I started a new blog to start fresh: http://victorbiomed.blogspot.com/

Every therapy out there

I don't know if this is good or bad but Victor is now getting different therapies. He gets floortime at school, AVB with his private SEIT that comes here on Friday for an hour, AVB & RDI (how she manages to put the two together is astonishing) every Tuesday for 75 minutes with his private ST and Sun-Rise through the local rabbi's wife - schedule kinda changes weekly.

I'm back

I haven't blogged in a long time. Life is crazy. I thought about just starting a new one since Victor isn't GF at the moment but really I started this to talk about him & his Autism so I'll just keep posting here. Victor is now 3 yrs 3 months. He has many words and some phrases too but sometimes its hard to get him to say something without a lot of prompting. We can 100% attribute his development to the AVB he was getting. I say was because as of January 1st he was kicked out of EI (Early Intervention) where he was getting AVB & moved into the school system which pales by comparison in the AVB department. He is now in a program that believes in floor time. the therapists are all very nice & I can tell they care about Victor a great deal - I'm just not seeing any results yet and he's been stimming like crazy. I know there's a period if transition but I didn't expect it to be this long. we'll see. I am hoping to get some medicaid money to pay for private AVB.
Even though I have been on this journey for along time in some ways I feel like I am just beginning. We have dabbled in the biomed dept trying CF & GF and CLO but thats as far as we got. I'm going to start doing as many great plains tests as I can & go from there.

Update

Holidays drive me crazy. Sorry it's been so long.

Victor has been completely dairy free since Nov 5 (minus 2 incidents at school). We have seen a lot of improvements in his receptive language and it appears he is consistently saying "bo" for ball now (Yeah first word). We are going to be removing gluten again real soon. I am stocking up on gluten free, dairy free foods. We probably won't stay on it to long if we don't see any changes as we were gluten free before with no change. But maybe with no dairy it will be better. eventually we are going to reintroduce dairy to see if that is really the cause or if its just all his therapies, his age, his body maturing...whatever other causes there can be.

I've been tagged

OK. So I am supposed to write 8 random things about myself.

1. I became a naturalized citizen of the U.S. at the age of 9
2. I was a vegetarian for 6 years and a vegan for 1 before my now DH reverted me back to meat eating
3. while I have had non kosher beef & chicken at one point in my life, I have never tasted seafood or pork
   
4. I love girly movies (Romantic Comedies, Dramas...) but I also like Sci-Fi like Star Trek & X-Men
5. My tongue is pierced
6. Last year I finally gave up on watching All My Children which I had watched since I was 5 years old! (with my aunt & sister).
   
7. I briefly dabbled in paganism during my college years
8. I have always wanted to be a wife & mom

I know it's been awhile...

Sorry I haven't posted much lately. Victor has been sick off & on but he is finally on an upswing again - he woke up on his own this morning (we've been having to get him up lately) and was in a good mood all morning. His appetite is back and he is trying new & regular foods again (he was limiting himself to peanut butter & jelly sandwiches or chicken nuggets for days!). He is still dairy free and we see no difference. Maybe the real trick is to be both at the same time (which we plan on doing next) but it doesn't seem to be doing much for my friend's son Austin either. Mayeb teh diet just doesn't work for everyone.

A week and a half ago, Victor had an appointment with his Dev Pedi (this was a follow-up) and he officially diagnosed him with Autism. It was expected but still hard. I feel like Victor has so many strengths that I often wonder if there should be 2 separate Autism disorders - one with "classic" symptoms like lack of eye contact, behavior difficulties, and not wanting to be touched, and then one with great hugging, great eye contact, but really bad communication skills and sensory processing difficulties. Maybe part of me is still in denial.

bye bye casein, hello gluten

After much thought we have reintroduced gluten into Victor's diet. Our original plan was to leave him gluten free & take out casein on top of it so we would be GFCF but we really have not seen any indications that this has been working for us. We reintroduced gluten on Friday and he had a whole weekend of eating whatever he wanted. Today we took out casein. We're going to try this out for at least a month as well and then possibly do GFCF after that. So now this blog is named wrong but oh well!

Halloween was fun. We made it to about 2 dozen houses. Victor was a trooper. He seemed to have a good time (he loves being outside). He didn't quite understand what we were doing and didn't get any candy into his bag by himself but he loved going up to people's doors with mommy & daddy. Many times he chose which candy he wanted & then we put it in his bag for him.

Tomorrow we have a group meeting with EI. My husband, myself, EI coordinator, Special Ed 1, Special Ed 2, OT, & ST are all meeting up to go over Victor's plan. He has not made the improvements we were hoping for when we started this 7 months ago. He just got a new ST recently who is doing AVB with him & we are hoping that will help him more but they all want to increase his services. He currently has OT 2 times a week & she wants to bump it to 3, ST also 2, and she wants to bump it to 4, Special Ed 4 times, and they want to bump it to 5. OT also wanted us to get a PT eval but we really don't think he really needs it. I am not opposed to an eval but my DH really doesn't want to introduce another person - we just want them to focus on getting him to communicate.

