Prednisone Burst

[Johnsmom]

Buster-

 

What is your thought on our situation. Three years on Gluten, casein, soy free diet, supplements, and chelation. We are on day 15 of the burst but were in decent spot to begin with before we started. We are seeing amazing things. With all this talk about inflammation, could the diet etcc have helped our son by reducing some inflammation. This is probably a tough one to answer as you dont know our whole story.

Any thoughts?

Ann

 

 

I thought the triggers are the Strep A. Or can it be something else? Andrea

Well PANDAS is thought to be caused by 3 things:

1. the creation of an anti-neuronal antibody (likely in response to GABHS)
   
2. the failure of the immune system to recognize this as anti-host and suppress the antibody
   
3. a breach of the blood brain barrier allowing the antineuronal antibody to reach neuronal tissue
   

So while strep seems to cause #1 and the exotoxins of strep (and superantigens of strep) seem to cause the breach in #3. Many other things can cause or trigger a breach. Actually any inflammation (or even high blood pressure) can cause the breach. So if for some reason your child has high inflammation of the endothelial cells around the brain, then something other than GABHS could allow the existing antibodies (that live for 4-8 weeks) to interact with neuronal tissue.

 

Thus while the non-GABHS might not be the "cause" of the anti-neuronal antibodies -- it can be the cause of the symptoms by opening the BBB.

 

Buster

[Buster]

Not sure how to comment on your post. Are you saying you were back at baseline when you started the burst? Or that you are substantially better post Pred? Usually the burst is given during an exacerbation.

 

Buster

 

Buster-

 

What is your thought on our situation. Three years on Gluten, casein, soy free diet, supplements, and chelation. We are on day 15 of the burst but were in decent spot to begin with before we started. We are seeing amazing things. With all this talk about inflammation, could the diet etcc have helped our son by reducing some inflammation. This is probably a tough one to answer as you dont know our whole story.

Any thoughts?

Ann

 

 

I thought the triggers are the Strep A. Or can it be something else? Andrea

Well PANDAS is thought to be caused by 3 things:

1. the creation of an anti-neuronal antibody (likely in response to GABHS)
   
2. the failure of the immune system to recognize this as anti-host and suppress the antibody
   
3. a breach of the blood brain barrier allowing the antineuronal antibody to reach neuronal tissue
   

So while strep seems to cause #1 and the exotoxins of strep (and superantigens of strep) seem to cause the breach in #3. Many other things can cause or trigger a breach. Actually any inflammation (or even high blood pressure) can cause the breach. So if for some reason your child has high inflammation of the endothelial cells around the brain, then something other than GABHS could allow the existing antibodies (that live for 4-8 weeks) to interact with neuronal tissue.

 

Thus while the non-GABHS might not be the "cause" of the anti-neuronal antibodies -- it can be the cause of the symptoms by opening the BBB.

 

Buster

[Johnsmom]

No I wouldnt say baseline at all. Our son was in a good spot when we started the prednisone and I wasnt sure what further improvment we would see. He hasnt been on antibiotics since November but has had some ups and downs but not long lasting where I needed to get him back on antibiotics. Dr K told us we had to be objective about what we saw during the burst. I could go on for hours about what we have seen, especially in the past few days. Our son has been way more social than normal. he is relaxed, there are no emotional outbursts and no anxiety or indecisiveness (sp) His body and gestures just seem to be relaxed. There is no tension.

Its not perfect. I noticed just a teeny bit of staring at the lights (for about a second) and counting words on his hand. (he counts the words as we talk)

I was told my kid had PDD-NOS and we took it upon ourselves to do all the DAN protocol stuff like diet, supplements, chelation, etc. So I was just wondering if there are others out there that may have benefited from these interventions.

Just curious

thanks Buster

Ann

 

 

Not sure how to comment on your post. Are you saying you were back at baseline when you started the burst? Or that you are substantially better post Pred? Usually the burst is given during an exacerbation.

