tag:blogger.com,1999:blog-401303964563152307.post7538878271197416546..comments2024-03-28T03:35:52.176-04:00Comments on Love That Max : The death of Dee Spears: Could Botox injections hurt your child?Ellen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger47125tag:blogger.com,1999:blog-401303964563152307.post-69295232603741083842013-09-07T14:38:24.736-04:002013-09-07T14:38:24.736-04:00Anon the Internet DID exist in 2004... Its been ar...Anon the Internet DID exist in 2004... Its been around for ages. tharahttps://www.blogger.com/profile/06178926420365797564noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-10671219109307676452012-04-13T23:47:09.612-04:002012-04-13T23:47:09.612-04:00cont'd from above...
..I have since found out ...cont'd from above...<br />..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??) <br />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. <br />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)<br />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. <br />I totally sympathise with Dee Spears and what happened to her poor daughter, Kristen. Very sad and that breaks my heart too. <br />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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-18952698385370695682012-04-13T08:31:51.678-04:002012-04-13T08:31:51.678-04:00I have been reading the above posts with great int...I 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.<br />My son is now 15 and has severe Cerebral Palsy and is in a wheelchair full time. (GMFCS Level 5=most severe category) <br />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.<br />When he awoke from the anaesthetic, he had very severe breathing issues; it is called Inspiratory Stridor, which is a partial airway obstruction.<br />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!<br />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...<br />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. <br />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..) <br />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. <br />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. <br />(cont'd below..)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-48831284514386029322011-03-03T10:30:01.547-05:002011-03-03T10:30:01.547-05:00@Kim23--How can you say its not harmful? You are a...@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 deathLJRhttps://www.blogger.com/profile/00136796552019973479noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-23947662450345283042011-03-01T05:49:18.856-05:002011-03-01T05:49:18.856-05:00what a sad story! I'm so sorry for the family!...what a sad story! I'm so sorry for the family! but I don't think that <a href="http://www.tcclinic.com/" rel="nofollow">botox injection</a> is harmful for your child. I also know some people whose children had botox and now their life is much better because of it.kim23https://www.blogger.com/profile/17376588685421919224noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-14869768663753375042010-04-22T11:12:46.526-04:002010-04-22T11:12:46.526-04:00We have had my daughter Emma do botox shots due to...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 othersLJRhttps://www.blogger.com/profile/00136796552019973479noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-76834542900799999502010-02-19T15:21:44.224-05:002010-02-19T15:21:44.224-05:00I hope the lawsuit agains Allergan /Botox does not...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.<br />http://www.pbs.org/wgbh/pages/frontline/implants/cron.htmlAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-90043417213255679992010-01-30T19:38:37.074-05:002010-01-30T19:38:37.074-05:00Here's a post I wrote almost 2 years ago - A R...Here's a post I wrote almost 2 years ago - A Range of Treatment for Spasticity.<br /><br />http://www.therextras.com/therextras/2008/03/a-range-of-trea.htmlAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-37689519106403141652010-01-30T15:46:03.524-05:002010-01-30T15:46:03.524-05:00I've learned a lot from these comments; I am g...I'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.Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-70188696342604220102010-01-30T15:25:13.315-05:002010-01-30T15:25:13.315-05:00Bloom had a blog post not too long ago, in which s...Bloom 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.Galenhttps://www.blogger.com/profile/02133622477462629829noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-17728330127654683412010-01-30T01:18:05.544-05:002010-01-30T01:18:05.544-05:00My son has gotten botox in his legs a few times. ...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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-38452632727850275042010-01-29T21:25:37.701-05:002010-01-29T21:25:37.701-05:00Sarah--thanks! Dr. Nimec is exactly who we have t...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!<br /><br />Thanks theextras! I will also look into that!<br /><br />Ellen--thanks for your blog, and for having such an amazing son.<br /><br />xoCelia and Leohttps://www.blogger.com/profile/04605391238515987002noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-34303862815156635522010-01-29T17:43:35.412-05:002010-01-29T17:43:35.412-05:00Counting yays and nays for trying botox, the yays ...Counting yays and nays for trying botox, the yays win. <br /><br />Stopping 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. <br />BarbaraAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-78924316492839952662010-01-29T15:18:16.317-05:002010-01-29T15:18:16.317-05:00Celia & Leo. My Katie sees Dr Nemick at Boston...Celia & 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. <br /><br />We 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.<br /><br />Good luck!<br />Sarah<br />mamasavesalot.blogspot.comSarahhttps://www.blogger.com/profile/15957844930832373646noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-63169154231022966402010-01-29T15:15:44.866-05:002010-01-29T15:15:44.866-05:00My doctor discussed it with me in the hospital (li...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.Sarahhttps://www.blogger.com/profile/11487929409620456161noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-43961790800289948462010-01-29T14:25:53.166-05:002010-01-29T14:25:53.166-05:00My heart breaks for that family.
