UPDATED! Think 2-year-old may be on the Spectrum but too scared to find out :( - Page 5

[APToddlerMama]

Originally Posted by JFTB1177 

I asked her about the GFCF diet and she said the same as you guys, helps some and not others. She said to try it and if I don't see a difference in a few weeks to stop- do you guys agree with that? Thanks for all of the advice and info about the GFCF diet!!

Wheat/gluten can take a long time to clear.  I think the typical suggestion is to pull it for at least six months.  Some say 12.  Believe me...it is way easier to pull it on a kid who doesn't totally realize what you are subbing on him than one who does realize it.  You may want to look into have him tested for food allergies as well.  We did this with DS and although he did not have a wheat or dairy allergy (but clearly does have an intolerance to them), he did have a couple others that we did not know about at all.  You may want to post on the allergies forum for more GFCF info.  For instance, something like 80% of kids who react to dairy also react to soy, so you would likely want to pull soy too.  A really good book we read was called Feast Without Yeast by Dr. Bruce Semon.  He has a son with autism and is himself a psychiatrist who has a regular practice, but also offers patients a more holistic natural approach to treatment as well.  The book is on Amazon.  He has a list of foods he suggests pulling in addition to GFCF.  We have noticed that DS reacts to many of those foods even more than gluten, although dairy turns him into a total terror immediately.  If you want me to pm the food avoidance lists to you, let me know and I can do that, although it is helpful to read his explanations and the book also has tons of recipes, though many are not GFCF which is the third step of four in how he removes foods.  Personally, we just did the GFCF and all his first two lists right away.   Also, in terms of sticking with the diet even when you don't think it is helping....individual kids have different food reactions.  We had been GFCF plus all food allergy positive foods free for months but still knew something was not quite right when we figured out DS reacted to sunflower oil which is in everything.  Pulling that made a huge huge huge difference.  The diet thing can be tricky, but many have great results, so I'd encourage you to stick with it for quite some time even if it doesn't seem to be helping immediately.  It is definitely overwhelming the first month or so.  I cried in the grocery store... But, a few weeks into it, we were pros and cooking/shopping were as easy as ever. 

[alestrange]

He talks now, but that's what got the whole process started. He only had about 4 words at 20 months, so we had him evaluated by our regional center. From there, they had SLP, OT, PT and the whole lot of them out to work with our son. We started him on Baby Signing Time DVD's and language just exploded. He's now 25 months and he has well over 100 words and is putting 2 and 3 words together. As far as the other markers, he SOMETIMES walks on his toes, but not all the time, he doesn't spin, has fantastic eye contact, no twirling or hand flapping. At the time of the pysch's eval, he was doing the headbanging when he got ticked or frustrated so she categorized that as self-stimulatory behavior. She put that he didn't engage in joint attention, which he does - there were just a lot of things off about her report. She marked his health/safety habits down since he doesn't yet tell us when he has to go the bathroom - he's TWO! The developmental ped said sure, he has quirks, but not autistic. As I said, either way, we're keeping him in the specialized school, because I don't know if those quirks may manifest into something different that is an autistic marker and the early intervention has been fantastic with helping our son with transitions and they're currently working on the social anxiety that he deals with. I can't say enough about the EI helping our son, autistic or not, quirky or not - it's a fantastic program and they can certainly help kids that have any type of developmental delay -speech, autism, any ASD, or just the quirks! Since no one seems to have a definitive answer on our son, we'll keep doing what we feel is best!

Good luck with the GFCF diet! My girlfriend said her son was always constipated and just had intestinal issues - so she gave it a shot and she eliminated all caseine but not ALL gluten - that she just watches the intake. As everyone else has said, seems to work for some - not so for others. We went the route of no food dyes for now, which is a much easier change - especially since GFCF didn't do anything for my son =(

[JFTB1177]

Just wanted to update and let you guys know my son's official eval at Kennedy Krieger is at the end of Nov!!!

[beachcomber]

Yay!

[JFTB1177]

Just wanted to update once again (and thanks Beachcomber!) :)

My son had his 2nd assessment today through EI since he is getting close to his 3rd birthday (he'll be 3 in March). He's been getting OT once a week, speech once a week, and goes to a playgroup for all kinds of SN children (through EI) once a week. DH and I also go to Hanen "More Than Words" classes about 2x a month... needless to say we've been busy! Like I said in a previous post our official eval at Hopkins is at the end of Nov.

Today's assessment was done by his OT, ST, and the early ed teacher that comes to our house. He had one or two meltdowns but did MUCH better than he did at his first assessment, which was at the beginning of Aug. He scored 6 months ahead of where he scored during his last assessment (in cognitive) so that was exciting! I really give all the credit to EI, I can't stress enough just how much they have helped him. I am so glad I didn't keep my head in the sand and ignore DS's issues. He still has a long way to go but the progress has given me a lot of hope! :)

Next week someone is coming to talk about transition at age 3. Dh and I already sat in on a CAPP (Comprehensive Autism Preschool Program, free thru the state like PEP) class and were REALLY impressed. They do ABA 4 hours every day, and 2 hours of "regular" preschool stuff. It's a 1:1 ratio and they have all sorts of sensory stuff in each room (the elementary school where the classes are held have a whole section of the school just for this program, 3 or 4 classrooms), like sensory balls, trampolines, and swings etc. They also have wagons and tricycles. And they also potty train (when the child is ready)!!! Dh and I will also be sitting in on 3 different PEP classes at the end of this month, but I def think the CAPP class will be the best fit.

