Why should non-ambulatory children get botox for cerebral palsy? It improves care.

I have performed botox injections as a rehabilitation technique since 2000. As the only neurologist in Houston who is a member of the AACPDM, I am often asked why I offer this procedure?

In non-ambulant children it makes a significant difference in quality of life.  

I lament the fear-mongering about adverse effects. While these events can happen, they are very rare. Almost all families return for repeat procedures. I see families who drive from Louisiana, Dallas and San Antonio who come every 3-4 months. 

Here is another article demonstrating efficacy without major adverse effects!

Dr. R

J Pediatr. 2014 Mar 12. pii: S0022-3476(14)00078-X. doi: 10.1016/j.jpeds.2014.01.050. [Epub ahead of print]

Botulinum Toxin A for Nonambulatory Children with Cerebral Palsy: 

A Double Blind Randomized Controlled Trial.

Copeland L1, Edwards P2, Thorley M2, Donaghey S2, Gascoigne-Pees L2, Kentish M2, Cert G2, Lindsley J2, McLennan K2, Sakzewski L3, Boyd RN3.

Author information

Abstract

OBJECTIVES:

To examine the efficacy and safety of intramuscular botulinum toxin A (BoNT-A) to reduce spasticity and improve comfort and ease of care in nonambulant children with cerebral palsy (CP).

STUDY DESIGN:

Nonambulant children with CP (n = 41; Gross Motor Function Classification System level IV = 3, level V = 38; mean age 7.1 years, range 2.3-16 years, 66% male) were randomly allocated to receive either intramuscular BoNT-A injections (n = 23) or sham procedure (n = 18) combined with therapy. The analysis used generalized estimating equations with primary outcome the Canadian Occupational Performance Measure (COPM) at 4 weeks postintervention and retention of effects at 16 weeks. Adverse events (AE) were collected at 2, 4, and 16 weeks by a physician masked to group allocation.

RESULTS:

There were significant between group differences favoring the BoNT-A-treated group on COPM performance at 4 weeks (estimated mean difference 2.2, 95% CI 0.8, 3.5; P = .002) and for COPM satisfaction (estimated mean difference 2.2, 95% CI 0.5, 3.9; P = .01). These effects were retained at 16 weeks for COPM satisfaction (estimated mean difference 1.8, 95% CI 0.1, 3.5; P = .04). There were more mild AE at 4 weeks for the BoNT-A group (P = .002), however, there were no significant between-group differences in the reporting of moderate and serious AE.

CONCLUSIONS:

In a double-blind randomized sham-controlled trial, intramuscular BoNT-A and therapy were effective for improving ease of care and comfort for nonambulant children with CP. There was no increase in moderate and severe AE in the children who had BoNT-A injections compared with the sham group.

Crown Copyright © 2014. Published by Mosby, Inc. All rights reserved.

Does a child with CP have a developmental regression? Think EEG abnormalities in sleep.

Does a child with CP have a developmental regression? Think EEG abnormalities in sleep. 

Early thalamic lesions in patients with sleep-potentiated epileptiform activity

Objective: To compare the prevalence and type of early developmental lesions in patients with a clinical presentation consistent with electrical status epilepticus in sleep either with or without prominent sleep-potentiated epileptiform activity (PSPEA).
                    

Methods: We performed a case-control study and enrolled patients with 1) clinical features consistent with electrical status epilepticus in sleep, 2) ≥1 brain MRI scan, and 3) ≥1 overnight EEG recording. We quantified epileptiform activity using spike percentage, the percentage of 1-second bins in the EEG tracing containing at least 1 spike. PSPEA was present when spike percentage during non-REM sleep was ≥50% than spike percentage during wakefulness.

                    

Results: One hundred patients with PSPEA (cases) and 47 patients without PSPEA (controls) met the inclusion criteria during a 14-year period. Both groups were comparable in terms of clinical and epidemiologic features.

Early developmental lesions were more frequent in cases (48% vs 19.2%, p = 0.002). Thalamic lesions were more frequent in cases (14% vs 2.1%, p = 0.037).

The main types of early developmental lesions found in cases were vascular lesions (14%), periventricular leukomalacia (9%), and malformation of cortical development (5%). Vascular lesions were the only type of early developmental lesions that were more frequent in cases (14% vs 0%, p = 0.005).
                    

Conclusions: Patients with PSPEA have a higher frequency of early developmental lesions and thalamic lesions than a comparable population of patients without PSPEA. Vascular lesions were the type of early developmental lesions most related to PSPEA.

http://www.neurology.org/content/78/22/1721.full

Medical uses and stigma associated with botox

Botox can be used to help with migraines, cerebral palsy, and overactive bladders. However, Botox users face the stigma attached with using a cosmetic product for medical purposes.

A cosmetic procedure popular among Hollywood stars can now be used to supposedly cure chronic migraines.

Botox, which is used to reverse the signs of aging is now being used to treat the neurological disorder.

More than 42,000 Kiwis suffer from chronic migraines every year and when it strikes the sufferer can be out of action for up to 72 hours.

