Update on my son

[Ellen]

I have not posted an update on my DS 15 in a very long time. I had been waiting for things to get better in the hopes that there would be something positive to share. But this has not happened, and I feel it's time to share what we have been going through over the past year and a half.

 

My son developed PANDAS after a strep at age 10 and things got much worse after he had vaccines several months later. He was hospitalized seven times when he was in the sixth grade until things slowly improved after numerous interventions and he went three years (until May of this year) without being hospitalized.

 

Between 6th and 8th grade, he got to a point where he was about 80-90 percent recovered. I believe many things contributed to this including antibiotics, a gfcf diet and numerous supplements, two rounds of plasmapheresis, three rounds of high dose IVIG (only the first one seemed to help him), and neurofeedback. Although he required many accommodations in school, he graduated 8th grade with very good grades and the Rotary Club award for extraordinary progress, and we really thought he was on his way to a full recovery.

 

Then he had a setback in the summer after 8th grade, triggered by an arm fracture that happened while he was in overnight camp, and things began to go downhill. We tried doing lyme treatment for a second time (we had tried it once before when he was in sixth grade), but things continued to get worse, and during his 9th grade year, he became more and more impaired until he was unable to do school work, engage in productive activities or function in a normal way. Beginning in April of this year, his OCD took a back seat to new and much more disturbing symptoms, major debilitating delusions and paranoia. I am not sure what caused the onset of the psychosis, but one of his doctors feels that a growth spurt and puberty, may have played a big role, and I am in agreement with this theory.

 

Since April we have tried just about everything there is to try to fight this (including Bicillin shots, changes in antibiotics and supplements, another high dose IVIG in July, high dose antipsychotics, and homeopathy). But no matter what we did, he continued to get worse, and two months ago his delusions took over to the point where he could no longer keep himself safe and we had to hospitalize him again.

 

He has been in the hospital since late October, and a couple of different antipsychotics were tried without much success. He is now beginning to respond to Clozaril, a last resort antipscyotic, which is often used for treatment resistant schizophrenics. So far the improvements are very very small, just baby steps, but we are hoping that at some point, it will reduce the delusions and get him to a point where he can function in a more normal way.

 

For now we are taking a break from PANDAS treatments ( I feel like we have done all there is to do and tried all there is to try but nothing that has worked for him in the past seems to work in the present). Hopefully, at some point, when he is ready to come back home again, we can try something new. I am not sure if this is PANDAS mimicking schizophrenia or if he now has actual schizophrenia that began as PANDAS, but regardless of the cause, we are forced to rely on psychiatric medications since nothing else seems to help. If anyone knows of similar stories, of kids who started out with OCD as the prominent PANDAS symptom, and are now dealing with full-blown delusions/hallucinations/paranoia I would like to hear more. I am trying to figure out what may have caused this, how he got to this point where nothing we try seems to help, and what interventions to consider for the future.

 

This has been a devastating year and a difficult holiday season for our family. But I am trying my best to remain positive and hopeful and keep thinking there is something that we haven't tried that will help in a big way and get him back to the high functioning, creative, funny, and happy kid he used to be. I know that boy is still there, wanting to come out and hoping somebody will have some advice that will help us get him back. Hope you will keep my son in your thoughts and prayers.

 

Ellen

[philamom]

Ellen- I'm so sorry for all his suffering - I will continue to pray for him and your family. Please remain hopeful! You are in my thoughts, as always!! Melinda

[LNN]

Oh how heart breaking! I had so hoped things had turned around.

You and your family remain in my thoughts and prayers.

[momofgirls]

Oh Ellen, I am so sorry to hear what you guys are going through. I can't imagine how you are coping but hope you find answers for your son.

I want to share a story of a teenage boy I lived next door to in Connecticut. He was diagnosed with schizophrenia at age 10 or 11 I think and was hospitalized several times. Ultimately he was diagnosed with Lyme, bartonella, babesia, mycoplasma, and more. He has been undergoing treatment for his infections for over a year now ( he is now 15 I think). I no longer live in Connecticut but I continue to speak with his mother and gets updates on his progress. She tells me he has made real good gains throughout treatment although he still has a long way to go. He is in a much better place now than he was 2 years ago. His journey not unlike your sons has been heartbreaking and rough but iI know his mother still has hope for his future as she has seen him improve slowly with time This is so hard and I would not presume to have the answers you need but hope that one day you will be able to post a positive update. I wish you guys all the best.

Kim

[MomWithOCDSon]

Ellen --

 

I'm sorry I don't have any useful experiences to offer, but I did want to send you cyber-hugs and say that you and your family will be in my thoughts in the days and weeks to come.

 

I'm sorry for all the struggles and hardships; I can only imagine how tough it is. It certainly puts things into perspective for me, though, and probably for many others as well. Sometimes we get so hung up on the "little" things and lose sight of the bigger picture, and then a story like your son's comes along; it makes me realize that, even in PANDAS, there is such a thing as "sweating the small stuff," and there are others out there with perhaps greater needs and greater frustrations and greater sadnesses than our own.