 

Buster

 

Buster-

 

What is your thought on our situation. Three years on Gluten, casein, soy free diet, supplements, and chelation. We are on day 15 of the burst but were in decent spot to begin with before we started. We are seeing amazing things. With all this talk about inflammation, could the diet etcc have helped our son by reducing some inflammation. This is probably a tough one to answer as you dont know our whole story.

Any thoughts?

Ann

 

 

I thought the triggers are the Strep A. Or can it be something else? Andrea

Well PANDAS is thought to be caused by 3 things:

1. the creation of an anti-neuronal antibody (likely in response to GABHS)
   
2. the failure of the immune system to recognize this as anti-host and suppress the antibody
   
3. a breach of the blood brain barrier allowing the antineuronal antibody to reach neuronal tissue
   

So while strep seems to cause #1 and the exotoxins of strep (and superantigens of strep) seem to cause the breach in #3. Many other things can cause or trigger a breach. Actually any inflammation (or even high blood pressure) can cause the breach. So if for some reason your child has high inflammation of the endothelial cells around the brain, then something other than GABHS could allow the existing antibodies (that live for 4-8 weeks) to interact with neuronal tissue.

 

Thus while the non-GABHS might not be the "cause" of the anti-neuronal antibodies -- it can be the cause of the symptoms by opening the BBB.

 

Buster

[justinekno]

Somewhat on the lines of this subject, I am wondering how many people did the Cunningham test prior to being more aggressive in treatments, i.e. steriods and ivig. I apologize if I missed an older post about this already. I searched but didn't see much.

 

Dr. K recommended a 5 days prednisone burts at 25mg for my son to see if we could get any closer to finding out if he has PANDAS. I'm a little nervous about it even though he assured me it was safe. Any experiences with this? Also, can anyone explain what exactly happens to the body when you do this? how is it related to PANDAS possibly? We only discussed what behaviors to look out for. Andrea

[peglem]

Somewhat on the lines of this subject, I am wondering how many people did the Cunningham test prior to being more aggressive in treatments, i.e. steriods and ivig. I apologize if I missed an older post about this already. I searched but didn't see much.

 

We did C-test before getting terribly aggressive. We only had prophylactic dose of zith prior to C-test, just because we really didn't know what to do about it before then. Pediatrician tried to get specialists to help, and even tried to get IVIG before that, but the C-test gave him some real information that we just didn't have before, that demonstrated there was more going on than a "carrier" w/ low ASO titers who was just autistic.

[Stephanie2]

Johnsmom,

We are doing the DAN protocol. We started the GFCFSF diet during an exacerbation (didn't know he had pandas at the time) and there was a definite difference when I removed gluten completely. There was a calming effect. I have to assume that the diet did have an antiinflammatory effect, and I have heard that it does. Additionally, my son tested IgG sensitive to gluten and soy, so by removing these there should be an antiinflammatory effect. By the way, I have been lax about their diet lately (husband out of town for extended time) and sure enough I have noticed non-stop pandas symptoms. I do think that he diet may play a role in the inflammatory side of things.

 

We are doing tons of supplements that are antiinflammatory, but my 5 year old (and my 2 year old) just seem to be getting progressively worse in terms of pandas/inflammation. I don't know if that means that the supps are not working or if they are just progressively becoming more reactive to more antibodies and their pandas disease-state is just getting worse because it has gone uncontrolled for so long. My 5 year old definitley needs some bombs dropped on his pandas (just did our first IVIG 2 weeks ago, not sure if we did high enough dose, though), and my 2 year old as of today had one of the worst sudden-onset pandas I have ever seen with him so I started his steroid burst that I had on the back-burner.

