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HI Faith, I'm sorry that things are waxing for you. We all know how frustrating that is. I can only speak about a cortisone shot from my own experience. I got it to possibly help with heel pain from a nerve problem I've been having. I got the shot back in May and I'm still having problems with my skin from it. Somehow the cortisone thinned my skin at the injection site and started a mass eczema reaction. I had pain where it felt like my skin was on fire, peeling and bleeding skin, and it just kept spreading. I had to go to a dermatologist and see a new podiatrist because the first one denied that I could possibly have a reaction that bad from just 1 injection. Basically, I'd say that everyone reacts differently and some folks have had more systemic reactions, too. If it were me, I'd not do it again and I'd probably only allow it on my child if it was a last resort and if I was guaranteed improvement. It's just not worth the risk. Also, the shot itself can be quite painful and you risk infection at the injection site, too.

 

Have you thought about giving him a break from all 'treatment' plans? Going back to just a clean diet, starting back with just magnesium, adding in one supplement at a time, etc may jump start healing again??? Honestly, I don't have any answers. We've been having things pretty good since last fall but ds still tics. I've let him eat all kinds of junk and he still doesn't increase tics so I'm guessing we're dealing with more of a food allergy or an environmental thing. It could be yeast for us, too, but that's a BIG one to try to treat so I'm holding off since things are going relatively well for now.

 

Bonnie

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hi all,

we're having a very big waxing on vocals here, they seemed to have changed to a squealy high pitched "ooh" sound. I have had my son on an antifungal program (enzyme to break biofilm, fluconozole and neomycin for yeast/bacteria, and high probiotics).. I expected die off, but after three or four weeks on this, he's still going, so not sure if its all coincidence, big die off, or maybe this stuff has aggravated him, or maybe yeast is just not his problem. we havn't had any testing for it, DAN doc says its not that useful because the biofilms protect it and the tests will show negative. sorry for those that are newish and don't understand this lingo, but I am in a realy tizzy here. we just came back from California vacation, so alot of excitement with theme parks, lack of good sleep, junk foods, soda, etc. my bad, I know, but I have kind of abandoned a strict diet due to my son's underweight, but I do know when to curb it, I am guessing it was just too much for the bucket, all this. but he started the vocal pretty much the first day, so not sure what's going on. (he always has vocals, but I mean it got way worse, more noticeably frequent).....

 

I called the DAN and explained, he said he thinks there should have been some positive effects by now if the antifungal regimen was helping. I did stop a few days wondering if I backed down on it, that the die off would back down too, but he's still squeaking away, prettymuch every five seconds. if it were September, I could not send him to school like this. .... What the DAN doc suggested was to continue, but at our next visit he wants to try a cortisone shot? oh my, not up my alley. anyone have any experience with this? he said its to see if it helps, then we will know if his tics ar result of some allergic or inflammatory response. I know I am going to chicken out on this. I'm desperate at this point, but allways afraid to give something that may actually cause increase, what if this does?

 

any experience here with cortisone shot? please help. I am running out of options. thanks.

 

Faith

 

Hi Faith,

 