Hot Cereal, Hand-Flapping

This morning I tried making him Red Mills' GF Mighty tasty Hot cereal. He REFUSED to try it - I could not get any into his mouth which was quite disappointing. The cereal wasn't so bad - DH & I had some. I put brown sugar, milk, & raisins in mind & Victor's. DH ate his with Maple Syrup.

Victor has been hand flapping a lot more the past few days. I have no idea why. He hasn't had any gluten that I know of (not that I think that's really working anyway). Can kids have a fish sensitivity? He had some fish sticks and I know he flapped a lot more when he had CLO. My DH doesn't think that's it but I guess I'm grasping at straws. Any ideas?

AVB

Victor's new Speech therapist (ST) started yesterday. We didn't get much accomplished as Victor went down for his nap late & was super crabby when I woke him up for this. He wasn't cooperating & cried most of the time. However it wasn't a total disaster as she explained AVB to me & how she is going to use it with Victor. She is also pushing EI (Early Intervention) for 4 times a week instead of 2 as she doesn't think that's enough. She said Victor was a good candidate for AVB because he is social, has good eye contact, and is aware of people, places, things... It's nice to hear someone having a plan for how we're going to get him to talk! She is going to use picture cards and a lot of repetition & also use rewards when he tries such as snacks, books (he's a book fanatic, and possibly some TV time though I told her I think that would backfire because he would probably get really angry when she shut it off). She seems very confident so I am hopeful!

Nothing new with the GF diet. I still don't see much of a change. We're planning on going CF as well right after Halloween and then we'll give that a fair shot before we scrap all this.

mmm avocado sandwiches

Another sandwich idea using that crispy bread stuff by Glutino. I mashed some avocado & added a touch of salt & lemon. He loved it :)

I had given him these sandwiches before with regular bread & he ate them fine but then when we went GF I tried giving him avocado chunks & he wanted nothing to do with it.

I love being able to add another lunch meal to send to daycare to my list!

Today I heard Victor "Moo" - now he was in the backseat in his car seat so I have no idea if he was looking at the cow in his book when he was saying it but I had given him the book when we sat down & I did point at the cow & say Moo.

Polenta!

I made Victor some Polenta last night (well my make I mean I bought the pre-cooked tube & pan fried some slices) and then melted cheese on it. He really loved it. I guess when we go CF we will try it with tomato sauce instead. I didn't take any pictures though :(

New Booster Seat

We moved Victor from his high chair to a booster seat at the table last night. Mostly because the high chair was annoying us but its a good step for him anyway. He seems to like it ok:
As you can see he is still using his fingers though! He is ok using the fork for the meat pieces & veggie pieces but he refuses to use it for things like pasta & rice. Sometimes he'll use a spoon for rice but mostly he uses his fingers.
I haven't been able to transition him to a regular cup yet either & now I'm going to start looking for a cup with handles - I think that will help him. We've tried sippies without handles & he's ok with those but cups are hard.

the noodles he is eating by the way are by Thai Kitchen: http://www.worldpantry.com/cgi-bin/ncommerce3/ProductDisplay?prmenbr=1279010&prrfnbr=1351043
I found it in the Asian section of my supermarket. I didn't know if he would like the roasted garlic flavor along with ginger & other Thai spices but he loved it! Here's a list of their GFCF products: http://www.thaikitchen.com/allergyinfo.html

Nothing new here

I didn't experiment with any new GF meals this weekend. He had some chicken breasts with dill on a salad, chicken nuggets ( that I made last week & froze), fish sticks, scrambled eggs.. nothing new.

I did however find some of the Red Mill GF Hot Cereal mix that is supposedly good so we'll try that for breakfast sometime this week.

I did want to say that the Glutino Crispy Bread works very well for sandwiches. Its not they typical sandwich as its crunchy but I put PB&J on it & Victor loved it. They taste like Rice Crispies cereal to me. I'm glad I found them - they'll be good for lunch "sandwiches"

Yesterday his poop seemed better so I am hopeful that the poop situation is almost over!

another day

Victor's had a bad cough lately so that with the diarrhea had us sending him to his pedi today. She was actually out so he saw someone else. That Dr said the diarrhea was probably due to the nasal drip and had nothing to do with being gluten free. She prescribed Zithromax because she said it was likely he had an infection. I'm not so keen on giving him antibiotics when I don't know for sure but his cough is really bad and even my husband is going to take the antibiotics cause he has it too.

I made a meatloaf last night that Victor really loved thankfully :). I wanted to give it to him for dinner but I wasn't sure about the barbecue sauce I used so I had to wait till today during their office ours to call them and yay it is GF. Now I have to think about dinner tonight!

TGIF! I am so tired.

Poop Question again

Another poop issue! Victor has had diarrhea for several days now - maybe even a week. He's never had it like this before & for this long and it's very smelly! Can this happen from being GF? His poops were pretty normal before we ever started GF and now there's always something!

