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Archive for the ‘allergies’ Category

Yesterday was an intense day. Too many appointments, the prospect of lots of lab work for Nik, and the question mark about whether or not he did, in fact, have a rotavirus. You know, just another ordinary day in our lives.

We had a great appointment with a new doctor, an allergist, to help us make some headway into figuring out the causes of Nik’s ongoing pains and recent skin rashes. We left feeling really good —despite a long list of allergens to be tested. The doctor was personable and Nik seemed to take to him. Always a bonus.

The day took a nosedive from there.

The appointment with the pediatrician, to discuss Nik’s recent apparent illness and whether to culture for a rotavirus, ended up not happening. The nurse that had scheduled the appointment had not confirmed it in the computer. When we arrived, we were told that the second doctor in the office had a family emergency; that left Nik’s doctor, Doctor Mary, holding the bag for all the appointments for the day. Since Nik seemed to be so much better than he had been even twenty four hours prior, we opted not to wait in the hopes she could see us.

We headed over to the lab to get the blood drawn for Nik’s battery of tests. After a lengthy wait, we were greeted by a seemingly disorganized lab tech. As soon as she realized the tests were for Nik, she balked. Whether it was because it was so close to the end of her day and she didn’t’ feel like dealing with a screaming child or whether it was simply because she felt like it, she told me she couldn’t do the tests because it would require more blood than she could take from a child at one time. I’ve since discovered that wasn’t true but, whatever.

So, a lengthy day spent traveling up and down the middle portion of our state, bouncing from appointment to appointment —it made us tired and cranky. By the time we got home, we decided to go out to dinner. As luck would have it, both Nik and I had reactions to some food. Neither was too bad, but it was enough to make us both uncomfortable.

I woke this morning feeling pretty tired and crabby; a state I must confess lingered until about lunchtime. I’ve been sitting at my computer, willing myself to find words to write —and coming up dry. I’ve also been listening to my son singing and playing happily in the loft. For some reason, it put me in mind of this post from Kristen. I realized I could choose to be angry and resentful about all the energy expended yesterday —seemingly for naught, or I could choose to find something good to hold onto.  I chose the latter —in the form of a cookie.

Yes, a cookie. And french fries, too.

Since we’ve been limiting Nik’s exposure to potential allergy-inducing foods, the allergist warned us that it might actually skew the testing. He actually suggested that we feed Nik some of the foods we’ve come to suspect —especially wheat —in order to trigger an immune response. So, with that in mind —and thinking we were getting blood drawn in the afternoon —I bought Nik a giant chocolate chip cookie. Okay, let’s be honest; it was as much for me as it was for him.  But we shared that cookie in the Starbuck’s parking lot like it was manna from heaven.

It was Nik’s first-ever chocolate chip cookie. Yeah, okay; big deal, right? Right. The cookie was fairly chewy and soft so I was able to mash up bits and pieces and slip them into Nik’s mouth. Normally, he would either gag or reach in to remove anything larger than a single crumb, but this cookie was sweet and gooey and melted quickly. And he adored it!  By the time we were through, Nik had consumed nearly a quarter of the cookie; much of that he even placed in his own mouth —another first —instead of licking it off of my fingers!

While we’ve been trying to mitigate all these weird reactions to foods, we’ve had to severely limit Nik’s oral intake; it’s just so challenging to find things he will eat that are the right consistency and texture that are not potential allergens. We’ve been more than a little concerned that he might regress in his desire or ability to eat by mouth.  So, after the allergist told us to “stimulate his system,” we decided to really go for it.

When we went out to dinner last night, we let Nik have some of a buttered roll, a lick of my patty melt —he even tolerated a very small crumble of beef on a fork without gagging—and, of course, french fries. Nik’s favorite thing to do with fries is to dip them in either Daddy’s salad dressing (usually honey mustard) or in ketchup.  His favorite thing to do last night? Show off his ever lengthening reach and lightning quick food-snatching skills. At one point, I wasn’t fast enough to stop him; Nik helped himself to a fistful of fries off the plate.  The boy’s hands are definitely getting bigger, too!

Nik did have a bit of a reaction to all those foods and was a cranky, uncomfortable boy by the time we got home —clawing at his ear, pulling his hair; we gave him a quarter dose of Atarax at bed time and another half dose five hours later. He slept through the night and has had relatively few side effects today. The allergist gave us a prescription for Allegra to see if that will help with the symptoms without causing the neurological side effects. We will start that after the blood draw on Monday.