This is my first post although I have been reading the Tourettes/PANDAS boards for quite some time. I always promised myself that I would write in and tell my story when I finally had something valuable to share with others that worked. Unfortunately, until very recently NOTHING has. To make a long story short, my dd6 was diagnosed with Tourettes 1 1/2 years ago and finally with PANDAS 1 month ago. Like your son, her biggest/only major problem is a vocal tic (sounds like a cross between a loud hiccup and a cough). When she's waxing she does it every 3-5 seconds (the sound drives me NUTS). Her only other issue is a very mild sensory issue with clothing (things aren't tight enough). I tried soooo many things to help her. We tried Natural Calm, NAC, taurine, fish oil capsules, probiotics, multivitamins, NAET for 1 year, topamax, Nystatin powder, and a very extreme and strict anti-yeast diet that has left me a slave to my kitchen as I have to prepare everything for my daughter from scratch (and trust me I'm no Rachel Ray!). Despite everything we have done we have seen NO improvement in her tics! She reacted negatively (tics always spiked)with every supplement/therapy we tried. As a matter of fact, after doing all this for 1 1/2 years she seemed to be getting worse, not better. I was feeling so depressed and desperate that nothing worked for her and I was "killing" myself for nothing. Thanks to all the advise and awesome information on the PANDAS board I took her in to see a recommended Dr. in Irvine, CA just to run some blood tests (her tics started around the same time she had a sinus infection) and he wound up diagnosing her with PANDAS. I was shocked as I really didn't think she fit the PANDAS profile. We did some blood and urine tests and found that she had elevated anti-DNASE antibodies and despite being on the anti-yeast diet and Nystatin for 1 year her yeast levels were still very high. Now you should know that she was only on very minute amounts of Nystatin because even at the lowest dose her tics spiked so much I had to stop (we tried lowering and increasing her dosage for over 1 month and everything made her tics worse). Her urine test revealed that she had very, very high levels of HPHPA which are clostridium markers. I have no ides how this happened and she showed no signs of it (diarrhea or stomach problems). I would have never known she had any clostridium issues had it not been for this urine test. She is currently on Azith 5ml 2x/day , Flagyl 2x/day (for 2 weeks) and Fluconazole for 2 months. She has shown GREAT improvement (I sure hope I'm not jinxing myself here!). I think the Flagyl is what really helped. She was on the Azith for 2 weeks before we started the Flagyl and it wasn't until I added the Flagyl that we saw the improvement. I know someone else wrote in about possibly checking for bad gut bacteria and I think it's a good idea. I don't know if anything I wrote is of help to you but treating for clostridium is the first thing that we have done that has given us some really good results. I'm so sorry for what you are going through and I hope that you will find something to help your son soon!!

 

Caring Mom

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I'll have to ask about nystatin when we have our next follow up. I did get the impression that the enzymes targeting the biofilm could stir other things up, so maybe that is at play too. but how long does this go on? if its gonna stir things up and keep stirring things up, metals, or whatever, then I don't see how we can get thru the treatment. I've been using bentonite clay and activated charcoal for purposes of getting out the toxins released, but guess its nto helping. .....we've had lyme testing via western blot, but all is negative.

 

how are things going with you Michael? are you done with any of the treatments you've recently persued? I'm still not knowing definitevely where we stand, I think I've given everything a fair shot. I just have to brave the rough spots and be realistic at the same time. i'm managing, but it does get tough when our vocals are up, which is what is happening right now.

 

Yeah, looks like you've given a lot of things a fair shot, glad you're working with binders too, that can at least help get it out, even if the symptoms are still brutal. Hopefully you can make it through. I have heard it sometimes does take a while to get rid of those heavy metals.

 

As far as the fluorescent and wireless sensitivities, they are still a problem, but much less. I have stopped the lyme treatment for now after two months, it was very good for me, and am still showing some signs of progress even after stopping the abx. Monitoring with blood tests pretty carefully and regularly to make sure we know which direction things are moving. I am taking Allergie-Immun treatments, drops with information to fix DNA, for those with allergies, a treatment from Germany (there is a thread on the PANDAS board if you're interested in more on that). Feel they are helping with heavy metal release at least, and taking a binder to help that as well. Besides that, really struggling with severe GI problems, they started from Augmentin back in March and have just gotten worse and worse, we keep trying things to kill whatever is out of control, nothing has worked yet.

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Faith,

 

I live in N. Cal and i can tell you that in the beginning of the allergy season, there was alot of mold due to the excess rainfall, then came the tree pollens. The trees & flowere are blooming everywhere and it is still going.

 

There is an OTC nasal spray for allergies called Nasalcrom and it reduces inflammation in the sinus. It has almost no side effect. Neti pot may also be another option. Patanase is another nasal spray antihistamine but you need a prescription.

