This morning, I called the doctor who gives Max Botox injections and left a voicemail about scheduling an appointment; his occupational therapist at school says she thinks his thumbs are getting much tighter. The Botox injections Max has gotten over the years have really helped loosen up his tightness and made it easier for him to pick up and grasp things.
This afternoon I found out about little Dee Spears, whose mother is suing the makers of Botox for causing her death. Dee, a 7-year-old with cerebral palsy from Potters County, Texas, had been getting injections in her legs to alleviate muscle spasms. Evidently, she started having issues with breathing and swallowing afterward. She died in 2007 from respiratory failure and pneumonia. Her mother is saying an overdose of Botox caused her death; Allergan, the company that makes Botox, is blaming a bacterial issue unrelated to Botox. The case is being tried in court now.
My heart aches for this mother, whose grief must surely be laced with so much anger, perhaps even guilt. Botox was supposed to improve her child's life; instead, it might have killed her.
If you're a mom of a kid with special needs you know just what it's like to want to do something, anything, to help your child, enable him function, allow him to live a life less challenged.
Have you tried, or considered, Botox for your child?
My son gets it regularly in his legs and left arm. Scary stuff, but I trust his specialist and they are very careful. Very sad for the family.
ReplyDeleteThey're pushing hard for Botox for Charlie and while I think it will be fine, the rest of my family adamantly disagrees. So, for now, we're still skipping it.
ReplyDeleteDarsie is on round two. We won't be doing it again but because it has already lst its effectiveness.o
ReplyDeleteMy son suffered from a lot of low tone issues. He's 18 now, and Botox was not an option back when he could have used it. I think I'm glad I didn't have to make that decision. As it is, he was on growth hormone for seven years and is now on Stratera (after trying several other ADD meds). Medication is never an easy decision. You are always weighing the cost/benefits.
ReplyDeleteTried it, three times total, now, and it worked like a charm. When combined with a ton of stretching exercises and use-use-use of the affected muscles, for someone with a very mild degree of compromise, it makes a world of difference and has really helped to "even things out," if you know what I mean. The post-injection stretching/use protocol is key to making the results last for a good long time, IMO.
ReplyDeleteI hadn't heard about this case, though--but then, I'm a head-in-the-sand/don't-look-for-trouble type. Could it be that it was the DOCTOR that screwed up and overdosed the child? Or injected in the wrong spot? Could it be the poor little girl just took ill from something entirely unrelated? If this little girl got injections in her leg, that stuff would have had to "migrate" a long way to cause breathing troubles, wouldn't it?
I certainly hope that this form of treatment doesn't go by the board as a result of this case. Maybe dosages might be reduced a bit, instead. The alternatives to BOTOX for loosening things up are MUCH more invasive-- "general anaethesia" as opposed to that twilight sleep stuff (with all that entails) and full-bore surgical intervention--not every child has a degree of compromise that truly warrants knocking them out and putting them under the knife--at least, so long as there's BOTOX as an alternative and family who are willing to put your child through the post-injection stretching and exercise work (thanks, Dad!) to maximize the results.
It's such a sad story. And it's one more thing to worry about.
Let me start out by saying I'm Jewish, so I can't say for sure, but to me, botox day is like christmas twice a year and I count down to my appt day for weeks. I started getting botox in 2006 at age 19, so whoever said 18 is too old, it isn't. I will be getting botox for the rest of my life. Does it bother me that 4 years ago we were doing 3 muscles in my right leg, and now we do 7 muscles in both legs, back & a shoulder? Somewhat. Does it creep me out that botox is based from botulism, a very deadly food poisoning? I try not to think about it.
ReplyDeleteBut you know what REALLY bothers me? Not being able to sleep if it wears off before my next appointment because the pain from the tightness in my back wakes me up several times a night. Or when I have panic attacks so bad that my sudden gigantic increase in spasticity makes me cry. If I have a choice between pain or botox, I'll always pick botox any day. Also, if I have a choice between oral meds or botox, I'll always pick botox any day. To me the side effects of meds like valium are much greater. Benzos make me much LESS functional, not more, and make me SEVERELY depressed.
