OK, this is long, so I apologize (big time) in advance... :)
I posted a message on a sensory integration site earlier this week, asking if "Verbal Apraxia" can come back...Riley had it until about 3 yrs old, went away with lots of speech therapy, and for about the last month he's been "talking through his teeth". I know his jaw still works, he will open it to eat, but it's the oddest thing...literally talking through his teeth. Well, someone responded asking about is health OK, does he eat OK, and new meds, anything change a month ago, etc. etc.
I responded by saying health is always an issue (ha) and as far as eating, he eats only this: toast, dry cereal, waffles/pancakes, grilled cheese sandwiches, ice cream, oreos, pretzels (sometimes), spaghetti now ONLY after a CVS episode, occasionally bacon, drinks only water and milk...mostly milk. We make him drink water and pedialyte (pink only, he's got a thing for pink) for hydration issues. And because of extremely poor nutritional intake, I give him at least one pediasure drink per day. New meds (anti-migraine) about 4 months ago.
She responded (which DO appreciate) that he only eats gluten/casein foods, which I do understand is a problem for some. Suggested I try GF/CF to see if it'll make a difference. Here's my problem... Riley has EXTREME sensory issues when it comes to food...with sight smell and texture...he'll only eat spaghetti (reg. or thin). Mostaciolli/fettucini, etc. is OUT--it's not the 'right' shape! Toast, if cut in half instead of diagonal just won't get eaten....he's like extreme picky... he won't even sit at the table if Dad is eating fish... if on the OFF chance he's eating two things at once, he can't have them on the same plate. Now before anyone says anything, our oldest (17) was a "picky" eater...this is different...at least you could tell him it was "steak" whether it was pork, chicken, whatever, he'd eat it...he drank juice-Riley won't... People used to say to me "I wouldn't put up with that, he'll eat if he's hungry - give him something else" but they just don't understand...I've tried that, and he's gone more than a day and a half without eating because of it. On more than one occasion. He simply will not eat.
His GI specialist says he's doesn't have Celiac disease, and doesn't think that his 'bad habits' pose a problem in that aspect (Riley's IQ has dropped significantly in the last year too), aside from the obvious....I just asked him about it (again) on 6/2. So here's my question, I've heard enough from people that it hasn't benefited their kids, but is there some that it has? and if so, were they difficult to feed before-hand? I'd try it if I thought there was a chance, but Riley is specific to color and shape, (cheese sand. have to be made with "yellow" cheese, we've been out for 4 days, and he won't eat the provalone or swiss!) So for a kid with such severe eating habits, I can't figure out if it would work or not? Is this something all of you take into consideration when trying to decide?
Now here's my next issue, I can't remember who posted this, but in a message from earlier today on this site somebody (very smartly) mentioned how much worry you can get yourself into by researching "too much" on the internet. The same day this woman posted about the GF/CF diet, I recieved our consultation note from the GI, which reports "bilateral anterior cervical adenopathy" (swollen lymph nodes--he didn't / doesn't have a viral infection)...the next day, I recieved lab tests from when Riley was in the hospital 2 weeks ago, which reports "Microcytosis" (abnormal small red blood cells) and decreased lymphocytes along with several other abnormalities. So now I'm thinking, well, if his lymph nodes are swollen, maybe THAT'S the reason he's 'talking funny' Right? that might make sense, they're under his chin.....but then I get onto the internet, and start researching. There's this very lovely site called www.labtestsonline.com and I start plugging in the abnormal tests...this was Friday evening, as our doc is out till monday and I'm freaking out about the large lymph nodes....well now everything is "pointing" me to lymphoma, Hodgkin's or non-Hodgkins lymphoma....and I've literally worked myself into a complete panic. now this is 5 days ago, my doc still hasn't called me back, left another message today, the GI is out till the 27th, he never did send me the Abd. Ultrasound report....so because of the power of the internet.... I may very well be worried about nothing!!! and it's likely that's the case. So we really do have to be careful, knowledge IS power, but too much of it can send you over the edge...I'm proof.
So...in closing...I'd still appreciate any feedback on the GF/CF diet, although I don't think that has anything at all do with his talk, it never has before. (I was thinking it's because he has no more ST, as we were denied ESY). But, on the off chance that something I read makes something click for me, I think it might be better to at least investigate it.
I'd be curious to hear what others would do in my case though...take into consideration the lack of food he eats, and the fact that he suffers from migraines and Cyclic Vomiting Syndrome on TOP of severe sensory issues, and an "interim" dx of Autism....I really hate to mess with this kid anymore... I just need to 'know' that I'm doing the right thing.
Thanks from the bottom of my heart, I really am sorry for rambling, but it's been a hellish 5 days...I appreciate the ability to let it all out!
