How long after starting antibiotic did you do steroid burst?

[Phasmid]

He has been on azithromycin for two weeks. Not much difference that I can tell. But his issues are so subtle (and I have been living with them for so many years I don't know what I'm looking at anymore ) that I don't know if it has done any good or not. So, his doc said he would wait to do anything else such as steroid trial, etc. How soon would you want to try the next thing? The thing I am using as a "gauge" is how often he pulls his eyelashes, and how "stuck" he seems to be in doing just one thing. After six years plus I am ready to jump to IVIG.

[bgbarnes]

He has been on azithromycin for two weeks. Not much difference that I can tell. But his issues are so subtle (and I have been living with them for so many years I don't know what I'm looking at anymore ) that I don't know if it has done any good or not. So, his doc said he would wait to do anything else such as steroid trial, etc. How soon would you want to try the next thing? The thing I am using as a "gauge" is how often he pulls his eyelashes, and how "stuck" he seems to be in doing just one thing. After six years plus I am ready to jump to IVIG.

I am so glad you asked this because I am not seeing the results I hoped on our long dose of zith. Yes there are improvements but then it is as if something have gotten worse- he also had Myco so I am wondering if some of it is Herx. I am REALLY tempted to ask for steroid burst.

Brandy

[AmberM]

I'm in the same boat here too. My dd has been on azith for almost 2mos. now and we have seen improvements in overall mood, anxiety, and rigidity but her ocd stuff is still going pretty strong. I'm grateful for any progress we can get but I kinda feel like we're seeing that door cracked open and I need to ram through it now! My problem is that my dd is only 2 1/2 yrs old and I don't really know what the next step is. I don't know if we need to play with abx dosage or brand, try LDN or something like that, or try and pursue something like steroids/ IVIG? I realize she's young but we've basically missed out on most of her development due to this crappy situation....... we started noticing first signs right around 18mos or so. I certainly don't want to miss out on anything else.

-Amber

[Phasmid]

Would you mind sharing more about your daughter's symptoms?

[thereishope]

With my son, it was exacerbation #2 that he got a steroid burst. He did not follow his previous pattern of having any improvement with the antibiotic. He started his 5 day steroid burst I believe 5 days after starting an antibiotic. he was just worsening and spiralling down fast. In his previous exacerbation, we had seen a glimmer of improvement by day 5 of antibiotics.

 

How does your son react to Ibuprofen? Can he take that?

Edited June 18, 2010 by Vickie

[dcmom]

I have two girls with pandas. Both reacted well at first to antibiotics, but eventually needed more.

 

From what we have done, I think I would suggest a 30 day course of daily treatment dose antibiotic- preferably zithromax or Augmentin XR. At that point, if you are not seeing major, continued improvement, I would consider adding a steroid burst. I prefer a 4 week tapering burst. This has dramatically helped my kids.

 

You will most likely see great progress with the burst. The question is whether the child can maintain this progress. If they are continuosly losing ground, it is time to move forward to pex or ivig.

 

I find it is important to be thinking, and making arrangements one step ahead. This disorder can be so cruel- I think parents and doctors need to act methodically, but quickly, to find a solution.

 

Prior to steroids, I would have some bloodwork done: Dr Cunningham's test, lyme panel, immune panel.

 

good luck- it is a balance of patience and action...

[AmberM]

My dd has autism as well so it gets a little murky for me as to what symptoms are stemming from what problem but I guess it really doesn't matter. After starting the abx, I'm starting to have this strong feeling that her main problem is PANDAS and maybe her autism is more mild than we thought.

 

Anyway her symptoms are as follows..... no particular order:

1. she has this sort of grimace she makes on her face about 10 times a day... the, "I'm gonna kick your butt" face

2. she insists I drive down certain streets to get to places or all ###### breaks loose

3. we have to walk around the neighborhood in a certain direction and she has several points to stop at (signs, sprinklers, lights, etc)

4. severe anxiety and separation anxiety

5. extreme rigidity

6. emotional lability

7. she runs around the house all day on an "invisible track"

8. she didn't have a lot of language before but seemed to lose all of her language right about the time these behaviors started

 

I know a lot of these symptoms can be written off as autism but the fact that the intensity has lessened while on zithro makes me think we are on the right track. We've had several school district people, therapists, people mention that my dd doesn't present like most autistic kids they've been around so I just feel like there is more going on.

