I allowed my teen daughter to receive off label 100u Botox injected in her stomach to alleviate symptoms from gastroparesis on Dec 6, 2011. On Dec 20 I rushed her to the ER with “falling asleep” arms and legs. They transferred her to our areas largest teaching children’s hospital. She progressed to weak breathing, fast heart rate, arms and legs so weak she couldn’t feed herself or walk. Three days later they told me to take her home because she has Conversion Disorder (I have learned that means it is all in her head). Some things have improved but some things are worse-especially the shaking, and it depends on the day and the fatigue level. Her pediatrician told us he had read the reports from the hospital and doesn’t know how to help her. By the way, on Jan 25 he discovered that she no longer has any gag reflex. I am terrified to take her back to a doctor and have them insult her again or worse. I have read everything on the internet I can find, but it is not much. Botulism symptoms do somewhat mimic what she is dealing with but, the new symptom this week is “twitching” in her face, arms and legs and I don’t know what to do. She started physical therapy (still very weak on left side of body, incidentally that is the side the original injection was on…) and the more she tries to push her muscles to work the more she shakes and twitches. Please offer any advice you may have, and is there a doctor anywhere who will recognize this and at least acknowledge the possibility? I would take her anywhere.
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Hi Kye06….I am so sorry that your daughter has had to go through this terrible experience…..your story just makes me so so mad…….these symptoms are 100% from Botox – everyone on this site will read your post and immediately know that this is from Botox – WHY is it so hard for Doctors to realise this too….they have a medical degree and access to much more information about Botox than we do…..it sounds like your daughter has been hit more severely than most and I feel so so so bad for her……..
I too had very severe muscle twitches in my face and ALL over my body constantly for the first 4/5 months…..it slowly settled and now at 11 months I still get these twitches but they are only about 10% on what I experienced early on…..so I hope that your daughter’s twitches will improve as mine did…but it did take many months………most members on here have also had the muscle weakness, shakiness etc
Can I ask if they actually did show you the Black Box warning prior to injecting?? Many of us on here were not informed at all and were actually told that side effects were very very mild….slight bruising, headache etc……if you were not warned I would definitely be discussing this with the hospital……
You will get a lot of support on this web site and I wish with all my heart we could bring this to the attention of a medical professional that is willing to stand up for us all……..
I have complained to the medical board about not being informed of these terrible side effects but am awaiting the outcome – I know it is hard to think about anything but looking after your daughter but if possible keep all evidence of medical appts etc and even possibly video her during therapy as I feel that they need to know what has happened to her – I just think we need to get this information as evidence to somehow push the FDA to make this toxin a last resort for people who are willing to take the chance of these severe side effects…………..please keep us informed on how your daughter is going……I really am thinking of her.
Thank you. As I read all of the stories on here I can’t help but cry. My daughter does have so many of these symptoms, even some things she has complained about I didn’t put it together until tonight. I just want to find her help. She is (of course:) a wonderful young lady and deserves to have relief from this suffering.
Warning-No. I was told there are no side effects-it either works or doesn’t for her condition. I wanted her gp symptoms controlled so she could live a normal life so I said give it to her. Ironic, huh. Her injection was inside her stomach during an EGD, so I question if this is why her side effects are so great. I have taken her back to that dr. and when I bought up the literature from the FDA and the package insert he said it was unlikely due to the time line, but remotely possible, probably something else. He is compassionate but can not admit it due to his liability.
Let me add, that although the dr. did not inform me, I had briefly researched this procedure on other gastroparesis websites and knew that it would be off label use, but saw that others use it all of the time for this procedure. And the insurance company paid for the whole thing.
I did contact the FDA personally. They sent me the form to sign for a record release to them and took all of the details. I also want to help them stop this from happening.
Thank you. I can’t wait for her to get up tomorrow so I can share this with her.
