Botox i liječenje cerebralne paralize

[Vilko]

Australijska televizija.
Program “60 minutes”
July 3 ,2005.

Za roditelje nema bolje novosti nego ove u stvari moglo bi se nazvati “miracle”…”cudo”i Vi bi mislili tako da je u pitanju vase dijete koje je invalid…stane na noge i pocme hodati po prvi puta. Jos vece je iznenadjenje da je “miracle drug”….Botox jest ta injekcija koja se koristi za kozmetiku.

Botox ima sada mnogo vecu i ozbiljniju upotrebu , nazvan najbolji napredak u zadnjih 20 godina u upotrebi u borbi sa celebral palsy. Kako se moze vidjeti mala djeca koja su trebala biti vezana za invalidska kolica za cijeli zivot …sada imaju sanse da hodaju.

Dr.Adam Scheinberg, Rehabilitation Paediatrician u Djecjoj Bolnici u Westmead u
razgovoru sa roditeljima od ANDY POETSHCKA, djevojcice 7 godina stare , Mr.Neville Poetschka i Mrs.Rhonda Poetschka i sa 60 minutes reporterom i kamera
reportom.

TV Report, transcription.

Reporter:da li tako sjedi na konju princeza koda jasi?
Instructor:je mislim…. Andy drzi ledja ravno misli sada si mala princeza.
Reporter:na vrhu konja ,Andy ima slobodu, koje njezine male nogice nisu joj nikada dozvolile.
Andy:razlog je ja sam bila jako stisnuta u nogama i nisam mogla hodati …kada se je to dogodilo , nisu znali sta je krivo dok nisam bila dve godine.

Reporter:Andy je bila rodjena prije roka 7 tjedna prerano, poslije dvije godine njezini roditelji su bili kazani da ona ima celebral palsy, isto su bili kazani da ce najvjerojatnije sprovesti cijeli zivot u invalidskim kolicima.
Neville/otac/; da li ce moci hodati?, odgovor je bio, ne.
Reporter :mora da je bilo veoma tesko doznati tako nesto?
Rhonda/majka/:nemoguce…trebalo je vrijeme preboliti…i prihvatiti, da ce tako biti.
Reporter:da potvrdimo sta su doktori kazali ,tako je i bilo…Andy je prebacivala se po podu no koljenima i sa pomoci stapovima…i danas nam pokazuje prvu generaciju Australijske djece , medikalno cudo lijecenja sa Botoxom.
Rhonda;i mi imamo to “cudo” u nasem domu.
Reporter:Vi ste vidjeli na televiziji kako Andy ide od jedne strane do druge u Sydney bolinici, sva djeca su injektana sa Botoxom…tko bi mislio da ce se Botox okrenuti na
najbolji lijek za celebral palsy u dvadesetak godina.
Mlada djeca dobivaju sada novi zivot u svoje misice i zglobove.
Terapist :Andy hodaj…hodaj!
Reporter: Andy je imala njezinu prvu Botox injekciju kada je bila tri godine?
Rhonda majka:Prve injekcije su bile tolika velika promjena da je nevjerojatno povjerovati,mi smo stavili Andy u kadu, ona se je pomicala pokretima koja nismo mislili da cemo ikada vidjeti, niti mislili da bi se ikada moglo dogoditi.
DrAdam Scheinberg:djeca sa celebral palsy su imali gotovo svakoga rodjendana operacije, ,misici su postajali sve vise slabiji…i ako nastavite sa operacijama misici postanu tako slabi da je nemoguce hodati i sa stapovima
Reporter;Botox je to okrenuo.Dok djeca rastu njihovi misici rastu dok njihovo tjelo nije
Dosta razvijeno.To znaci manje operacija i vise mogucnosti uspjeha operacije.Oko 6 godina starosti dosao je Andy dan operacije …ali da li ce biti sposobna hodati?mjesecima poslije operacije ona je odlucila probati nemoguce u svojoj sobi je pocela prakticirati.
Andy:jednu vecer sam stavila kutiju sa nakitom na jedno mjesto i kazala ici cu tamo i vratiti se natrag.
Rhonda /majka/: ona se je podigla se i naslonila na krevet, i onda odhodala do sredine sobe do kutije i vratila se je natrag.

