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Medical Treatments for Spasticity:

Many of the children take medical treatments to reduce their spasticity or to prevent contractures. The first method usually tried is Botox injections into a specific muscle or limb. Botox injections can also be used to see if surgery will be effective.

Botox injections are nerve blockers, similar to phenol injections but safer in most applications. Because it is reversible (it wears off in a matter of months), it can be used as a rough predictor of muscle- and tendon-release surgery. It is not considered a long-term fix for orthopedic problems but shows promise as a means to delay or minimize surgery.

The following are links to the information on medical treatments for spasticity which are in the book "Caring For Your Child With Hydranencephaly"

Chemodenervation
http://www.wemove.org/spa/spa_cd.html 

Botulinum Toxin Type A
http://www.wemove.org/spa/spa_bot.html 

Phenol and Alcohol
http://www.wemove.org/spa/spa_pa.html 


Baclofen

Baclofen is also commonly used in children with Hydranencephaly. 

This is general information about Baclofen. Baclofen can be given orally or by intrathecal (into the spinal cord) pump. If a course of oral Baclofen shows that the child does respond well to it, then a pump is considered.

 (A few children with Hydranencephaly are using Baclofen successfully.  Your child’s physio, occupational therapist, or Dr will be able to give you more information as to whether it’s appropriate for your child.)


Intrathecal Baclofen Pump System
http://my.clevelandclinic.org/devices/Intrathecal_Baclofen_Pump_System/hic_Intrathecal_Baclofen_Therapy_for_MS.aspx

Baclofen & Botox personal experiences:

Logan, age 5: Logan takes 10 mgs. baclofen twice a day, but still has tightness in his elbows and shoulders.  His head control is good on some days, and bad on some days, so it's hard to say if the baclofen has had any effect on his head control.  He has also been taking Zanaflex to try to help with his muscle spasms at night, but neither it nor the Baclofen seem to helping with the spasms at the present time.  We did note that Logan's seizures returned, on a limited basis, when he started taking baclofen. Instead of raising his baclofen dosage, Logan will be getting Botox injections next month to try to help his tone and range of motion in his arms and shoulders.  His doctor will reassess the need for baclofen after we see how the Botox does.

Jason, who died recently at the age of 3 1/2: Jason was on oral baclofen for about the last two years of his life. It was recommended by his PT and we had no problems getting our pediatrician to prescribe it. At first, it made Jason very sleepy. That lasted about a week. After that, it didn't knock him out anymore. Well, except for one more short period, when we had to increase the dose. The sleepiness only lasted three days that time.

It loosened him up very nicely. In fact, on both trips to FL, everyone was commenting on how loose Jason was. It didn't have any effect on head control, which was actually getting better and better. A better way to put it is that even though it loosened Jason up, it didn't have any ill effect on his neck muscles.

The baclofen allowed us to dress Jason more easily, and to expand his range of PT activities. I loved it!

The only bad things I can think of is that many states won't pay for compounded medications and oral baclofen has to be compounded. MS is one of those states but somehow, the state ended up paying for it anyway. We had a co-pay of 410 but that's not so bad. Now that I think of it, I don't know if Medicaid paid or our private insurance paid, but I think it was Medicaid. Because it is compounded, a lot of pharmacies won't carry it. Surprisingly, Walmart, CVS, and some of the other "biggies" turned us down. It seems the small hometown pharmacies are more accommodating.

Another thing is that it has to be kept cold. When we traveled, we carried a small cool pack for Jason. We would pre draw the day's dosage so we didn't have to keep opening the bottle on the car trip. Actually, we did that with all Jason's meds for long car rides as it just made it easier.

Oral baclofen is very thick and syrupy so it was a little hard to draw the last of it out of the bottle. But the pharmacist gave us a special cap, kinda like an adapt-a-cap, that made drawing it up pretty simple.

We did ask our PT about the pump but she thought oral was a better way to go with Jason. I don't know why-perhaps age and/or body weight/size. I'll try to remember to ask her. We've become very close friends and hang out together whenever we get the chance.

A follow-up comment: "Most families just crush or dissolve the baclofen tablet and give it orally or via the gtube. They don't need to get it compounded.

Jonah, age 3: Jonah has had oral baclofen since 6 months or so. He is very spastic. I guess it has helped. I can't imagine how he would be without it. He will be getting a baclofen pump in March. Botox did nothing for Jonah. Daniel (Jonah's brother who died recently at the age of 9) had botox in his arms and it worked wonderful.


Carly, age 10: Carly has had several botox and phenol injections in her 10 years.  We generally liked to see the relaxed big muscles, but the injections always made her seriously ill.We decided that she must be allergic to either or both of the medications because her digestive system would shut down and she'd have to hospitalized for nausea, dehydration and constipation immediately following every treatment.  It also had to be done under general anesthesia, which was very hard on her.

Overall, we liked the results (after the trauma of her treatment would pass).  She even had serial casting after a couple of treatments that proved to benefit Carly's feet.  We just don't think Carly can take it anymore.

Besides, our very favorite doctor, Dr. Elizabeth Moberg-Wolfe, moved her practice up north to the Chicago area (I believe) and no one else comes close to her way with Carly.  So, we don't even have to consider any more botox for Carly at this point in time.