 

Hope things are settling for your son.

 

Pat

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hi all,

we're having a very big waxing on vocals here, they seemed to have changed to a squealy high pitched "ooh" sound. I have had my son on an antifungal program (enzyme to break biofilm, fluconozole and neomycin for yeast/bacteria, and high probiotics).. I expected die off, but after three or four weeks on this, he's still going, so not sure if its all coincidence, big die off, or maybe this stuff has aggravated him, or maybe yeast is just not his problem. we havn't had any testing for it, DAN doc says its not that useful because the biofilms protect it and the tests will show negative. sorry for those that are newish and don't understand this lingo, but I am in a realy tizzy here. we just came back from California vacation, so alot of excitement with theme parks, lack of good sleep, junk foods, soda, etc. my bad, I know, but I have kind of abandoned a strict diet due to my son's underweight, but I do know when to curb it, I am guessing it was just too much for the bucket, all this. but he started the vocal pretty much the first day, so not sure what's going on. (he always has vocals, but I mean it got way worse, more noticeably frequent).....

 

I called the DAN and explained, he said he thinks there should have been some positive effects by now if the antifungal regimen was helping. I did stop a few days wondering if I backed down on it, that the die off would back down too, but he's still squeaking away, prettymuch every five seconds. if it were September, I could not send him to school like this. .... What the DAN doc suggested was to continue, but at our next visit he wants to try a cortisone shot? oh my, not up my alley. anyone have any experience with this? he said its to see if it helps, then we will know if his tics ar result of some allergic or inflammatory response. I know I am going to chicken out on this. I'm desperate at this point, but allways afraid to give something that may actually cause increase, what if this does?

 

any experience here with cortisone shot? please help. I am running out of options. thanks.

 

Faith

 

 

Hi Faith,

 

This is my first post although I have been reading the Tourettes/PANDAS boards for quite some time. I always promised myself that I would write in and tell my story when I finally had something valuable to share with others that worked. Unfortunately, until very recently NOTHING has. To make a long story short, my dd6 was diagnosed with Tourettes 1 1/2 years ago and finally with PANDAS 1 month ago. Like your son, her biggest/only major problem is a vocal tic (sounds like a cross between a loud hiccup and a cough). When she's waxing she does it every 3-5 seconds (the sound drives me NUTS). Her only other issue is a very mild sensory issue with clothing (things aren't tight enough). I tried soooo many things to help her. We tried Natural Calm, NAC, taurine, fish oil capsules, probiotics, multivitamins, NAET for 1 year, topamax, Nystatin powder, and a very extreme and strict anti-yeast diet that has left me a slave to my kitchen as I have to prepare everything for my daughter from scratch (and trust me I'm no Rachel Ray!). Despite everything we have done we have seen NO improvement in her tics! She reacted negatively (tics always spiked)with every supplement/therapy we tried. As a matter of fact, after doing all this for 1 1/2 years she seemed to be getting worse, not better. I was feeling so depressed and desperate that nothing worked for her and I was "killing" myself for nothing. Thanks to all the advise and awesome information on the PANDAS board I took her in to see a recommended Dr. in Irvine, CA just to run some blood tests (her tics started around the same time she had a sinus infection) and he wound up diagnosing her with PANDAS. I was shocked as I really didn't think she fit the PANDAS profile. We did some blood and urine tests and found that she had elevated anti-DNASE antibodies and despite being on the anti-yeast diet and Nystatin for 1 year her yeast levels were still very high. Now you should know that she was only on very minute amounts of Nystatin because even at the lowest dose her tics spiked so much I had to stop (we tried lowering and increasing her dosage for over 1 month and everything made her tics worse). Her urine test revealed that she had very, very high levels of HPHPA which are clostridium markers. I have no ides how this happened and she showed no signs of it (diarrhea or stomach problems). I would have never known she had any clostridium issues had it not been for this urine test. She is currently on Azith 5ml 2x/day , Flagyl 2x/day (for 2 weeks) and Fluconazole for 2 months. She has shown GREAT improvement (I sure hope I'm not jinxing myself here!). I think the Flagyl is what really helped. She was on the Azith for 2 weeks before we started the Flagyl and it wasn't until I added the Flagyl that we saw the improvement. I know someone else wrote in about possibly checking for bad gut bacteria and I think it's a good idea. I don't know if anything I wrote is of help to you but treating for clostridium is the first thing that we have done that has given us some really good results. I'm so sorry for what you are going through and I hope that you will find something to help your son soon!!

