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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

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Hi Faith,

 

Oh Boy! This sound like my son when ever we would try yeast stuff. Last one was from the Oregano Oil. He does get noisy with probiotics too.

 

I do remember when my son would have the high pitched squeak it lasted about 2 weeks after we stopped the amino acid that caused the spike.

 

I can't help with the cortisone shot but I think Chemar can, this sounds like something her DH did not do well with????

 

Hang in there I know how hard this could be before school. So why don't you try with the clean diet these last few weeks before school starts. Find all the clean food he loves and stuff him with that so you wont be worried about his weight.

 

CP

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the problem with cortisone is that *if* your son's tics are because of Tourette Syndrome *then* cortisone may increase tics even more because it is dopaminergic. Does the DAN not know the connection between TS tics and dopaminergic substances?? Why not have more conventional allergy testing rather than trying something that could well make things worse :huh:

 

I am also rather surprised the doc would do such intense antifungals with no evidence of candida? we certainly had no problem getting a clear diagnosis from testing???

 

die off can last quite a while tho and even when the die off is over, the resultant symptoms can take some time to stabilize.

 

my son has always reacted negatively to any probiotic other than yoghurt and kefir ie to those in supplement form rather than food form

 

it is very possible that the reaction to the anti fungal treatment coupled with the load of the tic triggers from a bad diet on vacation is having a compounded effect.

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Faith, I know my doctor has made the same remarks as yours about the candida testing. He has tested me, was always negative, but I definitely had it really bad, and probably still have it some. Maybe there's some test that's better than what some doctors know about? A little surprised not using nystatin also, that's supposed to be very good for getting the fungus in the digestive system.

 

Don't know if it's die-off, perhaps it is, but, the fungus treatments really can take months sometimes if it's bad. After diet is cleaned up for a week or so, maybe you could again try a break for a day or two to see how that changes things, to help see if it really is die-off?

 

Michael

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Faith,

 

You could do the diet to starve the yeast too. You know, no sugar, yeast breads, vinegar... ect.

 

For my son it does always seem that getting everything from food does work best for him. He does the kefir/yogurt, gets a rainbow of color in his diet, drinks mostly water and raw milk.

 

Aug. was always a problem for our boys do you think it's allergies too?

 

CP

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Faith,

 

Environmtal allergies may be a problem as CA had excessive rain fall and it is going thru one of the worse allergy seasons in years. My husband has never had allergies and he is having trouble.

 

Have you tried qucertin? It works well for my daughter, and some for my son. Allergy medicine if he is having symptoms.

 

Pat

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I think all I can do now is be strict on the dietary for a couple weeks, its almost impossible, but I will do it. I've had good advice from Caryn re diet being a big part of the antifungal regimen, so I know how important it is to not 'feed' the yeast. now of course, I don't exactly know if its there, but since we had tried some abx from looking at the PANDAS angle, it was certainly possible. The DAN said at the recent Autism conference, they heard some talks about 'biofilm', and that it is like a defense mechanism of the yeast and bacteria to survive. I'm guessing testing may not prove or disprove anything. don't really know.

 

Yes, cp, you are reminding me that we've said August causes some problems for us, but dang if I know what it is. What did you make of your son increasing on probiotics? you just stopped? did it make you feel it was a problem (yeast) but you just couldn't tolerate the regimen?

 

Patty, interesting about the allergens and California, I didn't even think of that, a change of environment, I suppose its possible, but again, what? The DAN says the cortisone would help to see if it is due to inflammatory or allergens, and then we will persue that. we did have environmental testing with him a few years back, it didn't show anything remarkable, some moderate things like molds and ragweed? but we even tried the allergy treatment and i didn't feel it helped much. quercetin, yes, been there. problem for me is I think I've reached the end of the road, think I've tried or persued just about everything. btw, I don't think the cortisone is like prednisone, not a steroid. its like what some get for arthritis, not sure, I gotta do a little research here. But, I am pretty sure I will not agree on it, I just don't like taking chances here.

 

Michael, why do you wonder about nystatin as opposed to diflucan (flucanazole)? for some reason, this seemed to be the regimen they use, mainly for autism, but we are following it for tics. do you think I should ask to change to nystatin? the reason I wanted to try this out was because from my research around here, it seemed like several had some success when doing nystatin, so I felt I needed to try it too, since I never really honed in in yeast, did probiotics, but at low levels.

 

I have told my son he had better cooperate for a few weeks, even my husband is on board. I havn't given natural calm or epsom baths for some time, but I've started those today. I don't think it will end it, but I'm hoping to get this waxing back down to a manageable level. I am sure he was not like this before we left for California.

 

I hve backed down on everything the last few days, but he's still going. its pretty unreal.

 

:(

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Hello - reading of probiotics and was wondering if you've ever tried the Garden of Life supplements? Its tough getting my son to eat any vegetables, so this is my avenue. I make a kefir shake with it and I think it has helped him a lot.

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Faith,

 

Anytime my son has an increase it is always in the vocal dept. Sometimes he will have a head nod but that is the last to start and the first to go during a waxing. The probiotics just like other supps made thing worse, some were really bad others just an increase that he would say he did not want to take whatever that was anymore. But he loves Kefir/yogurt so I always felt better that at least he was getting probiotics that way.

 

 

Just to let you know my son had no reaction (bad) reguarding the tics with the nystatin, but we were about to start another bottle and my son did not want to do it again and he thought drinking coconut water and starving the yeast worked faster.