We did Botox for...My heart breaks for that family.<br /><br />We 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. <br /><br />We decided to concentrate more on his mouth and swallowing issues--with therapy--rather than medicate him for the drooling. <br /><br />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.Sharonhttps://www.blogger.com/profile/02479345204252020874noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-84294124027936068032010-01-29T10:31:48.062-05:002010-01-29T10:31:48.062-05:00We had a lengthy discussion w/the Dr before decidi...We 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)Kathynoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-55380575898782348262010-01-29T10:04:41.671-05:002010-01-29T10:04:41.671-05:00Thanks Barbara for the mention. Here is the link,...Thanks Barbara for the mention. Here is the link, <a href="http://yourtherapysource.blogspot.com/2010/01/pharmacologic-treatment-of-spasticity.html" rel="nofollow">Pharmacologic Treatment of Spasticity in CP</a> to read recent research on the use of Botox in children with cerebral palsy published in Neurology.Your Therapy Sourcehttp://www.yourtherapysource.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-80496828176669745952010-01-29T09:01:48.917-05:002010-01-29T09:01:48.917-05:00woops -- missed part of that link:
http://www.blo...woops -- missed part of that link:<br /><br />http://www.bloorview.ca/newsroom/stories/botoxupdate.phpBLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-21059477909127669122010-01-29T09:01:05.404-05:002010-01-29T09:01:05.404-05:00I don't know the details of this story, but at...I 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.<br /><br />You may want to read Bloorview's response to a Health Canada report on Botox at:<br /><br />http://www.bloorview.ca/newsroom/stories/botoxupdate.phpBLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-89620991242521114462010-01-29T08:42:33.409-05:002010-01-29T08:42:33.409-05:00I couldn't sleep last night thinking about her...I couldn't sleep last night thinking about her, and how awful her mom must feel. My heart goes out to their family.Celia and Leohttps://www.blogger.com/profile/04605391238515987002noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-28488616311063951662010-01-29T03:46:10.348-05:002010-01-29T03:46:10.348-05:00When most of my kids were younger, Botox was not a...When 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.<br /><br />It'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.<br /><br />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...Galenhttps://www.blogger.com/profile/02133622477462629829noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-66217881737419012122010-01-29T01:49:17.800-05:002010-01-29T01:49:17.800-05:00We have had botox - so far with no side effects. ...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.Alisonhttps://www.blogger.com/profile/09793960049542281502noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-61280167248497081042010-01-29T01:01:54.450-05:002010-01-29T01:01:54.450-05:00My daughter has had Botox twice. The second time s...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! <br /><br />I 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. <br /><br />I am so sorry for that families loss.Makenzies Miraclehttps://www.blogger.com/profile/05661162667463266357noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-52518161008267891812010-01-28T23:25:57.006-05:002010-01-28T23:25:57.006-05:00My son Tyler is 4. He was not treated for his spas...My 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. <br /><br />Ty 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. <br /><br />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?<br /><br />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. <br /><br />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. <br /><br />I wish her luck. 3 million is a lot of money.nancyhttps://www.blogger.com/profile/16943446751465263123noreply@blogger.com