~Lesley
freaking out mom to
Jake 17 nt, Josh 12 nt, and Smiley Riley, 8, CVS and DSI (or Autism)
~~~~~~~~~~~~~
Stop the cycle!
www.cvsaonline.org
*smiles*
What you just described is my son Zachary to the T.... Zachary has severe food sensory issues too that also boil down to EVERYTHING from taste, smell, touch, and SIGHT.... if it looks off it's not eaten. I tried to "trick" zachary into eating Pb&J once... thinking that it doesn't look that different than a grilled cheese... I figured as long as I toasted the bread and made the PB&J thin He'd never know... I was wrong... he knew... didn't touch the thing with a 10 foot pole. Zach will only eat certain chicken nuggets, you can't cut his french toast sticks in half they have to be whole. Soooo I know all to well.... and I've also heard the "Just don't give him anything else... He'll eat if he's hungry." Ummm bullcrap. Zach has gone 2 days without eating without a blink of an eye. So what I should starve my kid just to have control??? That's stupid. And This is why I won't be dulving into the GF/CF diet. I deal with pretty much all the same things you are describing as far as the sensory issues go and food.... and to me it is not worth it and doesn't make sense. Untill Zachary has a wider range of a diet, I won't be trying to change anything. I just can't see how it would benifit him THAT much.... untill someone tells me it's a CURE *laughs* I'll still be giving Zach His one glass of milk a day, with his cereal bar in the morning, His grilled cheese with teddy grahams cookies and juice for lunch, and his 8 chicken nuggets and juice for dinner. (That quite literally is what he eats EVERY day) Sometimes there are fries mixed in there or crackers.... french toast sticks.... or on the very very very off chance pizza.
Oh bless you Sarah...you made my day!
(I forgot, Riley will eat pizza occasionally too...end piece only please!)
It's nice to know someone else out there has one of these "miracle of science" kids like mine!!! He's been eating ONLY toast (dry I might add) for the last 4 days...he finally broke down this afternoon and had a bowl of ice cream! I honestly don't know how he survives!!!!! On the other hand, it sure makes planning easy doesn't it? (Of course my other two eat, but opposite foods: one likes peanut butter the other likes jelly! And Riley just wants the bread!)
They ALL sure keep us on our toes!
I agree with you completely...until it's the miracle "cure" ... I can't see doing it. (and then that whole guilt part takes over and I start to wonder.....)
Thank you thank you THANK YOU...you confirmed what I was feeling!!
~Lesley
I agree. I could not change ds's diet enough to try this "miracle diet" that I've heard it called. I'm not saying it may not be great for some. I have heard some say it really made a diff in their child's behavior. And let's face it, milk really isn't that good for us from what I've researched unless it's raw. But you just have to do what you can and I know I couldn't try this, not yet at least. Good luck with everything I hope you get an answer soon to your concerns. I hope it turns out to be nothing serious like you are worried about.
Amber
I was browsing on my autism military listserve and came across this website. I haven't actually read all through it but I did see that they have some recipes and tips for the diet. They also have a list of items you can by at walmart and other grocery stores. Just in case it is helpful....oops,, its www.tacanow.comThank you all...I think I may have more fear of giving up milk than anyone
Erly: "My grandson' diet makes your son's diet seem like "gourmet eating" "
?!?!?! Holy cow! Ok, I feel a little better for me but TERRIBLE for you! Although...what I wouldn't give to see him eat a fruit!
Thanks Stephanie...it's actually a neat website, very well laid out and looks like I could spend some time there reading...but I looked at the list, and it makes me laugh...there may be a lot of different things to feed kids...but there were only 2 on the list that he actually eats now - and therefore could be 'switched'...he's not a chip kid or snack kid or a juice kid, he a toast kid...literally!!! ;) So even with reg. food it proves difficult.
I think I'll keep reading, (that site has some books I'm going to look at) but for now, I have to stick with what he DOES eat! (like erly's daughter..if it makes it to his mouth - we're good!) What scared me the most was that it said no more pediasure! Yikes...the only vitamins he gets! And he'll actually drink it (I have to make it "pink" - don't ask), but he'll drink it! And forget supplements, because the meds he does take 3x day have to be crushed into a small glass of milk....ok maybe that's naive, I'm sure they have liquid supps, but he needs 'em all!!!
THANK YOU SO MUCH for everyones replies....I do plan to quit looking at those dx websites, plus our ped finally called back today and we just need to watch the lymph nodes over the next couple weeks before doing anything else, and we check them again mid-July. Plus I'll be bringing him all the lab results tomorrow since the hospital never sent them on!?!?!
He was kind of funny "no no no --- don't look at those tests---let ME do that!"
I'll be praying that it's nothing....I think Riley's had his fill of dx for the year already.
Thanks again for your help.
~Lesley (AND Riley)