Off in my parallel universe, I had to make the decision for myself whether to try Botox injections for a urological problem. I was not real keen on the idea of injections of a toxin. Ultimately my federal disability insurance, the only coverage I have, made the decision because they don't pay for it. And that was the end of that.
ReplyDeleteFaith did two rounds of four injections in each leg in 2008 and 2009. It did do a lot of good but the required casting afterwards is where we had problems. In the end, Botox just wasn't enough to control that spasticity and we opted for the surgery.
ReplyDeleteMy son, aged 5, has received five rounds of botox in his legs (mostly his hamstrings and gastrocs), and, overall, I've been thrilled with the results. The decrease in tone has allowed him some much-needed relief from such continuous tightness, and with each round, he was able to make some rather large functional leaps. After his first round, he started crawling on all fours; after his second, he started crawling up the stairs, after his third, he was able to put himself into a sitting position, and after his fourth, he started functionally walking with his reverse walker. With rather obsessive stretching, and increased therapy, he has managed to retain the function, even after the botox wears off. Unfortunately, his fifth round didn't have such impressive results ... and I believe we are reaching the end of its effectiveness.
ReplyDeleteI am very thankful for the three years of botox -- it has prolonged surgical intervention, which, unfortunately, will be our next step. Jonah never suffered any adverse reactions.
I feel very badly for Dee Spears' family. What a tragedy, regardless of what or who caused her death ...
Good luck to all of you who are in the process of whether or not to botox ... it can be a difficult decision, but I firmly believe it was the best, and right, decision for my son.
We are going injections in our son's right arm and leg. It has really helped his right let and we have seen marked improvements his his ability to weight bare and take steps. The effects do wear off after 3 months and we are back to being very tight until we get the shots again a 4 months. Our doctor is great and we use a little numbing cream 2 hours before the injections. Our son doesn't even cry for the shots anymore (he is 5, and has had 3 rounds so far). His arm is much looser after the shots but we still haven't achieved any functional use. We keep stretching and working on it!
ReplyDeleteDaniel just got his done about a month ago, and we have seen wonderful results. He's running around with his left heel down and his toes pointed straight, even without his brace. However, I have reservations about continuing it. There is of course a risk when Botox is used, and some studies now suggest that using it long - term could cause permanent muscle damage. Oh, and let's not forget the good - natured teasing I get for not letting him drink soda but agreeing to basically poison him! Haha. It's a tough one, to say the least.
ReplyDeleteI know I don't have to tell the other parents of children with special needs how difficult it sometimes is to make decisions for our children. Leave things alone and cause painful contractures? Improve quality of life by injecting a potentially dangerous neurotoxin? It's a tough job, to say the least.
WOW, this article couldn't be more timely for me! My son will be getting his 1st round on 3/25. He turns 2 in March. One orthopedist and physiatrist told me that I was 'holding him back' by not getting the botox. He really wants to move his legs forward and walk in his gait trainer, but his left leg is just too tight. Once I heard that, I made the appointment. NOW, I don't want to make a decision that would ultimately hurt him in the long run. Why can't anything be easy?? ;)
ReplyDeleteHas anybody received their BOTOX in Boston? I am really trying to decide between 2 physiatrists right now.
My 6 1/2 year old daughter has been getting botox in her hamstrings since she was 3 years old. Every 6 months like clock work. For us, it still works and like other people mentioned, it is putting off surgery. It was not an easy decision to make. Nothing with medical intervention is. But, we trust her doctors and therapist, who have her best interest at heart.
ReplyDeleteI feel for the family. My heart aches for them.
I have had to make decisions about medication to help my sone with autism get to and stay asleep. All of his sensory issues were making it so he couldn't calm down to get to sleep. Then he would wake up at 2:00 am ready to go for the day. The good news is the teachers are noticing a difference at school. Who can sit still and concentrate when they are exhausted!? I am also able to be a better parent to all of my children when I get a good night sleep.