 

Interestingly, my 2 year old is what I consider to be a "recovered" early-onset autistic child (early onset of symtoms and very early DAN intervention with GREAT success) but still has a significant speech delay. Today I gave him the steroid this morning and by this evening at dinner he was spouting off words left and right! I could have cried! I know it may be temporary for now, but I now see how the inflammation is so much a part of his speech problem. Guess I need to suck it up and clean up their diet when daddy gets home. So hard not to put them in the car and head for mcdonalds (cringe).

 

Anyway, we should keep in touch as the kids doing the DAN protocol have such a unique experience treating pandas it seems, at least my kids do. Such a hard time tolerating antibiotics, steroids etc...

 

Stephanie

No I wouldnt say baseline at all. Our son was in a good spot when we started the prednisone and I wasnt sure what further improvment we would see. He hasnt been on antibiotics since November but has had some ups and downs but not long lasting where I needed to get him back on antibiotics. Dr K told us we had to be objective about what we saw during the burst. I could go on for hours about what we have seen, especially in the past few days. Our son has been way more social than normal. he is relaxed, there are no emotional outbursts and no anxiety or indecisiveness (sp) His body and gestures just seem to be relaxed. There is no tension.

Its not perfect. I noticed just a teeny bit of staring at the lights (for about a second) and counting words on his hand. (he counts the words as we talk)

I was told my kid had PDD-NOS and we took it upon ourselves to do all the DAN protocol stuff like diet, supplements, chelation, etc. So I was just wondering if there are others out there that may have benefited from these interventions.

Just curious

thanks Buster

Ann

 

 

Not sure how to comment on your post. Are you saying you were back at baseline when you started the burst? Or that you are substantially better post Pred? Usually the burst is given during an exacerbation.

 

Buster

 

Buster-

[Johnsmom]

Stephanie-

 

My son, who is diagnosed PDD-NOS at 5, now 8 is doing well. We were not in an exacerbation at the time of the burst but still had some minor issues. I asked Dr K : "How will we know if he is in such a good spot now?" He gave us this ananlogy ( I wont go into it) that made sense so we started on April 1st and saw good things on the 3rd and the 5th day and then this past week, days 15 and 16 were unbelievable. No weird body movements or faces, totally relaxed, good speech, no anxiety. A kid who he never plays with came to our door and asked if he wanted to play and he said "Sure" and off they went for about 3 hours. The next day the same kid came over and asked him to play again. (On Fridays all my son wants to do is play video games. He waits all week to do this. He is totally obsessed.) my son went outside and played with this kid again for another 2-3 hours. No video games. It was amazing! My son has huge anxiety when it comes to playing with kids he really doesnt know and this just looked so normal!!!

i think we are started to slip a little on the burst though this weekend. The week as a whole was great!!!

John is gf/cf/sf. We take multiple supplements and have been on and off with antibiotics.

We have had six titer tests run that all came back elevated. We did this becuase of behaviors but the doctor said he didnt have PANDAS cuz his Anti Dnase were not elevated. Then our last appt with that clinic was with a new PAC and he said well he kind of has PANDAS. So I stopped ignoring it and read the Saving Sammy book, contacted Diana Pohlman and ended up going to Dr K who told us to get that PDD-NOS diagnosis out of our heads becuase its a bunch of garbage. He thinks John is Asperger traits complicated by PANDAS.

We did not have sudden onset that I know of. But now I look back at when John was about 1 and got pink eye and then started this obsession with touching my hair. I have one child so I had nothing to compare it to. He was clingy and never slept good. He had sound sensitivities and delayed speech. He was not very coordinated and appeared weak. There is so much more but what I find really weird is that he came down with a fever when he was four. The fever broke and then he couldnt walk. Same thing happened just this past fall. Fever for two days and then he couldnt walk. ASO Strep titers were 661! He has a groin rash that comes and goes. Its been gone for a few months and now its coming back.

The only thing I cheat with on the diet is soy and that is every once in a while. The diet is such a pain. When will I ever be able to take him off of this?