Is he starting to talk?

On Friday we noticed that Victor was pointing to a cat in one of his books over & over & making a screech sound almost like meow. He has continued to do this all weekend. Then Today, his ST calls me and tells me that every time she said cookie, he said "Ka" (though sometimes he said "Da") but this was consistent & only when she said cookie (they were playing a cookie game of some sort). I hope I am not getting my hopes up for nothing. there have been times in the past where I thought I heard words or sounds and then nothing came out of it but he has never attempted an animal noise before!

Because I love this pic of him eating a slice of apple when we went apple picking I am posting it!

Chicken Nuggets

On Saturday I made some chicken Nuggets using these GFCF Veggie Crisp chips. I got the recipe from Kimmy Krocker over at You Tube. I don't think I grinded the chips down enough but Victor still loved them anyway!

Here is what it looked like before I baked them:

and here is what they looked like coming out of the oven:
You could see some of the "breading" came off when I flipped them - I just need more cooking spray next time.

I froze a bunch of them so hopefully they reheat well. (I made 2 pans).

I think next time I will use a little GF flour to coat the chicken first before I put it in egg mixture (this is how I make regular breaded chicken) and I'll grind the chips down further. Kimmy said to make sure you don't make it into a powder or it won't stick so thats why I was afraid of grinding it anymore.

Less Stimmy?

So It has been 2 weeks now that we have both stopped CLO & started GF. His stims are much less now. DH & I can't agree on whether they are just back to where they were before the CLO or even less. DH thinks its less and due to the diet, but I think its just back to before and due to the removal of CLO.

The only way we'll know for sure it to reintroduce the CLO at some point & see if the stims go back up. I do think he was more focussed on it but he was starting to flap like crazy and I had heard that was a possible side effect. Maybe I'll do some research and see if anyone reported better results with a certain brand. We were using Nordic Naturals Children's DHA soft gels. Victor loved them and ate them like candy. I was only giving him 1 a day (I had increased to 2 for a few days but then decreased back to 1). another side effect was his sleeping habits changed. He started to stay up in bed instead of going right to sleep at bedtime no matter what time of day we gave him the CLO. He still did that for awhile after we stopped CLO but now he seems back to normal.

We bought a couple of new GF snacks that Vic likes - KinniKinnick's KinniKritters (which are like animal crackers) and Enjoy Life's very berry snack bars. We found some corn spaghetti but we haven't tried it yet.

I finished reading the non recipe part of Special diets for Special Kids. I flipped through some recipes too. The Author suggests giving the diet 3 months & if it doesn't work then you can safely scrap it. We are still going to do GF only for 1 month before we introduce CF so I'm not sure if we will then do it for 3 more months or just 2. Of course if we see improvements then we will do it for life.

Still no progress

It's been about a week and half on gluten free and no progress at all. I guess it doesn't happen this quickly for everyone but many of the success stories say days! Of course we aren't doing casein free yet so that could have a large part in this. I don't know why DH wanted to try GF first - I would have preferred CF. Oh well.

I found a GF pie crust recipe that actually doesn't call for a zillion ingredients. It's 1 1/4 all purpose GF flour, 1/4 tsp salt, 1/3 c shortening, & 3-4 tbsp cold water! woo. As long as Crisco is GF I might be able to make this tonight (apple pie, that is). I'll have to look up Crisco.

Last night I made stuffed peppers the way I normally do which is GF anyway (and also CF since I don't mix meat & dairy anyway) and they were so yummy. Victor hasn't had any yet because I made them after his dinner and he can't have meat at school but he'll have them for dinner tonight - I am sure he will love them.

Lunch at school is getting more & more difficult. I keep giving him the same things. He got fish sticks (Ian's) again today and some corn & corn tortillas. He gets the same 4 lunches rotated all the time. ugh. I need to figure out more lunch ideas.

he's such a great hugger

I love my hugs from Victor. He loves to hug and I love to receive them. His hugs are getting so much better now too. His little hands will warp around your head completely or he'll take your face in his hands look at you and then hug. It's so cute & I am so thankful for them.

I made the Red Mill GF pancakes with the suggested apple compote for breakfast yesterday. score. Victor loved them.

Yesterday we went to each lunch at another family's house. I didn't bring any special food for Victor hoping that there would be something Victor could eat. I did have to ask the hostess about a chicken meat roll (which did turn out to have flour in it) but she had some chicken & lots of salad he could eat. I didn't go into it with them and only said that he might have a wheat intolerance.

In the evening, after a hotdog & some string beans for dinner, we went to a housewarming party and he did good there. They have a 4 year old boy who loves Victor so he kept taking his hand and leading him around the yard. It was super cute. They had lots of snacks little man munched on. All in all yesterday was a good day. Oh before lunch I took him to Tumbling Tykes - an indoor play area that some mom groups rent for 2 hours every now & then. He didn't play with the other kids but he seemed to have a good time.

His poop is back to normal!