ReplyDeleteWow! I hadn't yet heard about little Dee. My heart goes out to her family. I can only imagine what her parents must be going through. My son, Jailen, is almost 5 & has CP. He's gotten Botox injections twice in both calf muscles to loosen his ankles/feet, but that was over a year ago. I was scared to death to do it, but I was willing to try it out & see if the results outweighed the risks. He loosened up slightly, not much of a difference, but didn't last through the next appt. I really didn't feel like we were seeing anything worth risking the dangers of Botox, so we stopped. He had casting done after the first two shots & always had plenty of therapy/exercise, but I still didn't see much of a distance. We've recently completed 80 sessions of Hyperbaric Oxygen Therapy & that's what I call our "Miracle Therapy"! It has completely changed my son. Not only has it helped with his spasticity, but it has made major improvements in his oral motor skills such as speech & feeding. He also has Hydrocephalus with lots of headaches & they have been completely healed since the HBOT. Two days ago he started spelling his 6 letter name all by himself & today he pedalled a tricycle for the first time. I know Botox is covered by most insurances & HBOT is not, but there's so much more at stake with the Botox. HBOT doesn't really have any side effects. I hope this helps. Ellen, I absolutely love your blog!! Jailen's color fixation is BLUE! lol Thank you for sharing your life with all of us!!
ReplyDeleteGabriel's PT thinks we should consider botox rather than serial casting, but my husband and I are nervous about it. We consulted our orthopaedic doctor and he said absolutely not; he was far too young (he'll be six in a few weeks) and if casting is working (and it does) not to stop doing it until absolutely necessary. It was a relief to hear him say that because we really weren't sure it was the best decision for our family.
ReplyDeleteThat being said, I do know quite a few people whose children have botox and their quality of life is SO much better because of it.
Celia,
ReplyDeleteDaniel's Botox is done in Boston. I'll send you an email about it.
Jo--thank you..it's erinbotelho1@gmail.com
ReplyDeleteYou probably know the two I am deciding between. ;)
I can't stop thinking about Dee Spears, but I am at least glad these comments have put Botox in perspective and helped you get some feedback on Boston physiatrists, Erin.
ReplyDeleteEllen, I was just about to blog regarding whether to botox or not this week.
ReplyDeleteI go through such extremes to keep Nathan's body as "clean" as possible - GFCF diet, everything organic, the best supplements possible. To then inject poison into him??!!! It makes me shudder just to think of it! But this one nurse is saying that it would give him a lot of function in his hands (he keeps them fisted) and would open up a whole new world for him. So I feel torn - am I holding him back from development in trying to protect him? Or am I helping him by keeping his body free of toxins? Hard hard choice for me!
Margaret provided a good reference on botox this week. Barbara
ReplyDeletehttp://yourtherapysource.blogspot.com/2010/01/pharmacologic-treatment-of-spasticity.html
Evan's rehab doc is pushing for it but I am reluctant. His PT is not sure that it would be effective in his case and her reservations are enough to make me want to hold back. I am not saying no forever but I am just holding back for now.
ReplyDeleteMy son Tyler is 4. He was not treated for his spastic muscles till he as 3. He was doing REALLY well and our orthotic doc and orthopedic surgeon from Shriners suggested it. They suggested the spinal thing at first so we looked into that and it wasn't an option for him. They wanted to try botox first.
ReplyDeleteTy did 2 rounds. We then moved to Utah where we had other docs. The Botox had well worn off by the time we got into another physiatrist here. We have 2 of them now. We decided to go with the Phenol shots. They were stronger. And they seemed to work better for him. Though I am not opposed in any way to do a round of Botox along with our regimen of phenol.
Here is my reasoning: Ever since he was little we have had to make life altering decisions. We have had to weigh our options and make them according to what the long term could hold for him. Will this make what is hard now easier then. If we didn't try botox how can we look at ourselves and say we did all we could?
That said, while we are sitting in the docs office and they are telling us the risks of using botox and we have googled (NEVER DO THAT unless you are ready to freak on any medical condition) and we knew the risks. We had to decide if that risk is worth it.