 

Caring Mom

 

 

caring mom,

wondering how things are going re the flagyl....are you still giving that? you mention your dd doing well on it and seeming to help? has that sustained? how are her vocals now?

 

we are still struggling with vocals here. i did try one day of flagyl about a month back, but imagined an increase in vocals, so i did not continue.

 

thanks for any update or advice you could give. where did you get those urine tests done that showed markers for clostridium?

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yes, his tics increased, and he also felt it had a negative effect on OCD

 

 

it could have been some kind of die -off reaction, but he was having acupuncture & biofeedback to help that and it did reduce the effects much, but he noticed a definite improvement when he went off the rx abx and on to the natural ones in foods and supps

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yes, his tics increased, and he also felt it had a negative effect on OCD

 

 

it could have been some kind of die -off reaction, but he was having acupuncture & biofeedback to help that and it did reduce the effects much, but he noticed a definite improvement when he went off the rx abx and on to the natural ones in foods and supps

 

 

Chemar,

 

Thanks for the response. I am really struggling with my son currently. His stools and tics responded so well to clindamycin in July. Then it seemed to stop working so flagyl was added and his tics worsened so we stopped after 10 days. Tics began to improve but then he started school and caught a cold. We added Rifampin to the clindamycin and again tics worsened. My doc pulled him off all antibiotics for the weekend and then we started vancomycin. His tics have worsened on all these antibiotics. He had a horrible anal rash that my doc said was the strep coming out. But the rash is now gone, we are 10 days into vancomycin. My doc said typically takes 2 weeks of increased tics before things settle. But it is hard waiting this out and questioning what is best? He is only 5 but tested negative to ibd markers but has a c3d of 91! Sorry maybe this post belongs more on the pandas board but I am just struggling with why he gets worse on antibiotics and does that mean pandas or can that happen to someone with ts? Well it obviously happen to your son with ts, but I think he has ibs or chrohns so it that why flagyl made him worse or could it make anyone with ts worse? Thanks again for sharing your experiences.

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hi

 

some people, like my son, just seem to be very intolerant to chemically made substances, which most prescription meds are.

 

so where my son's reaction to the flagyl could have been herxing? or abx specific reaction, we dont know, only that he did better off it.....we believe he has multiple chemical sensitivity, even tho he has never had (as far as we know) any single massive chemical exposure that some claim is the needed trigger for that.

 

but he seems to get serious side effects from many medications over the years, and so we have had to find natural substitutes for most everything, which he responds well to, and that seem to aid the problems for which abx are usually prescribed

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hi all,

we're having a very big waxing on vocals here, they seemed to have changed to a squealy high pitched "ooh" sound. I have had my son on an antifungal program (enzyme to break biofilm, fluconozole and neomycin for yeast/bacteria, and high probiotics).. I expected die off, but after three or four weeks on this, he's still going, so not sure if its all coincidence, big die off, or maybe this stuff has aggravated him, or maybe yeast is just not his problem. we havn't had any testing for it, DAN doc says its not that useful because the biofilms protect it and the tests will show negative. sorry for those that are newish and don't understand this lingo, but I am in a realy tizzy here. we just came back from California vacation, so alot of excitement with theme parks, lack of good sleep, junk foods, soda, etc. my bad, I know, but I have kind of abandoned a strict diet due to my son's underweight, but I do know when to curb it, I am guessing it was just too much for the bucket, all this. but he started the vocal pretty much the first day, so not sure what's going on. (he always has vocals, but I mean it got way worse, more noticeably frequent).....

