Tuesday, April 28, 2009

Closest analogue to severe food allergies = Type I (juvenile) diabetes?

Occasionally, when I explain to someone the precautions we must take with Ainsley at school and elsewhere, he or she will say, "It's kind of like she's diabetic, huh?" Given that my dad is a Type I (aka juvenile or insulin-dependent) diabetic, I have quite a lot of experience with this condition to be able to compare the two.

As I have mentioned before, my dad has been diabetic most of his life. He acquired the condition at the age of 27, after becoming very ill with a virus that he believes attacked his pancreas. He didn't know for a while afterward that anything was wrong, but after he began having symptoms (abrupt mood swings, sweating profusely, needing to urinate really often), he went to a doctor and was finally diagnosed. As I am sure most of you know, being diabetic means your pancreas doesn't produce insulin (or, in the case of a Type II diabetic, enough insulin), which converts the sugars circulating in your blood stream into usable energy.

So a Type I diabetic must take insulin to live, and must constantly monitor his blood sugar level to ensure it stays within a normal range and to determine how much insulin to take. If he or she doesn't take enough, the blood sugar runs too high and it overwhelms the body (as I have learned, this is usually a slow process - dangerous, but very slow and with several warning signs, such as sweating and urinating a lot and becoming very tired).

If he accidentally takes too much insulin, on the other hand, his blood sugar runs too low This is usually a more acutely dangerous problem. Someone's blood sugar can dip too low very fast, and the person can lose all awareness of the problem (acting drunk or otherwise out of it) or even pass out.

Ever since my dad learned he was diabetic, he has had to severely limit his sugar intake, take 2-3 insulin injections per day, and checks his blood sugar about 5 times a day. Currently, he lives in a retirement community and we have someone check on him twice at night because he is a "fragile diabetic," meaning he can have low-blood-sugar episodes without warning. I dread any late-night phone calls because I know they probably mean my dad has had such an episode. Thankfully - and knock on wood - we have only received two of those phone calls in the past year.

I have thought a lot about the similarities between severe food allergies and insulin-dependent diabetes and agree that they are very alike in terms of (a) the chronic nature of the conditions (they are both conditions that can be managed but not really treated), (b) the fact that both require the person to diligently avoid certain foods and (c) both can result in the person having a serious/life-threatening medical incident with little warning. Sometimes I actually think it was serendipitous that I had a diabetic father because it preprogrammed me to be vigilant and careful with Ainsley's food-allergy condition.

I must say that, of the two - Type I diabetes and severe food allergies - I think that, generally, food allergies are the easier condition to live with, because a food-allergic child doesn't have to take insulin injections (or have a pump or anything else to administer insulin) and there is more hope on the horizon for a "cure" or at least good treatment options for food allergies than for diabetes. Of course, a food-allergic person also has the hope of growing out of all or most of her allergies.

In my mind, the only thing worse about food allergies than diabetes is that a food-allergic person can die within just a few minutes of eating an allergen, whereas if a diabetic person eats sugar, his blood-sugar might go above the normal range, but it would be a relatively slow process and the only treatment would be to take extra insulin to bring the sugar back down. Additionally, although low blood sugar can result in an acute medical emergency, even if a person goes unconscious from low blood sugar, there would usually be enough time for someone to give the person glucose (in the mouth or under the tongue) or for the paramedics to arrive to administer it intravenously (at least I believe this to be true - my dad has had incredibly low blood sugars several times in his life, resulting in him being basically comotose, and has still been brought back to normal after we have waited several minutes for paramedics to arrive).

In any case, my knowledge and experience with both of these conditions means I feel deep empathy for any parent of a diabetic or severely food allergic child. I would give almost anything for my dad to have a working pancreas and for my daughter's immune system not to attack her body when she eats otherwise benign food items. Sometimes I marvel at how far medical treatments have come, but then I think about how there still isn't a cure for either diabetes or food allergies and realize how far we still have to go.

