Monday, January 7, 2013

Makenna Update

This poor girl, she looks ill, she looks miserable. The circles under her eyes are so dreadful. Thankfully at this very moment she had just poo'd so she was in a good mood - but this is either the end of an episode that she had over the weekend and the Zinc we give her daily is working and making them last for a shorter time - or it is the start of a mood that is about to come.


Well, we are still waiting to hear back from the doctor. I have emailed the dietitian twice now in two months and she still has no answers. No one knows anything about the Surcaid trial I want to try, so not sure that will be something we can do. I hope the doctor has just been busy and will look into it. It is worth a shot.

We are living with this, we are dealing with this, we are managing this. We have good days and bad days. We even have good weeks and bad weeks. But the most important thing is that Makenna is the one living with this. She knows nothing else. She has had a "diaper rash" and mood swings since she was born. Now, 1 year after being out of doctors day and night, she still has the rash and the mood swings are uncontrollable at times.

A huge part of me just wants to end all the visits to the doctors and just live with this the best way we can on our own - especially since no one knows how to help us. We got lucky finding a doctor to give us "some" answers. But there could be more. There could be more treatments, more help. So do we keep pushing until we are satisfied... but will we ever be satisfied.

There is one solution, a way to avoid the doctors. But it is next to impossible with Josh and I both working full time jobs, having multiple care givers, the girls in school, and most importantly, having three other siblings. That solution is an all out elimination diet. We start with the basics like rice, chicken, a couple other foods, and water. That is all she would eat for 1-2 weeks. And then every 3 days introduce a new food and see if she reacts. And continue it for as long as it takes until we find out what she can and cannot have. One day we will do this, but if we don't get the advice and help from the doctors, then we will have to wait until she and her siblings are all old enough to understand what is going on. Right now, we can manage it, keep it under control, so it's not fair to her to make her live the next 6 months on this restricted diet while she watches her siblings eat whatever they want.

I hope her GI doctor is able to find an Allergist or Dermatologist to offer some assistance and take an interest in Makenna and do all they can to help us find answers. Otherwise, we are on our own.

If I could take the pain away, the hurt away from her I would. But I can't. To watch your child sit there why her brother and sisters eat a cupcake while she eats a yogurt at a birthday party is so heart breaking. She understands for the most part, but of course she wants more than anything to eat that cupcake too. She is 4... any 4 year old would. It brings tears to my eyes to see that look on her face. I know its just 5 minutes of her suffering rather than 3-5 days of her suffering rage, mood swings and a rash, but its still so hard to see. And it's not fair to the other three to take it away from them.

I just want my daughter to be able to be a 4 year old and eat pizza and ice cream like her siblings and friends. I don't want to see her traumatized when she is 10 years old because she has to use diaper cream to make her rash better. I don't want to see her siblings resent her because she can be so mean to them at times. And I don't want to see her cry because her sisters wont play with her because they are afraid of her. Yesterday I had to put her in her room for time-out and she grabbed around my neck so tight, I struggled to break myself free as she was choking me. The look on her face during a mood is devastating, it's the look of a child in pain, a child hurting and confused, a child lost in her own body, a child who can't break free of this thing that takes over her body. And for these reasons and many more - I will keep fighting to find answers, to find solutions.

2 comments: said...

Have you checked for Celiac? She sounds so much like my McKenzie. At 18 months she tested negative for celiac and I didn't know enough to push further. . . it took until she was 5 to figure it out! Night and Day difference. The good news is- she can eat just like everyone else, pizza- cupcakes- bread- I just have to plan for it! There are so many good GF options now.

Megan said...

Thanks for the suggestion. She did hav a blood test done, but I think she would need more testing than just a blood test to be diagnosed. These doctor's here don't seem to know or care... something to suggest to her specialist though!