Cerebral
Palsy & Spasticity -
Frequently Asked Questions
BOTOX® What are the risks? There are minimal risks to using BOTOX® when administered by competent
professional staff. There is some chance of being allergic, but there have
been no reported allergies to BOTOX® in over 30 years of usage. There is
always the chance of a small blood clot and/or infection occurring from the
needle stick, which in our experience has never occurred (1,000s of
injections). Although BOTOX® (Botulinum toxin) is the most deadly
substance known to man, when used in small dosages in the right muscles, it has
essentially no threat to the body in general.
The reason people have been injured or died from Botulinum toxin in the past (botulism) is that they
consumed excessive amounts of the substance from spoiled food
unknowingly, causing a life-threatening overdosage and
poisoning. We tell our patients that there is some comparison to simple aspirin. If one takes just two
aspirin for their headache, then there is no problem. If one takes a whole
bottle of aspirin, then it becomes a poison and causes a life-threatening
situation. In simple words, BOTOX® taken in small dosages (not more than 10
to 12 mouse units per kilogram body weight) is very safe. What are the benefits? BOTOX® injections can be completed within about five minutes in the
cooperative patient. Injections are generally placed into no more than two
or three different muscle groups at a time, creating a significant local
effect. This causes spasticity reduction in the muscles injected for
approximately three months, allowing improvements in range of motion and
function. If significant stretching occurs during this three-month period,
then tissue lengthening can occur and there can be a permanent improvement
in range of motion function even after the BOTOX® wears off. Children and
adults can go to therapy, play in sporting activities, or participate in
other extracurricular activities the same day of their injections. BOTOX® is
also FDA approved and quite helpful for individuals with spastic
torticollis and some other less controllable movement disorders. Why choose BOTOX® over intrathecal Baclofen (the Baclofen pump-ITB) or
selective posterior rhizotomy (SPR)? BOTOX® is only chosen for two or three select
muscle groups at a time. Commonly, BOTOX® is injected into the hamstring groups and/or the calf
muscles on both sides to improve walking and/or sitting and self-care
skills. The Baclofen pump and selective posterior rhizotomies are for
treating more diffuse muscle spasms and essentially all the muscles of the
trunk and lower extremities at the same time in a more widespread manner.
One cannot inject this many muscles at a single time with BOTOX® without
causing undue harm to the individual. Thus, BOTOX® is for just two or three
select muscles at a time, whereby the other treatments discussed (ITB and
SPR) are more for diffuse spasticity and muscle involvement. How much does it cost? BOTOX® is quite expensive. When we
purchase the substance from Allergan Pharmaceuticals, the cost is at least $365 per
milliliter. It is not uncommon that 3 or 4 milliliters are used at any one time in an individual. What about outpatient
therapy after BOTOX®? There is often physical therapy and/or
occupational therapy two to three times per week after local BOTOX® muscle injections. This is basically for
intensive stretching to increase tissue lengthening and improve function
during the time the BOTOX® is active (the first three months). Often
outpatient therapy can include serial casting of the feet or hands into a
maximum stretched position. This includes changing the cast every week with
increased stretch through the soft tissues in an effort to increase the
length of the muscle gradually over time. It is not uncommon to prescribe
new foot orthotics and/or modification in addition to hand splints to the
extremity, post BOTOX® injections, to improve function. This would be a
decision between your physician, family and therapy staff.
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BACLOFEN PUMP
(INTRATHECAL BACLOFEN - ITB)
What are the risks?
If administered by competent professional staff, the risks associated with
intrathecal Baclofen (ITB) are minimal. In our opinion, there is less than
one percent chance of serious lifelong harm if all team members perform
their duties correctly. Specifically, there is a less than one percent
chance of delivering excessive intrathecal Baclofen (overdose) causing over
sedation, depressed breathing, and sometimes requiring an Intensive Care
Unit stay on a ventilator until the medication clears the body (about 24
hours). There is a less than one percent chance of having an infection to
the spine and/or brain causing meningitis or encephalitis and further
physical and mental limitations. There is a less than one percent chance of
a serious seizure compromising the airway and/or breathing mechanisms,
creating further impairments. There is about a five percent chance of having
an infection of the pump that requires immediate removal without spread to
the brain and spine and without further injury. In this case, a new Baclofen
pump is often replaced in about three months after there are no clear signs
of recurrent infection. There is about a ten percent chance of having the
catheter kink as it enters the spine, creating a lack of flow of Baclofen
into the spinal fluid. This can cause increased spasticity again and a loss
of function temporarily until the catheter has been repaired. In our
experience, this has not been a major problem but certainly an
inconvenience. There is some chance of
having a Baclofen withdrawal reaction and a seizure (less than one percent in our
experience) when the catheter kinks. What are the benefits of
the Baclofen pump (ITB)? The Baclofen pump only takes about 50
minutes for the experienced surgeon to
implant with no major incisions into the spine
and/or body cavities. In comparison, the operative time for selective posterior rhizotomy (SPR) can
be four to six hours, depending upon the number of nerve rootlets severed.