But Botox has been proven to successfully treat the debilitating condition as well as other medical conditions.

"We can use it for cerebral palsy children, it can help them to walk again, for people who have spastic syndromes in their neck where they have chronic pain in their neck," Dr Garsing Wong from Sapphire Migraine Clinic told ONE News.

"It can even be injected into bladders, for people who over-active bladders now."

Botulinum Toxin or Botox is one of the most poisonous substances known to man, but the small dose used for treatment are less toxic than drugs you can buy over the counter.

Injections are applied to places that hold a lot of tension and through paralysing the muscle or relaxing it the treatment is able to reduce the pain at the trigger points.

But the stigma attached to Botox remains.

"The first thing, I think, that pops into your head are all those people in LA and stuff and their foreheads are literally frozen and first of you all you think; everyone's going to judge me," said Thea Lyle, Migraine Sufferer.

Ms Lyle said when she was first going to have botox to help with her migraines she was quite apprehensive about it.

But Ms Lyle is only one of hundreds of people who have had the procedure at the Sapphire Migraine Clinic.

For those who combine it with intensive physiotherapy there is a 90% success rate.

Read more here

Botox helps 3-year old with cerebral palsy walk

This article discusses the beneficial effect botox injections had for a 3 year old with cerebral palsy. The botox injections helped him walk for the first time.

Brave tot Aiden Farrell has taken his first steps after having Botox injections in his legs.

3-year-old Aiden was born with crippling cerebral palsy and his muscles tightened up so much so he was unable to straighten his legs without pain.

The toddler's parents Sara and Gevun scoured the Internet for treatment and discovered that Botox could be the answer.

The injections, most commonly used cosmetically to prevent wrinkles, work for Aiden by unblocking nerve impulses which restrict his movement.

Mom of four Sara, 31, said: "Seeing Aiden take his first steps is something I never dreamed would be possible.

"I noticed as soon as we got home after having the treatment the difference was amazing.

"Usually he would sit on the sofa with his legs bent up but his legs were normal, like ours would be when we sit on the sofa.

"It may sound unusual but if it helps my little boy walk I do not care.

"It is about trying to build up strength in his length and walk more. He is using muscles he has never used before.

"The difference in mobility is unbelievable."

Aiden has suffered health problems all his young life after being born prematurely at 29 weeks.

He weighed just 3 lbs. and had to be kept alive on a ventilator.

Full time mom Sara and builder Gevun of Hampshire, UK, first feared there could be something seriously wrong with him when he struggled to sit up aged eight months.

Sara added: "When I was told Aiden had cerebral palsy we grieved every day, especially because we have other children and could see them running around the house.

"It was difficult because we wanted Aiden to do the same things they could do.

"Over time his legs tightened up so much he was unable to straighten them. He would cry with any physiotherapy exercises he was given to strengthen his legs.

"I felt useless because all I could do was massage them to make his pain go away."

After Sara and Gevun read about the Botox treatment online Aiden was placed on an 18-month waiting list and in 

December last year was given 12 injections, two in each of his calves, hamstrings and groin.

The family were told there was only a 50 per cent chance of it being successful.

Sara added: "I was really nervous taking him to the hospital that morning.

"When it's your own child you really want it to work but of course you have your doubts about what will happen if it doesn't.

"He was put to sleep and we were originally told he would be down for four minutes but it was an hour by the time we got called to see him.

"But when we did he asked for a sausage roll - which made everyone laugh."

The unconventional treatment has had a life-changing effect on the family.

For the first time Aiden is able to stand, walk with his legs straighter on his walking frame, stand with his legs apart and even take a few steps on his own.

Sara was finally able to fulfil her dream of being able to push toy cars through his legs, like she had done with her other children.

Botox uses tiny amounts of botulinum toxin, derived from the bacteria that cause botulism food poisoning.

The deadly nerve agent kills by paralysing the muscles used for breathing.

In tiny doses it relaxes the contraction of muscles in some people with cerebral palsy by blocking nerve impulses.

This allows better control of movement and reduces the risk of muscle and tendon shortening. The effects last between four and six months.

The family are now hoping Aiden will be eligible for selective dorsal rhizotomy surgery - a five-hour operation which will cut the nerves in his lower back and provide a permanent cure.

Read more here

Botox and how it helps cerebral palsy, chronic migraines, and excessive sweating

This article discusses how botox can help ease symptoms of cerebral palsy, chronic migraines, excessive sweating, and other conditions.

Botox isn’t reserved solely for reducing fine lines and wrinkles.

The most potent naturally occurring neurotoxin known to man can be used to treat symptoms of medical conditions such as cerebral palsy, chronic migraines and excessive sweating.

And it’s effective.

“It’s just like with many other medications that are actually poisons – it’s how we use them and where we use them that make the difference,” says Sanford Health’s Dr. William Klava.

Although Botox isn’t a “cure” for any of these conditions, it can prevent the social embarrassment of excessive underarm sweat, reduce hours of work missed because of migraine pain, and improve a young athlete’s pitching stance.

Cerebral palsy

Klava says Botox almost revolutionized the care of children with cerebral palsy because it forces muscle relaxation and improves limb function.