Hi KYE! I am so sorry that your daughter has suffered from such terrible symptoms. I also have had bad days. I admit that i had some day without symptoms but only few…. I have gone through hell for almost 11 months. hoping for recovery for al of us. Take care Katrin
Hi Kye. Am so sorry that you have and your daughter are going through this. Many of us have gone through similar symptoms. I know a couple of women who had muscle numbness completely on one side of their body….which eventually cleared up. I have had terrible muscle weakness…at time to the point where I could walk no farther than a few feet and had to be in a wheelchair. The good news is….I am better than I was at that point…although not through this ordeal by any means….but getting better. The fact that she is showing improvement already is a good sign. The typical timeline is worsening symptoms within the first 30 days….and although some see improvement in months 2-3….many don’t start to see real improvement until months 6-12. Although please know that the journey ahead of her will most likely be long with improvements and then setbacks along the way. The muscle twitches are a very common symptom…most of us have had them. She will also most likely see different symptoms come and go throughout the journey….many of which are listed on this website.
It is difficult to say if the method of injecting caused the more severe spread of the toxin or not. Generally with any off-label use of the drug….the possibility of spread perhaps is greater given there are no clinical trial methods to provide data and proven method of administration. With that being said….most of us suffering from the side effects of Botox and/or Dysport are from cosmetic purposes that were tested/trialed….and although most of what we are suffering from are known adverse effects….as Annette mentioned, we were not informed of the REAL risks of the toxin spread. (And quite honestly…there are accusations against Allergan that clinical data provided to the FDA for the approval process at the onset was altered….ie if someone in the clinical trial reported “twitching” as a side effect…this information was not included in the trial at the time given that “twitching” was not a “known” side effect of a botulinum toxin…and therefore deemed irrelevant). And even though the warnings appear on the label…they, in my opinion, don’t relay the REAL possibility of their occuring in a normal, healthy person.
With all that being said….I am somewhat encouraged to hear that the FDA is actually going to review the medical records for your daughter. For most of us…the most that we could do was just file a report. Their asking for records is somewhat of a good sign that they are taking a closer look at the particular off-label use of Botox in your daughter’s case.
It is INFURIATING that she was diagnosed with Conversion Disorder. I know that term well….it was actually suggested in my case at one point by one of the physicians that I saw.
Can I ask where you are located? I suggest that you search out a Neurologist that specializes in NeuroMuscular Disorders. If you are near the Cleveland Clinic in Ohio….you can see Jinny Tavee, MD. I know that she is familiar with these side effects. She will most likely test and rule out any other disorder relative to the nervous system….. The Cleveland Clinic, however, I found didn’t offer much regarding followup visits once they evaluate you and provide a diagnosis. Unless you have something that they can actually treat….they run a bunch of tests, provide you with reports/diagnosis…and then send you along your way.
A friend of mine who suffered from these symptoms did go for advice/help to the Mayo Clinic….and basically received the same information/treatment…just had some tests run…was told that she was having adverse effects from the toxin…and that only in time would they diminish.
If you are near Chicago…..you can see Alan Burke, MD or Katherine Carroll, MD. They are both neurologists affiliated with Northwestern Memorial Hospital. Dr. Burke is her associate….and has been seeing me in her absense. Although they don’t specialize in neuromuscular medicine…they both have very caring demeanors. Again…they would most likely run tests as well to rule out any other neurological condition…but then would only mainly be able to offer confirmation of the reaction and medications to help ease the symptoms.
You might also want to search out Dr. Daniel Drachman at Johns Hopkins. He is the head of Neuromuscular Medicine there…and was one of the original researchers on the botulinum toxin for various neurological issues. I am not sure if he still has a patient base beyond his research work…and granted, he never returned my call after placing several to his office…but I was contacting him for information/help as opposed to seeking treatment from him. Given uniqueness to your case, he might show more interest.
Granted….note that beyond treating/managing symptoms….there really isn’t much if anything that can be done to speed up the healing process…at least from what any of us on this or other sites have discovered. Many have experimented with herbal/alternative/natural remedies….some with success, some without. Some have found some relief through acupuncture….others (like me) have found it to make matters worse. Some find that physical therapy offers some help….others (again, me) find that it makes my symptoms worse. It does seem that in MOST cases….any sort of stimulation/stressors….makes the nerves go crazy and causes worse symptoms. Most of us have had to just go through a trial and error process to figure out what is best for ourselves. I just don’t want you to travel a long distance looking for a magic cure…there isn’t one out there. But again, if you are at least looking to be seen by someone who at least has seen a few botulinum side effect cases before….I offer the above.
