steroids

[smartyjones]

i just reviewed a post from dec about steroids as treatment. with some responses lately, it seems many people have seen great results from adding a burst as an additional treatment - not as a test for effectiveness of IVIG -but to kind of kick it up a notch from a plateau or exacerbation.

 

if you have any thoughts you haven't posted in a while about steroids as treatment or any updates if you've done it, i'd appreciate it.

 

i'm trying to think of the positives - kayanne, vickie, dcmom, tmom, mati's mom - right? mdmom, your's was positive also, right? buster, worried dad - did you ever do steroids as treatment? please post negative experiences as well.

 

am i right that the theory is similar to ibuprofen but stronger - reducing swelling of the basal ganglia and/or close the BBB? is there anything else it's supposed to do?

 

thanks!

[dcmom]

Our experience with steroids has only been positive. Both my girls have pandas ocd, along with other symptoms (no tics). Younger and more severe dd has done 2 bursts. The last one we did, stopped a severe downward spiral after H1N1 with one dose. By four doses she was almost symptomless. This has lasted since Thanksgiving until now (hopefully longer). Older dd with less severe onset, did a steroid burst recently as well. It worked wonders for her mood, diet, and took the edge off of her anxiety. The ocd around a few issues is still there, but the grip is not as strong.

 

I don't know that this means we won't need ivig in the future- but we will try antibiotics with a few steroid bursts (when needed) , before we would progress to IVIG.

 

The dosage of steroids is similar to if your child had asthma, or a bad case of poison ivy.

 

I haven't found ibuprofin to work for us, yet.

[Kayanne]

We also had a great result with Dr. Latimer's steroid treatment.

 

I am hopeful that if she has another PANDAS episode, we can stop it from getting too bad. I am also glad that my daughter responded to this "first line" of treatment because I feel like I still have Plasmapheresis and IVIG to fall back on.

 

Side effects were minimal...she wasn't eating well so the weight gain was appreciated....ragey for the first two weeks, but she was beginning to rage prior to strarting the pred...one pimple...cheeks looked a little fuller, but it was hard to tell because she naturally has fuller cheeks.

 

I would definately do it again.

 

Prednisone is also an immuno-suppresent....but I was told that is generally after a month of use...I think is suppresses B cells...haven't looked that one up in a while.

 

~Karen

[momto2pandas]

My kids have not taken steroids, but I recently had my first "real" PANDAS episode in many, many years (decades?), associated with a very bad and stubborn sinus infection, and the steroids were amazing. I only had 7 days, but wow, what a change within a couple of days. The thing that I found most remarkable is that not only did all of the mood, tic, anxiety, headache stuff go away quite abruptly, but things like my thinking and memory became much sharper, as well. I had been having a bit of trouble with retrieval for several months - nothing that meaningfully affected my work, etc., but stuff like not being able to complete questions on a crossword puzzle that I knew that I knew (you know, names of actresses, geographic trivia, etc.), not being able to remember phone numbers, etc. I had attributed that to age, fatigue, "too much going on" and so on, but after that course of steroids, I suddenly found myself sharp again. What a joy when over Christmas break I sat down and did the whole newspaper cross-word! For months previous, I wouldn't even have tried for fear of frustration. Granted, I also finally managed to kick the sinus infection over that interval, but the improvement seemed to come with the steroids; kicking the sinus infection completely took a while longer.

 

I didn't have any noticeable side effects, which kind of surprised me. Didn't notice a significant increase in appetite or acne or anything like that.

 

My kids have been doing well so far with just antibiotics, but if it came to a significant exacerbation, I would definitely pursue a brief course of steroids for them based on my own experience.

 

 

i just reviewed a post from dec about steroids as treatment. with some responses lately, it seems many people have seen great results from adding a burst as an additional treatment - not as a test for effectiveness of IVIG -but to kind of kick it up a notch from a plateau or exacerbation.

 

if you have any thoughts you haven't posted in a while about steroids as treatment or any updates if you've done it, i'd appreciate it.