Symptoms include spastic movement of the arms and legs and sudden muscle stiffness and contraction caused by miscommunicated signals between the brain and the limbs.

Botox interrupts the communication between the spinal cord and the nerves, which stops the sudden jerking movements.

“When I use it, I’m relaxing the muscle so the child can stretch out better and achieve motor functions and activities that they couldn’t achieve because certain muscles were too tight or too spastic,” Klava says.

He’s used it on kids as young as 2 months and adults as old as 90, and results typically last between four and six months.

“One of the beauties of it as a medication is that if the result you get is not exactly what you want, don’t worry, because it wears off,” he says.

Although it can be used “almost anywhere you have muscle,” Klava says it’s most commonly used in cerebral palsy patients’ bicep, forearm, hamstring and calf muscles.

“We keep expanding what we utilize it for and how we utilize it as we gain more experience with it,” he says.

Chronic migraines

Last spring, after reading an article in The Forum about Botox treatment for migraines, Sara Eeg of Greenbush, Minn., asked her doctor if she was a candidate.

The 36-year-old mother of four had suffered from chronic migraines for as long as she could remember, and she’d tried everything, including anti-seizure medication.

“My headaches were just constant. I would have a headache when I woke up in the morning, and I’d have a headache when I went to bed at night,” she says.

So far, Eeg has had three series of injections spaced three months apart.

“Each time I’ve gotten the injections, the pain relief has lasted longer and longer, whereas the first time it kind of wore off after a while,” she says.

She says the shots – 29 the first time, then 31 and most recently 33 – “just pinch a little.”

“The benefits are way worth it. I told her the other day, ‘I would do it every week if I could,’ ” Eeg says of the treatments with Dr. Cynthia Knutson.

Since she started treatment, Eeg says she’s had more energy, she’s more focused, and she’s more interested in life.

“It’s unreal. I feel like I’m better at everything,” the home care administrator says. “My brain isn’t so focused on hurting.”

Knutson, a neurologist with Sanford Health in Fargo, says she’s been seeing plenty of new chronic migraine patients seeking Botox treatment.

“I do Botox one whole day a week, and I’m actually adding another half-day because I’m getting more requests,” she says.

Chronic migraine patients develop a lot of tension in the head, neck and shoulder muscles, and when Botox injections relax those muscles, the headache pain fades.

Injections go in the forehead, above the ears, along the base of the skull, at the top of the neck and into the top of the shoulders.

“It doesn’t work for everybody, but it works for a large majority of patients who have this type of migraine,” Knutson says.

Excessive sweating

Dr. Yulia Khan, dermatologist with Sanford Dermatology & Laser Clinic, says Botox is a last-resort treatment for hyperhidrosis, or excessive sweating.

“A lot of people say it’s lifesaving because they’ve tried a lot of different things,” she says.

The injections – usually about 20 – into the superficial layer of the skin in the underarms (and sometimes the forehead, back of the head, hands or feet) stop most sweating at the site for six to eight months at a time.

“With each repeated treatment, that period extends more and more,” Khan says.

Results are reversible, so sweating returns over time, and most hyperhidrosis patients know when they’re due for an appointment.

“Instead of affecting muscles, like in the case of spasticity, or for cosmetic rejuvenation, it works on the nerves that affect the sweat glands,” she says.

Most of Khan’s patients, both male and female, are between the ages of 15 and 35.

“It tends to be younger adults because excessive sweating becomes more prominent after puberty,” she says.

Other uses of Botox

• Crossed eyes

• Eye twitching

• Gummy smile

• Teeth grinding

• Vocal cord dysfunction

• Urinary incontinence or overactive bladder

Read more here

Botox Used to Help Cerebral Palsy Patients

This article discusses how botox is used to help relax muscles in cerebral palsy patients.

Many people associate Botox with wrinkle treatment, but the medicine is also used to treat migraines and neck pain.

Doctors at East Tennessee Children's Hospital Rehabilitation Center have used it to help children with cerebral palsy.

Dr. Nadine Trainer has been giving Brad Gandy injections in his legs. The Madisonville teen has cerebral palsy and started getting Botox injections when he was only three years old.

"It's extremely helpful," Brad said. "When I was younger I used to cry a lot more because I wasn't ready for it, I guess. But now as you get older, you start to think of what this really does for you."

Botox makes Brad more comfortable in his wheelchair.

"It has been the very best thing for us," Brad's mother, Sandra, said. "His legs would be extremely tight and then after he would have the shot, after about two or three weeks, then they were much more relaxed."

Unlike cosmetic use which typically lasts a few months, Botox therapy in patients with spastic muscles can last much longer between injections.

"If I change a muscle that's preventing the arm to move, for example, and now that muscle is loose, I don't necessarily have to re-inject them in three months, or four months, or a year later," Dr. Trainer said. "You have to know what you're injecting, why you're injecting it, and what your goals are."

Not everyone with stiff or spastic muscles is a candidate for Botox therapy. But the treatment has worked well for David Nuyen, another cerebral palsy patient who receives injections in his arms.