The children and adults generally recover more quickly from the more minor
surgery, allowing for more aggressive early therapy and home dismissals. The
Baclofen pump is completely reversible, and thus even if it does not work to
one's best perceptions, it can always be removed. One can gradually increase
the pump dosage over time, taking away as much tone or spasticity as is best
for the patient's function. This allows the patient to gradually strengthen
as appropriate over time, not creating excessive weakness or low tone post
surgery. If the child eventually goes through a growth spurt a year or two
later, then one can simply increase the dosage of the pump to help the
tissues stretch out and keep up with the more accelerated bone growth. The
dosage within the pump can also be adjusted for night spasms and/or other
episodes of increased tone on a 24-hour clock. Many people have an increased
intrathecal Baclofen dosage during the sleepful hours when spasms become
more prominent and less of a dose during the more wakeful hours when they
need more spasticity in the legs to walk or transfer. For this reason, the
Baclofen pump is felt to be much more flexible and compatible with multiple
lifestyles. It is surprisingly durable within common-sense environments. Why choose the Baclofen pump (intrathecal Baclofen - ITB) over selective
posterior rhizotomy (SPR)? Please see Question 2 and its answer above.
Most people feel that because the Baclofen pump requires less surgery and is entirely reversible with a
less than one percent chance of a serious lifelong problem, it is the
reasonable first choice. It is most important
the child and/or adult receiving the Baclofen pump is able to frequently attend the rehabilitation
center for follow-up visits post surgery. If the social and family situation
is difficult with minimum follow-up and poor compliance on record for office
visits and therapy sessions, then the Baclofen pump should not be implanted.
The Baclofen pump is the only choice for adults with spasticity having no
serious contractures and failing other more conservative treatment options. How much time do you
spend in the hospital? Generally, people having the Baclofen pump implanted are home and receiving
outpatient therapy within the first seven to 10 days after surgery. The week
immediately following surgery is often involved with intensive
rehabilitation and nursing interventions. Frequently, overall hospital
therapy and costs can exceed $20,000 within the first year. The Baclofen
pump is FDA approved and, thus, most third-party payors have authorized
payments. What about outpatient therapy after leaving the hospital? Generally, there is intensive physical and
occupational therapy for the first three to six months after surgery. This can involve physical therapy
three to five times per week and occupational therapy two to three times per
week. In addition, there can be improvements noted with swallowing and
communication functions requiring the services of a speech therapist up to
two to three times per week. Generally, the
outpatient therapy program tapers more toward a baseline of two to three times per week interventions
for physical therapy and one to two times per week for occupational and
speech therapy between six months to a year after surgery. The therapy
services, although intensive and requiring pediatric specialists, are
somewhat less in our opinion than those required for individuals having
selective posterior rhizotomy (SPR).
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SELECTIVE POSTERIOR RHIZOTOMY (SPR) What are the risks? The main risks with SPR include cutting
excessive nerve rootlets entering the spine, creating undue weakness to the trunk and lower extremities and a
greater loss of feeling to the legs. If well-experienced professionals do
the surgery, this risk is less but still present. People have also reported
bladder problems after SPR, including wetness and inability to void. There
is also a slight risk of scoliosis associated with a laminectomy (bony
uncovering of the spine) with future growth. One still can develop
spasticity and tightness in the legs over time with future growth spurts
that can be amenable to stretching, bracing and even BOTOX® injections. What are the benefits? SPR can be a single intervention in the lifetime of a young person with
cerebral palsy, facilitating more functional ambulatory skills and self-care
if done correctly. There is no implantation of artificial devices and no
problems with maintenance of these devices
over time such as with the Baclofen pump. Cosmetically, one does not have to have an implantable device
in the lower abdominal region in addition to a catheter that tracts around
the abdomen and into the back. People enjoy having just one major
intervention and not having to return to the
hospital every two to three months for refill of their Baclofen pump and subsequent dose adjustments of
intrathecal Baclofen. Why choose SPR over intrathecal
Baclofen (the Baclofen pump)? Please see Question 2 in this regard. In addition, for those families who
live a long distance from medical centers and whereby follow-up can be
difficult, SPR appears to be a better choice. Candidates for SPR tend to be
more strong and selective in their lower extremities and trunk, all
ambulatory and wishing to improve their walking skills over time. Both
intrathecal Baclofen (the Baclofen pump) and SPR are costly, and comparable
over the first year in expenses when taking into account all hospital,
surgical and therapy services (over $20,000 easily in the first year). How much time do you
spend in the hospital? Often children with SPR have longer acute
hospital stays (immediately after surgery) than those receiving ITB (the Baclofen pump). The hospital stay can
be up to four to six weeks depending upon whether inpatient
rehabilitation services are provided in the same center or elsewhere. The children can
be quite weak immediately after SPR, requiring intensive re-education,
strengthening and therapy services in general to help relearn basic motor
and functional skills. What about therapy
after the hospital stay? Children receiving SPR frequently have at
least a year of intensive physical therapy after their operation. This includes physical therapy at least three
to five times per week, in conjunction with occupational therapy two to
three times per week, depending upon functional gains and goals. Often the
therapy is quite sophisticated, requiring
trained pediatric specialists to deliver basic neurodevelopmental exercise at progressive functional levels.
