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advice about steroid


faith
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hi all,

For those that have done the steroid (prednisone) with their child, could I ask if you could weigh in with youre experience? my son has tics as the main problem, vocal and head. he's been on augmentin just as a trial from our ped because we thought he had a strep, but it turned out negative. Dr. L. has prescribed to continue on the abx (but this I understand is just to prevent further infection) and do a 30 day prednisone. I feel like he was starting to wane somewhat and that trend has contineued. don't know if its from the abx or just a natural waning from his exacerbation of vocal in late summer. actually he started alot of head/neck tics in the Spring and it continued til July, then the vocal got prominent. even tho they are still there, I do feel like its calmed down somewhat in frequency, I am seeing longer (hours) periods of time in between. Even tho Dr. L. suggested the steroid, I am really nervous of rocking the boat. I get used to the evil I know. at least its better than before. but I think its all relative, if some here have not seen these type tics, then it would seem bad to them. but since I am used to worse at times, this seems better. know what i mean? its all what you're used to.

 

our cam k score is 179, his main issue is tics, with alot of the other issues, a little ocd, irritable behavior, inattention. she did think it was high and seemed a little surprised since she didn't think he seemed that bad and felt his presentation was tourettes. but she did feel that he started young (3 1/2) and tourettes usually starts at 6 or 7. So is this all experimental just to see if it helps? she said it should help reduce the antibodies and thus inflammation, I think that's what I got from it. As far as PANDAS, I asked if he fit this category, and she just kind of answered "its probable". she does say this cam k research is still being compiled and alot is still unknown.

 

So if you all wouldn't mind giving me some advice on wether I should do this steroid or not? could you all give me your experience and wether you thought it helped or not? did anything get worse? Did it help with all symptoms, even behavior and attention? I want to know what to expect. would I be crazy to hold off til after the holidays or when he has another waxing?

 

thanks so much

Faith

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My first question, to verify, is does Dr L think he has Tourettes?If she suspects Tourettes at all, Chemar (who runs this website) has said her husband who has TS, had a bad reaction to steroids. She recently reposted her experience in the thread "PANDAS and adult". I don't want to scare you, I just feel better telling you so you can make a fully informed decision. I'll cut and paste her post...

"PLEASE Please Please be very careful before considering a steroid burst if you have Tourette Syndrome (even if you also may have PANDAS)

 

steroids can trigger tics in people with TS

 

my husband is in his 60s and his tics were almost non existent for many years now

 

he suffered herniated discs in his spine over a year ago ago and despite my warnings, agreed to a prednisone burst recommended for the inflammation by his orthopedic doctor. I tried in vain to warn both of them of what I had heard related to steroids and tics. They felt I was being overly dramatic

 

my husband had horrendous side effects from the prednisone and in addition to cognitive impairment, it also triggered a massive spike in his tics, which are still intense after over a year

 

I know the steroid burst is very beneficial for inflammation and yes, has helped many people with PANDAS

BUT

if you have TS as well

*please* proceed with great caution on this! "

 

 

If your son is improving consistenly, why does she want to put him on steroids? As an addiditonal diagnostic tool? Are his tics really bad right now? My son went a 5 day steroid burst, but he did not have any tics. It is a lot to weigh. Have you ever tried Ibruprofen to see if helped with his symptoms?

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vicke,

yes, I am aware of Chemar's experience, probably why I am worried. Dr. L. feels my son could be PANDAS because of his high cam k and tht he started tics at age 3. But just in observing him, I think she probably felt he was not as severe in his symptoms as some of the other patients. She said it looked like he presented with tourettes because of the tics, and I guess his other issues don't seem obvious. but didn't say she thought he wasn't PANDAS. she said it was probable. She starts with this protocol, abx and the month of steroid to see if it reduces antibodies and thus inflammation, at least that's what I understood. I asked repeatedly if it could make him worse and she didn't seem to think so, that most got better. I know my son has alot of the symptoms that others here talk of, the irritability, sensory, and ocd. but I have been focusing mostly on tics and the other stuff I guess I felt just comes along with it. If I can address some of this with this protocol, maybe the steroid will help reduce some of this. I just don't like hearing that some have had problems. I don't think the doctor would prescribe this if she thought it would harm him, and I certainly didn't push for it. But as usual, I have my own fears that I must get rid of before I jump. I'm probably going to call her today to re-assure myself, but I really want to hear others experiences.

 

Faith

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Faith,

 

I was wondering if the Dr. you saw said anything about tonsils and adenoids being removed. Our ped thinks that would be the safest way to try to get some answers on whether a child is TS or PANDAS. However he does admit he is a novice at the PANDAS. He said he thought it couldn't hurt if our son's were removed, he does have hugh tonsils. I have not thought about it to much yet, I guess because son is doing well.

