Saturday, March 27, 2010

What my other child needs to see a specialist?!

Baby O had his 12 month check-up this past week. It was a bit delayed because M had an appointment the day we were suppose to go. He has always been on the smaller side, but he has fallen off the growth chart in length, weight, and the very critical head size. His pediatrician wanted him to see an endocrinologist. Since Talli sees one, I scheduled an appointment with him.

The endocrinologist has already told me that work is his life-- he has office hours 6 days a week at various Chicagoland locations. We started seeing him when he was on staff at Loyola University. We were able to get in this morning.

We are changing up his diet a bit-- more fat and we will be adding extra calories to his bottle. He suggested 22 calories/oz and after discussion he said to go up to 30cals/oz if he tolerates it. Since we have polycose & prophree around and we can do the math in our heads, we will add that in to the formula. Since his growth was poor, the pediatrician said to not take him off formula. He had a bunch of labs drawn and we will see what comes up.

I think after Talli something like this comes up and we just shrug our shoulders and go on. Food is always an issue in the house, so my big hope is that celiac disease is not the problem, but that is so easily managed. If he needs ongoing follow-up, we can easily schedule Talli's & O's appointments for the same time. The doctor brought up finances at the appointment and I told him if it was a problem I would let him know, $50 co-pays stink, but we do plan for them.

Monday, March 8, 2010

Psychological & Neuropsychological Testing

In November I attended PKU Illinois' annual meeting. During the meeting, Dr. Susan Waisbren made a presentation regarding psychological & neuropsychological testing in those with PKU. I did ask her if it applied to other disorders like Propionic Acidemia and she said it did.

My daughter has her first appoinement with a child psychiatrist to discuss learning issues and her anxiety around medical procedures. We also have a domain meeting in school next week as she is having her 3 year review.

The Genetics and Metabolism Psychology Network (GMPN) lists reference articles and applicable testing in those with metabolic disorders. I found the information very helpful.

Tuesday, March 2, 2010

Allergy friendly foods & Peanut Free Planet

While Talli does not eat much, having safe food around is always a concern. She is currently eating 100-200 calories a day, but since some she is sensitive enough to some allergens that being in the room with them or touching a contaminated surface and then biting her nail can cause a severe reaction we are always cautious.

Tree nuts are one of her most serve allergies, peanuts not so much, but peanut allergies tend to get worse with time. She is also on a very low protein diet, so that adds quite a bit of a complication. Cambrooke Foods is known in the metabolic community for good tasting low protein foods, however, and this is the big one for us, they make peanut and egg containing products, so we assume their whole product line is contaminated. Usually, when I call a low protein food vendor about allergies and cross contamination I hear in a quick raised voice, "Ma'am, we make foods for metabolic disorders not allergies." And my response is..., "My child has both." It has been far easier to get the protein counts on allergy friendly foods, some of which are very low protein than find safe low protein foods.

Here are a few companies that we enjoy:
Applied Nutrition- Low protein chocolate (only appealing to the low-protein crowd) that is allergy safe They do have cute Easter shapes.
Ener-g- They do manufacturer with some nuts at some facilities, so a call to them is usually needed We all like their pretzels and Gourmet crackers.
CherryBrook Kitchen- Allergy friendly baking products- cake, cookie, pancake, and brownie mixes and ready made cookies. Save the box bottoms as you can redeem them for mixes, t-shirts, cupcake holders, and an ipod. Target carries some of these as does Jewel/Albertsons and Whole Foods.
Enjoy Life- cereal, cookies, granola bars, etc. Some items are too high in protein for us to use.
Divvies- Cupcakes, popcorn, cookies and candy. Amazon sometimes sells them as well. Our local peanut-free restaurant stocks them as does Disney World.

Ok, so the last one is Peanut Free Planet We have ordered from them a few times. I am preparing for our annual Easter Egg Hunt that we host and was trying to come up with candies to put in the eggs. I also give out prizes as well. I was thrilled to find chocolate foil covered eggs to go into the plastic eggs as well as an inexpensive chocolate bunny to give out as a prize. So here is my order:
Amanda's Own Chocolate Baby Bunny $2.69/2oz (2, one for a prize and one for ODS's basket)
Comet MiniChick milk Chocolate Egg Bag $19.99/2.98lbs
Gimbal's Cherry Lovers 9 Cherry Favorites (for DH & DSs baskets)
Sunbutter $4.49/1lb Nearly the same taste as peanut butter and slightly better taste than Trader joe's brand

The chocolate is likely something Talli won't like the taste of because she is used to the low protein version, but at least it will be safe around her.

Happy Egg Hunting everyone!