WOW! Early intervention on your part was fantastic. who is your doctor? We see Dr Usman and now we are in the process of seeing if IVIG with Dr K is in the future which after this week, it is!!! Who did you do IVIG with?

thanks for responding to my post

Ann

 

 

Johnsmom,

We are doing the DAN protocol. We started the GFCFSF diet during an exacerbation (didn't know he had pandas at the time) and there was a definite difference when I removed gluten completely. There was a calming effect. I have to assume that the diet did have an antiinflammatory effect, and I have heard that it does. Additionally, my son tested IgG sensitive to gluten and soy, so by removing these there should be an antiinflammatory effect. By the way, I have been lax about their diet lately (husband out of town for extended time) and sure enough I have noticed non-stop pandas symptoms. I do think that he diet may play a role in the inflammatory side of things.

 

We are doing tons of supplements that are antiinflammatory, but my 5 year old (and my 2 year old) just seem to be getting progressively worse in terms of pandas/inflammation. I don't know if that means that the supps are not working or if they are just progressively becoming more reactive to more antibodies and their pandas disease-state is just getting worse because it has gone uncontrolled for so long. My 5 year old definitley needs some bombs dropped on his pandas (just did our first IVIG 2 weeks ago, not sure if we did high enough dose, though), and my 2 year old as of today had one of the worst sudden-onset pandas I have ever seen with him so I started his steroid burst that I had on the back-burner.

 

Interestingly, my 2 year old is what I consider to be a "recovered" early-onset autistic child (early onset of symtoms and very early DAN intervention with GREAT success) but still has a significant speech delay. Today I gave him the steroid this morning and by this evening at dinner he was spouting off words left and right! I could have cried! I know it may be temporary for now, but I now see how the inflammation is so much a part of his speech problem. Guess I need to suck it up and clean up their diet when daddy gets home. So hard not to put them in the car and head for mcdonalds (cringe).

 

Anyway, we should keep in touch as the kids doing the DAN protocol have such a unique experience treating pandas it seems, at least my kids do. Such a hard time tolerating antibiotics, steroids etc...

 

Stephanie

No I wouldnt say baseline at all. Our son was in a good spot when we started the prednisone and I wasnt sure what further improvment we would see. He hasnt been on antibiotics since November but has had some ups and downs but not long lasting where I needed to get him back on antibiotics. Dr K told us we had to be objective about what we saw during the burst. I could go on for hours about what we have seen, especially in the past few days. Our son has been way more social than normal. he is relaxed, there are no emotional outbursts and no anxiety or indecisiveness (sp) His body and gestures just seem to be relaxed. There is no tension.

Its not perfect. I noticed just a teeny bit of staring at the lights (for about a second) and counting words on his hand. (he counts the words as we talk)

I was told my kid had PDD-NOS and we took it upon ourselves to do all the DAN protocol stuff like diet, supplements, chelation, etc. So I was just wondering if there are others out there that may have benefited from these interventions.

Just curious

thanks Buster

Ann

 

 

Not sure how to comment on your post. Are you saying you were back at baseline when you started the burst? Or that you are substantially better post Pred? Usually the burst is given during an exacerbation.

 

Buster

 

Buster-

[Santi]

Stephanie-

 

My son, who is diagnosed PDD-NOS at 5, now 8 is doing well. We were not in an exacerbation at the time of the burst but still had some minor issues. I asked Dr K : "How will we know if he is in such a good spot now?" He gave us this ananlogy ( I wont go into it) that made sense so we started on April 1st and saw good things on the 3rd and the 5th day and then this past week, days 15 and 16 were unbelievable. No weird body movements or faces, totally relaxed, good speech, no anxiety. A kid who he never plays with came to our door and asked if he wanted to play and he said "Sure" and off they went for about 3 hours. The next day the same kid came over and asked him to play again. (On Fridays all my son wants to do is play video games. He waits all week to do this. He is totally obsessed.) my son went outside and played with this kid again for another 2-3 hours. No video games. It was amazing! My son has huge anxiety when it comes to playing with kids he really doesnt know and this just looked so normal!!!

i think we are started to slip a little on the burst though this weekend. The week as a whole was great!!!