 

I called the DAN and explained, he said he thinks there should have been some positive effects by now if the antifungal regimen was helping. I did stop a few days wondering if I backed down on it, that the die off would back down too, but he's still squeaking away, prettymuch every five seconds. if it were September, I could not send him to school like this. .... What the DAN doc suggested was to continue, but at our next visit he wants to try a cortisone shot? oh my, not up my alley. anyone have any experience with this? he said its to see if it helps, then we will know if his tics ar result of some allergic or inflammatory response. I know I am going to chicken out on this. I'm desperate at this point, but allways afraid to give something that may actually cause increase, what if this does?

 

any experience here with cortisone shot? please help. I am running out of options. thanks.

 

Faith

 

Hi Faith,

 

This is my first post although I have been reading the Tourettes/PANDAS boards for quite some time. I always promised myself that I would write in and tell my story when I finally had something valuable to share with others that worked. Unfortunately, until very recently NOTHING has. To make a long story short, my dd6 was diagnosed with Tourettes 1 1/2 years ago and finally with PANDAS 1 month ago. Like your son, her biggest/only major problem is a vocal tic (sounds like a cross between a loud hiccup and a cough). When she's waxing she does it every 3-5 seconds (the sound drives me NUTS). Her only other issue is a very mild sensory issue with clothing (things aren't tight enough). I tried soooo many things to help her. We tried Natural Calm, NAC, taurine, fish oil capsules, probiotics, multivitamins, NAET for 1 year, topamax, Nystatin powder, and a very extreme and strict anti-yeast diet that has left me a slave to my kitchen as I have to prepare everything for my daughter from scratch (and trust me I'm no Rachel Ray!). Despite everything we have done we have seen NO improvement in her tics! She reacted negatively (tics always spiked)with every supplement/therapy we tried. As a matter of fact, after doing all this for 1 1/2 years she seemed to be getting worse, not better. I was feeling so depressed and desperate that nothing worked for her and I was "killing" myself for nothing. Thanks to all the advise and awesome information on the PANDAS board I took her in to see a recommended Dr. in Irvine, CA just to run some blood tests (her tics started around the same time she had a sinus infection) and he wound up diagnosing her with PANDAS. I was shocked as I really didn't think she fit the PANDAS profile. We did some blood and urine tests and found that she had elevated anti-DNASE antibodies and despite being on the anti-yeast diet and Nystatin for 1 year her yeast levels were still very high. Now you should know that she was only on very minute amounts of Nystatin because even at the lowest dose her tics spiked so much I had to stop (we tried lowering and increasing her dosage for over 1 month and everything made her tics worse). Her urine test revealed that she had very, very high levels of HPHPA which are clostridium markers. I have no ides how this happened and she showed no signs of it (diarrhea or stomach problems). I would have never known she had any clostridium issues had it not been for this urine test. She is currently on Azith 5ml 2x/day , Flagyl 2x/day (for 2 weeks) and Fluconazole for 2 months. She has shown GREAT improvement (I sure hope I'm not jinxing myself here!). I think the Flagyl is what really helped. She was on the Azith for 2 weeks before we started the Flagyl and it wasn't until I added the Flagyl that we saw the improvement. I know someone else wrote in about possibly checking for bad gut bacteria and I think it's a good idea. I don't know if anything I wrote is of help to you but treating for clostridium is the first thing that we have done that has given us some really good results. I'm so sorry for what you are going through and I hope that you will find something to help your son soon!!

 

Caring Mom

 

caring mom,

wondering how things are going re the flagyl....are you still giving that? you mention your dd doing well on it and seeming to help? has that sustained? how are her vocals now?

