Posts Tagged ‘eating’


Original art courtesy of let petit enfant blog

Original art courtesy of le petit enfant blog

You know it’s never a good sign when the nurses at the pediatric hospital (a) know you and your child by both sight and name and (b) can tell when things aren’t good just by looking at you.  Yep, true story: one of the nurses actually commented to me the other day, “Mrs. Niksmom, you don’t look quite like your usual self.  Everything okay?  You’re usually, um, more, um polished.”  She stammered, embarrassed.  But she said it with such tender concern that I couldn’t possibly be offended.  Besides which, she’s right; it’s been a pretty rough go of things around here these past few months.

 “Oh, thanks T!” I laughed, “I thought I looked pretty good considering we haven’t slept through the night since about Christmas!”

Poor thing, her jaw dropped and her eyes went wide with surprise.  “Oh, well, you’re right then,” she smiled weakly, “you do look pretty good.  But still, not your usual self.”  I was touched by her concern.  She’s known us for a few years now and genuinely cares for Nik and our family.  We’re pretty lucky that way, I think.


 Things are still clear as mud around Nik’s ever increasing bouts of pain and wakefulness.  The allergy testing was all negative and the endocrinologist we saw this week was very up front in telling us he didn’t think the answer would be found in his realm of medicine —at least, not in the traditional sense.  Both doctors hinted quite broadly that we may have more luck exploring the area of food intolerance through elimination diet and the addition of some probiotic types of supports.  Actually, the allergist hinted, the endocrinologist flat out told us. 


We’ve decided to re-visit the whole issue of gluten and casein in Nik’s diet.  There does seem to have been a dramatic increase in the frequency and intensity of Nik’s episodic headache and pain activity since we’ve been letting him eat absolutely anything he wants.  Really, anything we offer him is more accurate.  Difficult to know for sure as the correlation doesn’t always equal direct cause and effect.  Still, here we are back to the GFCF diet and trying to find things Nik can or will eat with his textural challenges.  The learning curve is steep as Nik has decided to throw in a slight monkey wrench of not wanting to bite or chew anything again. (Insert heavy sigh here.)


Consequently, Nik’s getting more formula than we’d like.  That one change seems to be having a profound effect on his pain; it seems the more formula he gets, the worse the pain.  And the itching sensation is greatly intensified—at least it appears to be an itch; when it kicks in, Nik grabs at his cheeks, his eyebrows, his belly and his legs and pulls frantically at them —as if he could remove the offending or irritated part.  The challenge is that we don’t know what is causing the sensations so we don’t know how to eliminate the culprit.  His formula (which is a gluten-free prescription medical formula) does contain casein so we’re kind of stuck until we can find a replacement or until he decides to eat enough that we can wean him off the formula. 


We’ve added some enzymes to Nik’s diet which seem to minimize some of the gluten/casein effects but it’s not foolproof.  Nik can’t say for sure if he feels different after taking them; we can only judge by his behavior or lack of pain whether it’s an improvement.   


Meanwhile, we’ve been told by a few parents who have transitioned their children to GFCF diets —and seen marked improvements in sleep, gastric functioning and a lessening of self injurious behaviors —that there was a definite detox period of roughly ten to fourteen days in which the symptoms seemed to get worse before they got better.  Hearing that bit of information was a tremendous relief for me this week as we’ve seen a marked regression in some of Nik’s behaviors.  He’s gone back to some of the self-soothing things which he seemed to have outgrown —infant toys which light and play music, vibrational input in his mouth, mouthing absolutely everything (which he hasn’t done at all in months).  His perseverations, especially with doors, seem to be very prominent again in spite of all efforts to redirect his attention. 


Interesting to note though, Nik’s cognitive skills have not slipped one iota.  Yes, he’s very easily distracted —more so these past few days than ever before— but he’s still very engaged in his environment and willing to do his “work” in his PT and OT sessions.  Nik’s keenly interested in letters and numbers and figuring out how things work.  Even when it may look, to an outsider, like Nik is simply perseverating on the animals which go with his alphabet train station —repeatedly pressing the animal into the grooves to hear what it says, what color it is, what it likes to do —I can tell he is listening intently and taking in the information, storing it away for future reference. 


I have no idea where all of this will lead us.  We’re just taking it a step at a time —grateful for the good days, praying for the bad days and nights to become fewer and farther between, and so appreciative of all the support we receive from people around us —both in “real” life and our online extended family of friends.

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Hey now you’re an All Star get your game on, go play
Hey now you’re a Rock Star get the show on get paid
And all that glitters is gold
Only shooting stars break the mold

All Star by Smash Mouth



Well, as I wrote in my last post, just as the ice was thinning and we were on the verge of falling in, things have done an abrupt turn around.  I’m not naïve enough to think it’s permanent, but it’s NOW and I’ll take it for as long as it wants to last!

 For those of you that follow me on Twitter or Face Book, this is old news but it certainly bears repeating and celebrating all over again —Nik slept twelve hours last night! 


