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Posted

My son is on the 5 day pred. burst. I understand that every child responds differently but I'm interested in finding out which day you started seeing improvements in behaviors? Andrea

Posted

Santi- the general trend based on past posts indicates that younger children tend to respond quicker to the prednisone burst and this can vary from during the burst to two weeks later. Older children who have most likely been sicker longer tend to take longer to show the positive response from prednisone, like 3 wks after. Perhaps this is similar to the IVIG response where younger children tend to improve quicker and children over 10 can take 6 weeks.

Posted

We saw improvements on day 3 and day 7. He just seemed more relaxed and not as anxious. Out of the blue he told me that his brain felt hard and that it was getting stronger. Day 15 and 16 were absolutely awesome with much improved socialization and better speech. Today, Day 18, he brought home his 3rd quarter report card and read it twice, asked questions and read it to his dad over the phone. He is laughing and in such a good mood.

 

Our son is 8 yrs old. Diagnosed at 5 with PDD-NOS. Cant tell when he developed PANDAS. Saw Dr K on March 31st so when burst is done we will contact him.

 

I wish you the best!

 

johnsmom

Posted

My son had a 5 day steroid burst for his second strep triggered exacerbation. On day 4 (when 3 doses were completely in his system) I saw improvement. I see by another thread that your child tested + for Mycoplasma. I don't know if a steroid would have a different timeline for that. Is your child on antibiotics for Mycoplasma right now (like Zithromax or Biaxin)? What antibiotic is your child on while on the steroid?

Posted (edited)
  Joan Pandas Mom said:
We saw ramped up when he first started, then slight improvement for a few days, then OCD ramped up about 5 days after finishing prednisone. He was only on 40 mg a day for 5 days. He is 160 lbs.

 

Yup...that is a very low dose. We got 1 mg/kg the first time we did a burst, and then almost 2mg/kg (our dd is now 58 pounds, she got 50 mg/day) more recently. The first time it took about 2 weeks to see an improvement (which lasted only about 1 week). I would say the 2nd time it took 1.5 weeks to see an improvement.

Edited by EAMom
Posted
  Vickie said:
My son had a 5 day steroid burst for his second strep triggered exacerbation. On day 4 (when 3 doses were completely in his system) I saw improvement. I see by another thread that your child tested + for Mycoplasma. I don't know if a steroid would have a different timeline for that. Is your child on antibiotics for Mycoplasma right now (like Zithromax or Biaxin)? What antibiotic is your child on while on the steroid?

 

Presently, he is not on any abx. He finished a course of Azith. 500mg about 2 weeks ago. His pediatrician states that the abx should have killedd the infection and the raised levels to Mycoplasma P. only says that he HAD an infection. It sounds similar to what we went through with the ASO....that it only shows that he HAD strep. We have a good pediatrican but he told me he's not knowledgeable about all of this.

 

Does anyone know if the IgM is positive (Myco P) then does that state a present or past infection? Andrea

Posted (edited)

This was in an older thread...

 

 

  Quote
Here is something I found on the LabCorp site about Mycoplasma testing. I'm not a doctor by any means, but if I read this right, the IgM number can be absent during a re-infection, so just because the IgG number is positive does not mean that they are not currently having issue with it?? (see last sentence) Anyone else reading that like I am?

 

"A positive result indicates prior exposure to Mycoplasma. A single positive IgG result may be present in the absence of any clinical symptoms as specific IgG antibodies may remain elevated long after initial infection. Recent or acute infection can only be documented by a positive Mycoplasma IgM result and/or a significant increase in the IgG value between sera drawn two to four weeks apart. Specific IgM antibodies may persist for several months after infection or be absent during reinfection."

 

So, I think you would have to test it once to get a baseline, then test again later to see if the number has gone up or down. That may tell you if there is an infection? I admit, I get nervous doing a steroid burst without being on antibiotics. If he starts to worsen on the steroid, I would call the dr and tell him. That may mean he still has the infection and the steroid is making it worse by weakening the immune system. Now, some kids on here have tested + for Mycoplasma while being on Zith or Zith didn't seem to clear it. Perhaps they will chime in to explain. Some have had to go onto Biaxin. I have not gone through the Mycoplasma route with my son and hopefully those who have will give more insight.

 

Did your son have physical symptoms of Mycoplasma such as a cough when he was diagnosed with it? If so, does he still have it? I ask since if he did the cough should be gone 2 weeks after finishing meds. I know the cough continues after taking the abx, but should be gone by the 2 week mark.

 

 

 

 

 

  Santi said:
Presently, he is not on any abx. He finished a course of Azith. 500mg about 2 weeks ago. His pediatrician states that the abx should have killedd the infection and the raised levels to Mycoplasma P. only says that he HAD an infection. It sounds similar to what we went through with the ASO....that it only shows that he HAD strep. We have a good pediatrican but he told me he's not knowledgeable about all of this.