 

Did you ask if PANDAS would be outgrown in some cases?

 

CP

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hi all,

For those that have done the steroid (prednisone) with their child, could I ask if you could weigh in with youre experience? my son has tics as the main problem, vocal and head. he's been on augmentin just as a trial from our ped because we thought he had a strep, but it turned out negative. Dr. L. has prescribed to continue on the abx (but this I understand is just to prevent further infection) and do a 30 day prednisone. I feel like he was starting to wane somewhat and that trend has contineued. don't know if its from the abx or just a natural waning from his exacerbation of vocal in late summer. actually he started alot of head/neck tics in the Spring and it continued til July, then the vocal got prominent. even tho they are still there, I do feel like its calmed down somewhat in frequency, I am seeing longer (hours) periods of time in between. Even tho Dr. L. suggested the steroid, I am really nervous of rocking the boat. I get used to the evil I know. at least its better than before. but I think its all relative, if some here have not seen these type tics, then it would seem bad to them. but since I am used to worse at times, this seems better. know what i mean? its all what you're used to.

 

our cam k score is 179, his main issue is tics, with alot of the other issues, a little ocd, irritable behavior, inattention. she did think it was high and seemed a little surprised since she didn't think he seemed that bad and felt his presentation was tourettes. but she did feel that he started young (3 1/2) and tourettes usually starts at 6 or 7. So is this all experimental just to see if it helps? she said it should help reduce the antibodies and thus inflammation, I think that's what I got from it. As far as PANDAS, I asked if he fit this category, and she just kind of answered "its probable". she does say this cam k research is still being compiled and alot is still unknown.

 

So if you all wouldn't mind giving me some advice on wether I should do this steroid or not? could you all give me your experience and wether you thought it helped or not? did anything get worse? Did it help with all symptoms, even behavior and attention? I want to know what to expect. would I be crazy to hold off til after the holidays or when he has another waxing?

 

thanks so much

Faith

 

I just got off the phone with Dr. K and logged on here to ask the same question.......I am afraid of the steroid burst. He suggested 5 days for my son and said it is a low dose and would do no harm but I am still scared because of Chemar's warning. My son also has tics as his main problem and started young (before age 3). I wouldn't say he is irritable (he is only 6) but get's upset really easily. I didn't think he had seperation anxiety because he has no problem going to school or to his friends house to play. Dr. K thinks he has some sseperation anxiety because he asks me who's picking him up, who's going to be there etc. He has no bed wetting or urinary frequency. He has no trouble going to sleep at night but wakes up really early and sometimes during the night. His ASDbaseB was 224 and his ASO 467. I guess what I am asking is, if it is not PANDAS, is the prednisone going to make him worse?

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If you look at the literature the tonsil and adenoid surgery does not seem to make a difference in PANDAS patients and I would not use the surgery to differentiate between TS or PANDAS unless he really needs them out.

If my child had a CAMKinase II number in the PANDAS range and I was trying to sort through this I think I would try a short course to see if it was PANDAS first. I think your odds are pointing in the direction that it might work and let you see if it is an autoimmune encephalitis. It will give you a lot of knowledge. Dr. L treats a lot of TS kids too and I don't think she would tell you to do it if she did not think it might be a benefit.

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Hi Faith

 

I was about to reply but see that Vickie already did copy what I posted on Michael's thread...thanks Vickie

 

I have actually been getting PMs from parents who are very worried as they agreed to steroid bursts for their kids from Doctors on *phone consults* ie doctors who have *never* seen the child in person!!! :) who therefore have not evaluated whether the child has TS (whether or not they also may have PANDAS)

 

some of these parents are seeing a dramatic upswing in tics when the prednisone is used

 

I personally have a serious concern about this because I have witnessed first hand the *long term* harm that the steroid burst has done to my TS husband, not only with the spiking of tics, but also with cognitive impairment and some other issues that he never had this way prior to taking that prednisone.

 

as I mentioned in the quote Vickie posted, I do know that steroid burst treatment can be very very helpful for inflammation and I have friends with MS and other illnesses who desperately need their prednisone treatment. I also know it's value for PANDAS

 

but

 

if there is the possibility that there is *also* Tourette Syndrome, then it IMHO should be approached with extreme caution.

 

 

ps just for the record, Sheila Rogers runs this website ( http://www.latitudes.org ), not me ^_^ I just help her by volunteering my time for moderating the forums :)

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Well my daughter has Sydenham'Chorea with OCD complications.Our neuro just put us on predisone for 30 days. We lasted 9 days and than decided to wean her off.(this was just last week) Ifelt like we were trading one awful symptom for an even equally awful side affect.

