Tuesday, May 12, 2009

I need some advice and lots coming up!

I am wondering if anyone has any experience with Botox injections for their child? Gavin's neurologist is suggesting this for him. It supposedly helps with kiddos who have issues with high tone in their muscles.

Gavin is low tone in most of his upper body, which is partly to blame for his inability to have good head and neck control or to be able to sit up on his own. But, he has very high tone (stiffness) in his lower body, due to the stroke that he suffered. This also makes it hard to learn to sit up on his own because he is so stiff. The two in combination are not a good thing! You have to physically bend him at the waist to get him to sit on your lap and it takes a lot to bend his knees, as well, to change him. He always sits with his knees out straight and slides out of a sitting position constantly. It really tires you out to hold him for a long period of time because you have to keep him up in a sitting position with lots of effort. It's difficult to explain, but it would be wonderful if Botox could help with this!

I'm just wondering if this would help? I don't want to put him through the injections if they don't help much. And, are they even healthy to take? If any of you have any info on this, I would really appreciate your help!

Gavin has some other things coming up as well. I have to get his blood drawn to check his thyroid level. He takes daily Synthroid for hypothyroidism, but we are wondering if he is getting too much of the medication right now and this is attributing to his recent weight loss? I'm hoping it's an easy fix like this, because I hate seeing him so thin and not knowing what the problem is!

Gavin's wheelchair is finally coming in tomorrow! It has taken about 11 months to get it in! They call it a stroller and it pretty much looks like one too. It will be necessary to have if he goes to school next year and especially if he rides the bus, because it is transit ready for safety. Don't even talk to me about school and bus riding though! These two topics scare me to death! I am so torn on what to do with him next year! I know that school would be good for him, because he would get so much more therapy from teachers who know what to do for little ones like Gavin, but the thought of sending him away from me when he can't talk or do anything on his own really worries me! Plus, there is the higher risk of him getting sick factor to think about! And riding a bus on his own?! This worries me even more! The problem with driving him to shool myself is that the times are the same times that I will have to drop off or pick up our other boys from school. Anyway, I have time to think about all of this, but I don't want to!

Gavin's P.T. has also helped us in getting some other new equipment ordered for him. It will probably take forever, like the wheelchair, but we are looking forward to getting it. Hopefully they will help to further the progress that Gavin has made over the last couple of months.

We ordered a new chair for him. It's called a Tiger chair. It can raise up to table level or go down to floor level. This will be great for use at the kitchen table and for playtime! Hopefully he likes it better than this chair that we tried him in at his school!

We also ordered a stander for him. He needs this to help build bone strength, since he obviously doesn't use his muscles or bones like an average child of his age. He is also being fitted for AFO's to wear while in the stander. They are like braces to help keep his feet and heals in their right position. The stander that we ordered is different than this one and hopefully he likes it better than he did the one we tried him in at school!

I'd much rather see Gavin happy like this!

So, there are lots of exciting and scary stuff coming up for Gavin! I'm praying that it all works out and benefits him in a positive way! He has really made some exciting advances in the last few months and I can't wait to see what the future holds for him and us!

"For I know the thoughts that I think toward you, says the Lord, thoughts of peace, not of evil, to give you a future and a hope." Jeremiah 29:11


Lacey said...

Ok, were do I start? Jax has a stander and little daffo's for his feetsies. Their hips will get loose if we don't stand them up every day (aghm, yeah sure I do it everyday) What kind of stroller are you getting him? Jax has a kimba ordered, and we are waiting impatiently for it to come. Jax is supposed to go to school because he is 3, but his ped wrote an order for home school because he is just to fragile for a classroom. Can your ped write this for Gavin to? Does he have therapies already? His preschool only comes to the house like once a month, but he has private OT and PT anyway so I don't care that much.
My friends little girl has had botox injections in her salivary glands. Its painless, because they sedate them. She goes home the same day. They have worked well for her, she's had it done twice. I will have her come here and leave you a message about it. Or you can email me and I will have her email you. laceyrugg@hotmail.com, Hugs from me and Jax

Marissa said...

First, I wish I could help more with the botox. Marissa had botox injections in her salivary glands one time last August when we thought she might be aspirating on her saliva. I did not see a reduction in the amount of saliva she had, but she was never a drooly kid to begin with. I have heard of the injections being given to kids with muscle tone issues, but have not heard how successful it was.

I'll be praying for Gavin and all the upcoming things going on. Sounds like you guys have a full plate!!


Anonymous said...

Alicia, I used to work for a dermatologist, and she did give Botox treatments to adults. I have sent her today's blog, and maybe she will have a comment for you. It might take her time to get to the questions, and time to give the answer, but I promise to share what she says. :-) God bless your day and your whole family! Marilyn, in Auburn Hills

Hope said...

I wish I had advice about botox, but I don't. I do, however, think it's great news about his wheelchair, Tiger Chair, AFO's (which we may also be getting), stander and whatever else will help him.

Have I ever told you how CUTE Gavin is? OMGosh, he's adorable. I could kiss his cheeks!

I'm praying for a quick, easy fix on his weight loss!!

Jessica mommy to Alex/ RTS said...

Change is always exciting and scary at the same time!
I wish I could help with the botox, Ill be intersted to know what comes of this, I do hope it helps!
Thinking of you!

Anonymous said...

You might want to talk to the ENDO about the botox. I know that sounds weird, but they usually have lots of info on that sort of thing. That is actually who talked to us about Botox for Christopher. - not the neuro. We decided not to at the time. You might also try your local CP clinics/ group. Thos are the kiddos I have heard using it the most.

