Sunday, July 20, 2014

Conversations with AJ

So after AJs experience with the sugared drink she has had lots of questions... 
I know, shocking.

AJ:  are fake sugars bad for me?

Me: yes

AJ: but sometimes you let me drink things with fake sugar and they don't
give me a headache or suck up my energy or make me hungry. So why are they bad
for me?

Me:  a lame attempt to explain that just because they don't crash her system
they are still not good.

AJ:  what would dr miller say if I told her I drank fake sugar. Like had a diet

Me:  she would say diet coke and other drinks with fake sugar are bad for you
and you should drink water.

AJ:  but I hate water and fake sugars don't make me feel awful. What exactly do
they do on the inside that's bad for me

Me:  it's hard to explain.

AJ:  Well can you please ask Dr Miller to explain it to me so I can understand!

We did in fact ask Dr. Miller because no matter what I said it was not what she wanted to hear so it was deemed incorrect because, after all, I am just a mom.  AJ was less than thrilled with the answer from Dr. M, but we moved onto another subject.

I also had another small issue with Ayden Jane and food.  She was at her swim meet and hanging out with the other kids.  No one has a clue about Ayden Jane having PWS because, well, I don't see any reason they need to.  Her friend was eating some sort of cheese crackers.  She offered some to Ayden Jane.  I was watching from a ways off and they were looking at the box.... I thought they were reading some game or something.  She had asked her friend (8) to read it and see if it had any sugar in it because she cannot have sugar.  Her friend 'read it' and declared that it had no sugar so Ayden Jane started to eat a few.  I stopped her and we chatted about it after the meet.
The conversation led to this, that there are "different types of sugar". I introduced her to the word carbohydrate and told her it is the big fancy word for all the stuff that her body turns into and uses like sugar.  So, for example, fruit has sugars and too much of those is a problem but that she is okay with some a few times a day.  So that is now considered fruit sugars.  We talked about how crackers and noodles and bread and cereal have grain sugars and that those her body cannot use at all.  That most people can use those sugars and they are even good for them.  Then we talked about pure sugars.  I told her that these are like in candy and cookies and cupcakes and sugared drinks.  That she absolutely cannot have these as they will cause the reaction she had to the drink the other day.  That they are not good for anybody but most people can have them occasionally as treats and be just fine.  She is clear that she is not to eat anything from her friends or there will not be swim meets.... (I know it sounds harsh, but it's how we roll)
It is a challenge to stay one step ahead of this kid.  I mean, to have to explain all this stuff to a kid who just finished Kindergarten seems kind of crazy.  At times I find myself wanting to just give her the "because I said so" answer but she won't accept that answer anyway.  She is becoming so independent and more 'typical' by the day.  She will be in situations like the swim team one with more frequency. 
I guess I am thankful for the drink mistake and drilling in the consequences (she hadn't felt the hunger consequence before).  I just wish there was a magic formula that would tell me how much independence she can safely handle and how much I need to hold her back to keep her safe.  How do I know she understands enough to take on a complex issue at age 6.
She is smart.  She asked me if she can't have fake sugars then when will she get the medicine that will help her Krebs cycle enough that she can handle some real sugar.  (Dr. Miller told her about Beloranib) I told her that Dr. M is making sure it was safe and figuring out just how much... that it would take time because she had to be very careful to make it just right :)  Ayden Jane answered that if Dr. Miller is willing to work so hard, she will try to drink water.  I'll take that as my win for the day.

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