Thursday, April 23, 2009

Occupational therapy evaluation

Not a lot to report. I filled out a ton of paperwork and questionnaires while Ainsley was in the back of the office with one of the occupational therapists. Ainsley won't tell me what they did (she is this way with preschool too - very tight-lipped, and it drives me crazy!). I scheduled a follow-up appointment with the therapist for two weeks from today so we can discuss the results of the evaluation. My sister-in-law, who is an elementary school counselor, will be going with me to the appointment. She knows more about these types of issues than I do so her presence and questions will be invaluable.

Tuesday, April 21, 2009

Recent pics

A few pics ... Ainsley and Dave at her preschool's Purim party, Leighton on her birthday, and Leighton's birthday cupcakes. For the cupcakes, I used the white cupcake and buttercream icing recipes from Vegan Cupcakes take over the World, and they were sooo good.

Summer camps

Since summer is fast approaching, I have been thinking of whether to enroll Ainsley in any summer camps (little 2-hour things that she can attend for gymnastics, dance, theatre, etc.). Of course, the first thing I consider with regard to a particular camp is what the risk is that she will come into contact with one of her allergens. For instance, her ballet school has a week-long camp that goes from 10-12am. The brochure says, however, that "a nutritious snack will be provided." Now, I know some kids might get hungry during that block, but is a snack really needed? Can't they ask the parents to just load the kids up on food right before the camp starts? Why do they want to serve food in a dance facility anyway - I would think that would cause quite a mess.

Anyway, so now I have to contact the school to ask exactly what snack they plan on serving. I'm sure it'll be something Ainsley's allergic to. Perhaps they will be okay with me suggesting a particular snack, like Teddy Grahams. I have been through this drill before, but just thinking about doing it again makes me want to not even bother.

The one camp I will definitely be sending Ainsley to is a camp specifically for food-allergic children. It is run by the same teachers who do the bi-monthly food allergy classes during the school year. It goes from 9-11am for one week and no food is allowed. The teachers also require that you leave the child's emergency medication and a food allergy action plan with them during the class.

I am so excited about the camp - Ainsley loves the school-year classes so much that I know she'll enjoy it. She has become so good at knowing what she can and can't have and I know that her self-awareness comes from the things she has learned in her class (like how she should always ask me what she can and can't have and should be very careful to only eat things she knows are safe for her).

Just the other day, Ainsley was at my office with me and a well-meaning fellow employee offered her some hard candy that was cookie-and-cream flavored and pecan-praline flavored. I took a piece just to be nice but planned to throw it in the trash as soon as I got into my office. Before I even had a chance to do this, though, Ainsley (who had heard the employee describe what the candy was) looked at me and said, "Mommy, that candy isn't safe for me." She was so matter-of-fact about it - not even a hint that she was sad she couldn't have it.

Another anecdote that made me proud: This weekend we went to a craft show, and one of the booths had a bowl of candy set out for anyone who walked by. Ainsley saw the candy bowl, which was filled with unsafe (mostly chocolate) candy, and within two second managed to mentally sort all of the candy and find a Starburst, which she knows is safe for her. She asked whether she could have it and I very happily said yes. What a responsible girl!

Friday, April 17, 2009

Never mind

Well, the occupational therapist needed to reschedule today's appointment, so we'll be seeing her next Thursday instead. Oh well.

Wednesday, April 15, 2009

Occupational therapy evaluation on Friday

Not much has happened on the sensory-issues front since I last posted. I ended up finding an occupational therapist who specializes in sensory issues AND takes my insurance (yay!) and we have an hour-and-a-half evaluation scheduled for Friday. After that, she will write up a report and we'll meet back with her on a later date to discuss the results.

