A breakthrough

[Eeyorific]

This is very OT and very personal, but you all have already been there through so much with us already, I wanted to share this...

A few thigs actually, but they all involve Matthew.

Firstly, I have determined that Matthew can safely be out in public, but it *does* come down to how cafeful one is when removing hidden gluten. For him, nothing can be overlooked.

He and I spent most of Friday out together (gosh, we needed that more than I realized!) it had it's ups and downs, (which I'll get to in a sec) but just in regards to the gluten and big "D" that usually follows after we are out in public, we were able to avoid them both, and even go out on a "Mommy Monkey & Matthew Monkey" date to Chili's with complete success. It wasn't easy, and actually, I can see how easily something can slip past the SS teachers and other friends and family. We washed our hands very well before the food came, but he managed to grab the crayons even after that... being that he had the baby backs, we took no chances and washed again using his wipes.

Even after the meal, we were able to go to the mall (his choice to go up and down the "moving stairs") ride on some toys, and just have fun.

I wanted to hold off on any reports until today, but I am very happy to report that yesterday was a "good poop" day!

So as far was snack time at SS goes... we've decided to purchase a little container (comes with fork and spoon stored inside the top of lid) today he wants a plum cut up and eat with the fork/spoon from inside of the container. We will still stress great hand washing, but this way, we won't have to handle the food with his fingers. If this doesn't work, I'll *try* to find a way to get to him to help with better hand washing, if not.. then we'll be forced to omit snacks until we're home.

Now to the other ups and downs.. He did fairly well on the hour drive to the doctors on Friday, but as soon as we got out of the van, he started reacting to the change. Kept repeating he wanted to go home, would become frozen and had to be carried out of middle of street, high anxiety in the doctors office, kept saying he was scared and again wanted to go home. Once in the room with the doctor, he started throwing things, poundig tools on doctors knee. trying to knock things off of higher shelfs by throwing objects at them, tipping chairs over, standing on and jumping off of them.... etc.... in short, out of control!! I talked, stopped, disciplined, sat him on my lap... all to no avail THEN, I rememebered one thing I saw the OT do with him earlier on that week. Very naturally, she took him with his back torwards her chest, sat him on her lap, gave him a big cozy bear hug and rocked him back and forth. In pure desperation, I tried this... *bells rang and angels sang!!!* This worked so beautifully I tear up just typing it now. He almost became sedated, ok so normal words would be calm... but Matthew doesn't have a "calm" side, he's on fast forward, or he's asleep! Cut and Dry!! He sat there the entire rest of the time just letting me rock him, with his hands relaxed down at his side.
I was so thankful to the OT, that I called her before leaving the doctors to thank her! She also suggested that a weighted vest may help him.

Then, yesterday, when my Weekend childcare child came, Matthew started acting out again... so of course, I rocked him, once again... peace!
I know now it's a sensory thing for him, and for what ever reason, the rocking centers him. He had one of the best days yesterday here at the home that he's ever had! When he started feeling hyper, scared, or anxious.. he would come to me and ask me to rock him.

All of this amazes me, this is one of the biggest blessings I have ever received. Here's a little boy who has (the last couple of years especially) has seemed so "out of sorts" running around aimlessly, bumping into walls, people, etc.. can NOT sit still for a second, hurting self, hurting others, "getting into trouble" every second, and by a simple motion of rocking back and forth, has found his ground! Which allowed us to find him!

Trying to process it all last night just fills me with love and awe over him. He's such a strong little man! Who will go far, I truly believe he will go so far! He insists he'll grow up and be a "Daddy Baseball player" And you know, what... I believe that he will! *crying*

He will not let Celiac, Aspergers, chronic sinusitis (which he'll soon have to under go surgery), allergies to Dairy, corn, feathers, oak, all antibiotics, most medications including neosporin, other food sensitivities such as tomatos, etc.... get him down. No way! Not this little guy!

Maybe it's because of the Aspergrers, but he is the smartest 4 year old I have ever met. He knows more than most 6 year olds and older.

He and I have been through so much together, and I believe it's fair to say, we're not through the tough times just yet, but there's nowhere else I'd rather be!! I feel so very blessed to even know this boy.. but to be able to say, "He's my son" I am grateful, and more blessed than I can say!
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Kristie M.

"The truth of God's love is not that he allows bad things to happen....
it's his promise that he will be there with us when they do!"

[The Edifying Conscience]

I'm glad to hear that you and Matthew had a good time together. It must be a relief to know that he can be out in public without constant bathroom issues.

From this thread and the previous thread, I'm left wondering if you are the constant denominator. He is physically okay when he is with you, but when you are taken out of the formula he has issues. Matthew went sledding with his father, had a gluten-free snack, had a physical reaction (to an unknown source be it gluten or anxiety) and had to come home. He's had problems at church despite the fact that you have given his teachers specific instructions regarding his diet. Would Matthew have problems at church if you were in the room? Sure he very well could but it could also be from overstimulation.