Dr. Trainer has been using Botox on patients for about 15 years. She likes the results and said there are no serious side effects.

Read more here

Salivary gland botulinum toxin injections for drooling in children with cerebral palsy and neurodevelopmental disability: a systematic review

I have been using this modality of treatment for many years. My clinical observation is that it is effective with few severe side effects.  I have been counting the decrease in the number of bibs  or  shirt changes  as well because it is hard to quantify the response. JR

Salivary gland botulinum toxin injections for drooling in children with cerebral palsy and neurodevelopmental disability: a systematic review

Aim  The aim of this paper was to systematically review the efficacy and safety of botulinum toxin (BoNT) injections to the salivary glands to treat drooling in children with cerebral palsy and neurodevelopmental disability.

Method  A systematic search of The Cochrane Central Register of Controlled Trials, PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature), EMBASE, and the Physiotherapy Evidence Database (PEDro) was conducted (up to 1 October 2011). Data sources included published randomized controlled trials (RCTs) and prospective studies.

Results  Sixteen studies met inclusion criteria. Three outcome measures support the effectiveness of BoNT for drooling. One RCT found an almost 30% reduction in the impact of drooling on patients’ lives, as measured by the Drooling Impact Scale (mean difference −27.45; 95% confidence interval [CI] −35.28 to −19.62). There were sufficient data to pool results on one outcome measure, the Drooling Frequency and Severity Scale, which supports this result (mean difference −2.71; 95% CI −4.82 to −0.60; p<0 .001=".001" 2="2" 41="41" a="a" adverse="adverse" because="because" bibs="bibs" but="but" day.="day." early="early" events.="events." events="events" from="from" in="in" incidence="incidence" inconsistently="inconsistently" number="number" observed="observed" of="of" one="one" p="p" per="per" ranged="ranged" reduction="reduction" reported.="reported." required="required" significant="significant" terminated="terminated" the="the" there="there" to="to" trial="trial" was="was">

Interpretation  BoNT is an effective, temporary treatment for sialorrhoea in children with cerebral palsy. Benefits need to be weighed against the potential for serious adverse events. More studies are needed to address the safety of BoNT and to compare BoNT with other treatment options for drooling.

 link here

Baby's head and neck control may be an autism clue

Early research suggests that if a 6-month old baby has "head lag," or weak head and neck control, it may be an early sign of autism or another language/social developmental delay.

The test is simple – babies who are lying on the floor are pulled up into a sitting position. If the baby's head is not moving forward as you pull the baby up, it's a sign of weak head and neck control.

Researchers already know that head lag could be an early sign that a child's nervous system is not developing correctly. They've seen this in children with cerebral palsy and preterm infants, for example. But so far it had not been documented in children with autism.

Researchers at Baltimore's Kennedy Krieger Institute looked at a small sample of babies who were already at high risk for autism because they had a sibling with autism. If a couple already has one child with an autism spectrum disorder there's a nearly 1 in 5 chance that the second child will have autism too. According to the latest CDC estimates , 1 in 88 children in the United States has an autism diagnosis. It's 5 times more common in boys than girls.

A group of 40 babies were tested at 6 months. Ten children were later diagnosed with ASD at the age of 3. Nine of those 10 babies had head lag when they were 6 months old.

More than half of the children (54%) who were later diagnosed with language or social developmental delays but not autism also had head lag at 6 months, says Rebecca Landa, one of the study authors and the director of the Center for Autism and Related Disorders at Kennedy Krieger.

In a second study that compared 20 high risk babies to 21 low-risk babies, 75% in the high risk category showed signs of head lag at six months compared to only 33% in the low-risk group.

Landa acknowledges that this research, presented Thursday at a meeting of the International Society for Autism Research in Toronto, is very preliminary and needs to be confirmed in larger studies.

She also cautions that weak head and neck control doesn't automatically mean your baby will develop autism. But, Landa says, if you already have a child with autism and your baby is showing this kind of problem, you should take the child to see a specialist.

"If you don't have a family history of autism, and your child had head lag at 6 months - it might be something else, or might be nothing, but it's important to check it out," she says.

The goal is to identify a child with autism as early as possible so therapy can start early.

"We don't want to wait until children are 1 or 2 when they are more likely to show symptoms of autism."

Alycia Halladay, director of research for environmental sciences at the advocacy group Autism Speaks, says this is a very important study and deserves replication. She says it's too early to consider head lag a diagnostic marker, it's one of many red flags that parents may notice very early in development and something a doctor can easily check out.

Halladay, who was not involved in the research, says "this provides something that parents can bring to their doctors beyond just a concern."

Landa says she doesn't want to scare every parent into thinking their child may have autism because their little one has poor postural control, especially because in some children the problem goes away.

However, this is a simple test that doesn't cost anything, doesn't hurt a child, and - if a child were referred to therapy - doesn't hurt a child but can enrich their development, with or without a subsequent autism diagnosis.

Landa says parents can easily be trained to help their baby improve head and neck control. She suggests Googling "tummy time," which can lead parents to a lot of good information on fun and supportive tummy time exercises to help build their baby's neck muscles.