These therapy services can require a lot of transportation to and from the
rehabilitation center and/or school.
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CONTINENCE AND
NEUROGENIC BLADDER What are the Most Common
Causes of Bladder Incontinence? The lack of adequate accessibility to
bathrooms, toilets, and personal assistants in transfers and donning and doffing garments continues to be, in
our opinion, the major source of incontinence in adults with Cerebral Palsy.
Additional causes of incontinence include about a 10 percent incidence of
neurogenic bladder in children and adults creating urgency and frequency of
voiding with small volume bladders and high voiding
pressures. This condition of neurogenic bladder appears to be more common in individuals
with bilateral involvement of cerebral palsy (both sides). It can also be
associated with an increased incidence of urinary tract infections as can
other forms of incontinence in cerebral palsy. What is a Neurogenic Bladder? A neurogenic bladder is one that is affected through the spinal nerves
lacking sufficient inhibition from higher control centers in the brain
and/or brainstem region. This can cause excessive spasticity flowing to the
bladder creating small volumes and higher pressures with urgent and frequent
voiding and subsequent incontinence. Frequently adults
and children will be voiding every one to two hours with very little time to make it to the
bathroom and frequent wetness with transfers. It is a correctable situation
in most instances. What is the Treatment? Most of the time continence in cerebral palsy
can be achieved by reasonable access to toileting environments including public bathrooms and personal
care attendants providing assistance with transfers and donning and doffing
of garments. It is important to have unisex bathrooms (universal) in a
public setting so care attendants of the opposite sex can assist the
individual. Individuals having a spastic, low volume,
neurogenic bladder can, over 90 percent of the time, become continent on anti-choligernic medication such as
Diatropan and/or Levsinex. Frequently these medications will relax the
bladder and cause it to grow to a more normal, age-appropriate volume
allowing for comfortable three-to-four hour voiding intervals or more. If
the bladder cannot grow toward a more normal size and volume on medication,
then surgical options may be offered. This could include taking a loop of
bowel (colon) and sewing it on top of the bladder creating larger
volume and lower pressures and more comfortable voiding over time. This is called a
colonic patch cystoplasty or surgical augmentation of the bladder, which is
performed by a trained specialist in the field (pediatric or adult
urologist). Please feel free to contact us for further information in this
regard should more detail be necessary. What are the Risks of
Having a Neurogenic Bladder? A neurogenic bladder with high pressures and low volumes that is left
neglected over time can cause future medical problems. This might include
frequent urinary tract infections or reflux of urine upward into the kidneys
(back-flow) causing swelling of the kidneys (hydronephrosis). If reflux and
hydronephrosis should develop over time there is a potential for kidney
stones, kidney infections, high blood pressure and/or developing renal
failure in the worst-case scenario. Most adults in our experience, have not
been bothered by upper tract and kidney problems over time unless they had
inadequate drainage of urine to the outside. Sometimes individuals can be
seated in a wheelchair for 10-12 hours or more with inability to discharge
their urine to the outside creating harmful back pressure and swelling of
the kidneys (hydronephrosis). In these individuals we see some kidney stone
infections and early renal failure develop. An intermittent clean
catheterization program (ICC) or an even indwelling Foley catheter or
suprapubic catheter can provide adequate drainage and minimize risk over
time. Please feel free to contact us again if further information is
required on this topic.
What Should I Do If I Experience
Frequent Voiding and/or Incontinence?
Symptoms such as these should be brought to the attention of your local
physician and/or medical care specialist. A referral to a physiatrist who
does bladder studies and/or a urologist (surgeon), would be reasonable. Many
times the medical specialist will not know much about cerebral palsy and/or
the presence of a neurologic bladder. Often urologists are trained more for
surgical conditions of which the described neurogenic bladder is generally
not. For this reason some frustrations may occur with contact of the medical
care delivery system. If you should find extreme frustrations in this
regard, please feel free to contact us and we will try to make an
appropriate referral in your local area as helpful. It is important to
remember that neurogenic bladder occurs across a life span (in children and
adults) and across all educational and living circumstances.
BOTOX® is a
registered trademark of Allergan, Inc.
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