Now, to be completely honest it wasn’t all the way through; he did wake very briefly twice.  But he did make it for a full eight hours uninterrupted.  And the two times he did wake? He settled much quicker than he usually does.  The pain seemed just as intense but more fleeting.


I need to back up a bit and tell you about our visit to Nik’s beloved Doctor Mary yesterday afternoon.  Ostensibly, the visit was mostly for a weight check to see how he’s doing on putting back the weight he lost while fighting with his recent ileus.  He’s regained about ten ounces out of three and a half pounds lost.  Not bad considering it’s just as unhealthy for him to regain it too quickly.  Doctor Mary was pleased with that.  Still, he doesn’t have any reserves to withstand more losses.


Doctor Mary was not pleased with the way Nik looks overall, though.  She’s right; he looks better than he did ten days ago but he still doesn’t look like my robust, healthy, rambunctious little guy that she’s grown to love.  We discussed our thoughts and observations about the changing nature of Nik’s nocturnal waking and his possible food allergies.  So much hinges on the results of those blood allergy tests; we hope to have results within the week.


Nik has made such great progress in his ability to communicate about his pain; he can now sign “yes” if I ask if there’s a pain in his head or belly and he can also place my hand on the source of his pain.  Lately, in the middle of the night, he indicates the pain is in his head; he usually takes both of my hands and wraps them around his temples and forehead and squeezes tightly to indicate a desire for deep pressure.  Often, these episodes are then followed by painful and difficult gas.  Occasionally, during the day, they seem to be preceded by eating.


Doctor Mary voiced a concern about abdominal migraines which may or may not be allergy driven.  Until we have the test results it’s difficult to isolate a potential cause.  However, the nature and timing of the episodes do seem to indicate some sort of migraine activity.  It stands to reason that Nik is more subject to migraines as they run in families and both my mother and I get terrible migraines.


Once we know the results of the allergy tests, we will pursue that avenue with our neurologist, the wonderful Doctor G (not that one, this one).  I suspect it will be a bit before we hit on the right answers but it certainly feels like we are moving in the right direction now.


Meanwhile, Nik continues to flat out stupefy us with some of his remarkable gains in eating.  He is now consistently eating at least fifty percent of his daily nutrition by mouth and is learning the mechanics of chewing.  Right now he’s in the “munching” stage —where the jaw simply goes up and down and mashes the food as much as possible.  His desire for greater variety and textures in foods is difficult to keep up with as I try to balance safety from choking with his desire to stuff his cheeks like a little chipmunk and work things through for himself.


Last night’s dinner tipped the balance.  Nik had already eaten his dinner and was sitting at the table with us as we ate our salads and steak.  Nik always likes a taste of whatever is on our plates so I wasn’t surprised when he signed “more, please” as he looked longingly at the juicy sirloin on my plate.  Grudgingly, I sliced off a thick piece —about the size of my index finger— and sacrificed it to the eating machine Nik.


Much like the pancake incident, I expected Nik to simply lick and make feeble attempts to bite the piece of meat and then drop it on the floor for our two greedy cats to fight over.  Apparently —AGAIN— I was wrong; Nik stuffed the strip of steak into his mouth and closed his teeth around it.  He proceeded to bite off a large hunk of meat which he then spent a good ten to fifteen minutes munching and trying to figure out how to break it down to swallow.  Optimist that he is, Nik even asked for “more” while he sat chewing.


He never did quite figure out the actual chewing but he managed to create a nice mashed, pulpy mass which Niksdad had to extract before we let him down from the table.  Nik expressed his displeasure quite vociferously!  I think he would have been happy to sit there all night working on that one bit of meat.  I suspect it won’t be much longer before he figures it out.


In addition to his steak, Nik had quite a bit of mashed potatoes, turkey and carrots —leftovers from our dinner out on Thursday.  Most of his evening nutrition was eaten instead of pumped —though he did have a small bit of formula and water to make sure he was sufficiently full to make it through the night.  I think that made a big difference in his sleeping and in the lesser degree of his pain last night.


While we wait for the allergy results and wait to figure out the headache aspect of all of this, we’re trying to keep Nik on a mostly gluten and dairy free diet.  We don’t do this because it’s an alleged ”cure” for autism but simply because it seems to make his overall system more comfortable.  I don’t know if there’s an actual autism-gut connection (the evidence is inconclusive and motly anecdotal at this point); Nik’s gut issues pre-date his autism diagnosis by years as he was born with an intestinal malrotation and has a “short gut” resulting from corrective surgery.  We simply do what we do because it works for Nik.


Overall, I think I am seeing the gradual return of my happy-go-lucky, rascally little boy.  Each day is a bit more energetic and holds more laughter and music.  There are moments that make me worry but those are far fewer than even a week ago.  The fact that Nik awoke with songs and laughter today does wonders for my spirits, too.


That kid’s sure my all star!


Nik's chipmunk cheeks full of food

Nik's chipmunk cheeks full of food

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