 

My daughter looked AWFUL on predisone.She got the " moon face" , had debiliating headaches and stomache pains. She felt like her skin was crawling

 

I have heard that most chidren do not see the postivie results until AFTER they have completed the entire course. We will never know. Good luck with your decision--J

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Cheri,

does your husbands doctor believe that the prednisone is responsible for your husbands cognitive problems? does he have any oher health problems that could have contributed to this?

 

 

Faith

 

he has multiple and pretty serious health problems Faith, but the cognitive issues I am referring to did not start until the steroid burst and have not rectified, over a year later, just as the tics have not subsided since, nomatter what he has tried to calm them. My husband has always been very sharp minded. He said he felt the prednisone "fuzzed" his brain. It was a very clearcut transistion as to pre and post prednisone, and although as I say he has other serious health issues, the adverse effects that he suffered from the steroid burst were clearly evident and able to be differentiated from his other ailments

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Dr. L treats a lot of TS kids too and I don't think she would tell you to do it if she did not think it might be a benefit.

 

I have personally heard from parents who are very worried by what has resulted after the steroid burst recommended by the doctor after a phone consult.

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Faith: You know our story... son presented with mostly TICS. Did the 5 day steroid burst with Dr. K and saw huge improvement. Those improvements did not last more than 2 to 3 weeks when the steroid wore off. Dr. K uses it mostly as a diagnostic tool to determine how your child might respond to IVIG. Typically, if you see improvement with Steroids, you'll see similar lasting results with IVIG.

 

My friends son, had a similar experience but he presented with more anxiety, OCD, Asperger 'like' symptoms with potty training regression and mood liability. He did so well on the steroid, my friend wanted it to continue but again after 2 to 3 weeks the improvements declined and he will be receiving IVIG in 2 weeks. It was also the 5 day steroid burst with Dr. K.

 

-Wendy

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My child had severe, sudden onset OCD in June, no tics. Negative strep titers, high Cam Kinase II reactivity per Dr. Cunningham's test. She went on an SSRI & antibiotics immediately (which continue to present). After about eight weeks with no improvement, we started a six week course of prednisone, three weeks at 40 mg/day, then taper down. At ten weeks (ten days into the prednisone/10 weeks into the SSRI), significant improvement. After that, there were unhappy periods of two to four days when she seemed to relapse, but then the improvement continued, and by week 12 (5th week of prednisone/12th week of SSRI), she was 95% better, where she remains. We also started 2000 mg/day of N-Acetyl-Cysteine (NAC) at about week 11. She is remains on the antibiotics.

 

We don't know which medication was the effective one. It sure seemed like the prednisone was doing the trick, but the literature says that SSRIs can take 10-12 weeks to work for regular OCD. So, we don't know. The prednisone had substantial and unpleasant side effects--weight gain, huge appetite, nasty mood swings/tantrums--which went away after the end of the treatment. The SSRI's have side effects, too, so we slowly lowered the dose, but are continuing at a low dose. I suggest trying 12 weeks on an SSRI before trying prednisone.

 

Good luck.

 

 

hi all,

For those that have done the steroid (prednisone) with their child, could I ask if you could weigh in with youre experience? my son has tics as the main problem, vocal and head. he's been on augmentin just as a trial from our ped because we thought he had a strep, but it turned out negative. Dr. L. has prescribed to continue on the abx (but this I understand is just to prevent further infection) and do a 30 day prednisone. I feel like he was starting to wane somewhat and that trend has contineued. don't know if its from the abx or just a natural waning from his exacerbation of vocal in late summer. actually he started alot of head/neck tics in the Spring and it continued til July, then the vocal got prominent. even tho they are still there, I do feel like its calmed down somewhat in frequency, I am seeing longer (hours) periods of time in between. Even tho Dr. L. suggested the steroid, I am really nervous of rocking the boat. I get used to the evil I know. at least its better than before. but I think its all relative, if some here have not seen these type tics, then it would seem bad to them. but since I am used to worse at times, this seems better. know what i mean? its all what you're used to.

 

our cam k score is 179, his main issue is tics, with alot of the other issues, a little ocd, irritable behavior, inattention. she did think it was high and seemed a little surprised since she didn't think he seemed that bad and felt his presentation was tourettes. but she did feel that he started young (3 1/2) and tourettes usually starts at 6 or 7. So is this all experimental just to see if it helps? she said it should help reduce the antibodies and thus inflammation, I think that's what I got from it. As far as PANDAS, I asked if he fit this category, and she just kind of answered "its probable". she does say this cam k research is still being compiled and alot is still unknown.

 

So if you all wouldn't mind giving me some advice on wether I should do this steroid or not? could you all give me your experience and wether you thought it helped or not? did anything get worse? Did it help with all symptoms, even behavior and attention? I want to know what to expect. would I be crazy to hold off til after the holidays or when he has another waxing?

 

thanks so much

Faith

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