If Matthew is as sensitive as it is believed then it's highly unlikely that a trip to Chili's would NOT cause problems. The likelihood of cross contamination is extremely high. The booths, tables, chairs, salt and pepper shakers are all sources of cross contamination not to mention the grill, knives, pans, etc. in the kitchen. I'm wondering if everything was exactly the same but his father was the one on the outing with him if he would have had a reaction.

I'm sorry to burst your bubble, but it occurs to me from the posts you've recently made that Matthew is physcially much healthier when he is in your care. It makes perfect sense. You're the one with him all day long. You're the one that soothes him. You're the one who makes everything in his world okay.

I know you want everyone to agree with you, but I don't think his physical reactions are as simple as you believe them to be. Colleen used a great analogy in the other thread but I can't remember the exact wording. So, I'll use one of mine. Just because something walks like a duck and quaks like a duck it doesn't mean it is a duck.

Really I do want the best for Matthew and you which is the reason I finally decided to post on the topic.

[mrsppmrxky]

((((Matthew))))) I am so glad that you both seem to have had a breakthrough!

Tec, what you say is possible that it is Mom that keeps him calm, but it could just as easily be that 'Mom' is more watchful of the touching and then fingers in mouth than others.

One thing that really, really stick out to me from your post is He will not let Celiac, Aspergers, chronic sinusitis (which he'll soon have to under go surgery), allergies to Dairy, corn, feathers, oak, all antibiotics, most medications including neosporin, other food sensitivities such as tomatos, etc.... get him down. No way! Not this little guy!


neosporin contains SULFA

Tomatoes are one of the highest amounts of SALICYLATE containing veggies.

When MrP has too much of the salicylates in his meal, it causes him to have a panic attack and difficulty breathing.

You might want to give this some thought. Citrus, berries, and most other fruits are very high in salicylates.

Pears and bananas are about the only fruit that MrP can have now.

If you think this is a possibility, I will be happy to share notes with you on what I have been finding.
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[aklap]

I think TEC's theory is a pretty good one. To me, it seems to make a lot sense. If Mom is with Matthew constantly for 12+ hrs a day - that's what Matthew is accustom to - that's Matthew's world. Considering his reaction to unfamiliar things [being outside of Matthew's world], it would stand to reason that the absence of Mom could trigger a reaction of some sort.

You intelligence comment is interesting. Bill Gates [Microsoft] when he was on the stand testifying he was constantly rocking back and forth [which is an autistic symptom]. Does the rocking motion instill some type of comfort or reduce stress in those individuals??

http://www.tuaw.com/2006/03/24/the-history-of-microsoft/

http://digg.com/tech_news/Video:_Bill_Gates_being_grilled_by_US_anti-trust_lawyers
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[isto]

Thank you so much for your beautiful words! I got teary reading them. Our children are such a blessing - even when times are trying!

[Eeyorific]

Hey all, I tried more than once to reply yesterday, but Sunday is our only day as a family together, I kept getting pulled away from the computer.
Before things got too busy here, I wanted to thank everyone for your replies. TEC, you brought up some very valid points, and a lot of truth to your and Connie's theory.

Also, due to my first lost post (on the other thread) there are also some missing facts. Once my morning settles down, I will try to clear that up.

Thank you for caring for my little guy! With him, one can never rule out anything, and anything is possible!!

Got to get ready to walk dd to bus stop. I'll be back.
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Kristie M.

"The truth of God's love is not that he allows bad things to happen....
it's his promise that he will be there with us when they do!"

[Eeyorific]

*disclaimer- I have a lot to cover, in a very short period of time, so please do not take anything as argumentative or edgy. I'm simply trying to get everything typed up before life needs me again.*

Things I lost from post that didn't get posted.....

I started out with... it seems like every time we go out in public he reacts. I think in the post that did send it read... every. Sorry about that...

other things that were over looked... was when he spends night with Ashton (the friend who took him bowling) He ususally does fine (90% of the time), he has no reaction at all. At the time, I couldn't understand why going out bowling would have been any different. I later found out that she did not follow my very strict directions of washing his hands before any food was given, or to even try not to give him the food I sent. She simply gave the boys the food when they were done bowling. Gosh, with all of the hidden gluten, it's easy to understand why the next day was so hard for him. I did not have this information then.
I am disappointed in my friend for a couple of reasons. Her son is almost as sensitive to peanuts as Matthew is to gluten. She is much more careful when my son is at her house, going out in public shouldn't have been any different. They had a few friends with them which allowed her to become more distracted. I will not make the same mistake again.

When Matthew goes with his BT (Behavioral Therapist) like he is right now. let me explain.... she picks him up and takes him to her office, with clear instructions of hand washing, keeping hands out of mouth, and no food! I don't even send any food, for he's with her for 2 hours.
But, TEC and Connie... your theories hold very true here in some form... going with her just now, he became very anxious.. and guess what... hands right up to the mouth!!! She can't hold his hands down to keep him from doing it, so she does what she can.. She invites him to play car games, hold his Cubbie (teddy bear), distract him, have him play with his toys, tell him over and over again, "hands out of mouth" He then will chew on his hood. Before leaving her office, she will wash his hands herself, and do the same thing on the ride home as she does to her office. Now, other adults work with other kids, and some times at the same time, but he is the only child under her care during their session.
So far, no accidents.

