cream to Wellness to replace a normal nutrient.
We have a few ideas for you about metal avoidance: (these were marked for Matthew) Antimony…in flame retardant – cover you child’s mattress in a hypoallergenic cover. Arsenic…in chicken feed, so buy organic chicken. In treated lumber so wear shoes on decks and don’t allow your child to play under a deck. Avoid cigarette smoke. Tin…in tin cans and in stannous fluoride.
********** All this stuff is like Greek to me...I've never heard of most of it (but why would I?)! It is very overwhelming and we'll be adding this stuff to the supplements Matthew is already taking. I would appreciate any comments/advice/warnings from other autism mommies that currently use/have tried these regimens. Thanks!!!
I sent John to Whole Foods last night on a GFCF treasure hunt. Our hero came back with a $7 small box of Amy's frozen pizza. The crust is made of rice and the cheese is soy. There's very little sauce but it has finely chopped spinach on it and Matthew ate half the pizza for lunch! (Yes, Matthew ate spinach...he didn't realize it was a veggie!) I am so glad we found a GFCF replacement for his favorite food. :)
It snowed last night so our tour of Matthew's preschool was cancelled. Instead we went to the mall (he enjoys shopping). This time I left the stroller in the car and let Matthew walk. We started by eating lunch at Arby's...not my food court restaurant of choice but I didn't think he would enjoy Taco Bell or Chinese. I've been in Arby's maybe 3 times in my life so I wasn't sure what to order, but I got Matthew a small plain JR roast beef meal and a chicken cordon bleu for myself. I had brought a juice box in my purse for Matthew so I drank his soda and we shared the fries. He actually ate about 1/3 of the plain roast beef slices...I was in shock! Now we have another protein alternative for when we're out and about. He also sat in the booth like a big boy and I had to laugh b/c the seats were so low and the table was so high I could barely see him!
After lunch we went in search of the glass elevator. Matthew LOVES elevators. He by-passed the glittery/light flashing merry-go-round to get to the elevator (he calls it an "ab-bie"). We went up and down about 10 times and he was in Heaven. After the ride we went into Macy's to find their elevator and the entrance to the parking lot. He enjoyed the ab-bie but it wasn't as exciting as the glass one. As we left he yelled "bye bye Target!" (that's where we usually shop) and said goodbye to the elevators.
On the way home I had to stop at Giant to pick up my Rx...Matthew has a word for this store but I can't figure it out. As we walked to the car he said "bye eat!" He associates the grocery store with eating so that's good...he knows there is food there and what do you do with food?...eat! Upon our arrival home we went out to the back yard to get some sun and play in the snow. We had fun and I attached a video to the post below (and yes, he still had a little ketchup on his face!).
We started Matthew on a casein-free diet on Saturday. I have replaced his 2% milk with rice milk and almond milk (and will eventually try soy but I have read this has lots of estrogen and is not good for the esophagus). Matthew has lost access to yogurt, cheese, butter, and ice cream - basically all the foods he loves and actually eats (he is a very picky eater)!
Matthew hates all the milk replacements (even the chocolate and vanilla flavored ones) so I am worried about him. We are giving him a calcium supplement but need to come up with other foods he can try. We will do this for 2 weeks and then begin gluten-free as well. I think he'll be able to stand that better b/c even though almost everything has some form of wheat, oats, or barley in it, there are more replacement foods for him (they are expensive and hard to find but they do exist).
"Autism is a neurological disorder that often interferes with a person's ability to communicate with and relate to others. Signs of autism almost always develop before a child is 3 years old. Typically, parents first become concerned when they notice that their toddler does not begin to talk or does not respond and interact like other children. Autism also affects how a child perceives and processes sensory information. The severity of autism varies. Some individuals need assistance in almost all aspects of their daily lives, while others are able to function at a very high level and can even attend school in a regular classroom. While this is a lifelong condition, early diagnosis and treatment can make a major difference."
Autism and the God Connection
Autism: An Inside Out Approach
Autism: Effective Biomedical Treatments
Biological Treatments of Autism
Changing the Course of Autism
Children With Starving Brains
Enzymes for Autism
Evidence of Harm
Feast Without Yeast
Finding You Finding Me
Healing Our Autistic Children
Healing the New Childhood Epidemics
Let Me Hear Your Voice
Louder Than Words
The Out of Sync Child
The Soul of Autism
Thinking In Pictures
Unraveling the Mystery of Autism
What Your Doctor May Not Tell You About Children's Vaccinations