Meanwhile, we’ll be sharing cookies —with our glasses half full.

cookie_mouse

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Thank you to all of you who weighed in on my last post about our dilemma. When I wrote that post, we had not yet hit the proverbial wall; I didn’t know the behaviors would get even worse. The first night of the medication —only two doses given at full strength —left Nik in a lethargic zombie-like state the next day; the second night —doses of only half strength— accomplished the aim of uninterrupted sleep and a subsiding of the allergy symptoms but left Nik in an even worse state of hypersensitivity and extreme agitation.

We opted to forgo the medication and try to mitigate any allergic response as much as possible using some homeopathic remedies to relieve the symptoms. Now, say what you will about homeopathy —we are all entitled to our opinions —but I have personally experienced times that it works both for me and for Nik. I certainly don’t believe homeopathy —or anything else for that matter— will “cure” my son’s autism (or anything else). What I have seen, though, is that it can ameliorate some specific symptoms of physiological responses and make things a bit better —more manageable, if you will. Such has been the case with the homeopathic antihistamine we’ve used. It’s not perfect and it doesn’t solve the problem by any stretch —Nik’s still showing signs of allergy or extreme sensitivity— but it makes Nik more comfortable and less inclined to claw at his head. And that’s all good.

Anyway, we decided Nik in the aftermath of the Atarax was too close to our experience of Nik in the weaning stages with Lamictal. (You may recall that was an ugly time for us.) Nik continues to show us that he does not handle certain types of medications well at all. No amount of titration or even minimal use will work. He has had adverse reactions to four different seizure meds, paradoxical responses to another anti anxiety med plus Benadryl, and now this. At some point, we have to respect the messages he’s giving us. That point is now.

Last night, Friday, was our second night without the Atarax. Nik slept okay —not as long as I’d have liked but soundly none the less. This morning, the light is back in his eyes and the music in his voice. As I write in the loft, I can hear Nik playing happily in the family room below; he’s actively engaging with his electronic toys, singing along in time with the music and “talking” back when they make the letter sounds. “Huh” he says when the alphabet train says “This is the letter H.” Instant recall where two days ago there was confusion and extreme frustration at his inability to retrieve the information in his brain.

I witnessed the same thing yesterday in his OT session; he couldn’t recall simple things that he’s long ago mastered —this one was matching colors in a sorting activity —and he got so frustrated that he just fell apart. Yet, today he’s able to respond to a disembodied voice from his toy asking him “Where is the letter P?” He recognizes that he has to wait a moment before pressing the right button and he’s actively looking at the letters to find the right one. He even says “guh” for “good” when he knows he’s pressed the right button. He is aware in ways he hasn’t been for a few days.

As for me, well, I suppose I’ll just learn to adjust and sleep less. Meanwhile, the payoff of seeing my son back to his normal rascally self is enough to keep me going. Our quest for information and answers continues.

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In the history of unpalatable decisions, there is (are?) a host of fine examples: Sophie’s Choice, Scylla and Charybdis and Morton’s Fork to name just a few. To this panoply of dilemmas we can now add “Nik’s Nightmare.”

Here it is:

Is it better to have your child wake screaming in pain in the middle of the night each night —ostensibly from as yet unproven or undiagnosed food allergies —and be relatively happy, energetic and otherwise fully functional during the day? You, yourself, on the other hand are in a constant state of siege mentality from lack of sleep and worry that there’s something you might be missing.

OR

Would you rather have your child sleep soundly in a drug-induced state which does, in fact, relieve all symptoms of the apparent food allergy? This same medication makes your child lethargic, drowsy and hyper-irritable while also dulling much of his cognitive functioning during waking hours. The result is a day full of constant struggle and frustration for both you and your child.

Which would you choose and why? Really, I want to know.

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I’m trying hard lately to see the glass half full instead of half empty. But when my tank of sleep is running on fumes, it gets difficult to see past the haze and fog of sleeplessness and worry. In spite of getting some decent sleep last night —courtesy of a new prescription we tried with Nik which knocked him on his little hiney —I still feel exhausted and headachy today. I want a snow day off —a holiday from worry and constant watchfulness —just one day would be fine.

I’ve procrastinated too long to give the entire back story. Suffice to say, Nik is starting to show signs of developing a significant food allergy to legumes. You know — peanuts, green beans, lentils, peas, chick peas (garbanzos), guar, soy —lots of healthy sources of fiber and protein for a little guy who doesn’t yet actually bite and chew food. We’ve stopped giving him anything but fresh, plain, organic food so far in an effort to mitigate the rashes and gastric distress that seem to have popped up out of nowhere. Except, the odd thing is we think maybe they’ve been there all along and we didn’t know it. The clawing at an ear that’s not infected; the rubbing of his head and poking at his eyes in spite of being on medication to stop migraines. The gastric distress which causes him to wake screaming in the middle of the night every night —in spite of the fact that his reflux is well under control.