Believe me….I have for the past 1.5+ years been searching for a magic bullet to make this all go away. I have considered going east to see a physician who specializes in Function Medicine (treating the “cause” as opposed to “symptoms” from a wholistic point of view)….to Texas to see a physician that specializes in treating patients who suffer from toxic reactions to chemicals/environmental toxins. Unfortunately…..I just don’t think there is anything/anyone out there who REALLY knows what to do to really help us rid our bodies of the toxin any faster….or to make our bodies heal faster.
I hope that you can at least find some comfort knowing that you or your daughter are NOT going insane. You are among supporters here.
Hi, Kye! I am sorry that your daughter suffer from these symtoms. I am at 17 month mark and is much better. As far as I know there is one meredy that realy helps: antitoxin. It must be used as quickly as possible after poisining with toxin. Ask about it!!! You must be very
firm and stand on your!
The problem is that doctors don t believe us. I have meat 4 neurologist and they deny my symtoms… Only my GP believed me after i showed her information I gathered. (Sorry for my English. I live in Sweden).
Maria
I’m new on here but I have been on real self a few time ive been going through this for thirteen months and things are getting so much worse I cry all day and cant take care of my children I jet want this to go away I don’t know how much more of thi any ti I can handle. Does your body still shake any time I try to go to sleep during the day I end up shaking and every morning at exactly 6:00 my head starts to shake and body to and wont let me go back to sleep.I to wish that theres a magic pillthat would make this go away would you mind telling me the docs that you found in Texas
Unfortuntely given the timeframe it is too late for the antitoxin. It must be administered within 72 hours of exposure to the toxin…and even though there are some cases reported where it was given later….research shows at least with foodbourne illness that the effectiveness dinishes as time goes on. Also in this country it is not readily available but rather its release is controlled by a government body such as the CDC.
Thank you so much for all of the feedback. I had read about the antitoxin, and didn’t know what the timeline was.
She had phys therapy again today, and this time a different therapist offered “Lymphatic and Visceral” therapy. Basically manipulating areas to encourage the toxin to be dispelled. Not main stream medicine, but I’ll listen. He spoke several times to her about the toxin in her body causing this and how she will recover when the toxin is gone and her body can begin to heal. He felt that strengthing type exercises will not benefit her until she stops having such intense symptoms as some proof that the toxin is gone. After the manipulation (it was very gentle, didn’t stir up the shaking too much) I noticed that her face was not twitching at all. He said lots of plain water to help with washing the toxin out. It can’t hurt.
On the other hand I spoke to the pediatrician asking for a referral to a different neurologist and they said I should ask the dr. who administered the Botox to handle her referrals. Then I asked if they would at least provide my daughter with a note for school because she is having a hard time getting to her classes on time. They said they will let me know. Tomorrow she has a video swallow study but I don’t know if they can see thoses spasms on this test, and it will be her luck she won’t have any tomorrow:) I do have to find someone to help her with the twitching/cramping she is having. She was very sore after school because she said her left leg cramped every few seconds all day. I think a muscle relaxer would help, I will take her back to her pediatrician again tomorrow. He will either refer her on to someone–or give in and try to help her. By the way-add neck pain to her list. I didn’t know it was related to the botox, but she has never had it before and has complained several times about pain in the back of her head and down her neck to her upper back. I told her you had it, too. If nothing else, she knows she is not alone.
Thank you for sharing your stories with us, it encourages me to keep pushing forward to find someone to help her. The midwest dr’s mentioned are a possibility for us–I am keeping all options open.
Well, this certainly isn’t a smooth road. Swallowing study postponed until next week due to the pathologist not being available (after taking a 1/2 day off work, off school and driving 50 minutes one way). I have sent a release for her records from the hospital and from the surgical procedure and was told to expect them in 7-10 days. I also sent a request for a second opinion (you can do this online)to the Cleveland Clinic, but have not heard from them. I suspect they will want to see her records before they give her an appointment. Physical therapy is interesting-the lymphatic massage is gentle so it doesn’t bother her nerves, and we are noticing each time something a little different in her symptoms. He said tonight “her lymph nodes are congested on the left side” (her most affected side) so we asked what that means–he said maybe they are beginning to work on removing the toxin. I don’t know, but she feels a little better after it, so we will keep going. Her biggest complaint today is that after the left leg contracts all day (visibly you can see it rise when she is sitting or standing) at school she is tired and in a lot pain by the end of the day. She also has a hand that contracts and sometimes her whole left side just “twitches”, but the only part that hurts is the left leg. The therapist asked if we have considered talking to her dr. to see if a mild muscle relaxer will help with the pain, but I didn’t have the heart to tell him that her dr. won’t see her for this. I’m trying to find a new one, but I am nervous about trusting her to just anyone…
So, questions for tonight–has anyone had similar pain and do muscle relaxers help with this? Regular massage only stimulates the nerves more. Warm baths make her feel “tingly” and doesn’t help. We are making sure she has plenty of plain water, milk, and an occasional sport drink for the potassium but no improvement yet. The only thing that helps a little is lying on her stomach because then the leg contracts into the bed and can’t pull as far.
