I have an confession to make.
We haven’t always been giving Serenity’s 6MP the way we are supposed to. Actually, I do not think that the clinic gave us any instructions aside from not combining it with dairy or citrus products. But I knew from my friends on the ALL list that it is supposed to be given 2 hours after a meal or 1 hour before (always on an empty stomach).
We tried. We tried hard. In the beginning we would wake Serenity in the night to give it to her and she did NOT like it. She would kick and scream and spit it back into our face and we quickly decided that trying to get it in her at night was pointless.
So we switched to just before bed. I should mention here that she usually nurses to sleep, but I consoled myself with the knowledge that breastmilk is not the same as cow milk, and honestly, getting her to sleep without nursing is near impossible. (Actually it IS impossible if I am also trying to get the other little ones to bed.)
So I had gotten a little lax and there were even a few times that she ate before taking the medicine, but she is so thin that I wanted to let her eat whenever she was willing.
So lately on the list there has been some discussion of just how very important it is that the 6MP (which she takes daily, by the way, and will for 2 years) be taken on an empty stomach, at night, and especially not combined with dairy or citrus. And I started to worry and feel guilty and I followed the links and started looking at some of the research.
From what I can tell the compound in cow milk that interferes with the 6MP absorption is also found in breast milk. And it really IS important that she take it on an empty stomach. So I feel horrible, knowing that I should have been more stringent about all of this.
So I’m working on getting her to take it after she goes to sleep. She still doesn’t like this, so what I’ve been doing is giving it to her before bedtime, but then waking her up a few hours later and giving her a small dose of water. That way it doesn’t matter that she spits it out and gets upset. I’m hoping after I’ve done that for several nights, I can transition to just flavoring for a few nights, and by then maybe she will be accustomed to it and fight less. At that point I can start giving the medicine along with the flavoring.
I’ve explained to her that she can’t eat after she takes the medicine, and she understands and is being a good sport about it. It’s still hard to get the timing just right, because she still expects and needs to nurse at bedtime. Phil & I think that getting a timer will help so that we can “show” her when she can eat or drink again. And from here on out, I’ll just do better.
Some things you just learn as you go. I think your idea for helping her take it is a really good one.
Oh Adria, do you not see how wonderful you have been during all of this? You’ve been doing what you are supposed to for Serenity and trying to add on the special touches for your child’s comfort- like a good and loving mother does. Lesson learned, now move on. You are doing great! You’re all in my prayers 🙂
I say good for you for doing the research and deciding to try the tactics you mentioned. I think they’re great ideas. You were only trying to make Serenity more comfortable. Hopefully she’ll become accustomed to the new “rules” quickly! How is her rash doing?
Adria,
We have a difficult time with the 6MP, too, and are not looking forward to my son having to take it for a long time. He is only 4 and cannot swallow the tablet / will not chew it. We have found that we can crush it (using a pill crusher) and mix it with a tablespoon of strawberry or blueberry applesauce. This was approved by his ocologist and our pharmacist, both of who cautioned that we should crush the tablet outside while wearing gloves.
Please don’t beat yourself up about the “rules” of the meds. There are so many do’s and don’t’s and people not living with it daily have no idea what it is like. I find that my husband, as involved as he is, doesn’t really know what life is like all day, every day.
Thinking about you and praying for your family. It’s such a tough struggle, but I try to concentrate on how far the science has come, what good odds we are facing, especially when compared with 30 or 40 years ago. We are truely blessed to be facing this NOW as opposed to then.
Take care,
Dana
I read this last night and then had weird dreams about it all night. Just wanted you to know I am thinking about you.
Aww, you are doing what you can do, plain and simple. It’s not a perfect world and we just do our best.
Mrs Organic – thanks. I just hope it works!
Laura – this makes me want to bawl. Thank you for saying just the right things.
Vicki – Her rash is much better but did make an appearance earlier this week.
Dana – thanks for the applesauce idea! I’ll give that a try.
Kimberlee – you’ve been on my mind a lot as well. I keep you in my prayers.
StephanieS – I know you understand.
My daughter likes to have a late supper so giving her the 6 MP tablet before bed was an impossibility (2 hours) so I used to wake her to give it in the middle of the night but that wasn’t so good either. Now I give it first thing in the mroning and she waits and hour before she eats. I raed that you should only give it with liquid that you can read a newspaper through so use – applejuice was recommended – 6 MP is very difficult to dissolve. Good luck
My daughter doesn’t have a problem with having it inn the morning except when she is on steroids and has to wait an hour for breakfast – then we distract her
Adria
I can totally resonate to this entry. It’s crazy how much guilt we mama’s can have isn’t it? We were also a little “lax” with timing of 6mp, we gave it with a spoon of ice cream. When Rumi starts it again in LTM we will need to find a new routine but we are all doing the best we can.
xoxo Lael