Christopher was put on medical homebound for school. I would think that there would not be too many problems getting a doc to write for the same for Gavin.

I am going to end up homeschooling Christopher myself. Our school district is literally the laughing stock of the state. Right now, we are 5 months out of compliance with his IEP - it was supposed to be done in December. So, I can't help too much with that.

I think each state is required to provide a Parent Training Group to comply with NCLB. You might search for yours or there may be alink on www.yellowpagesforkids.com
In IL, MOST of the the classes/seminars through them are free. Here is the link to ours: www.fmptc.org While some of the info is State specific, there should be enough there that is general.

Good luck, and let me know if I can help at all!

Steph and Christopher
www.carepages.com OurLittleMan

Cammie Heflin said...

Your house is going to look like ours! Addy hated her stander and gait trainer at first. Now she tolerates them very well. She hated her AFOs too, now she helps put them on and she is now standing on her own if she's leaning on something. I know her tone is different from Gavin's but I'm so glad we kept trying!

BTW I LOVE his smily face!

Inspired said...

The only experience I've had with Botox is in an adult with back pain. It did really help her, but again not the same. I've heard/read that Botox is used much, much more for medical uses than cosmetic uses.

Good grief, you have a lot coming at you. My thoughts are with you that you find the answers you need to know you are doing the right things for Gavin!


ANewKindOfPerfect said...

We don't have any experience with botox, although I know that the ortho tomorrow is going to mention it for Peanut's ankles. We have a stander, a gait trainer, and AFO's. I hope he tolerates them better than in those pictures. Although I have to tell you, he is so adorable even when he's mad!! :)

Anonymous said...

I had heard something recently about Botox being dangerous for children with some kind of special needs (I can't remember which one). I would suggest doing serious research on your own and ask a lot of questions before you do it. It may be fine but better to be informed and know what to expect. Glad Gavin has been staying pretty healthy lately too. He is adorable. I wish you the comfort and support throughout all your days.
a friend from church

Gripping Mercy and Grace said...

Hey there! I am so sad and excited when I read this post... lots going on, lots to think of and lots to pray about! I have looked into the botox thingy and found two really helpful pages this one...
Here you are offered alternative choices

and this one, here is a quick glance with a comment I thought was good advice...
Botox helps kids with CP (no, not with wrinkles)
Thursday February 9, 2006
Although it's mostly known for smoothing the faces of aging movie stars, Botox may have a more noble use: helping children with cerebral palsy gain normal movement by weakening stronger muscles and strengthening weaker ones. According to a pediatric neurologist at Duke Children's Hospital in North Carolina, the drug forces the stronger contracting muscles to relax, a condition that lasts for a few months. During that time, physical therapists can work with the child to develop the weaker muscles that control extension. Although it's not appropriate for all children with CP, the treatment may help some move normally.

One moms comment:
My daughter has been using Botox for several months. The one thing to keep in mind that I was not told about, is that after injections, you should have your child in extensive therapy. I was told that without the extensive therapy and stretching, that you are pretty much wasting your time and putting your child through unnecessary pain because the muscles will go right back to the way they were before the Botox. Maybe this is why my daughters’ seem to be wearing off too fast.

I don't know much about it, just from what I've read and like anything the more you know the better advantage you have in suggesting other ideas to your doc and being a well informed advocate for Gavin.

What stander did you get??? Abbs has the AFO
s and just got fitted for her second pair this past week. We have not put her in her walker due to her circulation issue and are waiting on a new seat that is skinnier and hopfully won't cut on blood flow to her legs (thus the purple spots)

Oh prayer and decisions.... Don't you wish you could throw all this on your parents... At times like this I don't wanna be a parent, this responsibility is too much! I will be praying for you sweet friend!

Oh the school thing... We moved Jacob and Joey to a new school where I knew they provided classes for special needs kids. This way they were all at the same school and bonus... it was not too far away from our home. I was really nervous about the school bus thing, very upset that I was not allowed to go on the bus with her (legal issues) but the gals that came were extremely sweet and the buss was so tiny and cute, like it was made just for her!! I cried and took so many photo's the 1st day she went and then I was good there after. The best was seeing that little bus pull up to our home and unload my angel and see her smiling or zonked out from exhaustion! Call me I'd love to chat more on this...

Happy belated Mothers Day sweet girl! I hope your day was special... I expected too much and got burned! Ops....

Love ya!

Michelle said...

Ok, so I've been trying to leave you a comment forever on this post, but UGH---anyway, here goes, My cousin's little boy has CP and he was getting the botox injections and they worked miracles for him. They only have medicaid and now medicaid won't pay for them so they are looking into other alternatives. HTH.

I so know where you are coming from about school. I am really not jazzed about sending Lillian to developmental preschool at age 3. I'm really undecided at this point. If you asked me today I'd say no, but I'm in the same dilemma.

Princess Abigail said...

Thats lots of exciting things for you on the horizon Gavin! What an exciting life you lead! I love your beautiful grin!

Cathy said...

What an incredible busy week for you. I have heard of the botox but not with Annabel so can't offer any help. When you get Gavin's stroller/wheelchair can you post a picture for us to see.I love how you tell your story with pictures.
Putting our babies in school is scarey but with Annabel it has proven to be a wonderful experience. But I would probably pull her from school today if she didn't have the teacher she does.
We tried the bus and I was so scared about a wreck, she needing oxygen, gaggin and no one helping her. She is eligible for nursing to ride bus with her and go to school but I love her being in her teachers direct care. The school is close to our home so I drive her. I will be praying for the choices you will be making.
Thank you for faithfully following Annabel's blog. Give your prince charming a huge hug.