steroid burst survey

[Guest asaxon]

I am interested in hearing about people's experiences with steroid bursts. Would anyone whose children have tried them please describe:

 

.....PANDAS symptoms.

.....Duration & dosage of steroid Burst.

.....Other medications or med changes around the time of the steroid burst

.....Describe improvement seen (OCD, rages, etc.) and amount of improvement.

.....Days/weeks after beginning the burst that improvement was seen.

.....How long did the improvement last.

 

(I realize that there are some descriptions of steroid burst experiences on the forum, but it is sometimes hard to distinguish first hand experiences.)

 

Thanks!

[dcmom]

I am also interested, as we are seeing the neurologist tomorrow, and will be asking for a steroid burst. Please indicate if your child was at their worst point with symptoms, also. My dd is not at her worst point, but is still having some difficult symptoms that I would love a shot at getting under control before school starts. Thank you asaxon for a good topic.

[thereishope]

My 5 yr old son received predinsone when he was finally considered an extreme case. He wasn't eating ANYTHING for days, talking about wanting to go to heaven, talking about wanting me to go to heaven, rages beyond some imaginations, not dressing himself, OCD, etc, etc. So it was bad.

 

I don't remember the dosage, but he received it for 5 days. He started it about maybe 5 days after finding out he had strep again. He was also in the middle of a 10 day course of amox.

 

On day 4 (after 3 doses were now his system), I began to see him plateau w/ some improvement. He wasn't continuing to sprial. That was good to see. In my opinion, the steroid jump started recovery.

 

I think he finished his 10 day course of amox and his 5 day course of prednisone around the same time. He was then med free. We continued to see improvement and ultimately he went back to baseline ( until he got strep again). Overall, it took about 3 months for him to get back to being himself.

 

Let me add, he did not get a streoid during his first episode or his third. The neurologist reserved it only for an extreme case. Which his second time was.

[dcmom]

Vickie- Do you know why your doctor only reserved for worst case?

[thereishope]

I'm not sure. When you're in the midst of it, you tend to forget to ask those questions. I didn't find this group until after that whole episode ended, so at the time I didn't even know what a steroid burst was.

[greeneyes48072]

-primary symtpom were/are tics motor and physical

-six day pre-pack 21 pill methylprednisolone

-taking abx at same time, had already been on it for a month or two

-about an 80 % reduction seen

-reduction was seen on day five of the burst

-improvements only lasted a week and a half

[Guest asaxon]

-primary symtpom were/are tics motor and physical

-six day pre-pack 21 pill methylprednisolone

-taking abx at same time, had already been on it for a month or two

-about an 80 % reduction seen

-reduction was seen on day five of the burst

-improvements only lasted a week and a half

 

Thanks for the detailed response.

[nevergiveup]

me='Vickie' post='35725' date='Aug 4 2009, 12:35 PM']I'm not sure. When you're in the midst of it, you tend to forget to ask those questions. I didn't find this group until after that whole episode ended, so at the time I didn't even know what a steroid burst was. He's the one who offered it.The neurologist is familiar w/ PANDAS, has been research studies, and I do trust him. I do have some issues w/ him now for other reasons so that's why I haven't posted his name as a suggestion to others.Dr Cunnigham does know him.

[michele]

.....

[thereishope]

...

[thereishope]

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[nevergiveup]

Vicki, Be careful, he puts everything you say in writing and it is retained in the children's hospital medical records. Then when you try to see other doctors they are guarded and label you overly vigilent and a trouble maker. You will lose your ability to get proper care for your child. If he is talking with Cunningham, he would already know that if your child has a cold, symptoms relapse. This is well understood in autoimmune diseases. He knows this, I know for a fact he knows this he told me. He doesn't treat he says so clearly on the internet. I know what kind of reputation Children's has in Cincinnati. People in this town love childrens. Just the thought of going to another doctor with less credentials makes you scared you are doing the wrong thing. This was why I also insisted on staying at the hospital. However many divisions in CCHMC are leading in protocols and treatments and have well earned the respect of everyone in Cincinnati. Gilbert obviously is not like the other doctors in the other specialties. He is not a diagnostician, rather a statistician (look at his degrees). Funny when we go east, we always hear from the doctors and nurses, " wow why do you come here, with Childrens at Cincinnati." I never know what to say back to them because I feel the same way.

