Botox

Alex had his botox shots today. His physical therapist recommended 8 shots on the inner thighs to relax the tight muscles. This should help him stand more erect.

Botox Injections to Reduce Spasticity - from Boston Children's Hospital

A child with spastic muscles (tightness) finds it hard to move. As the child gets older, contracture (permanent tightness) of the joints, and deformities of the spine and limbs may develop. Usually spasticity is treated with physiotherapy, bracing, and surgery. Botox injections are another way to deal with muscle spasticity.

How does Botox Work? The "tone" of a muscle -- how floppy or tight it is -- depends on the nerve impulses (messages) which reach the muscle from the brain. These messages are carried by chemicals in the nerves to that muscle. Botox is a substance which blocks the chemical message before it can enter the muscle. In this way it prevents the muscle tightening which results in spasticity. Botox does not cure spasticity. The "block" is most effective 1-2 weeks after the injections. Three to six months later the spasticity usually returns. We do not usually recommend more than 2 Botox injections into the same muscle.

What are the Main Benefits of Botox? a) Botox injections offer a chance to see whether reducing spasticity in a muscle makes a big difference for your child. If it does, you may want to consider the more permanent solutions which surgery offers. b) Botox is also useful before a new treatment like a brace or splint. Bracing a relaxed muscle helps prevent contractures. This is easier than trying to "undo a contracture, therefore, younger children benefit more than older children.

How is Botox Given?Botox injections are given in a room in the Orthopaedic Clinic. The place where the Botox will be injected into the muscle is marked, by your doctor, with a pen. This area is covered with a cream called "Emla" which numbs the skin. The orthopaedic surgeon injects Botox through the skin into the spastic muscle fibres using a very fine needle. Most children do not feel pain or even remember the injections. A nurse will stay with you and your child until the procedure is finished. The procedure takes about 2 hours to complete.

What happens after Botox Injections? Your child can go back to his/her normal activities. Avoid bicycle riding or climbing --may be a little unsteady for a few days. Some children require a cast to help stretchout tendons and muscles. This is usually put on 1-2 weeks after the injections. Your child will return to his/her therapy program. The therapist will work on the particular muscle injected, as well as, encourage new skills.

Ice Cream

Ice cream! Yes Alex is back to liking ice cream. This week he came home from school with a note saying Alex had had an ice cream Sunday and really enjoyed it.

So that night we asked if he wanted ice cream. A strong quick shake of the head let us know he wanted ice cream!

Next morning as I was asking him if he wanted bacon - no; sausage - No!; he grabs my wrist and pulls me over to open the freezer. Once open he points down to the Blue Bell ice cream.

No way! Sorry my friend, no ice cream for breakfast.

He continued to ask for ice cream the whole week. He even once agreed to pull in to DQ for a Heath bar blizzard. It has been 3-4 years since he showed interest in ice cream.

To funny. Change the meds, change the appeal of various foods.

Whew!

Made it through a night without seizures. Alex looks good and ready for school.

We had a triple play weekend. A seizure Friday AM of course but then he made it to school. Then 11:30 and 5 AM Saturday so he got DIASTAT and slept till 2 PM

Then Sunday AM another one in the early morning, but he got up by 11 AM. Thankfully none last night so perhaps you will have a good day.

We did get to go looking for trains yesterday. But we only saw a couple stopped ones. But Alex did enjoy the cows and has decided to once again ‘talk to them’. Alex hangs his head out the window, says, ‘Uhhhhhhhhhh!” and then follows with a big ‘COW!’

Marycke and I have noticed with the change of meds Alex seems to want to communicate more. Then yesterday he mad coffee on his own (a little strong) and then spend most of the evening in front of the oven getting whomever would walk by, to help him set the timer. He would watch it count down and then 2-3 minutes later get the beep! Then reset it to go again. For sure he did that for more than 2 hours last night.

Double Seizure Morning

Well, no DIASTAT on Friday AM, but this morning he had seizures 1:30 AM and again at 6 AM, so Marycke has given him DIASTAT. Guess we will have a quiet day at the Sahver house.

Yesterday he had a seizure 6:34 AM but was up later and able to go to school. Once he got home, we got a visit from Jennie. She is his case worker for Hill Country Service. They provide him with his medicaid.

Of couse with those fingers forming an 'M' and pinting down I knew he was mor einterested in going to Mac Donald's then getting his picture taken.

Sunday training

Although very cold overnight, this afternoon the sun has come out and Alex and I enjoy watching the trains. They move rail cars of lumber every Sunday. So we get Mac Donald's and then hang for a couple of hours.

Doctor's visit

Today Mom and Marycke are off to see Dr. Szabo. They are going to review the weird blood levels. And as it turns out they decide to take Alex off Trileptal and put him back on Felbatol.

