Larry's Musings

Raising a child with sever food allergies...

I'm posting this entry for anybody who ends up raising a child with severe food allergies.

When I first discovered the severity of my son's condition and the ongoing changes in it, I know I would have liked to have read a blog entry from a parent who had already gone through this.

My son is allergic to almost all foods. However, if he is exposed to even minute amounts of milk, dairy, beef or pork products, he could have a fatal allergic reaction. Although we knew of the milk allergy before he was 1 year old, the other allergies manifested themselves between the age of 1 and 2. When he was 1 1/2 years old, he had a potentially fatal reaction to a breakfast sausage that he had been eating safely for several months previously.

That was the point when things began spiraling out of control. We identified beef and pork as additional allergens to the milk we had previously identified from testing performed after that reaction. Over the next several weeks, he began reacting (through hives) to other foods he was eating. We were at wits end, because we had no idea how we would give him the nutrition he needed, and how to keep him safe.

Those were the dark times. Although his condition is essentially the same as about a year ago (he's 2 1/2 now), things are going extremely well. Better than we could have imagined:

1. He has not had a severe reaction since then (knock on wood).
2. He is perfectly healthy. He has gained about 12 pounds since his initial reaction and is above average in height and weight.
3. He is an extremely happy, confident, outgoing, and energetic 2 year old boy.
4. We have figured out how to keep him safe at both home and at his day care.

How did we accomplish this? Here is what we did:

1. We put him on a product called NeoCate. For a brief period of time, outside of water, this was the only thing we were allowed to feed him. Believe it or not, just knowing that this product existed would have prevented many sleepless nights. We had all sorts of nightmares about our son having stunted growth and starving to death because we would be able to feed him anything. NeoCate gives him all the nutrition he needs to grow and thrive.
2. We came up with new processes to follow at home and at his day care. These processes fell into two categories: one for preventing a reaction, and one for treating a reaction.

Processes for Preventing an allergic reaction

Here is the secret we follow for preventing an allergic reaction: first, empower the child to manage his diet appropriately; and second, empower his day care providers. It took us a while to figure this out, but fortunately, our son helped us through this process (yes, we learned how to do this from a 1 1/2 year old boy). If you can give your child the tools to identify which foods are safe for him to consume, you've done the most you possibly could do to prevent allergic reactions.

You're never going to be able to educate all people your child comes in contact with about his condition, and many people won't believe you. Also, children do not enjoy allergic reactions. They will try to avoid one if all possible, if they've had enough of them.

For us, this is our strategy for allowing our son to manage his diet:

1. The cups that hold his Neocate are always of the same type and color, and are also clearly labeled with his name on blue painters tape. This is especially important, because Neocate looks the same as milk (which he could die from exposure to). In addition to this, we do not EVER call his Neocate "milk" (we want to make sure he doesn't walk up to somebody, ask for milk, and then have them give him milk). We call it "nook" (which is a name that he came up with... Neocate is a little hard for a 1 year old to say).
2. We make sure that any other foods he eats are clear to him as to what's in them. This is also very important, because as tempting as it is to jump through hoops to cook him a birthday cake that is safe for him to eat; we do not want him thinking that any cakes are safe for him to eat. Therefore, we make sure that when he eats chicken, he knows that it's chicken. When he eats fruit, he knows that it's fruit. We stay away from foods that could confuse him (such as hot dogs).
3. We have him participate in getting his meals. There's a special place where his Neocate is kept in the refridgerator, and his foods are also kept where he can reach them. This way, he is always involved in his diet and he always knows where his food came from.
4. We have trained his day care providers, and have provided them with the Preschool Guide to Managing Food Allergies (from the food allergy and anaphylaxis network). It was very hard to find the order form, so here is a link to it.

Processes for dealing with an allergic reaction.

Here is what we do to make sure that we're always ready for an allergic reaction. We have accepted that it will be impossible to completely prevent allergic reactions from occurring. Therefore, we are sure that we (and his care givers) are always prepared.

We have a fanny pack with everything we need to handle an allergic reaction (and have it with us at all times). The fanny pack has the following in it:

1. A bottle of Benadryl as well as a medicine dropper. If administered early, Benadryl will stop most allergic reactions. Your doctor will be able to tell you the dosage, etc.
2. His EpiPen. Any child who's in danger of having an Anaphylactic reaction (the ones they could die from) should always, always, always have an EpiPen with him.
3. A copy of his medical insurance card.
4. A copy of a letter from his doctor, which has the following section sin it: a section that describes his condition, a section that describes how to identify and treat an allergic reaction (which is intended for any caregivers), and a section that tells emergency personnel how to treat him in the event of an anaphylactic reaction.
5. A copy of his doctor's contact information.
6. The EpiPen Trainer, so that we can train any new caregivers as to how to administer the EpiPen as we go over the contents of the fanny pack.

The important thing about the fanny pack is that it goes wherever the child goes. When he is at day care, it stays there. When he is in the car, it is there. This way, anybody who is caring for him has the tools they need to deal with an allergic condition.

We also have an extra version of the fanny pack at his day care, so that we don't have to worry about forgetting it (sometimes drop-off and pick-up at day care can be hectic enough), as well as extra EpiPens and bottles of Benadryl at home.

Finally, we are always careful about who we leave our son with. We feel that the responsibility of caring for a child with severe allergies is too much to ask of most teenagers, so we only leave him with adults that we feel understand his condition, and would be willing and able to deal with an emergency. Fortunately, several of the teachers at his day care also babysit, so we use them.

The silver lining

Although all of this may seem overwhelming, it's actually now part of our normal routine. Yes, we have to stay vigilant, but it's not an all-consuming issue (just like you have to stay vigilant when you live near a busy street, or a body of water).

What's impressed me the most, however, is how much I've learned about the capabilities of my son. Although I would not wish this on anybody, I believe that my son has learned some very valuable lessons:

1. He is very organized. He helps his teachers pick up the room, and recognizes that everything has its place.
2. He accepts disappointment gracefully. The fact that he can't eat the same things as his sister or his classmates is something he understands, and that understanding translates to other areas of his life, where he may not get everything other people get.
3. He is very self confident. I was worried that his allergies would erode his confidence. However, because we were able to come up with rules he could understand, and because he feels confident in his ability to manage his allergies, he is extremely confident in his ability to accomplish whatever he puts his mind to. In addition, we have not let his food allergies define who he is.

posted by Larry Grey @ 11:29 PM 0 comments

What happened to Giant Tinker Toys???

Okay. Kind of negative for a first blog entry, but I just can't believe it.

My wife was looking for the perfect gift for my nephew's 4th birthday. I told her the toy that I used the most was my Giant Tinker Toy set. Not only could I build a rocket, ship, airplane, train, tank, castle, and spacestation, but I could also play in them.

I did a quick google on it to see where they sold them (I figured that since they still sold the regular kind, you must be able to find the Giant ones). No luck. There was a single ebay posting for a used set.

That's really a shame. I can't think of a better toy to get kids thinking as an engineer, architect, or product designer. I wonder if they were pulled off the market because the manufacturer was sued by somebody who injured themselves by building a bridge across a canyon that wouldn't support their weight.

posted by Larry Grey @ 11:14 PM 3 comments