A week or so ago Daniel had a doctors appointment.
Things have been discussed at prior appointments about Botox, surgery and/or medications to help with Daniel's spasticity.
Prior to now, I have always declined these options. I never felt Daniel was "bad" enough to warrant any of those options yet.
Well this time, after some discussion it was decided that we should try it. Because of Daniel's recent growth spurts and weight gain we were going to try Zanaflex for the spasticity in his legs. The reason for the Zanaflex over the Baclofen is because it doesn't seem to lower the threshold for seizures.
Even after agreeing to try it I was very nervous, I still didn't think Daniel was horribly bad. I did the typical research and asked other parents of children with cerebral palsy. I got mixed results, some hated it and some think its the best thing since sliced bread.
Had I gotten overwhelming comments that it was horrible I would have not even attempted it. But I would then have always second guessed the decision.
So about 12 days ago we started him on a very very low dose- 1/4 of pill (1/2 mg.) in the a.m. and another in the p.m. I told the doctor, that I would give it a couple days and see if there was a difference in Daniel.
Not necessarily the spasticity, but if this was going to knock him out and make him loopy I wasn't going to continue to use it. I wanted my child's cognitive level to remain good more than I wanted him to take steps and be loose.
I went in with the thought, OK lets see how badly this med screws Daniel up.
Well the first couple of days, he did sleep a lot and seemed kind of wacky.
I talked myself into giving it to him the 3rd day, telling myself "You gotta give it time, see what school and the therapists think".
Well since the 3rd day, Daniel has been the same personality wise, and he is still here mentally, doesn't' seem fuzzy. My main concern. He actually is more touchy now-- he is able to move his arms and hands to feel your face and hair. Or he likes to pat me on the back!
There has been a marked difference in the spasticity of the body too. He is able to move his left leg with better steps. Actually lifting instead of dragging it. Good thing.
BUT (there always has to be a but right?!)
Where I thought he was strong, he wasn't as strong, it was all the tightness in the body that made him appear to be strong. The good thing is that the medicine is helping the tone, and allowing us to be able to work on the weak areas more easily instead of not at all. So for now we will continue with this med. IF we see negative reaction to it, we can get him off it pretty quickly and he will be back to his normal.
Although I don't like pumping meds into him - I prefer this over the surgery. And who knows, someday maybe the meds won't be enough and we'll have to look at the other alternatives.
Here is a photo of Uncle Daniel with his sister Alexandra's newest baby - Chase.
WOW, this made me realize just how big Daniel is getting! (excuse Daniel's hair - his aunt who cuts his hair is in Texas!)
Things have been discussed at prior appointments about Botox, surgery and/or medications to help with Daniel's spasticity.
Prior to now, I have always declined these options. I never felt Daniel was "bad" enough to warrant any of those options yet.
Well this time, after some discussion it was decided that we should try it. Because of Daniel's recent growth spurts and weight gain we were going to try Zanaflex for the spasticity in his legs. The reason for the Zanaflex over the Baclofen is because it doesn't seem to lower the threshold for seizures.
Even after agreeing to try it I was very nervous, I still didn't think Daniel was horribly bad. I did the typical research and asked other parents of children with cerebral palsy. I got mixed results, some hated it and some think its the best thing since sliced bread.
Had I gotten overwhelming comments that it was horrible I would have not even attempted it. But I would then have always second guessed the decision.
So about 12 days ago we started him on a very very low dose- 1/4 of pill (1/2 mg.) in the a.m. and another in the p.m. I told the doctor, that I would give it a couple days and see if there was a difference in Daniel.
Not necessarily the spasticity, but if this was going to knock him out and make him loopy I wasn't going to continue to use it. I wanted my child's cognitive level to remain good more than I wanted him to take steps and be loose.
I went in with the thought, OK lets see how badly this med screws Daniel up.
Well the first couple of days, he did sleep a lot and seemed kind of wacky.
I talked myself into giving it to him the 3rd day, telling myself "You gotta give it time, see what school and the therapists think".
Well since the 3rd day, Daniel has been the same personality wise, and he is still here mentally, doesn't' seem fuzzy. My main concern. He actually is more touchy now-- he is able to move his arms and hands to feel your face and hair. Or he likes to pat me on the back!
There has been a marked difference in the spasticity of the body too. He is able to move his left leg with better steps. Actually lifting instead of dragging it. Good thing.