We had better luck with Phenol than we did with botox. Would I do it again? In a heart beat. Do I feel bad for this mom yes. The risk of what she went through is LOWER than having a shunt malfunction.
I wish her luck. 3 million is a lot of money.
My daughter has had Botox twice. The second time she had respatory issues about 36 hours after the injection. I have no clue if it was the Botox or just a cold but we wont do it again. however we see way better results from phenol so that has become our relaxer of choice!
ReplyDeleteI think that botox is great and really not something to put a whole lot of worry into. There is always risk but we don't always get the full story especialy when it is shown on a less then 2 minute news segmant.
I am so sorry for that families loss.
We have had botox - so far with no side effects. My current concern is that my daughter had the siwne flu vax last saturday and has since lost her ability to crawl and sit. Definite feelings of guilt - it was MY choice for her to have it. She didn't choose it. And now she has lost her mobility as a result. Hopefully only temporarily.
ReplyDeleteWhen most of my kids were younger, Botox was not an option; tendon lengthenings were the common treatment. My daughter did have one Botox injection to muscles in her neck when she was having really bad spasms, but with such severe spasticiy/dystonia, it didn't make much difference.
ReplyDeleteIt's always difficult to make that decision for a medication or procedure for your child, when there are risks of serious side effects. When my daughter was in middle school, the neurologist pushed hard for us to go with the Baclofen pump. I had concerns about it and decided against it. Since then I've treated several patients who had the pump implanted and all of them either had severe complications or a decrease in function, and I was glad I didn't go through with it.
On the flip side, one of my sons, who is schizophrenic, has to be on clozapine. This drug has such potentially dangerous side effects that only certain pharmacies are allowed to dispense it, and the monthly blood work has to be faxed to the pharmacy before they can fill the prescription. It has caused him to gain weight, develop diabetes and high cholesterol (at age 22), and makes him sleep 18 hours/day. But when the alternative is being totally non-functional, hallucinating and suffering from delusions, pacing and laughing for 20 hours/day, paranoia, and the inability to complete a simple task like putting his shoes on, what choice do we have? Tough decisions...
I couldn't sleep last night thinking about her, and how awful her mom must feel. My heart goes out to their family.
ReplyDeleteI don't know the details of this story, but at Bloorview, we don't use Botox to treat children who have had pre-existing aspiration pneumonia or swallowing problems because they are at greater risk.
ReplyDeleteYou may want to read Bloorview's response to a Health Canada report on Botox at:
http://www.bloorview.ca/newsroom/stories/botoxupdate.php
woops -- missed part of that link:
ReplyDeletehttp://www.bloorview.ca/newsroom/stories/botoxupdate.php
Thanks Barbara for the mention. Here is the link, Pharmacologic Treatment of Spasticity in CP to read recent research on the use of Botox in children with cerebral palsy published in Neurology.
ReplyDeleteWe had a lengthy discussion w/the Dr before deciding to go w/Botox. He even called the night before Sierra was scheduled to have her first injection,just to re assure us & answer any questions me still might have had. We decided to give it a try. Unfortunately, it didn't work for Sierra & we wound up having the surgery instead. I still think we made the right decission(trying it) There are no guarentees in life. We just have to have faith that we are doing the best for our children. To me the surgery was far more frightning & risky then the Botox injections. By the way, the surgery was a huge sucess! I am happy to report that Sierra now walks flat footed & has little to no pain in her back or legs)
ReplyDeleteMy heart breaks for that family.
ReplyDeleteWe did Botox for Isaiah's drooling. We saw marked improvement following the 1st round, but not so much following the 2nd. By the 3rd time, I couldn't reconcile or rationalize why we were putting him through that torture--although short-lived.
We decided to concentrate more on his mouth and swallowing issues--with therapy--rather than medicate him for the drooling.
I don't regret our decision to halt the Botox, but I also don't blame parents for doing whatever they feel will benefit their children.
My doctor discussed it with me in the hospital (like day 4 post op) when I asked him why I couldn't bend my knees. He just kind of said, "Well we can just Botox that later, no problem." But I've heard so many varrying stories about it I'm doing my own research before we even have the discussion again.
