Olivia & I headed out first thing this morning to the IWK for her appointment with the dietitian.  We had recorded everything she ate since we got the appointment last Wednesday so that her diet could be analyzed again.  It was last done in October, just before we took her off her Alimentum.  The first thing we did was weigh her and she was still 13.8 kg, the same as she was at her allergist appointment two weeks ago.  It was good she hadn’t lost anything, but she hadn’t gained either.  More of her bloodwork was back, including the dreaded Celiac Disease Test – NEGATIVE!!  I had been preparing myself during the drive; if we lost gluten, I know we would deal with it, but I think I’d have gone over the edge for a bit.  The results of her CAP allergy tests are still pending…

Basically, the reason her doctor was worried is because a child’s growth pattern should be set by age two, and Olivia’s weight has always been either in the 95th percentile or off the chart (meaning she was heavier than 95% or more of the other kids her age) and the 75th percentile for height.  She continues to be in the 75th percentile for height, but has fallen to just over the 50th percentile for weight in just a few months.  Children grow and thin out, but shouldn’t lose weight like that.  She just doesn’t have the fat in her diet that she needs anymore without the formula.

The plan is to change her diet & eating habits.  Starting tomorrow, she will be allowed no more than 16 oz. (2 cups) of rice milk per day.  That’s going to be tough because she loves it so much.  Also, she is now to have three meals and three snacks per day, with two hours between each and nothing in between those times but water.  If it takes her more than 20 minutes to eat, we take her food away.  Apparently, this has been proven to be more beneficial when trying to gain weight, as opposed to grazing.

We also have to do things like whisk a teaspoon of olive oil into her soups, spread oil on her pizza crust before we put the sauce on it, add sugar to her cereal, put (her special dairy/soy-free) butter on crackers, molasses in her cream of wheat, start feeding her more bacon, etc.  The kids all had pancakes with butter & maple syrup and bacon for supper – they thought they were in heaven!  The rest of us are going to be putting on a few pounds too.  Apparently, she should be able to safely eat french fries from McDonalds and she can have a hamburger patty with ketchup too (no bun because they contain soy & traces of egg) so we just may have to go have a happy meal sometime soon. 

I did have a smug moment giggle when the dietitian told me while analyzing her diet that despite her allergies, Olivia currently eats a better balanced and well-rounded diet than most adults do! 

She’ll go back in a month to be weighed and the dietician wants to see her at 14.5 kgs.  If she hasn’t reached that, she’ll have to start drinking a nutritional suppliment again.  The new one she would be given is very expensive – so much so the hospital actually has a program to cover the cost!  I’m hoping that we can keep her from losing anymore weight just by changing her diet.

That being said, by adding all this extra oil, sugar & bacon to her diet, I have a feeling she’s not going to be the only one gaining weight around here…

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Where to start…

April 8, 2009

The past two days have been filled with appointments for the kids. 

The girls both had dental appointments on Monday morning.  (Olivia’s first!)  They did great!  Sarah loves going anyway, so Olivia & I sat in on her appointment.  When it was Olivia’s turn, she climbed right up in the chair & opened wide. 

My parents were kind enough to take Alex to his eye appointment for me.  His vision has slipped slightly, but not to the point where they are going to make him start patching again; it could have just been a blip because he wasn’t feeling well.  He goes eight weeks between appointments this time!!  (What will we do without our monthly “date” to the eye clinic?!)  If his vision has continued to slip over that time period, they will probably take the correction from his “good eye” again.

D’Arcy was able to take the day from school yesterday to go to the specialist appointments with me.  We attended a parent workshop with the speech-language pathologist for Sarah in the morning.  She loves playing school, so I don’t think we’ll have any problems getting her to do her “homework.”  We’ll work on the “s” and “k” sound at home for the next two weeks, before she goes back in to work with the therapist.

