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"
Botulinum Toxin Type A
Baclofen is also commonly used in children with
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 childs physio,
occupational therapist, or Dr will be able to give you more information
as to whether its appropriate for your child.)
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
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
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
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
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:
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
Personal Care: Practical Information
Practical Care: Transportation
Practical Care: Carrying and Lifting