Thank you so much everyone for all of the support and honesty!!! I will keep you updated. And for anyone who suspects their child may have ASD please don't do nothing!! The therapies work! :))

ETA: I also wanted to add that all the sensory stuff the OT has been doing and been teaching us to do has made a huge difference too!! DS is still having runny poops (we haven't started the gfcf diet as of yet although I stopped giving him milk and wheat products. I know the diet is way more restrictive than that but we will def be doing it soon in the near future) so we are going to be taking him to a ped GI specialist at Children's here in DC that is supposed to be really good.

Edited by JFTB1177 - 10/7/11 at 2:11pm

[JFTB1177]

This will probably be my last update for this thread, but wanted to let anyone know who comes across this thread that my son was officially diagnosed with autism this week at Kennedy Krieger.

[JFTB1177]

I know it's been awhile since I've been here but I want to update for any newbie that comes across this thread.

My DS turned 3 yesterday and will be starting the CAPP preschool program (6 hrs a day, 5 days a week) on Monday!! He wasn't doing too well (meltdowns etc) at the Infants & Toddlers (EI) autism class that he was going to 3x a week (90 minute classes) so a month ago they took away his Tuesdays and Thursdays and was just going Wednesdays. Wed's they were in the big "OT" room and he did MUCH better. We also started at CSAAC (http://www.csaac.org/supportcsaac.htm), which is private therapy but EI footed the bill (yeay!). I cannot say enough about CSAAC... not to knock EI because they definitely helped a LOT, but he progressed more in the month he was with CSAAC than he did in the 6 months he was getting services with EI (3 of those he was in the EI autism class). He is responding so well to ABA, it is unreal!! I know ABA doesn't work for all kids (as in one of my good friends whose son with autism learns better in a natural environment) but it is working wonders for my boy. He is a whiz at puzzles, matching, his language has exploded in the last month... he's not talking conversationally yet but is repeating EVERYTHING and will now use "up!" if he wants to be picked up, although not every single time. He has started leading me to his diapers when he wants to be changed (although this doesn't happen all the time and is only when it's a poop). When we were leaving for an appt last week he walked over to my mom and gave her an UNPROMPTED hug (she was at my house to watch my 13 month old)!!!!! We still have a ways to go but I am VERY hopeful about his future!! He will be getting 4 hours of ABA in his preschool class a day. Only thing I'm nervous about is him getting on the bus by himself (well there is an aide but you kwim), he's so young you know?

[Eloisa]

I have just read though your thread for the first time, and just wanted to come in and say how awesome you are for following your gut and doing what was best for you son. I'm currently awaiting our first appointment to have DS (3) assessed, and am constantly second guessing myself for many of the reasons you spoke of.
Much love to you on your journey x

[JFTB1177]

Originally Posted by Eloisa 

I have just read though your thread for the first time, and just wanted to come in and say how awesome you are for following your gut and doing what was best for you son. I'm currently awaiting our first appointment to have DS (3) assessed, and am constantly second guessing myself for many of the reasons you spoke of.
Much love to you on your journey x

Thanks Eloisa!! GL with your son's assessment, when is it?

[Eloisa]

The first appointment is next Thursday. I'm rather nervous at this point!

[puzzlepeace]

Originally Posted by JFTB1177 

I know it's been awhile since I've been here but I want to update for any newbie that comes across this thread.

My DS turned 3 yesterday and will be starting the CAPP preschool program (6 hrs a day, 5 days a week) on Monday!! He wasn't doing too well (meltdowns etc) at the Infants & Toddlers (EI) autism class that he was going to 3x a week (90 minute classes) so a month ago they took away his Tuesdays and Thursdays and was just going Wednesdays. Wed's they were in the big "OT" room and he did MUCH better. We also started at CSAAC (http://www.csaac.org/supportcsaac.htm), which is private therapy but EI footed the bill (yeay!). I cannot say enough about CSAAC... not to knock EI because they definitely helped a LOT, but he progressed more in the month he was with CSAAC than he did in the 6 months he was getting services with EI (3 of those he was in the EI autism class). He is responding so well to ABA, it is unreal!! I know ABA doesn't work for all kids (as in one of my good friends whose son with autism learns better in a natural environment) but it is working wonders for my boy. He is a whiz at puzzles, matching, his language has exploded in the last month... he's not talking conversationally yet but is repeating EVERYTHING and will now use "up!" if he wants to be picked up, although not every single time. He has started leading me to his diapers when he wants to be changed (although this doesn't happen all the time and is only when it's a poop). When we were leaving for an appt last week he walked over to my mom and gave her an UNPROMPTED hug (she was at my house to watch my 13 month old)!!!!! We still have a ways to go but I am VERY hopeful about his future!! He will be getting 4 hours of ABA in his preschool class a day. Only thing I'm nervous about is him getting on the bus by himself (well there is an aide but you kwim), he's so young you know?

What an awesome update!!! I just came across your thread and was reading through. So cool to see the progress. And happy birthday to your newly 3 year old!!!
 

[JFTB1177]

GL Eloise! I know easier said than done but try not to be too nervous... one of the best things someone said to me was on this board- "autism is not a death sentence." It really isn't. My asd kiddo is SO full of life, affectionate, happy etc. I'm so glad we got the dx because without it he wouldn't be getting all the services and help that are majorly increasing his skills and reducing his sensory needs!

Thanks so much Puzzlepeace!! :) He had an amazing birthday party... just last year he was crying hysterically when we sang happy birthday, wouldn't let anyone get near him, and seemed absolutely miserable. THIS year's birthday party (March 11th) was the polar opposite (and we had it at a bounce place omg!)- he was smiling from ear to ear, going up to people, enjoying his cupcake and pizza, WOW!!!!!!!!! What a difference!!!!!!! I don't know if the difference is from him getting older or the services he has gotten or a combo of both, but wow wow wow!!!!!!