 

The other thing I was thinking about was the heat this summer. I notice our son was better yesterday and the weather was cooler. I never even thought about the waxing for him could be the heat only because I thought it was excitment over graduating fire sch. coming up Thrus. And we had that BIG bright full moon this past weekend. So I see how it is almost too hard to pin point the cause. Glad he is willing to do the diet at this piont I too wouldbe afraid to start anything before school starts.

 

Cp

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Faith,

 

Fluconazole is a good antifungal in the "systemic" category, meaning it gets absorbed into the bloodstream and goes all over the body to treat the the fungus wherever it may be. Because it does get absorbed, it is work for the liver, and people doctors like to monitor liver enzymes if given over an extended period of time (months). Nystatin is a great antifungal that does not get absorbed, so safer, but only works in the digestive tract, because it doesn't end up anywhere else. I wasn't so much wondering why not nystatin instead of fluconazole, but more wondering why not both. Yeast/fungus sure do love the digestive tract.

 

Have been wondering how things were going for you lately, wishing you well, haven't seen you posting so much recently, wondering if I missed something as I was kind of gone from the board for a couple months. Have you had a really good work-up for lyme by someone specializing in that? I think you live in one of the areas where there is a lot of that.

 

The enzymes for biofilm can be very helpful. Not just yeast and bacteria, but heavy metals like mercury and also lyme bugs too. Lots of stuff in there, perhaps with releasing heavy metals from the biofilm, you may want to consider some kind of binder to help eliminate them rather than recirculating them.

 

Michael

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Faith,

 

Just wanted to first agree with Patty that the allergies in CA have been horrible. I was so sick this spring having moved from the east coast where I no longer had allergies bc I was treated with shots. When I went for local allergy testing they tested a bunch of environmental things that do not exist on the east coast but I was reacting terribly to. Maybe try the saline nasal washes bc even if your son has no congestion the saline reduces inflammation in the sinuses. The other thought I had was did your dan doc do stool testing? With all the anti fungals you are doing maybe there is bad bacteria in his gut that needs treating and that is why the negative reaction. My son has never complained of stomachaches but a recent trial of clindamycin dramatically improved his stools and tics. We are still trying to figure out why and not saying that your son has strep or other bad bacteria in his gut but I did want to mention it? I hope things calm down soon as I know the feeling of having tried everything and just not knowing what to do next! Take care!

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Hello - reading of probiotics and was wondering if you've ever tried the Garden of Life supplements? Its tough getting my son to eat any vegetables, so this is my avenue. I make a kefir shake with it and I think it has helped him a lot.

 

thanks, havn't tried this, I always felt my son didn't do well on high supplements...are you saying your son's tics have gotten better since using this sup? or is it the kefir?

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Faith,

 

Fluconazole is a good antifungal in the "systemic" category, meaning it gets absorbed into the bloodstream and goes all over the body to treat the the fungus wherever it may be. Because it does get absorbed, it is work for the liver, and people doctors like to monitor liver enzymes if given over an extended period of time (months). Nystatin is a great antifungal that does not get absorbed, so safer, but only works in the digestive tract, because it doesn't end up anywhere else. I wasn't so much wondering why not nystatin instead of fluconazole, but more wondering why not both. Yeast/fungus sure do love the digestive tract.

 

Have been wondering how things were going for you lately, wishing you well, haven't seen you posting so much recently, wondering if I missed something as I was kind of gone from the board for a couple months. Have you had a really good work-up for lyme by someone specializing in that? I think you live in one of the areas where there is a lot of that.

 

The enzymes for biofilm can be very helpful. Not just yeast and bacteria, but heavy metals like mercury and also lyme bugs too. Lots of stuff in there, perhaps with releasing heavy metals from the biofilm, you may want to consider some kind of binder to help eliminate them rather than recirculating them.

 

Michael

 

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.

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Pat and Betty,

could you tell me more about CA allergens? anything in particular that is prominent in SoCal this time of year? Is it just pollen in general or some tree or plant in particular? would mold be in the air too? if it was this, how long since being back in NY would you think he'd calm? its been two days and he's still going.

 

Betty, I've been down the pandas trail and we've done abx, not clindomycin, but others. With this antifungal treatment, along with the flucanazole, we were also given Neomycin for the bacteria, so maybe tht is the same thing?

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Hi Faith,

 

Sorry I should have clarified that I live in northern ca. But last week we were in San Diego visiting family. It was definitely colder than usual, I was freezing at legoland! I really don't know what allergens are supposed to be worse out here. I just know that they are different since the vegetation is so different from the east coast. For example, I tested highly allergic to olive trees, my skin turned red, eyes burning, sneezing... I was never exposed to olive trees growing up on LI!

 

But since you mentioned eating junk food I was again wondering about the immune/gut connection. I understand you tried the pandas route and truly until 2 weeks ago I was ready to abandon it. But now we think my son has strep in his gut and clindamycin is working where azithromycin and augmentin both at high doses were doing nothing! It's all so complicated but I just wanted to share my recent experience because I felt like you only 2 weeks ago in not knowing what else I could possibly try! I am awaiting stool sample kits from doctors data following recommendations from my dan doc to rule out an overgrowth of bad bacteria and parasites. Neomycin is not in the same category as clindamycin. If you look at others posts you will see some with GI issues have improved with flagyl and vancomycin. Again just my thoughts and experiences in case they may provide you with some thoughts to help your son. Hope things get better soon!

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