Reporter:Andy je sa 6 godina napravila prve korake.
Andy:i tata je za sam razlog imao suze u ocima!
Neville/otac/;ja sam plakao od srece ako je nesto bilo “cudo miracle” to je sigurno bilo to.
Reporter:drugi dan je bilo i veci uspjeh i poboljsanje.
Andy: ja sam zeljela vise!
Reporter: i gledaj je sada dokle je dosla?
Andy;sve me je napravilo vise zahtevanja sada i plesem i radim druge strvari kao i drugi, radi veliku razliku.
Reporter:da li ste se osjecali vise kao vasi normalno zdravi prijatelji?
Andy :ispocetka nije bilo,lagano ali sa svakom danom svi me vise prihvacaju.
Reporter:medical scijence je otvorila vrata ovoj generaciji bolesnika , umjesto da dozivotno sjede u invalidskim kolicima oni danas hodaju…Andy kolica hrdaju, ali nitko ne brine za njih…Andy sta je vasa najveca zelja ….(Vilko koment)…trebali ste vidjeti to lijepo lice puno zivota ,intelegent govori divni i razumno…. “da postanem ballerina”
Reporter:…vi stvarno mislite da cete se toliko oporaviti/?
Andy: ja ozbiljno mislim i vjerujem u to.

[Vilko]

nastavak/
Dr.Adam Scheinberg:mi vidimo djecu kako hodaju sa punom stopalom umjesto na prstima.mi vidimo djecu da to rade bes bolova…djeca koja rade korake…pogledajte ih.
Reporter;Dr.Adam Scheinberg je paediatrician specijalista za lijecenje od celebral palsy.
Problem on kaze nije povrijedjen mozak za vrijeme trudnoce ili oko vrijemena rodjenja.
Dr.Adam S.;povreda mozga koja se dogodi ustvari daje povredu nervih koji idu u kicmeni kord i do misica.
Reporter:Ti nervi salju krivu poruku koja daje kontrakciju…sta Botox radi je on nadje te signale, oslobodi misice i zglobove, i ima mogucnost i stalnoga afekta.
Dr.Adam S.;sta ustvari radi je blokira…..i dozvoli misece da se opuste.
Reporter:djeca su injektana svaka tri do sest mjeseca ,u noge, kukove i ruke.
Reporter:za 4 godine starog Cody Hall is neprijatno,posebno za majku je tesko gledati, ali lijecenje je uspjesno,kako se vi osjecate gledajuci uplakanoga sina?
Toni Hall:grozno, ne volim mrzim ,ali makar pomaze.
Reporter;Cody je bio rodjen tri mjeseca prije vremena i vagao je samo 1 kilu…doktori su nakon jedan tjedan postavili dijagnozu celebral palsy.
Tony Hall:je nebi mogla to zazeljeti mojem najvecem neprijatelju, ja sam se …morala priuciti da imamo sina invalida.
Reporter:doma kod kuce na farmy Cody pokazuje napredak.
Tony Hall:tri tjedna sa Botox injekcijama i umjesto….da tipka na prstima on hoda dosta dobro sa punom nogom/stopalom.
Reporter: da li ce tako nastaviti?
Tony Hall;trajati ce oko tri tjedna dok injekcija ne popusti.
Reporter:mislite lid a je to veliki uspjeh?
Tony Hall;stvarno veliki uspjeh.

[Vilko]

Poslije 60 minutes report bio je "javni razgovor i pitanja"

Nemam vremena i nisam u stanju prevesti, a ako ne prenesem ne ce poslije biti dostupno za prenesti.

Vjerujem da ima mnogo osoba koje su zainteresirane, jer pitanja i odgovori pokrivaju razna pitanju za startije/mlade osobe.

prenos je na engleskom!

Interviewer: ninemsn in association with 60 Minutes presents a live interview with Dr Adam Scheinberg, a rehabilitation paediatrician at the children's hospital at Westmead.
Interviewer: Dr Scheinberg, thank you for joining us tonight to talk about this important issue.


Dr Scheinberg: Thank you very much for Channel Nine and ninemsn for having me along.
Interviewer: We will go directly to questions from the many guests who have joined us to talk to you tonight.

Dronning asks: Can you please explain how the Botox is used to help people with cerebral palsy?

Dr Scheinberg: Botox is used in quite a number of ways now in children who look like they are going to be able to walk. We inject it into the stiff muscles (spastic muscles) and it relaxes the muscles and allows the child to move more freely. The main aim in these children is to delay the need for surgery because when a child is older they get a much better result from the orthopaedic surgery, compared to when the child is very young. We also use Botox in children who are more severely affected who may not walk to help prevent their hips from becoming dislocated as they grow. These children can get dislocated hips as the spastic muscles are pulling the hips in different directions. We also use Botox in children who may have pain in their muscles because the muscles are spastic

Flutters asks: How was it discovered that Botox would help these children? Which use was Botox initially developed for, this type of therapy or cosmetic use?

