A Reason for Hope

I have wanted to share all of our good news but wasn't sure how to go about it but finally am taking the plunge. Please know this is my experience. All children are different and respond to psych meds differently but since my daughter has done so amazingly well on this new medication. I felt compelled to share about it with you.
I've blogged in the past a little about out journey so far. You can read more about it here .
In December of 2012 we started our first of many new normals but Princess was stable. Unfortunately the medication that made her stable also made her crave food especially carbs. She ballooned up to over 100 lbs by May of 2013. Her pdoc weaned her off of that med with the hopes of starting a new med soon. Well becasue of an insurance snafu we did not get to start my daughter on a new medication  So last summer Princess was in and out of medical facilities over the course of two months trying to get her meds just right. She would get discharged and be home a few days then would end up having to go right back because she would become so unsafe.  Some  parents with children like mine have coined the term "Street and Treat." That was very true for us. For a while I felt like I was living in the movie "Groundhog Day."  My husband and I were seriously considering a Residential Treatment Center because things had gotten so bad.
In September we were finally able to get Princess in a therapeutic day school that the public school agreed to pay for but she  was still very sick.
In October when we were at our wit's end, our pdoc suggested we try this new med she had heard about at a conference that she recently attended. She said that it had been used to control behaviors in kids like mine. It had been used for a long time in Parkinson's patients but just recently in kids. With nothing to lose I agreed to try it. I was scared to death that this was not going to work and we would eventually end up having to place my child  in an RTC in a few months. Well lo and behold it was the wonder drug.
I cannot begin to tell you what a difference this drug, Amantadine, has made in my daughter's life! She is like a different child. She can attend and focus. She her acts of aggression are considerably less frequent and shorter. Her executive functioning has improved dramatically. Her SPD issues are almost non existent. The change in my child is so dramatic that I cannot believe it is the same child. It is like her behaviors were getting in the way of us being able to see who she truly is inside.
Even when she was stable in 2012, she was nothing like what we are seeing now. Her teachers are noticing as well. I can honestly say that I am enjoying spending time with my child. I no longer dread when the next rage is coming.
Two additional benefits are that we have decreased her other meds significantly and she has lost all of the weight she put on. We were able to go off of one med and are dereasing another. It is the pdoc's hope that eventually Princess will only need to be on one or two meds in addition to Amantadine.
I'll end this by saying that if any of what I am saying sounds intriguing to you, I encourage you to ask your child's doctor  about considering Amantadine for your child. I'm posting some links to some studies/ research about Amantadine if you are interested. Here's one. Here's another. The second link has the information about 1/2 to 2/3's of the way down the page. The facility is a highly respected residential treatment center in Texas.
We had almost lost all hope. We are beginning to dream again.
Never give up!

Musings From My Little Philosopher

 "Stable is a place where horses live." I have seen this quote on a tagline of another mom of a special needs kiddo. Every time I read it, it makes me sad. I am sad because it means that this parent has given up hope that their child can ever be stable. I refuse to do that. I have seen times where my child is stable so I know it is possible.
I have to admit that we had a pretty yucky summer and early fall. There were times when it was pretty awful but I never gave up hope that one day my child would be stable. I somehow knew that with the right puzzle pieces (meds, school, therapy etc.) stability was possible.
Right now we are seeing more stability in Princess than we have ever seen. It really is a lovely thing. I don't know how long it will last so I am enjoying every moment, every hour, every day that Princess has it.
I asked her on Saturday why she thinks she is doing so well. Her response blew me away. For a 9 year old to understand this is remarkable. Here's what she said. "I think it is everyone being so positive with me. I have a lot of help. The pills I am taking help me. Dr. Godsend, my feelings doctor and Mr. Color are all there to help me." Dr. Godsend (not her real name) is her psychiatrist. The feelings doctor, as you probably guessed by now, is her therapist. Mr. Color is a counselor at school. Yep she got it right all of those things are part of the puzzle.
Then today I got this little nugget. Princess and I were in the car on the way home from her appointment. I don't even remember what we were talking about but all of a sudden she said, "I know why I was put here (on this planet.)" I asked her why. This is what she said, "I was put here to cheer people up, to pray for those who are sick and hurting. When I grow up, I want to be rich so that I can give to others who have no toys or food or homes. I want to make good choices from now on. I am so proud of myself." I almost had to stop the car because I was crying tears of joy. Then she said,
"Thank you for helping me so much." Wow! I do not make this stuff up. Incredible!
Like I said before we don't know how long this stability will last but we are definitely grateful for it.
This is what stability looks like. I don't care if my child is famous, gets all A's or is the star athlete. To me if she is stable and she has God's heart, that is what is most important.
I am here to say that stable is not just a place where horses live. I've seen it in my child and it is pretty amazing.