Nik’s modus operandi has always been to give us physical clues to follow. If we are too slow to pick up on them, his body always seems to know just when to kick it up a notch or two to really get our attention. At least, it sure seems that way every time it happens. We’ve gotten pretty good about paying attention and trying to decipher his messages before they reach a crisis stage. We don’t really have any choice; the one time we didn’t pick up on his cues for so long we almost lost him.

I feel like I am teetering on the razor’s edge all the time. Nik shows so many signs of being “normal and healthy” but the possibility of slipping off, of developing a major medical issue, is always just a hair’s breadth away. If I relax my guard, well…I just can’t. It’s the thing that keeps me so in tune to his every shiver and sigh —even in the twilight of sleep. Some people hear “food allergies” and think “What’s the big deal? Just don’t give him those foods.” In Nik’s case it’s not that simple right now.

This new development, if it really is an allergy —and wouldn’t it be nice to finally have a freaking answer— has provided a real conundrum. Where Nik is totally tube dependent right now, we must continue to give him formula. In an effort to help relieve some of Nik’s symptoms, we’ve recently stopped feeding him anything by mouth. But his formula contains soybean oil, and green beans, and pea protein. Oh, and guar (also a legume) in the form of the added fiber (think Benefiber. Yep, legume based.). Even with the absence of food —and now that we are hyper vigilant in watching for signs —we can see the changes in Nik immediately after he gets a tube feeding. The red ears, the runny nose, the clawing at his ear, tugging at his clothing —it all ramps up again. It’s the worst after dinner —his largest meal of the day.

Common belief holds that someone allergic to soy should be able to handle soy oil because the most of the sixteen different proteins are eliminated in the processing. Um, someone needs to explain that to Nik’s poor little body. He had a terrible reaction to one small cheez-it cracker yesterday at play group. (N.B. Nik has not exhibited any signs of allergic reactions to wheat or dairy.) The offending ingredient? Soybean oil.

The immediate reaction was small in and of itself but it tipped the balance just enough that Nik was miserable for the rest of the day —the screaming, crying, clawing at his ear, hitting himself in the head which have become so disturbingly familiar to us.

We saw the pediatrician yesterday to rule out an ear infection; we were all certain it wasn’t that but had to know before we could proceed down other avenues. We now have a referral to an allergist and a new prescription antihistamine, Atarax. Nik can’t take Benadryl because he has a paradox response; he’s up for hours and it gives him very little relief. Atarax is actually used for anti-anxiety as well and works differently than Benadryl. Where Benadryl works on peripheral histamine receptors (think skin and extremities), the Atarax binds to receptors within the GI and respiratory tracts —working more from the inside out than the outside in. Of course, that also means it has a bit stronger effect on the whole nervous system.

We gave Nik a dose just before dinner. I have to say, it did do wonders to keep the allergic response at bay. But poor Nik conked out at the dinner table and had to be poured into his pajamas and bed! He woke, briefly, about six and a half hours later —but he woke happy and pain-free! We gave him another dose —and a quiet toy to play with —and another half hour later he was out cold for the rest of the night. The drawback is that it knocks him out cold and has some lingering systemic effects. Today, he is off-balance and very subdued. He feels funny and knows it; he’s been very clingy and easily upset. Not a good long-term solution; we fought too hard to get him off of medications that affect him this way to go back. Oh, and let’s not forget the potential effects of central nervous system depressants on respiration; not a good fit for a child with a chronic lung disease.

So, here we sit, betwixt and between. We have theories but not enough evidence, some evidence that doesn’t fit, and a little boy who keeps trying to tell us what he needs but cannot make himself understood.

I think I understand how he feels.

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In perusing some of my favorite blogs this morning, I read a terrific post on Autism Vox about the newly raised question of the role of melamine in our food supply as a potential cause of autism.

I love that Kristina finds these fabulous articles and interviews and digests them into bits and pieces that people like me can digest (sorry, bad pun since I am getting ready to talk about food allergies! Oops…). Her wealth of knowledge and resources (and resourcefulness!) inspires me very much. In her posts, K always includes a link back to the complete article/s she references.