 

Does anyone know if the IgM is positive (Myco P) then does that state a present or past infection? Andrea

Edited by Vickie
Posted
  Vickie said:
This was in an older thread...

 

 

  Quote
Here is something I found on the LabCorp site about Mycoplasma testing. I'm not a doctor by any means, but if I read this right, the IgM number can be absent during a re-infection, so just because the IgG number is positive does not mean that they are not currently having issue with it?? (see last sentence) Anyone else reading that like I am?

 

"A positive result indicates prior exposure to Mycoplasma. A single positive IgG result may be present in the absence of any clinical symptoms as specific IgG antibodies may remain elevated long after initial infection. Recent or acute infection can only be documented by a positive Mycoplasma IgM result and/or a significant increase in the IgG value between sera drawn two to four weeks apart. Specific IgM antibodies may persist for several months after infection or be absent during reinfection."

 

So, I think you would have to test it once to get a baseline, then test again later to see if the number has gone up or down. That may tell you if there is an infection? I admit, I get nervous doing a steroid burst without being on antibiotics. If he starts to worsen on the steroid, I would call the dr and tell him. That may mean he still has the infection and the steroid is making it worse by weakening the immune system. Now, some kids on here have tested + for Mycoplasma while being on Zith or Zith didn't seem to clear it. Perhaps they will chime in to explain. Some have had to go onto Biaxin. I have not gone through the Mycoplasma route with my son and hopefully those who have will give more insight.

 

Did your son have physical symptoms of Mycoplasma such as a cough when he was diagnosed with it? If so, does he still have it? I ask since if he did the cough should be gone 2 weeks after finishing meds. I know the cough continues after taking the abx, but should be gone by the 2 week mark.

 

 

 

 

 

  Santi said:
Presently, he is not on any abx. He finished a course of Azith. 500mg about 2 weeks ago. His pediatrician states that the abx should have killedd the infection and the raised levels to Mycoplasma P. only says that he HAD an infection. It sounds similar to what we went through with the ASO....that it only shows that he HAD strep. We have a good pediatrican but he told me he's not knowledgeable about all of this.

 

Does anyone know if the IgM is positive (Myco P) then does that state a present or past infection? Andrea

He had a chronic cough about a year ago and he was treated with the inhalers. That was the first thing I thought of. Perhaps he's had this for a long time.

Posted

Days 3, 4, and especially 5 for my ds7 were notable in that he was calm but delicate during most of each day, but then had a raging blowout once during each of these days. Evening day 5 was the worst ever...rage, hallucinations, contamination fears. Then, day 6 (prednisone ended day 5), he was dramatically improved. He was tired and seemed "drained" from the previous days' roller coaster ride, but he was himself, with no more outrageous PANDAS behaviors. We haven't seen any dramatic PANDAS symptoms since. That was 13 1/2 weeks ago.

 

  Santi said:
My son is on the 5 day pred. burst. I understand that every child responds differently but I'm interested in finding out which day you started seeing improvements in behaviors? Andrea
Posted
  Athena said:
Days 3, 4, and especially 5 for my ds7 were notable in that he was calm but delicate during most of each day, but then had a raging blowout once during each of these days. Evening day 5 was the worst ever...rage, hallucinations, contamination fears. Then, day 6 (prednisone ended day 5), he was dramatically improved. He was tired and seemed "drained" from the previous days' roller coaster ride, but he was himself, with no more outrageous PANDAS behaviors. We haven't seen any dramatic PANDAS symptoms since. That was 13 1/2 weeks ago.

 

This sounds very much like we are going through. Tonight is the 5th night and I pray to God it gets better. His OCD, tics and hyperactivity were really bad tonight!

 

  Santi said:
My son is on the 5 day pred. burst. I understand that every child responds differently but I'm interested in finding out which day you started seeing improvements in behaviors? Andrea

Posted

BTW: I never gave ibuprofen at the same time as prednisone, but I did give my DS7 ibuprofen twice per day for several days beginning day 7 after the 5 day burst. He seemed so delicate and tired (but hungry!) that following week, the ibuprofen seemed to relax him.

 

  Santi said:
  Athena said:
Days 3, 4, and especially 5 for my ds7 were notable in that he was calm but delicate during most of each day, but then had a raging blowout once during each of these days. Evening day 5 was the worst ever...rage, hallucinations, contamination fears. Then, day 6 (prednisone ended day 5), he was dramatically improved. He was tired and seemed "drained" from the previous days' roller coaster ride, but he was himself, with no more outrageous PANDAS behaviors. We haven't seen any dramatic PANDAS symptoms since. That was 13 1/2 weeks ago.

 

This sounds very much like we are going through. Tonight is the 5th night and I pray to God it gets better. His OCD, tics and hyperactivity were really bad tonight!

 

  Santi said:
My son is on the 5 day pred. burst. I understand that every child responds differently but I'm interested in finding out which day you started seeing improvements in behaviors? Andrea

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