Dr Scheinberg: Botox was actually discovered in the '70s by an ophthalmologist who was looking for a treatment for eyelid spasm. He initially did research on animals and then found that using Botox would relieve muscle spasm. He then started injecting into the eyelids of people who had that spasm, and in the decade after that it was used more widely. In the early '90s, the first trials were conducted injecting Botox into the calf muscles of children who had cerebral palsy who walked on their tippy toes because of calf muscle spasticity. Since that time, through many more research projects, Botox has been found to be effective to treat muscle spasticity, or muscle spasm, in other parts of the body in children with cerebral palsy.

Polly asks: Is botulinum toxin type A listed on the PBS?
Dr Scheinberg: Botulinum toxin type A (the trade names are Botox and Dysport) can be used in children with cerebral palsy but, unfortunately at this time, the government only provides reimbursements for injections into the legs of children with cerebral palsy who are walking or trying to walk. Our hospital funds the cost of those children who are not covered under this reimbursement scheme which is called S100.
Maree asks: Is this treatment available everywhere in Australia?
Dr Scheinberg: The treatment is available at most of the major children's teaching hospitals in the capital cities.
dreadfuldragon78 asks: Have they trialled Botox in the upper limbs at all?

Dr Scheinberg: Yes. Botox has been used in the upper limbs of children with cerebral palsy for over five years. It appears to be quite effective, although there are still numerous research trials looking at the best muscles in which to inject it and the correct dosage to be used.

Alan asks: I have a brother that has CP, he is 28, has had a hip rotation, Achilles release and a hamstring release. Is Botox any good at that age?

Dr Scheinberg: Botox is usually much less effective in adults but does have a role in certain situations. I would recommend review by a rehabilitation specialist or neurologist or orthopaedic surgeon for an opinion.

itsjustme asks: What, if any, are the risks behind using Botox as a treatment for cerebral palsy?

Dr Scheinberg: Botox needs to be given carefully, and the correct dose, and the correct location. If given incorrectly or in the incorrect dose, this could lead to problems such as excessive weakness.

kmap asks: I am a 17-year-old with a mild form of this condition that causes me to have a slightly unnatural walk. Does this treatment hold any possibilities to correct this?

Dr Scheinberg: It may. It will depend on how much muscle spasticity you have in which the Botox can have an affect. I would suggest that you speak to a rehab specialist or an orthopaedic surgeon.

curious asks: My two children have CP. 'Floppy' type. Can Botox help them?

Dr Scheinberg: That is a difficult question as I don't have enough clinical history. Botox is only of use if the muscles are having spasm or are excessively stiff — that is, spastic. Therefore, I would tend to not use it in floppy type CP. Some children who have floppy type CP in their first year may develop some muscle stiffness as they get older. I would suggest that you speak with your doctor or rehab doctor for more advice.

macca asks: Is there any thought that Botox may assist in other brain disorders (specifically MS) in the future?

Dr Scheinberg: Botox is a very effective way to reduce muscle spasm or spasticity by blocking abnormal nerve impulses at the point that they meet the muscle. Therefore, it can be used in multiple conditions where the nerves have been impacted by some damage to the brain, including MS. As a paediatrician, I am not fully aware of the literature around using Botox in adults with MS, but I suspect there would be a role for Botox. I would suggest that you speak with your neurologist.

Lora asks: Hi doctor, do you know or have any idea if the Botox treatment would be of help to a 19-year-old Friedrich's Ataxia sufferer?

Dr Scheinberg: Again, that is a difficult question as children and young adults with Friedrich's Ataxia present in many different ways. If there is muscle spasm or spasticity causing functional limitation or pain then there might be a role for Botox and I suggest that you speak with your neurologist.

wen asks: My son is nine and has autism. He is forever on his toes and as a result he has poor arches and his feet are rolling, could this be of help for him?

Dr Scheinberg: Children with autism and some other developmental disorders, as well as a small percentage of children without any learning problems, can walk on their tip toes from the time they start walking. This condition is termed Idiopathic Toe-walking. There are some doctors who have tried to treat this condition with Botox into the calf muscles, in combination with assistance from a physiotherapist who will make plaster casts or splints for the child to walk in after the injections. There is some debate about how successful this is for this group of children and I think that once children are over the age of seven or eight it becomes less successful. Generally then, at the age of nine, I would be getting an opinion from a physio and an orthopaedic surgeon, as a surgical procedure to lengthen the calf muscle may be very effective.

nastavak/

[Vilko]

nastavak/

Margie asks: Our 34-year-old daughter has an acquired brain injury and is having Botox for the first time this week on her legs to help her walk. We have been told it is not covered by Medicare and it is $380 per injection and is needed every three months. Should it be covered?

