Steroid burst improvement

[browneyesmom]

How do you tell the difference?

 

This is day 9 of Augmentin & Azithromycin combined. By last night, we were still seeing a lot of difficulty in several areas.

 

Last strep infection, she completed Amoxicillin about a week before testing + again for this current one. However, we DID see a dramatic decrease in symptoms at the end of that antibiotic.

 

We started the steroid burst this morning. She will be at my ex-husband's from this evening until Sunday at bedtime, when he brings her back home. Unfortunately, he "doesn't see these issues"... part of the problem is that she does not report things to him, part is that she keeps a lid on it over there and part is probably that I pick up on things more than he as I am an RN and he is an engineer, so we are trained in different areas. She will complete the antibiotic Saturday.

 

So, now I am wondering if we should have done this steroid burst at this time... although she was REALLY having a very difficult time this week.

 

How do we tell though, if it is the steroid burst or the antibiotic that was helpful, assuming that she improves?

[Worried_Dad]

Hi, browneyesmom:

 

I can share our son's experience. Things were awful in late August / early September last year. He was completely out of control and quite frankly terrifying us, suicidal and raging. We were on zithro then, but no noticeable improvement after 10 days of it. For us, by Day 2 of the steroid burst, it was like the storm clouds parted and the sun came out. His rages, hours-long crying jags, and suicidal talk just vanished. He laughed and smiled again. On Day 3, he actually said "wow, I feel good." For our son, it wasn't a subtle effect; it was dramatic.

 

And a few days after the steroid burst ended, everything started downhill again, even though he was still on antibiotics. (He was also on 2 psych meds that we later found out were terrible choices for a PANDAS kid and that made a bad situation much worse... but that's another story.)

 

Don't know if it's the same for all PANDAS kids. In our son's case, it was just really obvious improvement.

 

Hope that helps!

 

 

How do you tell the difference?

 

This is day 9 of Augmentin & Azithromycin combined. By last night, we were still seeing a lot of difficulty in several areas.

 

Last strep infection, she completed Amoxicillin about a week before testing + again for this current one. However, we DID see a dramatic decrease in symptoms at the end of that antibiotic.

 

We started the steroid burst this morning. She will be at my ex-husband's from this evening until Sunday at bedtime, when he brings her back home. Unfortunately, he "doesn't see these issues"... part of the problem is that she does not report things to him, part is that she keeps a lid on it over there and part is probably that I pick up on things more than he as I am an RN and he is an engineer, so we are trained in different areas. She will complete the antibiotic Saturday.

 

So, now I am wondering if we should have done this steroid burst at this time... although she was REALLY having a very difficult time this week.

 

How do we tell though, if it is the steroid burst or the antibiotic that was helpful, assuming that she improves?

[browneyesmom]

Thanks for sharing... oh, to hear my daughter say, "Wow, I feel good!" I think that would make my whole month at this point!!

 

Would you mind telling me which psych meds he was taking? I want to be on the alert about that... Our daughter was recently increased from 10mg prozac to 20 mg prozac. She has done well on the 10 mg and we could always tell she did worse when she missed a couple doses and improved getting back on it... even though it was initially prescribed for her migraines last spring. I have read that there is little evidence it helps kids, so I am watching her carefully on that. Her counselor wants to add a stimulant for ADD focus issues and I'm not sure about that right now.

 

 

Hi, browneyesmom:

 

I can share our son's experience. Things were awful in late August / early September last year. He was completely out of control and quite frankly terrifying us, suicidal and raging. We were on zithro then, but no noticeable improvement after 10 days of it. For us, by Day 2 of the steroid burst, it was like the storm clouds parted and the sun came out. His rages, hours-long crying jags, and suicidal talk just vanished. He laughed and smiled again. On Day 3, he actually said "wow, I feel good." For our son, it wasn't a subtle effect; it was dramatic.

 

And a few days after the steroid burst ended, everything started downhill again, even though he was still on antibiotics. (He was also on 2 psych meds that we later found out were terrible choices for a PANDAS kid and that made a bad situation much worse... but that's another story.)

 

Don't know if it's the same for all PANDAS kids. In our son's case, it was just really obvious improvement.

 

Hope that helps!

 

 

How do you tell the difference?

 

This is day 9 of Augmentin & Azithromycin combined. By last night, we were still seeing a lot of difficulty in several areas.