John is gf/cf/sf. We take multiple supplements and have been on and off with antibiotics.

We have had six titer tests run that all came back elevated. We did this becuase of behaviors but the doctor said he didnt have PANDAS cuz his Anti Dnase were not elevated. Then our last appt with that clinic was with a new PAC and he said well he kind of has PANDAS. So I stopped ignoring it and read the Saving Sammy book, contacted Diana Pohlman and ended up going to Dr K who told us to get that PDD-NOS diagnosis out of our heads becuase its a bunch of garbage. He thinks John is Asperger traits complicated by PANDAS.

We did not have sudden onset that I know of. But now I look back at when John was about 1 and got pink eye and then started this obsession with touching my hair. I have one child so I had nothing to compare it to. He was clingy and never slept good. He had sound sensitivities and delayed speech. He was not very coordinated and appeared weak. There is so much more but what I find really weird is that he came down with a fever when he was four. The fever broke and then he couldnt walk. Same thing happened just this past fall. Fever for two days and then he couldnt walk. ASO Strep titers were 661! He has a groin rash that comes and goes. Its been gone for a few months and now its coming back.

The only thing I cheat with on the diet is soy and that is every once in a while. The diet is such a pain. When will I ever be able to take him off of this?

WOW! Early intervention on your part was fantastic. who is your doctor? We see Dr Usman and now we are in the process of seeing if IVIG with Dr K is in the future which after this week, it is!!! Who did you do IVIG with?

thanks for responding to my post

Ann

 

Hi Ann, I am curious about the analogy from Dr. K. How do we know they are better if its not totally obvious? Andrea

 

 

Johnsmom,

We are doing the DAN protocol. We started the GFCFSF diet during an exacerbation (didn't know he had pandas at the time) and there was a definite difference when I removed gluten completely. There was a calming effect. I have to assume that the diet did have an antiinflammatory effect, and I have heard that it does. Additionally, my son tested IgG sensitive to gluten and soy, so by removing these there should be an antiinflammatory effect. By the way, I have been lax about their diet lately (husband out of town for extended time) and sure enough I have noticed non-stop pandas symptoms. I do think that he diet may play a role in the inflammatory side of things.

 

We are doing tons of supplements that are antiinflammatory, but my 5 year old (and my 2 year old) just seem to be getting progressively worse in terms of pandas/inflammation. I don't know if that means that the supps are not working or if they are just progressively becoming more reactive to more antibodies and their pandas disease-state is just getting worse because it has gone uncontrolled for so long. My 5 year old definitley needs some bombs dropped on his pandas (just did our first IVIG 2 weeks ago, not sure if we did high enough dose, though), and my 2 year old as of today had one of the worst sudden-onset pandas I have ever seen with him so I started his steroid burst that I had on the back-burner.

 

Interestingly, my 2 year old is what I consider to be a "recovered" early-onset autistic child (early onset of symtoms and very early DAN intervention with GREAT success) but still has a significant speech delay. Today I gave him the steroid this morning and by this evening at dinner he was spouting off words left and right! I could have cried! I know it may be temporary for now, but I now see how the inflammation is so much a part of his speech problem. Guess I need to suck it up and clean up their diet when daddy gets home. So hard not to put them in the car and head for mcdonalds (cringe).

 

Anyway, we should keep in touch as the kids doing the DAN protocol have such a unique experience treating pandas it seems, at least my kids do. Such a hard time tolerating antibiotics, steroids etc...