[Kayanne]

Pandas Symptoms for our DD6 started mid/end March or beginning of April—it was not a “sudden onset” in our case:

 

Anxiety, obsessive thoughts, inability to make a decision, frequent crying that evolved into belligerence, ADD type of behavior that seemed to evolve into more autistic type of withdrawal at home and school, the quality and quantity of her school work, writing and drawing declined, she refused to do the basic things—I had to force her to eat, sit on the toilet, take a bath…she was no longer an independent 6 yr in her thoughts and actions, She startled easily even with a soft voice, we think she had a coughing tic, she would keep her hands clenched and sometimes pull them up to her chest.

 

We took her to Dr. Latimer on June 5th she prescribed liquid prednisone (5mg/ml) and azithromycin. She also noticed very mild chorea.

 

Started the medication on June 6th:

100mg azith daily—still giving it to her

DH went to 3 pharmacies…the third gave us pedia-pred (5mg/5ml)--we just had to adjust the mls: Day 1—20mg; Week 1—20mg 2x/day: Week 2—10mg 2x/day: Week 3 –5mg 2x/day; Week 4—5mg 1x/day

 

We started to see baby steps of improvement within two days. That Monday she actually ran up to a classmate and smiled at him in the morning before school started. Slowly, the autistic type behavior seemed to devolve back into ADD type of behavior.

 

We had a really bad episode of screaming and fighting halfway through week two of the pedia-pred, but after that the belligerence really seemed to decrease back into crying fits.

 

Sometime around week two she started to interact with our family some more, but it was still very difficult for her to actually get her words out. She was also occasionally able to say “no” to a yes or no question. She also started to interact a little with some friends who were over for a play date.

 

By week three she no longer had eating issues…she finished her meals in the same amount of time as her siblings. She was beginning to get more independent…getting dressed and brushing her teeth in a good amount of time. Her focus was returning.

 

As we were nearing the end of week 4, we began to be concerned because Dr. Latimer said she should be 99-100% by the end of the month. We still felt that she had a long way to go…socially she was trying a little bit, but she couldn’t verbalize quickly or loudly enough to be included with her friends at the playground. She still had some difficulty making decisions, and even saying “yes” or “no”, she was still not as independent as before, she still didn’t want to write or draw at all.

 

On Thursday, July 2 we ran out of pedia-pred, and began to use our refill of regular prednisone (5mg/ml) that the pharmacy had ordered for us. We began to see a major improvement…she was talking, singing, asking questions, and smiling—within hours of taking it. We spent the weekend at the Pocono Mountains with my parents, and my mom was just amazed at her improvement. On Monday, her counselors at her tot lot camp were absolutely amazed…they said she had become again the little girl that they knew for the previous two summers. She was waving and yelling goodbye to her friends and their parents that day. When she saw my husband she said, “Daddy, I can talk now!”

 

We were supposed to stop the prednisone on Saturday, July 4th, however, on our own we continued to give it to her…we were able to get a message to Dr. Latimer and by Tuesday we were told to extend the prednisone at her current dose (5mg 1x/day) for two more weeks.

 

By July 18th she was 98%...we stopped the prednisone, and are continuing on the azith—for now…I am hoping to take her off of it soon and give her body a break…maybe start a different antibiotic by the time school starts.

 

She has been off the prednisone for 2 ½ weeks, and we have not seen any slip back…in fact we think that she is now at 99%. In the last week, she seems more interested in the creative things that she used to love…she reads more now, she has written a little bit, and she has been coloring in a hidden pictures book.

 

For some reason going to the bathroom upsets her still, but she hasn’t had any accidents, and eventually she goes to the bathroom independently. She still seems to have a very low level of anxiety about germs and the possibilities that she is “being mean” by thinking some things about people.

 

On June 5th in her office, Dr. Latimer told us that her improvement should last unless she gets sick again…we are still not sure if she reacts to viral issues or not...

 

Just one more thing that I want to add…after we began to see such tremendous results on the regular prednisone, I googled pedia-pred and found out that it is really prednisolone and not prednisone—they are both supposed to be equally effective, but my gut is telling me that in our case, the prednisone was more effective….