 

i'm trying to think of the positives - kayanne, vickie, dcmom, tmom, mati's mom - right? mdmom, your's was positive also, right? buster, worried dad - did you ever do steroids as treatment? please post negative experiences as well.

 

am i right that the theory is similar to ibuprofen but stronger - reducing swelling of the basal ganglia and/or close the BBB? is there anything else it's supposed to do?

 

thanks!

[thereishope]

I had a good experience with steroids. We did not have tics either.

 

Steroids are often used with other autoimmune disorders as well. I believe to take down the inflammation.

 

I wondered if the steroid would also suppress the immune system and slow dow the production of the bad strep antibodies.

 

If my son should get sick again, I plan on begging for a steroid very early on.

[michele]

Andrew got very agitated on the steroids. He was also on Abilify and clonidine as well. We did them for three weeks and he kept getting meaner. I had never seen him as angry or raged ( he kicked a hole in the wall. He does have anxiety and compulsions and tics so maybe they don't work as well in the chronic kids who always have symptoms and are on anti psych meds. He was also on antibiotics at the time but seemed to be in exacerbation too. His butt was really hurting from encopresis/ constipation too which may have led to the behaviors. He did improve after them though and his temper did get better also. Maybe it is the risperdal we changed to from abilify or maybe it was the steroids or a combo. We have not done anything more as far as treatments after them but the tenex, risperdal and prozac. We did not have the wow effect some people here have had on the steroids. I wish Dr. Latimer would have followed up and offered us something else after the steroids. She didn't even try the azith with us.

 

 

 

I had a good experience with steroids. We did not have tics either.

 

Steroids are often used with other autoimmune disorders as well. I believe to take down the inflammation.

 

I wondered if the steroid would also suppress the immune system and slow dow the production of the bad strep antibodies.

 

If my son should get sick again, I plan on begging for a steroid very early on.

[dut]

Hello

 

Our dd6 (65lbs) was dx PANDAS 2 yrs ago. She has had 2 major and some minor episodes that included ocd/tics/chorieform movements and a horde of behavioral stuff.

 

After a flu-like illness at thanksgiving she exhibited ocd symptoms after being symptom free for months. We watched for a few days and by about 4-5 days in she started to take a nosedive - increased ocd/hyper/more difficult to discipline. We did a 5 day steroid burst at 60mg per day. Within 1 day we were down to 3-4 ocd type worries per day. The day following the end of the burst she was symptomless again.

 

We are now 4 weeks post burst and have seen 1 worry per day creep back in during the last week at bedtime. Dr T told me that we could repeat the burst again if needed and that he felt a few bursts a year would be no problem. He suggested we use a medroll pack (sp) next time. Similar to that used for MS. I believe its 5 days and 2 days quick taper.

 

Symptoms from steroids were a bad temper, but not huge, for the 5 days on and then an increase in appetite the following week, no sleep disturbance thankfully.

 

I also would do it again at the drop of a hat and my dd is super pleased as she feels it is her safety net.

 

Thanks...

[GAmom]

I am new to this forum, and am not really sure how to post questions. I have an 11 year old daughter diagnosed with PANDAs who has OCD symptoms. We have done one IVIG therapy in Chicago with Dr. K, and she's taking Augmentin. She's been doing OK - not perfect - since the IVIG, but it seems to be getting worse lately. Always scared that she'll be sick, and now not sleeping well and afraid to go to school. I feel as if IVIG was not completely successful. Has anyone had this issue?

 

Our experience with steroids has only been positive. Both my girls have pandas ocd, along with other symptoms (no tics). Younger and more severe dd has done 2 bursts. The last one we did, stopped a severe downward spiral after H1N1 with one dose. By four doses she was almost symptomless. This has lasted since Thanksgiving until now (hopefully longer). Older dd with less severe onset, did a steroid burst recently as well. It worked wonders for her mood, diet, and took the edge off of her anxiety. The ocd around a few issues is still there, but the grip is not as strong.

 

I don't know that this means we won't need ivig in the future- but we will try antibiotics with a few steroid bursts (when needed) , before we would progress to IVIG.