 

Stephanie

No I wouldnt say baseline at all. Our son was in a good spot when we started the prednisone and I wasnt sure what further improvment we would see. He hasnt been on antibiotics since November but has had some ups and downs but not long lasting where I needed to get him back on antibiotics. Dr K told us we had to be objective about what we saw during the burst. I could go on for hours about what we have seen, especially in the past few days. Our son has been way more social than normal. he is relaxed, there are no emotional outbursts and no anxiety or indecisiveness (sp) His body and gestures just seem to be relaxed. There is no tension.

Its not perfect. I noticed just a teeny bit of staring at the lights (for about a second) and counting words on his hand. (he counts the words as we talk)

I was told my kid had PDD-NOS and we took it upon ourselves to do all the DAN protocol stuff like diet, supplements, chelation, etc. So I was just wondering if there are others out there that may have benefited from these interventions.

Just curious

thanks Buster

Ann

 

 

Not sure how to comment on your post. Are you saying you were back at baseline when you started the burst? Or that you are substantially better post Pred? Usually the burst is given during an exacerbation.

 

Buster

 

Buster-

[Johnsmom]

Hi Santi-

 

I asked Dr K, If John is in a good spot now how will we see any improvements? He told us a story about a trip he took to Africa. He was sitting in a cafe in some town and everyone around him was so ugly. These were the ugliest people I have ever seen, I felt like I was in a quazi moto experience, he said. Then I went back to Johannisburg and everyone was good looking again..

My husband and I just looked at each other and said, Okaaaaay.

 

I do understand what he meant though. Do you get it?

 

When I say my son was in a good spot, I mean he wasnt obsessing about Mario Bros video game as much and wasnt staring at the lights as much and didnt appear to be as spacey as he usually is. When Dr K observed him he had John in quite a tizzy. He got into his face right away and started asking him if he played with barbie dolls and asked John if he was a girl. John stiffened up and didnt say a word. He could not answer the questions.

After about 10 minutes of this he told us that John appeared to be like a puppet. Its almost as if his body is trying to catch up to his speech.

Theres more I could tell you about but in the end he said lets just try the steroid burst and see what happens.

 

On the burst we had some AWESOME days with good speech, good eye contact, INCREDIBLE social behaviors, awareness and his body just appeared to be relaxed.

 

 

 

 

i think things may be winding down now though. He was very spacey and lethargic today. I wish it would last longer!

 

Ann

 

 

 

 

Stephanie-

 

My son, who is diagnosed PDD-NOS at 5, now 8 is doing well. We were not in an exacerbation at the time of the burst but still had some minor issues. I asked Dr K : "How will we know if he is in such a good spot now?" He gave us this ananlogy ( I wont go into it) that made sense so we started on April 1st and saw good things on the 3rd and the 5th day and then this past week, days 15 and 16 were unbelievable. No weird body movements or faces, totally relaxed, good speech, no anxiety. A kid who he never plays with came to our door and asked if he wanted to play and he said "Sure" and off they went for about 3 hours. The next day the same kid came over and asked him to play again. (On Fridays all my son wants to do is play video games. He waits all week to do this. He is totally obsessed.) my son went outside and played with this kid again for another 2-3 hours. No video games. It was amazing! My son has huge anxiety when it comes to playing with kids he really doesnt know and this just looked so normal!!!

i think we are started to slip a little on the burst though this weekend. The week as a whole was great!!!

John is gf/cf/sf. We take multiple supplements and have been on and off with antibiotics.

We have had six titer tests run that all came back elevated. We did this becuase of behaviors but the doctor said he didnt have PANDAS cuz his Anti Dnase were not elevated. Then our last appt with that clinic was with a new PAC and he said well he kind of has PANDAS. So I stopped ignoring it and read the Saving Sammy book, contacted Diana Pohlman and ended up going to Dr K who told us to get that PDD-NOS diagnosis out of our heads becuase its a bunch of garbage. He thinks John is Asperger traits complicated by PANDAS.

