Wednesday, July 29, 2015

Memorable Quotes from Doctors

Eons from now, when my rage, frustration, disappointment, desperation and all that nice set of fulfilling sentiment would have settled a bit I might even consider these funny. Let me know which is your favorite line. Having lived them all, they are all my favorites.

    1.    Make another kid. Who is going to take care of this one when you die?

2.    Aha, so, he has this Syndrome Aaa..lan-Hern..rndon-Dudley, what do you want from me?

3.    Make another kid, I’m sure! I feel it! That it’s going to be healthy.

4.    You are making TWO kinds of physiotherapy? Pff!!You don’t know anything

5.    You are not to open your mouth while in this office!

6.    You should be a Mother, hold your baby in your arms and love him. That is all you need to do, not go around reading on the internet and get ideas.

7.    You are both irresponsible! You should not go around changing doctors! You should stick to YOUR doctor and TRUST him.

8.    Don’t worry, your child is fine! He’s just lazy.

9.    Let’s not make the genetic tests now. Let’s wait maybe he’ll grow out of it.

10.    This is the first case I see of this syndrome and I hope to God I don’t get to see another one in my life.

11.    I had another case of AHDS. He lost contact with the world and died at 9 months old. How old is your son? 

12.    Your baby’s ears are fine, you’re the one who is stressed over nothing and stressing your baby unnecessarily. (12h later we were in the ER, our baby had otitis)

13.    You are not allowed to be in the same room with your child when we are taking blood. You are stressing the nurses.

 This is not a complete list as you might imagine, merely a list I made up off the top of my head.

Wednesday, July 15, 2015

Hope as a High End Commodity

These past few months have been tough, with ups and downs, mostly downs but this is not what I want to tell you though…

There is this group of parents and relatives of children with AHDS. Of course, the first thing I did was to start asking around, trying to find out as much info as I could. Ok, there is no treatment but maybe there are still ways of improving. I cannot just give up. That is not acceptable in my book.

I was surprised by the lack of interest and ideas in our conversations and started wondering why. I mean… we are all in the same boat. We should work together and try to find solutions for our children. We should brainstorm and push decision makers and DO things.

I first got a glimpse of what’s really happening while I was talking to one of the mothers and she told me that she cannot go through everything all over again. The whole process: hope, lose hope, scrap for the tiniest bit of hope, nurture it, grow it and then lose it again and then again and again…and again.

I saw and understood her point but I couldn’t relate to it. So I gave up trying to find information from other parents and started searching on my own. From physiotherapy techniques to nutrition researches, to drug development research, to drug delivery via nanosystems, to intrathecal implantable systems, I dug through it all, I contacted people; sometimes I asked more questions than I should, sometimes I annoyed people but I kept pushing…hundreds and hundreds of hours of obsessive reading.

And this was how the process went: I would find information of value, get my hopes up, dig some more, find a flaw to the initial idea, and get my hopes even lower than before. And this carousel went on and on and on…

An example: I found a research that was describing a way to bypass the blood-brain barrier. It seems that other researchers have seen value in researching this also. It wasn’t meant for this syndrome but it doesn’t matter. There were people looking and succeeding to do this. I was ecstatic…Started jumping up and down. I made new contacts; got people together talking, maybe pushed a bit here and there, get my hopes up to the roof.

One fine day, I read another research that didn’t even have anything to do with our case. In a “by the way” kind of phrase there was an information that shattered every small piece of hope I could ever try to salvage. Thyroid hormones NEED to pass through the blood-brain barrier in order to reach the part of the brain where they are useful. Through the other ways, even if the hormones bypass the BBB they don’t have access to the part of the brain that needs the thyroid hormones.

In that moment I could literally hear my hopes shatter.
The more you hope, the harder you fall. But then again, hope is the only thing that keeps us going and when you free fall like that, scrapping for the tiniest piece of hope in order to just get you through the day becomes harder every time.
You start thinking that you cannot afford to hope for the best or even for the half best because picking up your pieces after you break takes time and energy and you have neither. You need hope but not more than a little, just enough to get you through the day.

And this is how you start sabotaging yourself and your opportunities to hope for the best again.
Rares’ blood tests came out last week. For the first time ever his indicators were within normal range. You wish you could hope for the best, if only for a short while but you don’t have the strength to pick yourself up again piece by piece… don't.
Now, I’m doing more than just seeing the other mother’s point. I’m living it.