Dr Scheinberg: You are correct for your daughter's condition; Botox is not reimbursed by the government. There are several conditions in which research has shown Botox to be effective, and there is an ongoing process of discussion with the government about whether they will be willing to fund these medications. I acknowledge how difficult it is for those families like yours who I look after where there is no reimbursement, but thankfully, for at least the children that I treat, our hospital funds this treatment.

Vic asks: Can you please let me know if Botox can be used to decrease excessive sweating, and how effective is it?

Dr Scheinberg: One of the more recent findings has been that Botox is actually very effective in reducing excessive sweating when injected under the shoulder.

kr asks: I have chronic pain from nerve damage from giving birth to our son, I have an Internal Nerve Stimulator connected to my S3, I still have a pain problem. Can Botox help?

Dr Scheinberg: Botox may play a role and is now starting to be used for gynaecological conditions such as you describe. This is not my area of expertise, but I suggest that you discuss this with your gynaecologist.

Natalija asks: Is the Botox treatment available overseas or just in Australia?

Dr Scheinberg: The Botox treatment is available very widely throughout North America, parts of South America, Europe and parts of Asia.

Rob asks: Can any doctor/surgeon administer Botox? I say this because I'm in Tasmania and there does not appear to be many doctors here using it.

Dr Scheinberg: Actually Botox can only be administered by some specialists such as orthopaedic surgeons, neurologists and some rehab specialists. There are some areas in Australia where this service is not available and we sometimes have children and their families travel long distances to get this treatment. This is not ideal; however, with children there is often a large team involved — physios, occupational therapists and nurses, so it is sometimes difficult to provide this treatment in more remote areas. I do not know from your request whether you are interested in this treatment for a child or an adult, but I believe that in the near future, a paediatric specialist who will be able to administer this treatment will be available in Hobart.

PQR asks: On how many cerebral palsy cases has Botox been used?

Dr Scheinberg: I don't know the exact number, but it would number in the tens of thousands. In our unit alone we have treated over 3000 children.

Rudi asks: Can you comment on a relationship between injection in the lower limb and bowel or bladder incontinence?

Dr Scheinberg: We have found in a very small number of children that after injections in their legs, particularly if the injections are in their thigh or hamstring muscles, that they may have some episodes of incontinence following the injections. The problem has not continued more than three or four weeks for any of the children we have treated. This is most likely as a result of a spread of the Botox from the site of the injection to the nerve/muscle which controls the bowel and bladder.
ellen asks: What is the best age group for this treatment?
Dr Scheinberg: It depends on the reason you are giving the Botox. In children who are attempting to walk or who are walking with difficulty, Botox is ideal from 18 months up the age of about 10 or 11 at which time they will have orthopaedic surgery. Following the surgery they may need some more Botox up until the time they stop growing, but some children don't need any more after the surgery. For children who are getting Botox into their arms, they may get Botox from a young age, and we are still learning for how long they may benefit. We have seen some older children get benefits from injections into their arms at an age that they probably would not get such good benefits from injections into their legs. A third group of children who get Botox to reduce painful muscle spasm get Botox at an early age and continue to need it as they get older. Finally, we also use Botox to prevent hip dislocation in more severely effected children and generally this works best from around the age of two up until nine or 10 years.

Dr asks: Dr Scheinberg, a million congrats. How much does it cost to treat a child? I would like to make a donation to Westmead to help Dr Greg.

Dr Scheinberg: All donations are gratefully received. They can be sent to the department of rehabilitation at the children's hospital at Westmead. To treat a very young child with Botox costs around $500 just for the medication, and around the time that the child is five or six years, we are using about $2000 worth of medication. There are of course many other costs to giving this treatment which include physios, occupational therapists, nurses who provide sedation during the treatment — all are essential in maximising the benefits of this treatment.

Russell asks: What is the difference between Botox and Phenol? Both have been used on my daughter.

Dr Scheinberg: Phenol is a medication that has been around for a long time and was used extensively before Botox came along. The good things about Phenol are that it is very cheap and the effect tends to last longer than that of Botox. The drawbacks are that it is a more difficult medication to use, that is, you need to be very skillful when using it, and it is also painful to the person being injected, so in children I always do it with the child under general anaesthetic. My preference is always to use Botox as the first line treatment but in some children, where there are too many muscles to safely use Botox, I might use Phenol in the muscles in the thigh — the adductor muscles. This allows the Botox to be used for other muscles and it seems that when the Phenol is injected into the adductor muscles (actually it is being injected to the nerve that goes into the muscle) there are less side effects than when it is injected elsewhere.

debbie asks: Is Botox used for cosmetics altered in anyway to treat CP?