Sky, age 5 1/2: Sky was put on oral baclofen when he was 5 months old. He is exceptionally tight. Before the oral baclofen he had no ability to move at all, only eye movement! The oral baclofen made a huge difference, but he was still very tight. Botox didn't help him much. He has had the baclofen pump for about two years now and it has been a miracle for him! We love it! He is so relaxed now, unless he is cold or stressed. It has even taken away his clonus.

Mason, age 3: (Sky's brother) Mason has been on oral baclofen for about two years. He has had her first high tone, then very floppy, and now is getting tighter again (can't make up his mind, I guess) He is on baclofen to try and help with clonus and tremors, which he ahs to the max. He will be getting a baclofen pump in the spring.

Noah, age 3 1/2: Noah has been on oral baclofen for a number of years now. He has a pill, which we just dissolve in water and put down the gtube. At first it did make him sleepy (like many of the other meds) but he got used to it after a week or so and it helped him to be a lot looser. I have heard it does increase seizures, but he has been on it so long now (probably 2 years of more) that I don't remember his seizures increasing around that time-seizures are just something that we have to deal with all the time with him anyway.

I definitely think it has been one of the best meds for Noah and know he would be very tight without it. We can now get him to turn his head both ways whereas before it only went one way and can get him to stretch his arms, hands and legs out straight.

Nikki, age 6 1/2: Nikki has been on Botox since she was about 6 months. She has had injections in her thumb spaces, elbows, shoulders, hips and knees. It has always worked miracles with her and given her much more ROM! She gets injections every 6 months or so, we can tell when it is time to go again, and it is virtually pain free as we always put emla cream on her for a good hour before the injection. We have never been on baclofen as there is a threat of her seizures increasing with it, and the botox has always worked.


Heather, age 4: Heather had botox last year and oral baclofen.  The oral baclofen was in a sufficient dosage to mess with her seizure threshold, so we had to lower her dosage.  Unfortunately, it went so low that it wasnıt really doing her any good, so we stopped.

Last January she had botox injections in her legs.  It really seemed to work well once it took, but it takes 2 1/2 to 3 months to kick in and then it starts to decrease again a couple of months later.  We didnıt get back for another injection due to unrelated health issues.

Heather had CP clinic today and she has been certified as a candidate for the baclofen pump.  Yea!  Dr. Kim says she never does baclofen pumps on the first date, so we have to go back in 3 months.  In the meantime, we have some information classes to attend to learn all we can about intrathecal baclofen. She said the general procedure puts the pump flat against the abdomen and then leads go into the csf of the spine (about the 10th vertebra).  Most of the effect will be on the legs, with only about 10% to the arms.  I told her that I was really hoping to free up her arms so she could activate her toys and communication devices (switches).  Dr. Kim says there is a new procedure that runs a line to a higher vertebra, but some studies show that it increases the curve of scoliosis (which she is already starting).  But, she says, other studies show that it has no effect.  She is not sure that they would do the new procedure because no one has really studied up on it there yet.  Something  may happen in the meantime, but as it stands now, after the educational courses we will meet up with the doctor.  She will review and then schedule the surgery.  She will give botox injections for Heatherıs arms to help them release a bit.  We are also trying to get Comfy arm splints (Goniometer model) to help keep Heatherıs arms open.  (I think thatıs what they were called...) 

Kayda, who died in 2000 at the age of 11 1/2: Kayda's experiences with botox and baclofen were a bit different than the others. I heard about botox on the internet when Kayda was about 8 years old. I asked her orthopedic surgeon about using it on her hands and wrists so that they wouldn't be so tight. But, he said that it was the tightness in her wrists that actually kept her hands open so that she could reach out and touch things. If we took that away she likely wouldn't have been able to use her hands as much as she did. Since that was something important to her we decided not to take it away. I just kept up with putting splints on her hands over night.

We tried Baclofen a couple of times for Kayda. One time was just after her first hip surgery in the hopes of reducing the spasms she was having. After one dose of baclofen she went absolutely wild. One day after major surgery with these huge casts on her legs she was kicking and moving so much she was lifting her legs off of the bed and sitting up and yelling. We tried it another time in the hopes of it helping her sleep at night and got the same sort of reaction as the first time.

I'm not sure if Kayda's extreme reaction to baclofen had anything to do with the fact that she was given an overdose of it when she was 4, right after I first met her. She was given someone else's medication and an overly large amount. It put her into a coma and lowered her heart rate to the low 30s. And, it made her throw up and she ended up with aspiration pneumonia. It could have been this over exposure that caused her response to it in later years.

Other pages in this section:
Cerebral Palsy
Orthopedic Considerations

Orthopedic Surgery links and resources
Orthopedic Surgery Personal Experiences

Therapy for children with Hydranencephaly
Range of Motion Therapy
Other Types of Therapy

Principals of Positioning
Positioning: Orthotics and Splints
Orthotics and Splints Experiences

Equipment
Wheelchairs
Alternate Positioning
Standers

Personal Care: Practical Information
Practical Care: Transportation
Practical Care: Carrying and Lifting
Sleeping Medications

Glossary

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August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

Please report any broken links or missing photos to angelbearmom@shaw.ca