She also suggests sitting babies up, holding babies at the hips and slowly rocking them from side to side - just enough so that the baby leans to the center, which she says activates the core muscles so the baby stays balanced. Babies love it, especially if you sing a song while doing this.

Read more here

Long-term Treatment Outcomes of Children&Adolescents who have Cerebral Palsy with Secondary Osteoporosis.

Editor's Note:  I start screening my most severe patients and teenagers for osteoporosis when treating cerebral palsy. JR

Curr Med Res Opin. 2012 May;28(5):737-47. Epub 2012 Apr 18.

Long-term outcomes of children and adolescents who had cerebral palsy with secondary osteoporosis.

Iwasaki T, Nonoda Y, Ishii M.

Source

Kitasato University School of Medicine , Sagamihara , Japan.

Abstract

Abstract Objective: To investigate the long-term efficacy and index of treatment with vitamin D alone or with a bisphosphonate in children and adolescents who have cerebral palsy (CP) with secondary osteoporosis. Research design and methods: Thirty patients diagnosed with CP and secondary osteoporosis were analyzed for 5 years, and the efficacy of treatment was compared. Treatment was divided into three groups: The monotherapy group, consisting of patients taking only alfacalcidol (0.03 µg/kg/day); the polytherapy group, consisting of those taking alfacalcidol and risedronate (0.05 mg/kg/day); and the control group, consisting of patients who discontinued taking their medications for reasons unrelated to these therapies. Bone mineral density (BMD), bone-specific alkaline phosphate (BAP), and N-telopeptides of type I collagen (NTX/Cr) were measured on each patient just before and at discontinuation of treatment, after 6 months, and again at 1 and 3 years, respectively. The changes in BMD (ΔBMD), BAP (ΔBAP), and NTX/Cr (ΔNTX/Cr) were evaluated at these intervals, because the normal value of each parameter varies over time during childhood. Results: ΔBMD significantly increased in the polytherapy group at ≥1 year (p = 0.006), and the difference in BMD between the polytherapy and the control groups at ≥1 year was also significant (p = 0.005). ΔBAP was increased in the monotherapy and polytherapy groups at ≥1 year (p = 0.021 and p = 0.033). ΔNTX/Cr decreased in the polytherapy group at ≥1 year, which was consistent with the polytherapy group of the period from 1 month to 1 year (p = 0.033). The relation between ΔBMD to ΔBAP was a positive correlation in the second period in the monotherapy group (r = 0.46). And the relations between ΔBMD to ΔNTX/Cr were not recognized negative correlations in the monotherapy and polytherapy groups. Thus, ΔBMD reflected ossification of secondary osteoporosis in patients with CP, and ΔBAP and ΔNTX/Cr was significantly related to the increase and decrease of ΔBMD. There were no effects of other factors except sexual maturity. Limitations of this study include that each index of examination was the evaluation according to rate of change. Therefore, the results of this study were limited to longitudinal evaluations. Conclusion: Evaluation according to ΔBMD and both methods of monotherapy and polytherapy were useful for CP patient taking antiepileptic drugs (AEDs) and regardless of sex. Especially, polytherapy for longer than 1 year led to improvement in BMD in children who had CP with secondary osteoporosis. BAP and NTX/Cr were useful for the index of the progression osteoporosis with or without these therapies.

Read More: http://informahealthcare.com/doi/abs/10.1185/03007995.2011.645562

Boy with Cerebral Palsy Walks to his Marine Dad Returning from Deployment

A boy with cerebral palsy was told he'd never walk, but did just that when he saw his returning Marine dad.

http://video.insider.foxnews.com/thumbnails/694940094001/2012/05/10/640/360/694940094001_1631328903001_vs-1631314523001.jpg

link here

Introducing: Pediatric Cerebral Palsy Clinic at Children's Memorial

Referral Form for Pediatric Cerebral Palsy Clinic at Children's Memorial

Stem Cell Fraud for Cerebral Palsy, Epilepsy

"60 Minutes" investigates online stem cell fraud

Dr. Joanne Kurtzberg of Duke University tells Scott Pelley that stem cells purchased from one of the hundreds of websites promising stem cell cures for incurable diseases could actually cause a patient serious harm. The chief scientific officer for Duke's stem cell research program spoke to Pelley as part of an eight-month investigation into the illicit stem cell industry.

In the report, "60 Minutes" cameras capture a disgraced doctor trying to sell an unproven stem cell treatment to the parents of a child with cerebral palsy. Pelley's investigation will be broadcast on "60 Minutes" on Sunday, Jan. 8 at 8 p.m. ET/PT.


Kurtzberg decries the websites offering unproven stem cell remedies for what are currently incurable diseases like autism, multiple sclerosis, Alzheimer's and every kind of cancer. She hears from patients who see those websites and has to inform them that thus far, stem cells have been used to successfully treat leukemia and a few rare genetic diseases and nothing else. "It's very dishonest to mislead people when there is nothing you can do," says Kurtzberg. "I believe stem cells have a lot of promise, but we are way at the infancy," she tells Pelley.