 

Last strep infection, she completed Amoxicillin about a week before testing + again for this current one. However, we DID see a dramatic decrease in symptoms at the end of that antibiotic.

 

We started the steroid burst this morning. She will be at my ex-husband's from this evening until Sunday at bedtime, when he brings her back home. Unfortunately, he "doesn't see these issues"... part of the problem is that she does not report things to him, part is that she keeps a lid on it over there and part is probably that I pick up on things more than he as I am an RN and he is an engineer, so we are trained in different areas. She will complete the antibiotic Saturday.

 

So, now I am wondering if we should have done this steroid burst at this time... although she was REALLY having a very difficult time this week.

 

How do we tell though, if it is the steroid burst or the antibiotic that was helpful, assuming that she improves?

[Indigo]

Our experience was exactly like Worried Dad described...makes me wonder why we all keep going with these antibiotics!!

[Worried_Dad]

The "meds from ######" for our son were ativan and zyprexa. Dr. K (bless his soul!) warned us that these (benzos, neuroleptics) were bad news for PANDAS kids, we tapered off them, and things improved immensely. Here's an older post about it:

 

http://www.latitudes.org/forums/index.php?...ost&p=27774

 

Have to admit, that experience soured us on psych meds. We're gun-shy now. (The darned psychiatrist actually told us to increase the zyprexa dosage by a factor of 6: 1st day of that, it caused a dystonic reaction. Total nightmare!!!)

 

I don't want to freak anybody out, because I know carefully chosen and dosed psych meds have been helpful for some folks on this forum. But we learned the hard way to be very, very cautious.

 

 

Thanks for sharing... oh, to hear my daughter say, "Wow, I feel good!" I think that would make my whole month at this point!!

 

Would you mind telling me which psych meds he was taking? I want to be on the alert about that... Our daughter was recently increased from 10mg prozac to 20 mg prozac. She has done well on the 10 mg and we could always tell she did worse when she missed a couple doses and improved getting back on it... even though it was initially prescribed for her migraines last spring. I have read that there is little evidence it helps kids, so I am watching her carefully on that. Her counselor wants to add a stimulant for ADD focus issues and I'm not sure about that right now.

[melanie]

The "meds from ######" for our son were ativan and zyprexa. Dr. K (bless his soul!) warned us that these (benzos, neuroleptics) were bad news for PANDAS kids, we tapered off them, and things improved immensely. Here's an older post about it:

 

http://www.latitudes.org/forums/index.php?...ost&p=27774

 

Have to admit, that experience soured us on psych meds. We're gun-shy now. (The darned psychiatrist actually told us to increase the zyprexa dosage by a factor of 6: 1st day of that, it caused a dystonic reaction. Total nightmare!!!)

 

I don't want to freak anybody out, because I know carefully chosen and dosed psych meds have been helpful for some folks on this forum. But we learned the hard way to be very, very cautious.

 

 

Thanks for sharing... oh, to hear my daughter say, "Wow, I feel good!" I think that would make my whole month at this point!!

 

Would you mind telling me which psych meds he was taking? I want to be on the alert about that... Our daughter was recently increased from 10mg prozac to 20 mg prozac. She has done well on the 10 mg and we could always tell she did worse when she missed a couple doses and improved getting back on it... even though it was initially prescribed for her migraines last spring. I have read that there is little evidence it helps kids, so I am watching her carefully on that. Her counselor wants to add a stimulant for ADD focus issues and I'm not sure about that right now.

 

 

What is the dosage for the steriod burst ? Is prednisone(sp) the best one to use?

[Indigo]

We used prednisone and I'm not sure of the dose.

 

I agree on the psych meds!! The only med that dd is on besides the Azith now is guanfacine for hyperactivity. She has in the past been on everything from Risperdal to Lithium to Strattera to Zoloft and the list goes on...sigh. She's only seven!!! The diagnosis that we heard was possible schizophrenia which prompted the Lithium prescription-I took her off after 2 weeks...this was at the time that I had recurrent strep throat!! When we saw a DAN doctor I finally was able to see the strep/behavior connection.