Second–did anyone have a swallowing study and did it show anything? I’m wondering if she should wait another week for the test, but then even if it is abnormal, there may not be anything they can offer. She is eating less because it takes her so long to get it down. By the way, the stomach condition she received the botox for is greatly improved right now (I think it worked in her stomach like it was supposed to, too bad it didn’t stay in the stomach) so we joke that if she could swallow she could finally eat to her heart’s content. Odd the things that we laugh about now, but whatever it takes to get her through this. Hope all of you are symptom free tonight–thanks for being there for us.
I do know of one other person that did a swallow study….it was normal. As is the case with most of us…the symptoms come/go…and usually when you go in to have the tests done…it is doing one of the times that the symptoms aren’t there. Just part of the frustrating part of this whole thing.
I have had horrible stomach problems and did a sonogram after I did it I had heart burn and the breathing got worse for like two weeks so def do not do a Sono
Thanks. Week 8 Update: She has an app’t in Cleveland for a neurology evaluation the end of February. She has to be seen in the peds clinic (so no Dr. Tavee), but I was very upfront with the reviewer that I think this may be related to her Botox injection and want a doctor that is familiar with this.
The physical therapy (lymphatic therapy)that she is getting is helping–whether it is helping to soothe the nerves, remove the toxin, or just a gentle massage, I am not going to try to guess, but the twitches calm more and stay calm longer with each treatment. However, she continues with the left leg problem. She can’t feel her left foot so she walks on it wrong, and she gets cramps in the muscles that make it actually raise up off of the ground over and over all day long. Tonight for some reason it is actually visibly swollen and her foot is red and hot–that is new. Headaches and neck aches continue. Still having spasm type problems when she swallows. Heart rate is still bothering her a couple times every day. Mouth sores all of the time. So many symptoms that she never had before, can’t wait for the botox to leave her system. I have tried to read all of the sites that you have referenced-thanks for the scientific sites so I can get educated before we meet the next neurologist!!
Thanks so much for giving us an update………I am happy to hear that you are seeing some improvements from the physical therapy……massage seems to word differently at different stages for everyone….I know at certain times throughout my 12 months depending on the severity of the neck/back ache, twitches, nerve pain etc that massage was too much stimulation but at times it did seem to settle things down for awhile…….just so good to hear that there has been some improvement for your daughter. In regard to the mouth ulcers I too have had these – they were severe (I constantly had 3-4 in my mouth at all times – one lot would heal and the next would arrive) from about 2-3 months til about 9? months and then they began to get less severe and heal faster……I know mouth ulcers don’t seem like such a terrible symptom but they can be so painful that it is difficult to eat, drink, swallow and talk – so I feel for her and please let her know that mine eventually settled – I probably get 1 or 2 a fortnight now and that is a huge improvement! With the head and neck aches I know that most of the members have had these at varying intensity – Lily put me on to the hot wheat bags and this was the one thing that seemed to make me feel better……pain killers just didn’t seem to touch the pain for me……these head/neck/upper back pain intensified for about 6 weeks at around 8/9 months and then since then have seemed to settle down – I get them slightly but nowhere near as bad…..so please tell your daughter with time things will improve……please let us know how you go at your appointment……thinking of you and your daughter…….
ps If you like copy your new comment and go to “add post” when you logon and copy into a new post – this just starts a new thread under your member area and it also emails all the members so they can see this new post – when you add a comment if people aren’t subscribed to that thread then they won’t see your new post unless they go looking………if you need any help with starting a ‘new post’ let me know and I can help you with it……