We rushed home to pick up Olivia and headed to Halifax for her Penicillin challenge.  She is very comfortable at the Allergist’s and when we sat down in his office, she looked at me, poked her arm and asked, “poke?”  I explained that she wouldn’t be getting any skin-prick tests done today; instead she would be taking some medicine.  We discussed some different things that had been going on and I asked about the studies that have been published recently about kids developing a tolerance for peanuts after repeated exposure.  Apparently, the British study that was published only involved four children.  The American study involved 30 children, so that is more encouraging.  He did make sure to tell me that these kids were reacting as they were eating the peanuts and some did require epinephrine, so the study was not for the “faint of heart”.  He went on to say that he believes that in two years we will be treating some of these allergies and he believes that it will start with milk since there are already a lot of studies being done on milk allergies.  Treatment would not necessarily be for children Olivia’s age because at this point, she still has a really good chance of outgrowing most of her allergies.  It would be the kids who are 7 or 8 and up who have not outgrown.  Interesting stuff!!

I asked if we could weigh her because in the past few weeks, I’ve noticed her clothes are looser and her medic alert bracelet sometimes actually falls off now!  She has lost 1.36 lbs since her appointment in January and now weighs exactly what she did at her appointment on April 1st last year!  This is a big concern for him.  At this time last year, she was off-the-growth-charts-big, and now she’s fallen to just above the 50th percentile.  A big part of this has been the switch from formula to rice milk, since it doesn’t have any fat.  However, since all the fruits she reacts to cross over into different “families” of foods, he is wondering if her GI problems are more than just allergy.  She was referred to a pediatric GI specialist last July, but she still hasn’t been given an appointment.  He is going to follow up and try to get her in ASAP.  She’ll also go back to the dietitian at the IWK and we’ll have to start keeping a food journal again.  The last time we did that, the dietitian said she had a well-balanced diet with all her nutrients, but was lacking fat.  (With no dairy, soy, nuts nor eggs in her diet, fat is hard to come by…)

She had her penecillin challenge, starting with 1/100 of a dose, then 1/10, then a full dose.  We were there the whole afternoon.  Olivia was perfectly behaved, playing nicely and interacting with the staff and other patients.  The challenge has been declared a pass, although she did have some diarrhea throughout the night.  He ordered her first set of bloodwork, asking them to do a full workup:  kidneys, liver, endochrine, etc. 

They’re also checking for Celiac Disease.  (I might go off the deep-end if we lose gluten too…)

As long as she was being poked, he also ordered a blood allergy test called a CAP, checking her IgE levels to almond, brazil nut, cashew, egg white, hazelnut, macadamia nut, peanut, pecan, pine nuts, pistachio, milk, soy and walnut.  This will give us some baseline numbers for her allergies and allow us to track their severity over the years as she hopefully outgrows…  They can also be used as another tool to tell whether or not she is likely to pass a food challenge to a particular food. 

Saying that I was so glad to have D’Arcy with me for the blood work is an understatement!  Thank goodness for the staff at the IWK!!  She sat in D’Arcy’s lap and he hugged her and held her left arm while they took six vials of blood from her right arm.  She was SO good!  She didn’t cry at all or try to pull away.  She did look up at her dad a couple of times, as if to ask, “What is going on here?”  When they were finished, they gave her a tonne of praise and four finger puppets to take home to her siblings.

It was bedtime by the time we got home; my parents had everybody fed and ready for bed.  Olivia was up for quite a while since she had slept in the car for an hour-and-a-half on the way home…  Sarah threw up on herself again in her sleep, so it was another late night bath & bed change.  She’s fine this morning.  I would really like to get the windows open and the house aired out!

UPDATE:  As I was writing this, Olivia’s allergist called to say that the first batch of blood-work is back and everything is normal with her kidneys, liver, etc!! (Not that I expected otherwise, but it was still nice to hear!)  He has sent a letter off to the dietitian already and is waiting for the rest of the bloodwork before contacting the GI.