"60 Minutes" worked with Gary and Judy Susser, parents of Adam, who has cerebral palsy, to investigate one of the online purveyors of stem cell treatments, Stem Tech Labs of Ecuador. Such labs are offshore because what they are doing is mostly illegal in the U.S. The lab, run by an American doctor named Dan Ecklund whose license to practice medicine was revoked in Alabama, promises a "modern day miracle" and "treating or curing over 70 diseases." "60 Minutes" cameras captured Ecklund on a teleconference from Ecuador promising the Sussers that Adam would have a "75 percent chance...he would have a noticeable improvement." He would come to Florida to administer four stem cell transplants for which he would charge $5,000 each. In a Miami-area hotel room set with hidden cameras, Pelley confronts Ecklund about his intentions to treat the child.


"60 Minutes" purchased some stem cells from Ecklund's website and had Kurtzberg examine them in her lab at Duke. Dr. Kurtzberg discovered that only 100 of the 20 million umbilical cord blood stem cells bought for $5,000 were still alive. The dead cells are cellular debris and dangerous says Kurtzberg. "There are huge dangers if you inject that into someone's blood or spinal fluid because all these little fragments and debris would get trapped somewhere in the bloodstream and could cause a stroke...do a great deal of harm," Kurtzberg tells Pelley.


Adam, 11, did not get the treatments; his parents had been down that route before in 2003 when they took him to Mexico for similar treatments that produced no miracles. The Sussers want others to beware. "People are preyed upon by hucksters and charlatans... It's about getting rich at someone's expense," says Gary Susser. "And people with a special child don't need anymore expense...heartache...false promises. They need the truth and they need hope."

© 2012 CBS Interactive Inc.. All Rights Reserved.

Read more: http://www.cbsnews.com/8301-18560_162-57354200/60-minutes-investigates-online-stem-cell-fraud/#ixzz1mE0Et65X

The Internet is full of websites selling unproven stem cell treatments for incurable illnesses;

Read more: http://www.cbsnews.com/video/watch/?id=7394402n&tag=cbsnewsMainColumnArea.6#ixzz1mDzi7jO

video here

Does a child have unexplained CP? Genetic Abnormalities May Cause Cerebral Palsy, Study Suggests

Genetic Abnormalities May Cause Cerebral Palsy, Study Suggests

ScienceDaily (Jan. 26, 2012) — For years it was thought that a difficult birth and other perinatal factors were the leading causes of cerebral palsy (CP), a group of disorders that can involve brain and nervous system functions such as movement, learning, hearing, seeing and thinking. Now, researchers at Geisinger Health System find that the majority of cerebral palsy causes may in fact be caused by genetic abnormalities.

Published in the The Lancet Neurology, Geisinger researchers find that CP -- the most common physical disability of childhood -- is probably caused by multiple genetic factors, similar to other neurodevelopmental disorders such as autism and intellectual disability. The paper suggests physicians should consider performing genetic testing when children present with CP and CP-like conditions.

"There is a widespread misconception that most cases of CP are caused by difficult delivery leading to birth asphyxia," said Andres Moreno De Luca, M.D., research scientist at the Genomic Medicine Institute, Geisinger Health System, and lead author of the paper. "What we're finding is a growing body of evidence that suggests mutations in multiple genes are responsible for CP. In fact, we suspect these genetic abnormalities may also be the cause of some difficult births to begin with."

Despite substantial improvements in obstetric and neonatal care, the paper finds the worldwide prevalence of cerebral palsy has remained stable at 2 to 3 per 1,000 livebirths for more than 40 years. Inadequate oxygen supply to fetuses, known as birth asphyxia, remains the most studied factor associated with CP, though electronic fetal monitoring and other technologies have been developed to detect fetal distress.

"What we're finding is even though more preventative efforts have been put in place, like fetal monitoring, the incidence of CP has not decreased," said David Ledbetter, Ph.D., chief scientific officer, Geisinger Health System. "We've seen a five-fold increase in the rate of caesarean sections, which are done in part to avoid potentially difficult delivery, and again, the CP rates remain steady. These findings lead us to believe genetics play a much bigger role than previously thought."

The paper also reports that even though most cases of CP are not caused by birth asphyxia and those that are can rarely be prevented by obstetric intervention, between 1999 and 2003 an estimated 76 percent of obstetricians in the U.S. faced medical malpractice litigation, most often for alleged birth mismanagement resulting in CP.

"We now know of six genes that can cause CP when disrupted, and we estimate that many other developmental brain genes probably contribute to the genetic heterogeneity of this disorder," said Dr. Moreno De Luca. "Many capable obstetricians face legal action even though research is telling us genetics is the likely cause of most cases of CP."

As the paradigm shift continues and more researchers, clinicians, and the general population start to consider the cerebral palsies as a group of neurogenetic disorders, the paper states we will probably witness an increase in research efforts, a change in the diagnostic approach, and eventually novel therapies for treating CP.