[michele]

I have to look up the steroid burst Dr. K recommended for us. 1 mg per kg of body weight for five days. I have heard of a case where someone was greatly improved from a pulse cortico steroid burst very strong that was given over three days. Our ped is thinking about giving it but she will not do IVIG so I probably need to find a rheum that will handle the whole thing. Has anyone else had those results that there symptoms remained improved after the burst? Although she did mention her tics and symptoms were flaired up at first. We did have sucess with Abilify for the moods. We have had to up it a few times but started on 1.5 mg. He is up to 5 mg twice a day. We are now trying to improve the ADHD with strattera too. ADHD is a hard one to treat when you have the other issues such as tics and ocd. Some stimulants make the tics worse. It is very much trial and error. Hope this helps.

The "meds from ######" for our son were ativan and zyprexa. Dr. K (bless his soul!) warned us that these (benzos, neuroleptics) were bad news for PANDAS kids, we tapered off them, and things improved immensely. Here's an older post about it:

 

http://www.latitudes.org/forums/index.php?...ost&p=27774

 

Have to admit, that experience soured us on psych meds. We're gun-shy now. (The darned psychiatrist actually told us to increase the zyprexa dosage by a factor of 6: 1st day of that, it caused a dystonic reaction. Total nightmare!!!)

 

I don't want to freak anybody out, because I know carefully chosen and dosed psych meds have been helpful for some folks on this forum. But we learned the hard way to be very, very cautious.

 

 

Thanks for sharing... oh, to hear my daughter say, "Wow, I feel good!" I think that would make my whole month at this point!!

 

Would you mind telling me which psych meds he was taking? I want to be on the alert about that... Our daughter was recently increased from 10mg prozac to 20 mg prozac. She has done well on the 10 mg and we could always tell she did worse when she missed a couple doses and improved getting back on it... even though it was initially prescribed for her migraines last spring. I have read that there is little evidence it helps kids, so I am watching her carefully on that. Her counselor wants to add a stimulant for ADD focus issues and I'm not sure about that right now.

 

 

What is the dosage for the steriod burst ? Is prednisone(sp) the best one to use?

[melanie]

I have to look up the steroid burst Dr. K recommended for us. 1 mg per kg of body weight for five days. I have heard of a case where someone was greatly improved from a pulse cortico steroid burst very strong that was given over three days. Our ped is thinking about giving it but she will not do IVIG so I probably need to find a rheum that will handle the whole thing. Has anyone else had those results that there symptoms remained improved after the burst? Although she did mention her tics and symptoms were flaired up at first. We did have sucess with Abilify for the moods. We have had to up it a few times but started on 1.5 mg. He is up to 5 mg twice a day. We are now trying to improve the ADHD with strattera too. ADHD is a hard one to treat when you have the other issues such as tics and ocd. Some stimulants make the tics worse. It is very much trial and error. Hope this helps.

The "meds from ######" for our son were ativan and zyprexa. Dr. K (bless his soul!) warned us that these (benzos, neuroleptics) were bad news for PANDAS kids, we tapered off them, and things improved immensely. Here's an older post about it:

 

http://www.latitudes.org/forums/index.php?...ost&p=27774

 

Have to admit, that experience soured us on psych meds. We're gun-shy now. (The darned psychiatrist actually told us to increase the zyprexa dosage by a factor of 6: 1st day of that, it caused a dystonic reaction. Total nightmare!!!)

 

I don't want to freak anybody out, because I know carefully chosen and dosed psych meds have been helpful for some folks on this forum. But we learned the hard way to be very, very cautious.

 

 

Thanks for sharing... oh, to hear my daughter say, "Wow, I feel good!" I think that would make my whole month at this point!!

 

Would you mind telling me which psych meds he was taking? I want to be on the alert about that... Our daughter was recently increased from 10mg prozac to 20 mg prozac. She has done well on the 10 mg and we could always tell she did worse when she missed a couple doses and improved getting back on it... even though it was initially prescribed for her migraines last spring. I have read that there is little evidence it helps kids, so I am watching her carefully on that. Her counselor wants to add a stimulant for ADD focus issues and I'm not sure about that right now.

 

 

What is the dosage for the steriod burst ? Is prednisone(sp) the best one to use?