BUT (there always has to be a but right?!)
Where I thought he was strong, he wasn't as strong, it was all the tightness in the body that made him appear to be strong. The good thing is that the medicine is helping the tone, and allowing us to be able to work on the weak areas more easily instead of not at all. So for now we will continue with this med. IF we see negative reaction to it, we can get him off it pretty quickly and he will be back to his normal.
Although I don't like pumping meds into him - I prefer this over the surgery. And who knows, someday maybe the meds won't be enough and we'll have to look at the other alternatives.
Here is a photo of Uncle Daniel with his sister Alexandra's newest baby - Chase.
WOW, this made me realize just how big Daniel is getting! (excuse Daniel's hair - his aunt who cuts his hair is in Texas!)
7 comments:
What a sweet picture. Evan was on baclofen to help with sleeping but it did not work for that, it did help with his spasticity though. Not sure about seizures because he was not having visible seizures at the time. I think he was about 3 1/2 when we did his first round of botox. We just did his 3rd round today and we are going to do serial casting starting next week. I have been very pleased with the results of Botox but I think it might be good for us to think of using a medication as well for when the Botox is wearing off etc.
LOL.....I have to laugh with CP and DID for over 30 years total for both disorders/disabilities. You basically have to do trial and error. Nuf said. If things don't work, you change. And like Daniel, I went through a hellish life till I got off the pills (the list would make your head blow up)....and yes, I am a native TXan so the heat and humid summers made the meds WORSE in this climate.
Anyway....off all pills. Now, I have a Loresal Intrathecal Baclofen Pump that I got in 2006 at 31 years old. Too little too late. My tone, spasticity, chronic pain has been incresaing for more than 10 years.
No one could do anything. Till the pump...now, all of the CP and DID stuff is fully manageable for me. And the older I get the worse the symptoms get because I age twice as fast as the able bodied people in the entire global world here....but meh....life is what it is.
I am so excited. The pump gets filled 3 times a year, and surgically replaced every 5-7 years. And since being a woman brings up more stuff....I am on HRT for a full blown hysterectomy and a 4.5 pound tumor extraction too. It's been a year. No sleep, insomnia, HRT changes from synthetic hormones to bioidentical. Bioidentical and the Pump make me feel like a WOMAN who's HUMAN for the first time in YEARS.
And I don't have to wait till age 50 for other health needs either since my adoption secrets came out.....and I am now infected with more incurable diseases.....happy as a lark about it all....because life will go on.
I am thankful that Daniel and I can move ahead in this crazy crazy crazy life and still be the best kids we can be, no matter what. Age is a number. Diagnoses and treatments are labels and stuff done to us. They do not define who we are and that's all I need to say about that. :P
Enjoy your son. Let him enjoy his nephew, and his LIFE. LIFE matters. Since losing my best friend to suicide a month ago...I know what life means. Lost lots of people in my 33 years of life. But I keep going. To quote the men I look up to:
Case of the incurable optimist: Michael J. Fox
Welcome, welcome welcome!: Montel Williams
Go Forward: The amazing and late Christopher Reeve
These men all represent me in the Disability world, and over half of the world at large has no idea who they are. Too bad. They are the best men I will ever be connected to in my life and passing when that day comes.
Cheers Daniel and Melanie! Hugs to you both for doing the best you can! :)
LOVE, LOVE the pic!
And we just started Baclofen and I'm worried sick over what it might or might not due...guess we'll just wait and see.
Melanie,
Which Dr prescribed the meds for the spasticity? One of Memphis's therapists mentioned meds once but we have not discussed it since. We are seeing a physical med and rehab dr next month and I was wondering if that was the right Dr. to talk with?
Kind of funny, I use you and Kerri as guides sometimes. I look at what youa re doing and what you have done with your boys and it gives me ideas and hope for Memphis.
I love that picture by the way.
Michelle
love that picture -nicole
Michelle- Memphis' Mom
We spoke to the neuro first just to check how these types of meds would work with Daniel's seizure types. I didn't want to put him on anything that would risk getting more seizures. He told me his thoughts on it and said to talk with our physiatrist (pediatric physical rehab doctor).
Hope this helps. I did learn that some lower the threshold for seizures, so if you are looking into this and the child has seizures, let it be known. :)
What a great picture -- this one and your Wordless Wednesday's. Wow, what a sweet punkin.
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