Link here

Comedian Josh Blue Records PSA on Cerebral Palsy for American Academy of Neurology Foundation

Comedian Josh Blue Records PSA on Cerebral Palsy for American Academy of Neurology Foundation

Newswise — ST. PAUL, Minn. – Comedian Josh Blue is the latest celebrity to help the American Academy of Neurology Foundation in its fight to cure brain disease – this time with a video public service announcement (PSA) Blue recorded to raise awareness about cerebral palsy and the need for research. Watch the PSA now.

Blue, best known for winning season four of NBC’s television show Last Comic Standing, continues to break down stereotypes of people with disabilities one laugh at a time. His stand-up routine is in a constant state of evolution and his off-the-cuff improvisational skills guarantee that no two shows are exactly alike.

“Having cerebral palsy, I wasn’t really sure what I was going to do, but my friends always told me I was really funny and I discovered stand-up comedy,” Blue recounts in the PSA. “So having a physical disability, I realized at a pretty young age that if there was anything I didn’t accomplish in my life, it wasn’t because I had cerebral palsy; it was because I was just being lazy.”

“Josh Blue’s zest for life and ability to overcome his disabilities serve as an inspiration to all of us in the neurologic community,” said John Mazziotta, MD, PhD, Chair of the American Academy of Neurology Foundation’s Board of Trustees and Professor and Chair of UCLA’s Brain Mapping Center in Los Angeles. “We commend Blue for his inspiring work and his commitment to helping everyone understand cerebral palsy and the importance of supporting research to prevent and treat this disorder.”

Cerebral palsy affects at least a half million people in the United States and is usually caused by brain damage before or during birth or during the first few years of a child’s life. Cerebral palsy can’t be cured, but treatment will often improve a child’s capabilities. Many children go on to enjoy near-normal adult lives if their disabilities are managed.

The PSA was produced by PSAV® Presentation Services, winner of a Telly Award for highest production honors.

Blue and his inspiring work to raise awareness about cerebral palsy will also be featured in an upcoming issue of Neurology Now, the Academy’s award-winning magazine for neurology patients and caregivers. Sign up for a free subscription athttp://www.neurologynow.com.

The American Academy of Neurology Foundation supports vital research into finding cures for brain disease. The Foundation is committed to improving patient care, quality of life and public understanding of brain disease. To learn more or to make a donation to support research, visithttp://www.aan.com/foundation.

The American Academy of Neurology, an association of more than 24,000 neurologists and neuroscience professionals, is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer’s disease, stroke, migraine, multiple sclerosis, brain injury, Parkinson’s disease and epilepsy. 

PSA here

Facts about cerebral palsy - A Primer for Families and Patients

Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood.Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles. 

The symptoms of CP vary from person to person. A person with severe CP might need to use special equipment to be able to walk, or might not be able to walk at all and might need lifelong care. A person with mild CP, on the other hand, might walk a little awkwardly, but might not need any special help. CP does not get worse over time, though the exact symptoms can change over a person's lifetime. 

All people with CP have problems with movement and posture. Many also have related conditions such asintellectual disability ; seizures; problems with vision ,hearing, or speech; changes in the spine (such as scoliosis); or joint problems (such as contractures).

Types of Cerebral Palsy

Doctors classify CP according to the main type of movement disorder involved. Depending on which areas of the brain are affected, one or more of the following movement disorders can occur:

• Stiff muscles (spasticity)
  
• Uncontrollable movements (dyskinesia)
  
• Poor balance and coordination (ataxia)

There are four main types of CP:

Spastic Cerebral Palsy

CP Fact Sheet

Download and print this fact sheet » 

The most common type of CP is spastic CP. Spastic CP affects about 80% of people with CP.

People with spastic CP have increased muscle tone. This means their muscles are stiff and, as a result, their movements can be awkward. Spastic CP usually is described by what parts of the body are affected:

• Spastic diplegia/diparesis―In this type of CP, muscle stiffness is mainly in the legs, with the arms less affected or not affected at all. People with spastic diplegia might have difficulty walking because tight hip and leg muscles cause their legs to pull together, turn inward, and cross at the knees (also known asscissoring).
  
• Spastic hemiplegia/hemiparesis―This type of CP affects only one side of a person's body; usually the arm is more affected than the leg.
  

• Spastic quadriplegia/quadriparesis―Spastic quadriplegia is the most severe form of spastic CP and affects all four limbs, the trunk, and the face. People with spastic quadriparesis usually cannot walk and often have other developmental disabilities such as intellectual disability; seizures; or problems with vision, hearing, or speech. 
  

Dyskinetic Cerebral Palsy (also includes athetoid, choreoathetoid, and dystonic cerebral palsies)

People with dyskinetic CP have problems controlling the movement of their hands, arms, feet, and legs, making it difficult to sit and walk. The movements are uncontrollable and can be slow and writhing or rapid and jerky. Sometimes the face and tongue are affected and the person has a hard time sucking, swallowing, and talking. A person with dyskinetic CP has muscle tone that can change (varying from too tight to too loose) not only from day to day, but even during a single day.