ReplyDeleteCelia & Leo. My Katie sees Dr Nemick at Boston Children's. She is very well respected and sought after. My Coord care doc had to beg to get her into her case load. She is worth the wait and by far the best.
ReplyDeleteWe are getting our botox and phenol injections in Feb. for the first time. All of this is overwhelming. But as a parent of a child with special needs. It seems we are constantly confronted with situations where we hope to act in their best interests, and sometimes it is not always a clear direction.
Good luck!
Sarah
mamasavesalot.blogspot.com
Counting yays and nays for trying botox, the yays win.
ReplyDeleteStopping back in to mention a newer less-invasive surgery procedure for persons with spastic legs - PERCS. I think this technique is used in only two places regularly - the NE - Boston? and in Texas. You can find out about it through a search.
Barbara
Sarah--thanks! Dr. Nimec is exactly who we have the shots scheduled with for 3/25. I was just uncomfortable with the full anesthesia, but after a few emails with other moms overnight...I am feeling more confident. Also, I hate that it isn't an 'exact' science...a little here...maybe more next time...etc. I was an Algebra teacher for a few years, so I like things to be precise!
ReplyDeleteThanks theextras! I will also look into that!
Ellen--thanks for your blog, and for having such an amazing son.
xo
My son has gotten botox in his legs a few times. The last time the benefits only lasted a month. We no longer have that as an option.
ReplyDeleteBloom had a blog post not too long ago, in which she discussed the discrepancy in funding for research in CP compared to autism, based on numbers of people affected. When she published those numbers, the main thing that went through my head was that, in this day and age, there should be more effective treatments for spasticity. My daughter, who is 25 and has severe athetoid/spastic CP and/or dystonia, has not been able to get relief from the pain her spasticity causes. There needs to be more research into treatment for spasticity, in my opinion.
ReplyDeleteI've learned a lot from these comments; I am going to ask about Phenol. And, YES, Galen, you are so right—there is a lot more research into autism than cp. I think that is mainly because the autism community is a much more organized, vocal group. It doesn't hurt that in-the-news people like Jenny McCarthy have raised awareness (as controversial as she's been). There really ought to be more treatments for spasticity; I hope we'll see some sooner rather than later.
ReplyDeleteHere's a post I wrote almost 2 years ago - A Range of Treatment for Spasticity.
ReplyDeletehttp://www.therextras.com/therextras/2008/03/a-range-of-trea.html
I hope the lawsuit agains Allergan /Botox does not end up like the silicone implant trials-huge settlements but never any evidence of harm. Or lately, MMR vaccine and autism-no proof. I would hate for this useful treament to be lost.
ReplyDeletehttp://www.pbs.org/wgbh/pages/frontline/implants/cron.html
We have had my daughter Emma do botox shots due to her CP before. But I have been friends with Dee Spears online for a few years now, and after her daughter Kristen died, I will never again get botox for my Emma. Kristen was a beatiful little girl, full of life before this nasty drug took her life. They lost their court battle, but will appeal. Please those of you considering using botox pay attention to these warnings, its is NOT safe! Don't let Kristen's death be in vain, learn something for it. They may have lost their court battle, but they will never lose the battle against helping others
ReplyDeletewhat a sad story! I'm so sorry for the family! but I don't think that botox injection is harmful for your child. I also know some people whose children had botox and now their life is much better because of it.
ReplyDelete@Kim23--How can you say its not harmful? You are aware that is a poision? There have been many deaths linked to it not just this case. I agree it does help some people. It won't kill all people that use it, but the point is, it can and we aren't being warned of that. My daughter will never get it again, we got pretty decent results but it didn't make her walk or talk or do anything other than open her hands a little more, and to me that isn't worth the risk of death
ReplyDeleteI have been reading the above posts with great interest and felt that I had to post my response and my son's experiences with Botox injections.
ReplyDeleteMy son is now 15 and has severe Cerebral Palsy and is in a wheelchair full time. (GMFCS Level 5=most severe category)
In July 2004,at age 7, my son went in to hospital for some orthopaedic surgery - hamstring & adductor releases, along with his first large doses of Botox in those muscles, to try to alleviate some of the spasticity.