I'm nervous about this but have been feeling progressively better about it all since my meeting with the preschool director. I have been watching Ainsley much closer in the last week or so and have reached my own informal, completely uneducated conclusion that (a) she does seem to have more difficulty with motor skills, gross and fine, than the average kid but (b) otherwise, her behavior seems pretty normal, and well above-average in certain areas, so I really shouldn't be too concerned that these issues, if present, would, say, cause her to be a high-school drop out a decade from now even if we were not to put her in occupational therapy. But, as one of my close friends said, I will nonetheless throw myself full-force into the sensory-issues/occupational therapy arena because I am a Type A mom and Type A moms are used to putting forth a gallon of effort if only to effect a teaspoon of change. So here's to the teaspoon.

Sunday, April 12, 2009

Happy Easter, food-allergy style

Ainsley is on Day Three of her Easter holiday weekend sugar overdose. Thanks to our family and friends, who love to buy safe candy for Ainsley, she has had no shortage of sweet treats to eat this Easter season. She has already consumed her weight in Peeps (courtesy of my mom and mother-in-law) and eaten about 100 Starbursts (courtesy of her wonderful Godmother, who hosted an Easter egg hunt on Friday using plastic eggs that were filled with that candy, along with Sweetarts and Smarties).

As you might remember from my prior post on the subject, Ainsley's one request this year was for the Easter Bunny to bring her a chocolate bunny like the ones you see in the grocery store. So a while back I ordered some Easter-themed candy molds (including one for a large bunny). On Thursday we put those molds to use and, with very little effort on my part, created a ton of Easter chocolate.

My "recipe":

1. Put candy molds on counter.

2. Take out a bag of vegan/nondairy chocolate chips (I used the Whole Foods brand). Pour chips into a glass bowl and melt in the microwave (heat on high for 1 minute, stir, heat on high for 30 seconds, stir, heat another 20 seconds if needed).

3. Spoon chocolate into candy molds. Tap the molds on the counter after you've filled them with chocolate to get air bubbles out of them and make the chocolate smooth/even on the top.

4. Put filled molds in refrigerator for at least 1 hour to set.

5. Take molds out of the refrigerator and pop the candy out of the molds. Put candy in ziploc bags and store in the refrigerator.

Here is a pic of the three kinds of chocolate we made (large bunny, small bunny, bunny-in-basket):

Additionally, for those of you looking for a more complex Easter treat, here is a recipe for Pudding Easter Eggs, compliments of a fellow food allergy mom:

Dairy-Free, Egg-Free, Peanut/Tree-Nut-Free Pudding Easter Eggs

1 (4-serving size) package Jell-O chocolate or vanilla instant pudding mix
1/3 C boiling water
1/3 C nondairy margarine, softened
3 C powdered sugar
8 ounces nondairy chocolate chips
Optional: vegan white chocolate chips or colored frosting

Stir pudding mix, boiling water, and margarine in a large bowl until smooth. Mix in powdered sugar by the cupful, stirring until mixture forms a ball. Form scant tablespoonfuls of mixture into 1 1/2 inch egg shapes (if necessary, refrigerate mixture 10 to 15 minutes for easier handling). Refrigerate eggs until firm, about 30 minutes.

Melt chocolate chips. Dip eggs into chocolate. Refrigerate on wax-paper-lined tray until chocolate is firm, about 15 minutes. If desired, melt white chocolate and drizzle over eggs or decorate with colored frosting. Store in refrigerator.

Makes 30-36 eggs.

Saturday, April 4, 2009

Another bump in the road

I am sorry I've been absent for a while. I was taking time to deal with a new situation that's cropped up. Earlier this week we met with the director at Ainsley's preschool because she wanted to talk with us about some of Ainsley's "areas of development." Dave and I had no idea what this meant and were very apprehensive going into the meeting. It turns out that she thinks Ainsley has exhibited some markers of "sensory issues" (aka a condition called "Sensory Integration Dysfunction") and suggested that we get her evaluated by an occupational therapist and possibly start her in some occupational/physical therapy sessions.

When I describe what she said and her suggestions, it doesn't seem like a big deal at all. But it was a big deal at the time. I was being told that, in some ways, my daughter doesn't act like "normal" children. Then there was the realization that I would have to become well versed in a condition besides food allergies. I had thought my major challenge with Ainsley was her allergies, but I guess my plate wasn't full enough.