Dr Scheinberg: No. It is exactly the same medication, but much smaller amounts are required for cosmetic treatments.

imafan asks: It seems that Botox has been used for a number of things for sometime, how come its only hit the news now?

Dr Scheinberg: I am not sure how to answer that question. Certainly the research has been going on for a number of years, but sometimes there is quite a long lag time between the research and the public and the press making a big story of it.

zeee asks: Is there any way that the Botox can make things worse?

Dr Scheinberg: All medications and treatments can have side effects and Botox is no different, although we do rarely see side effects with this medication. The main problem that can occur with Botox is that it can relax the muscle too effectively which can lead to weakness. Children with CP are often already weak, and sometimes making them weaker can make their walking worse. There is a fine balance between taking away the stiffness and not making the child too weak to function.

lk asks: Could you comment on what will happen to children who regularly need Botox for muscle spasticity once they become adults and can no longer receive funding?

Dr Scheinberg: A majority of children receiving Botox into their legs to help them walk will not require Botox as adults. In that case, Botox is just delaying the need for orthopaedic surgery as well as maximising the child's capability so that they get the best result. For the smaller group of children who for example receive Botox into their arms or other muscles for painful spasms, it is a problem as to how they are funded in the adult health system. Some adult public teaching hospitals do fund this treatment, but they must do this out of their internal budget or out of donations. I agree with you, for adults who continue to need this treatment, funding is a difficult problem.

nastavak/

[Vilko]

nastavak/

Hannah asks: My granddaughter has had three Botox injections; she is 10 years old now. She did have a response to the first injection but nothing to the other two. Doesn't it work for everyone?

Dr Scheinberg: Like all medications, for some children this works brilliantly, for the majority it works well, and for the rest it might work well once or twice or might not work at all. Often, as children get older, it seems to be less effective. This may be because the muscle has become contracted or short. Usually when that occurs, Botox is no longer effective, but surgery at that time can be.

Jam asks: Do you think the government could have a part is making it more accessible? Is there anything that we, the public, can do to help make it available to a wider group of those that need it?

Dr Scheinberg: You can speak to your child's paediatrician about how you can help. One of the best ways to help is to support the hospitals or programs that do the work. In the end, the government will tend to only fund those treatments which have been shown to be effective. The research showing that Botox is very effective to help children walk has been done and that is why the government has funded that indication.

Lora asks: Where can we find out what conditions Botox can help with, eg. research pages?

Dr Scheinberg: It depends what conditions you are looking for. There is a very good website for children and adults with CP which describes the use of Botox. That site is called www.wemove.org.

Interviewer: Unfortunately we are out of time; do you have any last words for those that have joined us tonight?

Dr Scheinberg: I would like to thank everyone who has shown an interest, not just in this treatment but in this amazing group of people who continue to achieve their goals despite their disabilities. More research is what is needed to show the effectiveness of this and other treatments. I am happy to be contacted at the Children's Hospital at Westmead in the department of Rehabilitation. For those kind people who have asked about donations to our research or treatment programs for children with CP, they can be sent to the Department of Rehabilitation at the Children's Hospital at Westmead, locked bag 4001, Westmead NSW 2145. Cheques should be made out to the Department of Rehabilitation at the Children's Hospital at Westmead.

Interviewer: Once again thank you and goodnight. This concludes our live chat with Dr Adam Scheinberg, July 3, 2005.

Produced by ninemsn.com.au in Sydney, Australia.
© 2005 ninemsn.com.au.
Thanks for joining us tonight.

The end!

[lahor]

Botox nije nikakvo čudo niti neka velika novost, koristi se već par godina i u Hrvatskoj za liječenje cerebralne paralize.

Inače, ima on dosta prednosti, ali i mana.

[Vilko]

lahor kaže:
Botox nije nikakvo čudo niti neka velika novost, koristi se već par godina i u Hrvatskoj za liječenje cerebralne paralize.

Inače, ima on dosta prednosti, ali i mana.

Veoma mi je drago cuti ...da svi znaju o tome i da se koristi u hrvatskoj.

Znaci mi smo veoma zaostali za vama!
Rade veliku pricu oko nesto sta je normalno kod vas...vidi ti australijskih specijalista, sta si ne dozvole!

pozdrav