Tuesday, October 29, 2013

NEUROLOGIST VISIT #3

Yesterday was our neurologist appointment for both boys.
We drove to Spokane on Saturday, had some fun on Sunday, went to the appointment on Monday, and then came home.
Short and sweet.
I feel fairly good after this appointment. For once, I didn't cry. I didn't feel hopeless.
I left feeling pretty good. I left with more knowledge and an idea of what our next steps would be.
That's why I really like this doctor.
 
We we will start with Gibby.
 Overall, the doctor was very impressed with how far Gabriel has come since she saw him in May. She feels like the early intervention with the therapies has been wonderful for him, and feels confident that he will catch up. He is still behind, yes, but she said sometimes children with Autism Broad Spectrum who are on the high functioning end of the spectrum just need an extra nudge to get going.
She marveled at his sweet crawling moves (he is doing downward dog!), his hand dexterity and core strength, and his general cuteness.
She is concerned about his speech delay and encouraged us to start speech therapy as soon as possible (we are starting in November), and to get his ears checked out once again to make sure the tubes are still in there, that they are working, and that there isn't any built up fluid that may be preventing him from hearing the correct sounds. She said if he hasn't started to say more words by the time he is two, she would want to look into a cognitive delay or disorder.
On a side note, this weekend Gibby graduated from saying "Dada" and "Mama" to "Daddy" and "Mommy." He doesn't do this with a lot of association yet, but still...it is a new syllable!
This means we continue all of the therapies, adding in speech therapy, and just keep working with Gibby until he reaches the level where everyone is content. We have to get him in for his genetic test within the next two weeks so that we can have an official answer and go forward from there.
 
Caderyn went after Gibby.
He does still have Tourette's. No surprise there.
We talked about the Tourette's and the August visit with the neurologist in Billings.
From her observation, she said his tics seemed on the lower end. He does regular eye rolling and rubbing, loud sniffing with his nose, and sounds with his mouth. She said, in time, these can be explained by him to other people as something normal (For example: "Why are you rolling your eyes?" to which he would answer "I have allergies that affect my eyes" or "I have dust in my eyes."), or he can try to contain them by using an object like a stuffed animal or maybe a piece of jewelry to deflect his need to move or make noise. She used the example of giving him a plastic fish that he can put in his pocket. Every time he wants to roll his eyes or sniff, he can try touching the fish instead, and with enough perseverance, he could eliminate a certain tic.
Or not, and that's okay too.
She did notice he had some more extreme tics, like the neck rolling, that popped up mainly under stress. She said that's normal.
This tic has really been minimized by taking him off that medication we had him on in August and September. He hardly ever does it now.
She advised that we do not use medication until Caderyn is old enough to ask for it.
If the tics are so bad that he is feeling self conscious and isn't comfortable telling people about it, then we would want to look into medication. She said this could be 5-7 years from now.
So, we liked that viewpoint because we really don't want to put him on medication.
There is no medication to truly get rid of the tics. It is more to take the edge off and relax the kid so that the tics may be less pronounced.
She said the tics will peak and probably get worse throughout puberty and high school, or, with early intervention he could work on deflecting them to an object.
She advised us, like the other doctor, to just let him be who he is. Never tell him to stop. We can tell him to relax or to take a few minutes in his room to let him have his "tic time" where he can just be comfortable doing the tics, and as she said it, "Get that tic itch." Because tics are just like scratching an itch, you need to do it, you feel better once you've scratched it.
One interesting point she made was that Caderyn has an OCD tendency related to Gabriel.
With Tourettes Syndrome, there can usually be other issues like ADD/ADHD, anxiety, sleep problems, or OCD.
The only one she really thought he had was a compulsion related to his brother. He constantly needs to touch his brother. Sometimes it is sweet, but most of the time it is just freaking annoying and, lately, he has gotten a little more aggressive with grabbing Gibby, trying to pick him up, or pushing him.
Frustrating, yeah?
So we are going to have him visit a behavioral counselor to try and work through that, we are also going to try and, again, introduce an object that he can use to redirect those feelings. 
She sent us home with a DVD on Tourette's Syndrome and an article on Tim Howard, the goalie for the US Men's Soccer team who also has Tourette's Syndrome.
She said if he finds something that he likes, like sports or Legos or hunting, to try and get him as involved as possible because that will be a good way for him to disconnect from the tics and keep his mind focused.
 
And there you have it. That was our visit.
From here we just keep trucking along.
 
The boys will go back for a visit sometime in May or June 2014.
I would like to again thank all of our family and friends who have been such great support to us during this time in our lives. You mean the world to us and we are so thankful for each and every one of you.

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