This will take nearly 3 months. We did have good control in years past. But then there were safety concerns.

So after 2 hours they finally got to see the Doctor for 20 minutes or so.

Seizure Day

Well just could not wait for his visit to the Doctors. Alex had a seizure over night (11:30)but just one. Marycke gave him DIASTAT.

Tomorrow we see the Doctor.

Helping out

Alex enjoys suing the blower or running the lawn mower. Here he is helping Mom with the leaves.

Much Improved

Alex is much improved. After the blood test Monday he seemed to perk up. It also sinc ehe has returned to school. Maybe he was just too comfortable here at home. Maybe we let him sleep too much. Whatever it was, he seems to be returning to his normal routine.

Wednesday, horseback resumed. Alex again gets to ride Cheyenne. Marycke helps out by walking along side. They see to have a good time.

Not so great

Another day without seizures but maybe Alex is having little ones we just can't see. He seems to be sleeping a lot. Like 14-16 hours a day and is drooling a lot. He does not want to watch trains, do puzzles, eat, drink ...

No talking. No alllll rights!. Just a lot of leaning, drooling, and eye fluttering. We miss our happy buddy!

Maybe his meds are out of balance? Marycke is going to get a blood test tomorrow.

Morning Moanings

It's early on a Saturday morning. Nearly 4:30 AM. I am working in the offie and as always I have the intercom on. I here Alex russling in his bed. It is getting louder and louder. Now he is snorting. Bummer! First day of the CHrsitmas holiday and he is having a seizure. I am up out of my chair, through on the hallway light, trying to decide whether to wake Marycke or allow her to sleep. Into Alex's room I barge, throw on the lights, and whoa! He is sitting up in bed, no seizing but laughing. I guess he had passed some gas and was laughing - not seizing. So off go the lights. He gets a little back rub from Dad. And I am back in the office. Thankful that there was no seizure and we all may have an enjoyable Christmas. We hope you all have a great time as well.

Seizure Monday

Well we made it through the weekend but now 5 AM Monday morning and Alex is seizing. He had crawled into bed around 3:30 AM. I tried to get him to go potty forst but he refused.

So of course now he is seizing and wetting the bed. Looks like another weekly trip to the Wash Cycle to wash the kingsize mattress pad.

Marycke gave him 20 mg DIASTAT. No more seizure till, 3:00 PM. Hmm, that is unusal. So he gets another 10 mg.

We got him dress and hopedd he would be ready for school. He had slept through the night and remainded home all day Tuesday.

Another Monday Moaning

Well we made it through the weekend - no seizures. BUt 4 AM this morning he had another seziure. Marycke gave him 20 mg DIASTAT. No school.

We did have a fun weekend watching trains and planes. It was a nice December, South Texas Day, you know, mid 70s. So we went to the TTM and rode the train. Alex also likes the scale model trains inside.

But I guess weekly seizures remain the 'name of the game.'

Making Coffee

Not only does Alex like to drink coffee, he enjoys making it as well. Here is the video.

Nice week

Alex is doing well. He has been sleeping in his own bed. Eating well and generally been in a good mood. He did have nose bleeds Wednesday and Thursday but they were easily stopped.

Nose Bleed

The weather must be getting cooler and dryer. Alex has had several nose bleeds. Here is his note from school.

Neal & Marycke,
Hi, Alex has been working great at McDonalds and MacArthur Park Lutheran Church. Today he had a nosebleed and got some blood on his clothes. I wanted to tell you so you would not worry. Alex has been asking for a coke at the MacArthur Park work site every time he is there so we are working on using vending machines for our break.

Enjoy this great day,
Linda Higgins

Eye Fluttering

Alex continues with weekly seizures. Usually Saturday night or Sunday AM. Quite often while watching trains or doing a puzzle, he will stop, flutter his eyes, and then resume what he is doing. We are checking with the Doctor to see if these are peti mal seizures. You may be able to see it here on this video.

Horseback

Finally, after nearly a month we got to take Alex for hippo therapy. He really enjoys the horses. It is cold but other than beign distracted by the trains he is doing well.

Seizure Saturday

Well for a change Alex had seizures on Saturday. He had a mild one around 2 AM and then a stronger tonic clonic at 7:20 AM. We held off giving him DIASTAT and he slept till noon.

Now he has been up enjoyimg a toasty fire while doing a puzzle. Neal and Alex have watched a little football, made and drank coffee and just picked up Sonic for Alex. He loves those foot long cheese dogs and tator tots.

Happy Thanksgiving

Alex enjoyed a great turkey day. He got to have both his sisters come home and then dinner with Grandpa.