We did not have sudden onset that I know of. But now I look back at when John was about 1 and got pink eye and then started this obsession with touching my hair. I have one child so I had nothing to compare it to. He was clingy and never slept good. He had sound sensitivities and delayed speech. He was not very coordinated and appeared weak. There is so much more but what I find really weird is that he came down with a fever when he was four. The fever broke and then he couldnt walk. Same thing happened just this past fall. Fever for two days and then he couldnt walk. ASO Strep titers were 661! He has a groin rash that comes and goes. Its been gone for a few months and now its coming back.

The only thing I cheat with on the diet is soy and that is every once in a while. The diet is such a pain. When will I ever be able to take him off of this?

WOW! Early intervention on your part was fantastic. who is your doctor? We see Dr Usman and now we are in the process of seeing if IVIG with Dr K is in the future which after this week, it is!!! Who did you do IVIG with?

thanks for responding to my post

Ann

 

Hi Ann, I am curious about the analogy from Dr. K. How do we know they are better if its not totally obvious? Andrea

 

 

Johnsmom,

We are doing the DAN protocol. We started the GFCFSF diet during an exacerbation (didn't know he had pandas at the time) and there was a definite difference when I removed gluten completely. There was a calming effect. I have to assume that the diet did have an antiinflammatory effect, and I have heard that it does. Additionally, my son tested IgG sensitive to gluten and soy, so by removing these there should be an antiinflammatory effect. By the way, I have been lax about their diet lately (husband out of town for extended time) and sure enough I have noticed non-stop pandas symptoms. I do think that he diet may play a role in the inflammatory side of things.

 

We are doing tons of supplements that are antiinflammatory, but my 5 year old (and my 2 year old) just seem to be getting progressively worse in terms of pandas/inflammation. I don't know if that means that the supps are not working or if they are just progressively becoming more reactive to more antibodies and their pandas disease-state is just getting worse because it has gone uncontrolled for so long. My 5 year old definitley needs some bombs dropped on his pandas (just did our first IVIG 2 weeks ago, not sure if we did high enough dose, though), and my 2 year old as of today had one of the worst sudden-onset pandas I have ever seen with him so I started his steroid burst that I had on the back-burner.

 

Interestingly, my 2 year old is what I consider to be a "recovered" early-onset autistic child (early onset of symtoms and very early DAN intervention with GREAT success) but still has a significant speech delay. Today I gave him the steroid this morning and by this evening at dinner he was spouting off words left and right! I could have cried! I know it may be temporary for now, but I now see how the inflammation is so much a part of his speech problem. Guess I need to suck it up and clean up their diet when daddy gets home. So hard not to put them in the car and head for mcdonalds (cringe).

 

Anyway, we should keep in touch as the kids doing the DAN protocol have such a unique experience treating pandas it seems, at least my kids do. Such a hard time tolerating antibiotics, steroids etc...

 

Stephanie

No I wouldnt say baseline at all. Our son was in a good spot when we started the prednisone and I wasnt sure what further improvment we would see. He hasnt been on antibiotics since November but has had some ups and downs but not long lasting where I needed to get him back on antibiotics. Dr K told us we had to be objective about what we saw during the burst. I could go on for hours about what we have seen, especially in the past few days. Our son has been way more social than normal. he is relaxed, there are no emotional outbursts and no anxiety or indecisiveness (sp) His body and gestures just seem to be relaxed. There is no tension.

Its not perfect. I noticed just a teeny bit of staring at the lights (for about a second) and counting words on his hand. (he counts the words as we talk)

I was told my kid had PDD-NOS and we took it upon ourselves to do all the DAN protocol stuff like diet, supplements, chelation, etc. So I was just wondering if there are others out there that may have benefited from these interventions.

Just curious

thanks Buster

Ann

 

 

Not sure how to comment on your post. Are you saying you were back at baseline when you started the burst? Or that you are substantially better post Pred? Usually the burst is given during an exacerbation.

 

Buster

 

Buster-