 

 

 

We are going to Columbia Presp in the city tomorrow to see a neurologist I know she is going to suggest meds not that Im not interested I want a neuro involved Danny is on Zithromax from his DAN dr long term he is great in NJ also Hes on Buspar 20mg and Tenex 30 mg I dont think the tenex does anything but Ill wait and see His tics are verbal and definitly has tourettes I think it started as Pandas and went undiagnosed and now its Tourettes hes 14 now and hey hes getting older He is on home instruction cant go to school right now he also has aspergers puberty really made things worse He has also tried every med Im just not sure if thats the answer if there even is one I would just like somme relief for him it doent seem fair

[EAMom]

hi Melanie,

I have not heard of steroid burst/IVIG being used on an older child for PANDAS (post-puberty)...you might want to contact Dr. K to see what his thoughts are.

[T_Mom]

"Has anyone else had those results that there symptoms remained improved after the burst? Although she did mention her tics and symptoms were flaired up at first."

 

Hi Michele,

 

My daughter had a steroid burst this summer and then was essentially symptom-free for about 8 weeks--until OCD symptoms hit again when she got a cold. I too would be interested in knowing if anyone had long-term effects with steroid burst for "Pandas"...

T.Mom

[greeneyes48072]

I just wanted to say, my son's primary symptom is tics with his PANDAS. We tried both Tenex and Clonodine (front runners for tourettes) but in his case they made the tics much much worse. The worse they have ever been over this whole ordeal (which is just over 3 months for us now). I do know I read somewhere that the traditional meds for tourettes make things worse for PANDAS kids, which we found to be true. Another thing that is very interesting is the steroid burst. I have heard that steroids make tourettes tics much worse, which is the opposite for these PANDAS kids. And trust me, when you see it, you know. My Dr did his own version of a burst. He used a prepacked 21 pill 6 day Methylprednisolone pack. We saw an 80% reduction on day five (nothing the first 4 days). It was great, but short lived. But great to have it to help with confirmation that it is PANDAS.

[browneyesmom]

Yesterday was day 4 on steroids - absolutely no improvement whatsoever yet. She had a fever 100.6 Sunday evening and c/o headache, sore throat, nausea as well as a decrease in appetite. My ex brought her home a little early. I brought her to pediatrician yesterday. Strep test was negative; I asked him to culture it, so he did send out one for culture. He also did a flu test, which was negative. Her eyes have had a reddened, sick look since he brought her home Sunday night, but fever was gone Monday.

 

No improvement noted yet on the steroids. Yesterday morning, I told her about the MD appointment that morning when I made it (she was in the room while I was on the phone making it and I confirmed after I got off the phone when she asked about it), but by afternoon, she had forgotten about it and became very upset that she was "not told". She became aggressive and attacked me, and when I asked her what she was doing, she said she was going to kill me. When I asked why, she said because I tried to kill her last night. Her talk during these rages gets more and more extreme and alarming. She refused to shower, but continued grabbing at me as I tried to shower, grabbing my back as I entered the shower and hitting me with her fists, kicking me. I finally got her to put on underwear and change from a pj shirt into a regular shirt, but still refused socks and shoes (crocs were the compromise) and to brush her hair. Night before last, she was pulling out strands of hair just after one episode and before another.

 

Our pediatrician is ordering a CT scan today (partially at my request to rule out anything there) and I am working, so I will have to leave work and take her from there (I am working in the clinic in her school) if it is today. We are also dropping her prozac from 20 mg back down to 10 mg where she had been.

 

I have not heard a thing from Dr. Swedo about an MD in our general area who handles PANDAS cases. Our pediatrician said he will increase his efforts to reach Dr. K over next couple of days; I emailed Dr. K yesterday telling him that our pediatrician has been trying to reach him and hopefully they will connect in next couple of days as our daugther seems to be getting worse and her dad and I are concerned. She had no memory of him returning Sunday night for one of the episodes. Sometimes, she will recall later.

[greeneyes48072]

Oh my, I'm so sorry. I do know the first days on our steroid pack, my son's hostility blew up, which I was told by a friend of mine to expect with a steroid. How many days is your burst? The pack my son was on was 24mg day one, 20mg day two, 16mg day three, 12mg day four, 8mg day five and 4mg day six. The hosility mellowed out once he was on the lower dosage, about day five...

[T_Mom]

Browneyes Mom I am so sorry--sounds like a most difficult time. I know our previous steroid burst was 5 days at 40mg, then 2 days at 30mg, 2 days at 10, and 2 days at 5mg. Prednisone. She is 11. You are in our thoughts--

T.Mom