 

The dosage of steroids is similar to if your child had asthma, or a bad case of poison ivy.

 

I haven't found ibuprofin to work for us, yet.

[Debbie1]

My daughter had two rounds of steroids in the last year. The first (a high dose for a week then a quick taper) put her symptoms (tics) into complete remission for 6 months. After six months, she started having exacerbations again with strep exposure. She was on prophylactic amox at the time, which perhaps wasn't doing its job at protecting her from strep. Or perhaps the immuno-suppressive properties of the steroid wore off at that point.

 

The second round of steroids was through Dr. L. (a lower dose but one month course). It was less effective. This time the steroids brought her to about 70% improvement but since finishing the steroid, she has had a bumpy road. She continues to struggle with an episode that began in the summer, and although her symptoms are improved, we are not satisfied with where she is right now. She still has extremely elevated titers as well (same as they were before round two of steroids) although the steroids are supposed to help the titers come down more quickly.

 

She had minimal side effects from the steroid (a little weight gain, fullness in cheeks), but nothing major and it gradually went away once stopping the steroid.

[Debbie1]

GA Mom,

 

Welcome to the forum. I do not want your post to get lost over here. If you click on "New Topic" (upper right of the PANDAS forum), you can post any questions under a new thread. Sorry you find yourself here, but you will get lots of information and wonderful support from a very caring group.

 

Debbie

[momto2pandas]

Medrol pack is what I took.

 

Hello

 

Our dd6 (65lbs) was dx PANDAS 2 yrs ago. She has had 2 major and some minor episodes that included ocd/tics/chorieform movements and a horde of behavioral stuff.

 

After a flu-like illness at thanksgiving she exhibited ocd symptoms after being symptom free for months. We watched for a few days and by about 4-5 days in she started to take a nosedive - increased ocd/hyper/more difficult to discipline. We did a 5 day steroid burst at 60mg per day. Within 1 day we were down to 3-4 ocd type worries per day. The day following the end of the burst she was symptomless again.

 

We are now 4 weeks post burst and have seen 1 worry per day creep back in during the last week at bedtime. Dr T told me that we could repeat the burst again if needed and that he felt a few bursts a year would be no problem. He suggested we use a medroll pack (sp) next time. Similar to that used for MS. I believe its 5 days and 2 days quick taper.

 

Symptoms from steroids were a bad temper, but not huge, for the 5 days on and then an increase in appetite the following week, no sleep disturbance thankfully.

 

I also would do it again at the drop of a hat and my dd is super pleased as she feels it is her safety net.

 

Thanks...

[familyof4]

I am also interest in this topic. My pediatrician is willing to do a 5 day burst but not a 30 day taper down as it involves "unecessary risks" in her opinion.

 

It does sound like a few folks have gotten some results with just the 5 day. Motrin works really well for my son so I think a steriod burst would do him wonders.

[memom]

We had good results with the month of steroids but had return of symptoms with taper off. We are trying another blast starting tomorrow with a change in antibiotic. My daughter also noticed mental clarity, decreased ocd and overall feeling more normal and less "swollen brain". Weight gain and puffy cheeks went away once she was off the steriods.

 

Ellie

[Suzan]

Dr. T said no steriods for us since my girls do not mount a good immune response in their strep titers or IgA, IgG, etc. and he does not want to further suppress their system. Otherwise, I think we would be trying them too.

 

Susan

[coco]

We have used steroids on my dd twice. First time in July as a diagnostic tool for Pandas, and she experienced almost immediate relief, not symptomless by any means, but a marked difference. We are now doing monthly ivig and in early December she was going through a symptoms flare and Dr. B prescribed steroids for several weeks with taper and she responded very positively almost immediately. So far, the benefits appear to be holding and we have since done an additional ivig. Dr. B said occasional bursts would help her through the rough patches and works well with ivig treatments. When I took the bottle out of the fridge (she takes prednisolone) I always joked to my husband..."Here comes the liquid gold!"