He is home with me most of the time, and true, he doesn't get out much.. BT, Sunday school, Wednesday night Church, trips with dad to store so mom can breath , sisters school events, and spending time with Ashton and his mom.

It's fair to say that nearly every Sunday, he'll have the "D". BUT, Wednesday, he almost never does. All of this has me really dissecting each and every situation.. it's my best guess that there is a weak link in SS class... that something is being over looked, some direction isn't being followed. And yesterday's results further my suspicion of that.. instead of sending a bag of puffins (honey rice.. for those who are new to GF.. honey rice is the ONLY GF puffins cereal.) or a piece of fruit for him to hold with his hands... I cut his plum up and put it in a container with a fork for him to use. I also played the part of mean mommy, and instead of only reminding the lead teacher of the importance of him keeping his hands out of his mouth. I walked into the room and spoke directly to every teacher in the room! For the first Sunday in many many weeks/months he did not have any tummy troubles. Our family was able to enjoy the entire afternoon/evening together without any yucky runs to the bathroom!

Oh.. one minor misunderstanding I thought worth clearing up... Last week, we went to Church, he had his snack at church, we came home, washed, at lunch, then he, dad, and sis went sledding without any food being involved. It's my belief, that his "reaction" was from SS.

ok, where was I... So you see, he is able to be away from me and not have any GI reactions.. but... this is where I really have to agree with TEC, Connie and Mrs. P. Clearly, he is much calmer when he's with me. But even with me, leaving the house is really hard for him.. so many things set him off and high anxiety is a huge problem for him! Which is why I'm so happy that we found rocking helps center him and give him that peace he needs! His father and I are adamantly against psychotic drugs. But we'd be lying if we said there hasn't been more than one anxiety breakdown that could have had a very dangerous outcome if we hadn't prepared for it ahead of time. Case in point.... (forgive me if this is a repeat) but on his B-day, we took him mini-golfing, while crossing a bridge, in the fast lane, going about 50 mph.. Ashton got sick, and Matthew freaked, undid his seat belt and headed for the door, had we not had the child lock inforced, he would have landed on the bridge! very very scary!!! I had to jump in the back seat and calm him the best I could til dad stopped. This is why we are putting up with all of these blasted Evals... to get him the proper help he needs! It's my thought that if his GI would be effected, it clearly would have come out from this.. but no GI reaction happened at all that day, night or next day. There are more examples of this being true, but it's not important. Also, it's not to say that it will always be this way, meaning, he very well can start throwing up, or having big "D", break out with rash, etc... I'm simply saying, we're not seeing that now. Any moment, that can change, so I am careful not to quickly rule things out without giving them careful thought.

TEC, one very intersting point in your post, that had me thinking hard was...

[The Edifying Conscience]

With all due respect to you, if he was/is as sensitive to gluten as you claim him to be I find it highly unlikely that he had a "safe" meal at Chili's. While you might not have taken your eyes off of your son, you weren't able to watch the food prep or the gluten-free uneducated restaurant staff.

Clearly you want to believe that your kid's problem is gluten related. So be it. I'm signing off on this exceedingly frustrating topic.
Best of luck.

[ostrich]

Hmm...

Not to divert the topic, but what's your husband's stance on all this? You don't seem to put him in the picture very often.
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Ostrich :>--O==={

Time falls away, but these small hours
These little wonders still remain

[Eeyorific]

[forinajoy]

Kristie, please don't misunderstand my previous post, I didn't mean it couldn't be gluten, I was just putting out the possibility that maybe it was stress, but you said your "Mommy radar and gut reaction" was that it was gluten. I believe that these "Mommy gut reactions" are usually right and should not be ignored I admire your attentiveness to detail in watching for cc. I'm sure that with time and education, Matthew will be able to learn the preventions needed to avoid cc. And this in turn will make things easier. I am so glad that you found a way to help Matthew when he is having a meltdown. And isn't it neat that he recognized how much it helped him? These kids are amazing.
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Connie, mom to Ina, 14 y/o with CD

[cruelshoes]

I am not trying to add any tension to this thread with this post. I cannot begin to understand what it's like to have a child on the spectrum.

I am a mom with mommy radar too. But I am also a believer in numbers. It would seem that an antibody test would be in order to help figure out if gluten is really the culprit.

Please understand - I am not trying to be pushy. I am just talking about how I approach problems.
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-Colleen

Where are we going, and what am I doing in this handcart?

[Eeyorific]

[ostrich]

I think the test is a good idea. It might hurt him again, but it'll help in the long run, even if he doesn't understand that initially. Perhaps it can be done when he has to get blood drawn for something else.
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Ostrich :>--O==={

Time falls away, but these small hours
These little wonders still remain

[Eeyorific]