Ataxic Cerebral Palsy

People with ataxic CP have problems with balance and coordination. They might be unsteady when they walk. They might have a hard time with quick movements or movements that need a lot of control, like writing. They might have a hard time controlling their hands or arms when they reach for something.

Mixed Cerebral Palsy

Some people have symptoms of more than one type of CP. The most common type of mixed CP is spastic-dyskinetic CP.

Early Signs

The signs of CP vary greatly because there are many different types and levels of disability. The main sign that a child might have CP is a delay reaching motor or movement milestones (such as rolling over, sitting, standing, or walking). Following are some other signs of possible CP. It is important to note that some children without CP also might have some of these signs.

In a Baby Younger Than 6 Months of Age

• His head lags when you pick him up while he’s lying on his back
  
• He feels stiff
  

• He feels floppy
  
• When held cradled in your arms, he seems to overextend his back and neck, constantly acting as if he is pushing away from you
  
• When you pick him up, his legs get stiff and they cross or scissor
  
  
  

In a Baby Older Than 6 Months of Age

• She doesn’t roll over in either direction
  
• She cannot bring her hands together
  
• She has difficulty bringing her hands to her mouth
  
• She reaches out with only one hand while keeping the other fisted
  

In a Baby Older Than 10 Months of Age

• He crawls in a lopsided manner, pushing off with one hand and leg while dragging the opposite hand and leg
  
• He scoots around on his buttocks or hops on his knees, but does not crawl on all fours
  
  
  

Tell your child’s doctor or nurse if you notice any of these signs. Learn more about developmental milestones that children should reach from birth to 5 years of age »

Screening and Diagnosis

Diagnosing CP at an early age is important to the well-being of children and their families. Diagnosing CP can take several steps:

Developmental Monitoring

Developmental monitoring (also called surveillance) means tracking a child’s growth and development over time. If any concerns about the child’s development are raised during monitoring, then a developmental screening test should be given as soon as possible.

Developmental Screening

During developmental screening a short test is given to see if the child has specific developmental delays, such as motor or movement delays. If the results of the screening test are cause for concern, then the doctor will make referrals for developmental and medical evaluations.

Developmental and Medical Evaluations

The goal of a developmental evaluation is to diagnose the specific type of disorder that affects a child.

Learn more about screening and diagnosis »

Treatments and Intervention Services

There is no cure for CP, but treatment can improve the lives of those who have the condition. It is important to begin a treatment program as early as possible.

After a CP diagnosis is made, a team of health professionals works with the child and family to develop a plan to help the child reach his or her full potential. Common treatments include medicines; surgery; braces; and physical, occupational, and speech therapy. No single treatment is the best one for all children with CP. Before deciding on a treatment plan, it is important to talk with the child’s doctor to understand all the risks and benefits.

Visit the NINDS Cerebral Palsy Information Page to learn more about treatments for CP »

Intervention Services
Both early intervention and school-aged services are available through our nation’s special education law—the Individuals with Disabilities Education Act (IDEA). Part C of IDEA deals with early intervention services (birth through 36 months of age), while Part B applies to services for school-aged children (3 through 21 years of age). Even if your child has not been diagnosed with CP, he or she may be eligible for IDEA services.

Learn more about IDEA Services »

Causes and Risk Factors

CP is caused by abnormal development of the brain or damage to the developing brain that affects a child’s ability to control his or her muscles. There are several possible causes of the abnormal development or damage. People used to think that CP was mainly caused by lack of oxygen during the birth process. Now, scientists think that this causes only a small number of CP cases.

The brain damage that leads to CP can happen before birth, during birth, within a month after birth, or during the first years of a child’s life, while the brain is still developing. CP related to brain damage that occurred before or during birth is called congenital CP. The majority of CP (85%–90%) is congenital. In many cases, the specific cause is not known. A small percentage of CP is caused by brain damage that occurs more than 28 days after birth. This is called acquired CP, and usually is associated with an infection (such as meningitis) or head injury.

Learn more about causes and risk factors for CP »

If You’re Concerned

If you think your child is not meeting movement milestones or might have CP, contact your doctor or nurse and share your concerns. 

If you or your doctor is still concerned, ask for a referral to a specialist who can do a more in-depth evaluation of your child and assist in making a diagnosis.

At the same time, call your state’s public early childhood system to request a free evaluation to find out if your child qualifies for intervention services. This is sometimes called a Child Findevaluation. You do not need to wait for a doctor’s referral or a medical diagnosis to make this call.

Where to call for a free evaluation from the state depends on your child’s age:

• If your child is not yet 3 years old, contact your local early intervention system. 
  
  You can find the right contact information for your state by calling the National Dissemination Center for Children with Disabilities (NICHCY) at 1-800-695-0285. 
  
  Or visit the NICHCY website. Once you find your state on this webpage, look for “Programs for Infants and Toddlers with Disabilities”.
  
  Learn more about early intervention »
  
• If your child is 3 years of age or older, contact your local public school system. 
  
  Even if your child is not yet old enough for kindergarten or enrolled in a public school, call your local elementary school or board of education and ask to speak with someone who can help you have your child evaluated. 
  
  If you’re not sure who to contact, call

More here