In today’s post, she mentioned a study highlighted in today’s Washington Post which refutes the possible connection between the conditions of autism and celiac disease. Since I have some food intolerance to both gluten and dairy, as do both of my siblings, and now my son with autism has shown seeming evidence of the same, I headed over here to check it out.

Now, let me state up front that I do not purport to know the cause of my own child’s autism let alone the root cause of the whole darned spectrum. Nor do I think we are anywhere near finding a “cure” despite a wealth of therapies and alternative measures one might choose to potentially reduce the manifestations of the disorder. I am not interested in ranting commentary on either side of the Cure vs. Neurodiversity issue at this point. I am simply a mother trying to raise her child to develop to his own full potential in whatever way it might look. (Don’t get me started on the issue of someone else determining another’s potential…it just gets me angry!)

But I digress… The article in the Post was interesting. Playing devils advocate here…I guess one could argue that a single study using such a small sampling of kids might not be all that conclusive. It would be interesting to see some studies done in a variety of countries and cultures where the food sources may, in fact, be more highly processed and may use more chemical filler. What about a study of kids using one group on an entirely organic diet versus another eating nothing but school cafeteria food? Now we’re talking! (wink)

Personally, I do not think that there is a direct correlation between intolerance/allergies and autism. I am no scientist (that would be Niksdad) and I can only speak from my personal experience to say that we DO have Nik on a wheat/gluten-free and casein-free diet to the greatest extent possible. It’s tough with a tube-fed kid because all the formulas seem to contain some form of a dairy-based protein. That said, however, we originally started Nik down this path because of physiological symptoms (congestion, runny nose, constant ear infections) not because of any behavioral issues. And it was a gradual process. It was only after Nik had been on a GF diet for 6-8 weeks that we began to notice subtle changes in his attention span and expressive language skills. Hmmm.

Up to this point, Nik never really got much dairy simply because he doesn’t drink anything but water (his choice) in a cup and he gets all his needed nutrition via his feeding tube. (The whole eating issue is a complete post unto itself at a future date.) Several months after the start of the GF diet, Nik’s school began to give him yogurt in attempts to get him to eat by mouth. It worked. But it also had terrible effects on Nik’s overall demeanor and ability to focus.

We noticed that Nik would be extremely lethargic immediately after eating the yogurt. Not just drowsy…nearly catatonic. He would eat until he could eat no more — eating long past the point of satiety. My little boy who wouldn’t eat much by mouth on a consistent basis could all of a sudden eat nearly EIGHT ounces of yogurt in one sitting. Niksdad and I noticed some new behaviors for Nik including significant hand-flapping and finger flicking — NEITHER OF WHICH HE EVER DID BEFORE.

So, we conducted our own experiment and stopped the yogurt entirely. Within THREE days, the flapping and flicking were gone. Now, I’d love to be able to tell you that the dietary change “cured” Nik’s autism…fat chance! However, as we continue to make subtle changes in Nik’s nutrition, including putting him on a completely food-based formula which is GF and lactose-free (not the same as casein-free), we do see positive changes.

Even so, with all that, we have to remember that Nik isn’t your average “typically healthy” toddler; he was born way too early with all his systems very immature. He’s had massive amounts of surgery and mechanical and pharmaceutical interventions just to keep him alive at some points in his early life. We may never really know why ANY of these things happened.

Truth is, it doesn’t even matter to me anymore. I could waste time wailing and gnashing my teeth over the doctors who *may* have been able to determine that the placenta had attached somewhere without much blood flow, or that the neonatologists *may* have been able to determine much earlier that Nik’s intestines/heart/eyes/lungs/whatever didn’t develop quite the way they should have. None of that will change who Nik is and what we deal with on a daily basis. So we just move forward.

I think, perhaps as I write this morning, I am beginning to define my stance on the cure/ND issue. I understand the driving need for one to feel a measure of control over this out-of-control life with autism. I also understand completely loving your child no matter how they are or where they are to the point that you may fear changing some intrinsic part of who they are. I’m not sure you can do either in a vacuum; kids grow and change in spite of our best efforts to slow the march of time.

I can no more tell you if Nik’s behavior changes are due to the change in his diet, exposure at school to a variety of peers in varying stages of development, or simply part of the normal process any more than I could tell you when my son might walk, talk, or eat…or sleep through the night again! (Yes, we were up veeeerrrryyy early today…again.) But I can tell you without hesitation that I will continue to explore any and all means available in helping Nik adapt, adjust, grow, thrive, surpass people’s expectations…you name it. As long as it will DO NO HARM.

Thanks once again, Kristina, for the “food for thought” you have so graciously provided for me today.

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