 

If for some reason, your pharmacy doesn’t carry liquid prednisone…wait a couple of days for them to order it….I feel that we would have seen better results sooner if we had.

 

Also, it is really nasty…we had good success mixing it with soda. The pharmacy couldn’t add flavoring to it because it was so concentrated.

 

Sorry for the long post….I can never seem to tell a short story!!

 

~Karen

 

 

I am interested in hearing about people's experiences with steroid bursts. Would anyone whose children have tried them please describe:

 

.....PANDAS symptoms.

.....Duration & dosage of steroid Burst.

.....Other medications or med changes around the time of the steroid burst

.....Describe improvement seen (OCD, rages, etc.) and amount of improvement.

.....Days/weeks after beginning the burst that improvement was seen.

.....How long did the improvement last.

 

(I realize that there are some descriptions of steroid burst experiences on the forum, but it is sometimes hard to distinguish first hand experiences.)

 

Thanks!

[T_Mom]

Quote:

" When she saw my husband she said, “Daddy, I can talk now!”...

...She has been off the prednisone for 2 ½ weeks, and we have not seen any slip back…in fact we think that she is now at 99%. In the last week, she seems more interested in the creative things that she used to love…she reads more now, she has written a little bit, and she has been coloring in a hidden pictures book....

 

~Karen"

 

 

Karen, That is fantastic news--thanks for sharing it with us. The thought of your little daughter saying "Daddy, I can talk now!" is wonderful--

 

We have had similar experiences. First prednisone burst ended a severe exacerbation. She was essentially held hostage by it. She had a sudden "recovery" of her abilities due to the steroids.

 

About 9 months later we tried another steroid burst when she was doing about 85% -- It brought her back to 100%. The effects for our d lasted fully for about 3 to 4 months. Then some low level issues have crept back.

[pandas2boys]

I am interested in hearing about people's experiences with steroid bursts. Would anyone whose children have tried them please describe:

 

.....PANDAS symptoms.

.....Duration & dosage of steroid Burst.

.....Other medications or med changes around the time of the steroid burst

.....Describe improvement seen (OCD, rages, etc.) and amount of improvement.

.....Days/weeks after beginning the burst that improvement was seen.

.....How long did the improvement last.

 

(I realize that there are some descriptions of steroid burst experiences on the forum, but it is sometimes hard to distinguish first hand experiences.)

 

Thanks!

 

Hi, my first post on this forum! (I have been surfing around lately and found lots of good info)

 

I just finished my second son's 5 day prednisone burst. I was thinking if I should start a new thread with our story which includes at least 2 of our kids and maybe more, but in the meantime, here is our information relevant to your question. (I copy pasted the info below from elsewhere and then edited it, so sorry if the grammar isn't perfect)

 

My second son's PANDAS symptoms started about 3 years ago, his tics included eye rolls, grimacing with mouth, licking upper lip, lots of yelling and shouting when he got irritated etc He tested positive on the ASO/Dnase tests. He was on Zithromax for about 2 years and stopped taking it in April 09. He was OK for about 2 months, but when he caught a virus, his pandas symptoms came back. There may have been a sibling at home with strep at that time. Since then, his symptoms have been up and down. We retook his ASO/Dnase test on 7/09/09, it came back positive with the antibody count at 170. On 7/25, we started him on a 5 day course of prednisone - 30 mg a day (he weighs about 65 lbs) per our phone consult with Dr Kovacevic. Day 1 he did great with noticeable improvement - he was much more calmer and relaxed than usual, on day 2, apparently the prednisone reduced swelling in his sinus areas, because he came down with numerous sinus symptoms (coughing, sounding nasal etc) and his pandas symptoms got real bad, we skipped day 3, then day 4, 5 and 6 he took 20 mg, and then this Saturday he took the last pill of 10 mg. Once the sinus type symptoms subsided, there was some slight improvement while he was still taking it, but nothing spectacular. His last dose was this past saturday, and since then, he does seem somewhat improved. On day 2 and 3, he was licking a lot his upper lip, and that seems to have stopped. But we still haven't seem him yet as good as the first day he took the prednisone. If I remember to check back here, I'll gladly update the progress.

 

PS I have an appointment scheduled with Dr Latimer at the end of this month. So far, I've heard pretty good feedback about her. If anyone has more to add, I'd like to hear it!