-Amber

 

 

 

Would you mind sharing more about your daughter's symptoms?

[Phasmid]

Thanks. He did 30 days of biaxin. Now, 14 days of azithromycin. Interesting info about the augmentin being neuroprotective and so many have responded well to it. For us, too late to act "quickly" as we only realized it was PANDAS this year. He has been ill for over six years. I worry about long term damage, but can only hope and pray that he can be turned around. I am hoping the steroid burst will work as it has for others. We have done all the tests included CaMk. He is 152 on CaM, is pretty ok except low IgA subclass 1, neg. for Lyme (Western blot). Dr. Lin told me that antibiotics and "immunotherapy" will be the main course of action. I don't know what "immunotherapy" he means; drugs or ivig? We'll find out I guess.

 

Thanks again.

 

 

 

 

Prior to steroids, I would have some bloodwork done: Dr Cunningham's test, lyme panel, immune panel.

 

good luck- it is a balance of patience and action...

[Stephanie2]

Amber, I would not think the the symptoms you listed are due to autism. the way i see it, autism is basically social and communication deficits. what you listed is more OCD. So, when you take away the pandas, she may still have some social and communication deficits (which may be helped by some other biomedical things) but she won't have the OCD/tantrums, etc that are so debilitating for the family.

 

My friend's little boy was dx'd with mild-moderate PDD-NOS and he is lightyears ahead of my sons in terms of mental stability. My boys presented with ASD issues at one time (like I have described before) but their most debilitating problem has been pandas all along. And yes, I do think that pandas does affect social/language to an extent, but in my boys I dont' think it was the sole cause of these things.

 

stephanie

 

My dd has autism as well so it gets a little murky for me as to what symptoms are stemming from what problem but I guess it really doesn't matter. After starting the abx, I'm starting to have this strong feeling that her main problem is PANDAS and maybe her autism is more mild than we thought.

 

Anyway her symptoms are as follows..... no particular order:

1. she has this sort of grimace she makes on her face about 10 times a day... the, "I'm gonna kick your butt" face

2. she insists I drive down certain streets to get to places or all ###### breaks loose

3. we have to walk around the neighborhood in a certain direction and she has several points to stop at (signs, sprinklers, lights, etc)

4. severe anxiety and separation anxiety

5. extreme rigidity

6. emotional lability

7. she runs around the house all day on an "invisible track"

8. she didn't have a lot of language before but seemed to lose all of her language right about the time these behaviors started

 

I know a lot of these symptoms can be written off as autism but the fact that the intensity has lessened while on zithro makes me think we are on the right track. We've had several school district people, therapists, people mention that my dd doesn't present like most autistic kids they've been around so I just feel like there is more going on.

-Amber

 

 

 

Would you mind sharing more about your daughter's symptoms?

[peglem]

My dd has autism as well so it gets a little murky for me as to what symptoms are stemming from what problem but I guess it really doesn't matter. After starting the abx, I'm starting to have this strong feeling that her main problem is PANDAS and maybe her autism is more mild than we thought.

 

Anyway her symptoms are as follows..... no particular order:

1. she has this sort of grimace she makes on her face about 10 times a day... the, "I'm gonna kick your butt" face

2. she insists I drive down certain streets to get to places or all ###### breaks loose

3. we have to walk around the neighborhood in a certain direction and she has several points to stop at (signs, sprinklers, lights, etc)

4. severe anxiety and separation anxiety

5. extreme rigidity

6. emotional lability

7. she runs around the house all day on an "invisible track"

8. she didn't have a lot of language before but seemed to lose all of her language right about the time these behaviors started

 

I know a lot of these symptoms can be written off as autism but the fact that the intensity has lessened while on zithro makes me think we are on the right track. We've had several school district people, therapists, people mention that my dd doesn't present like most autistic kids they've been around so I just feel like there is more going on.

-Amber

 

 

 

Would you mind sharing more about your daughter's symptoms?

Exactly my daughter- really! Her pediatrician thinks the PANDAS caused the autism. And prior to discovering the PANDAS, he used to say she wasn't like most autistic kids-

 

Zith is what works best for my daughter....except- last December (and again last month) we did a ten day course of rifampin w/ full strength augmentin. This always whips up the yeasts- but when we get rid of the yeast afterwards (diflucan), she does VERY well- better than I ever thought she could. Just thought I'd share that.

 

BTW, my daughter's rages and SIBs started around 18 months old as well.