Today was Jacob's 1st appointment with the Physical Medicine doctor. I really liked her. She gave me 2 options for medications to help with his spasticity. The 1st medication is Valium (I did not know this was used for anything besides a sedative and anxiety medication). The 2nd is more common, baclofen. Because of Jacob's seizure history and the fact that I don't feel that his absent seizures are under control, baclofen was not the best option for us. She told me it works with the muscle tightness, but it tends to increase the occurrence of seizures. She said the Valium would help with the tight muscles and help control the seizures. The down fall is we wanted to get him off sedative medication....including the one he is currently on (klonipine). She really pushed the Valium though, so the plan for now is we are weening of the klonipine to once a day at bedtime...she said it will help him stay asleep at night. He currently takes the klonipine 3 times a day. So, we will be replacing the klonipine with Valium 2x a day. What is nice is that it will be in a liquid form, so I will have less pills to crush and now his afternoon meds will only be 2 medications instead of 3. We follow up in 2 months. She also said the next step would be botox in the tightest muscles if the Valium was not working good enough. I have a feeling he will end up with the botox in the back of this thighs. They are the worst. I have done a lot of research on botox and I am a little afraid of that too...but I guess every medication has it risks.
The 1st thing they did when they came in the room was offer to order a new piece of equipment for Jacob. LOL I think they must be getting a cut for everyone they refer...the person that created them is from Virgina and tha is where she is from. :-D It is still a neat concept and heck if I don't have to pay for it, what would it hurt....kinda wish I had this when he had the long tube hanging form him though it would have been perfect...so for all you parents out there with kids with g-tubes check this thing out. It is used to make sure the g-tube is safe...helps prevent little ones from pulling it out, contains long tubes, and help when your child is on the floor or in a piece of equipment that it can get caught on. I am going to call gis medical equipment person tomorrow and see if they can get the process going. I want it just for when Jacob is in his stander or gait trainer. The mickey button tends to get caught on trunk support. On more than one occasion I have seen the tube bent and ready to rip out.
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| Picture from the website |
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Here to see the website for this item. It is called a Benik G-Tube Protective Belt
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