 

we are still struggling with vocals here. i did try one day of flagyl about a month back, but imagined an increase in vocals, so i did not continue.

 

thanks for any update or advice you could give. where did you get those urine tests done that showed markers for clostridium?

 

 

Hi Faith,

 

Sorry I haven't replied sooner - I've been meaning to update but haven't found the time yet. The short of the long is that we have experienced nothing short of what I consider a miracle over here. My daughter's vocal tic is pretty much completely gone - I hear 1 tic a day if that!! The doctor had put her on 10ml of Flagyl 2x/day for 1 month and we just completed the month. She has been off of it for 4 days now and knock on wood she is doing amazing. There has been a lot of anxiety and stress around here with school starting so we have seen some increase in emotional issues and regressive behaviors but NO TICS! She fits right in with the other kids at school and no one would ever know what she has been through.

 

The test our DAN ordered was from Great Plains Lab and it was called a Microbial Organic Acid Test (MOAT). One of the things it tests for is clostridia markers. My dd's DAN said she had one of the highest numbers he had ever seen. We had NO clue anything of this nature was wrong with her. She had only been on antibiotics 1 time since birth and she is now 7 years old. Of course, now it explains why nothing we tried (and we tried tons of things) ever showed any improvement in her tics. I believe Flagyl is our miracle drug. My daughter is now off her horribly restrictive diet and is eating normal foods again like other kids. I feel like I died and went to heaven! I only pray that the clostridia doesn't come back. One thing I would like to mention is that when her DAN upped her Flagyl to 10 ml (she was 5ml for 2 weeks before we upped it) she did have some side effects. She completely lost her appetite and basically stopped eating. It was very scary but luckily when she was at her worst her month was basically up. Now that she has stopped the Flagyl her appetite has come back with a vengence. She also got very tired on the Flagyl but it was worth all that she had to go through. I feel like she got her life back. I highly recommend getting the MOAT test done just to see what your son's levels are. I cannot believe how much we have suffered over here for 2 years with horrible vocals and no one ever suggested that clostridia could be our problem. It was not an expensive test (I believe $85) and it held all the answers we were looking for. Good luck to you and your son. Let me know if I can be of any other help to you!

 

Caring Mom

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Caring mom,

 

How long did it take for the flagyl to improve your dd's tics? Did it ever make them worse? Thanks, Betty

 

 

My dd was on Flagyl for the first time for 2 weeks and within 2-3 days after we started I noticed a decrease in her vocals. Her motor tics which were always very slight and not noticeable seemed to increase a bit as the vocals decreased, but I wasn't concerned because they still weren't noticeable unless you completely stared at her for a while. By the time 2 weeks had gone by she was down to maybe 5 vocal sounds a day (this was after her ticcing every 3-5 seconds all day long). Within one week after stopping the Flagyl her vocal tics started coming back (25-30 a day) so her DAN put her on it again at double the dosage for double the time (1 month). Again, within 3 days her her vocals decreased to maybe 6 a day. Her motor tics continued some days more than others but not noticeable to anyone but her father and myself (she wrinkles her nose). By the end of 1 month we had maybe 1-2 vocals a day if that. Yesterday I heard her 1 time, some days I don't hear her at all. Interestingly, her motor tics are down too now that we have gone off the Flagyl. Please note that we changed A LOT of things at the same time with her. When we first started the Flagyl she also started Diflucan (for yeast) and heavy doses of probiotics (500 billion cfu's a day). After being on Diflucan for a while her DAN had us start her on Enhansa (for yeast). That is where we saw a lot of die-off and increase in her tics for a few days. I always knew it was the Enhansa and not the Flagyl because her tic increase always correlated to us increasing her Enhansa dosage (you have to build up to the optimal amount). I find it interesting that so many people have reported problems with tics increasing while on Flagyl. This is actually one of the first medicines/supplements that we have tried that DIDN'T increase our daughter's tics. Good luck to you and hope this helps!

 

Caring Mom

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