Being the proactive mom that I am (after all, I am a veteran food allergy mom, and no one is more proactive than we are), the night after the meeting, I started reading a book loaned to me by the preschool director about Sensory Integration Dysfunction called The Out of Sync Child. The next morning, I started calling the occupational therapists to whom the director had referred me to set up an evaluation. The first place I called was happy to schedule an appointment for a few days from now. The receptionist then nonchalantly informed me that the initial evaluation would cost $750 and that each treatment session (lasting one hour) would cost $140. What she failed to mention was whether insurance usually covered any of this.

When I picked myself off the ground from fainting from the prices, I called the place back and found out that they are a "private pay" clinic - in other words, you pay them in full, they give you the paperwork to file with your insurance company, and you cross your fingers that your insurance company will pay some of it.

Well, my insurance company isn't cool with that. I have a form of insurance that is practically universally accepted among providers who accept insurance, but it isn't a PPO so I can't go out of network, which excludes private-pay places unless I can show that no one else within 75 miles is qualified to perform the services. So my quest began to find a place here that would take my insurance; I guess this is where I should be thankful that I live in a major metropolitan area with some of the best hospitals in the United States. Thankfully, after just a little searching, I found that two major hospitals in the area have very good children's occupational therapy services geared toward sensory issues AND that these programs accept our insurance. But, to schedule an evaluation, I had to first get a referral from our pediatrician. I quickly made an appointment with him and brought Ainsley in. When I told him what the preschool director had said, he looked quite skeptical, but agreed that it wouldn't hurt to get an evaluation and see what comes of it.

So right now I'm in the process of getting the pediatrician's office to get the clinic the information it needs so we can schedule our initial evaluation. Whew ... sort of a busy week for me (on top of an already busy work week).

By this time you might be wondering what Sensory Integration Dysfunction is and why the director thought Ainsley might have a (very mild) form of it. Well, I had no idea until this week, but I quickly found out that basically it's something in the child's brain that inhibits her from processing signals from her senses, including her sense of balance and her sense of her body in relation to the space around her. This can prevent a child from controlling her body in the way she is supposed to.

Some of the markers of this disorder that the director pointed out in Ainsley are her relatively low muscle tone (manifested in her sitting in a "W" position sometimes and sort of having a "wet noodle" body), a lag in her gross and fine motor skills (she has some trouble skipping and climbing, and has difficulty holding a crayon or pencil correctly and cutting with scissors), and sensitivity to sounds and movement (doesn't like loud sounds, really doesn't like spinning in a circular motion).

The director emphasized that Ainsley's issues seem very mild and that they are easily correctable with appropriate play therapy (thankfully, this condition is not treated via medication so we don't have to open that can of worms). But she wanted us to know now because, as with other conditions, the earlier we get her into therapy, the more improvement we're likely to see.

I have come a long way in this past week. I began as really upset and confused, and am now in a place of peace and have realized this really isn't something to stress too much about. Ainsley probably does need the therapy and hopefully it can remedy some of the anxiety she feels when asked to do physical activities (she often refuses to do things like color and draw because she doesn't feel that she can make the picture look good enough). Although I had thought she was just high-strung and sort of unathletic (if you are familiar with the movie Parenthood - one of my all-time favorites - Ainsley is a carbon copy of Steve Martin's oldest child, Kevin), it could just be that she is stressed because she realizes that she can't do some of the physical things her peers can.

One final note: The Out-of-Sync Child said that allergies (environmental and food) are commonly seen in connection with Sensory Integration Dysfunction. So I am left to wonder whether Ainsley's food allergies are related to these sensory issues. I will likely never know the answer, but the director did say that, like food allergies, sensory issues seem to be multiplying these days. Whereas she used to only see one child in hundreds with these issues, she now sees children with these issues in every one of her preschool classes. What I would give to know why that is.