When he awoke from the anaesthetic, he had very severe breathing issues; it is called Inspiratory Stridor, which is a partial airway obstruction.
Prior to the surgery, my son had NO history of any breathing issues or problems at all. He breathed completely normally. It didn't occur to me at all at the time that it could have been the Botox as I knew very little about it and thought his breathing issues were just from the anaesthetic and pain meds he'd had. No one seemed to be able to provide any answers as to why he was having so much difficulty breathing. The nurses and I were there for hours trying to position my son's head so his airway was open so he could breathe but it was so difficult, nothing seemed to help!
The ENT team (ear nose & throat specialists) did a bronchoscopy some weeks later, under anaesthesia to check his airway and all the structures were normal, they found that there was no damage/swelling from the breathing tube they used during surgery to help his airway (intubation), so that couldn't be causing his Stridor. Everyone was perplexed as to why he couldn't breathe properly; no one could provide any answers...
Over the next couple of years or so, he had more Botox injections to treat spasticity and I started to notice a pattern in that his respiratory function deteriorated quite markedly after having Botox. He contracted chest infections each time after having Botox and the Stridor became much worse.
The ENT team ummed and aahed about what they could do to assist his breathing and said that there was an operation but would leave him with a huge risk of aspiration and 'wouldn't be a good idea' to do. They did remark that he would probably end up needing a tracheotomy in the future as a 'worst-case' scenario. (Read on for what actually did happen years later..)
My son struggled on for the next 7 years or so with difficult laboured breathing. The crunch came last July 2012 when he got pneumonia again and was in Intensive Care for 3 months whilst they tried to work out what to do about his breathing. Six operative procedures were carried out on his upper airway to try to open up the airway but they failed as he continued in his struggle to breathe. It became so bad that he had severe sleep apnoea at night and he would stop breathing several times during the day too.
There was nothing else left to do or no other choice and so my son had a Tracheotomy performed and thus now breathes via an artificial airway! His breathing issues have now thankfully been resolved but the complex care involved in caring for a tracheotomy is arduous, time consuming and not always pleasant for my poor son. His quality of life had been quite poor in all the years of struggling to breathe 24 hours a day.
(cont'd below..)
cont'd from above...
ReplyDelete..I have since found out a lot more about the so-called 'wonder drug' Botox and I say without hesitation to those parents considering having it done for their child, to please BE AWARE and be very careful in the decisions you make for your child. In 2004, I was blissfully unaware of what Botox actually was, I didn't have the internet then, so trusted the doctor's judgement on what he thought 'best' for my child. It was being routinely injected in an 'off-label' use that of which hadn't been officially approved. (and I didn't know that at the time or alarm bells may have sounded then) The orthopaedic team still refute to this day the claims I have made about their 'wonder-drug', they simply refuse to believe that it was the Botox that caused all my son's problems. (However they did publish my son's case anonymously, in an online medical journal for all the medical fraternity to see, mmm, now why was that I wonder??)
The doses used in kids with severe CP are very high. The muscle where it is injected cannot apparently absorb all the Botox, so it can enter the bloodstream and migrate to other parts of the body - which I strongly believe is what happened in my son's case.
Botox is not the same strength as Botox Cosmetic; it is much more concentrated and potent. (Only a few drops are used in cosmetic surgery and has far less potency than what's used in kids with CP)
Yes I too harbour feelings of guilt from time to time too, whenever I look at my son and see how much he suffers on a daily basis with all the other complex medical and pain issues he has to contend with. That really hurts and breaks my heart.
I totally sympathise with Dee Spears and what happened to her poor daughter, Kristen. Very sad and that breaks my heart too.
Sorry this post has been so long but I feel I have to advise others as this has been a long, stressful and painful journey with my son, in what started out to be a relatively 'simple and trouble-free' procedure to help his spasticity.
Anon the Internet DID exist in 2004... Its been around for ages.
ReplyDelete