 

Try to keep the faith. And may 2012 bring you better news!

 

 

Nancy

[smartyjones]

ellen -- i send a PM and wish you and your son healing.

 

interesting find -- http://www.hopkinschildrens.org/Infectious-Findings-for-Schizophrenia.aspx

 

anyone know of this guy and his involvemnt, if any, with the infamous 'white paper'? Robert H. Yolken, M.D. -- of course -- johns hopkins! sorry, yes -- i'm jaded but he sounds interesting.

 

 

[bigmighty]

Ellen, I cannot even begin to tell you how sorry I am about your son's illness. I hope that the very small amount of improvement you have seen, of late, is the beginning of the climb back to health. Sending hugs today and hoping you are able to get through this very difficult time. Best, Suzanne

[PowPow]

Hi Ellen, I do not think I have read your posts before-- as I have been on here (under a different name) for only about 2 years. I am going to PM you.

 

I do not have advice, only commiseration. So- if you do not want that-- you can ignore it

 

We are in a very similar situation, with schizophrenic symptoms & lots of pandas & lyme treatments.

We started out with OCD only- super severe, overnight onset- that spiraled to so much more. It has been almost 3 1/2 years.

[LaurenK]

I think too it's important to realize that Lyme & Bart will not cause schizophrenia like symptoms in everyone. My son has Lyme Bart and PANDAS but does not have these problems. Genetics must be involved to some extent??? Should I expect my son to develop this??

[LaurenK]

PowPow, did you do multiple high dose IVIG with your son after his PANDAS diagnosis?

[tpotter]

ellen -- i send a PM and wish you and your son healing.

 

interesting find -- http://www.hopkinschildrens.org/Infectious-Findings-for-Schizophrenia.aspx

 

anyone know of this guy and his involvemnt, if any, with the infamous 'white paper'? Robert H. Yolken, M.D. -- of course -- johns hopkins! sorry, yes -- i'm jaded but he sounds interesting.

 

 

Very interesting article. I was also going to mention that it was brought up at the post-infectious conference in TX in October that schizophrenia may be triggered by virus. So, this corresponds with what they were saying.

Edited December 25, 2011 by tpotter

[LaurenK]

I'm very sorry, but I am very curious about genetics. For those who experience schizophrenic like symptoms does anyone in your family suffer from schizophrenia? Any family history?

[kimballot]

Ellen -

 

I am so very sorry to hear this - but I do thank you so for posting.

 

You have been such a strong advocate for your son and such a wonderful source of comfort for all of us. Please know that we are all with you and I hope your post will lead to some answers for you.

[lfran]

I sent you a PM.

I have not posted an update on my DS 15 in a very long time. I had been waiting for things to get better in the hopes that there would be something positive to share. But this has not happened, and I feel it's time to share what we have been going through over the past year and a half.

 

My son developed PANDAS after a strep at age 10 and things got much worse after he had vaccines several months later. He was hospitalized seven times when he was in the sixth grade until things slowly improved after numerous interventions and he went three years (until May of this year) without being hospitalized.

 

Between 6th and 8th grade, he got to a point where he was about 80-90 percent recovered. I believe many things contributed to this including antibiotics, a gfcf diet and numerous supplements, two rounds of plasmapheresis, three rounds of high dose IVIG (only the first one seemed to help him), and neurofeedback. Although he required many accommodations in school, he graduated 8th grade with very good grades and the Rotary Club award for extraordinary progress, and we really thought he was on his way to a full recovery.

 

Then he had a setback in the summer after 8th grade, triggered by an arm fracture that happened while he was in overnight camp, and things began to go downhill. We tried doing lyme treatment for a second time (we had tried it once before when he was in sixth grade), but things continued to get worse, and during his 9th grade year, he became more and more impaired until he was unable to do school work, engage in productive activities or function in a normal way. Beginning in April of this year, his OCD took a back seat to new and much more disturbing symptoms, major debilitating delusions and paranoia. I am not sure what caused the onset of the psychosis, but one of his doctors feels that a growth spurt and puberty, may have played a big role, and I am in agreement with this theory.

 

Since April we have tried just about everything there is to try to fight this (including Bicillin shots, changes in antibiotics and supplements, another high dose IVIG in July, high dose antipsychotics, and homeopathy). But no matter what we did, he continued to get worse, and two months ago his delusions took over to the point where he could no longer keep himself safe and we had to hospitalize him again.

 

He has been in the hospital since late October, and a couple of different antipsychotics were tried without much success. He is now beginning to respond to Clozaril, a last resort antipscyotic, which is often used for treatment resistant schizophrenics. So far the improvements are very very small, just baby steps, but we are hoping that at some point, it will reduce the delusions and get him to a point where he can function in a more normal way.

 

For now we are taking a break from PANDAS treatments ( I feel like we have done all there is to do and tried all there is to try but nothing that has worked for him in the past seems to work in the present). Hopefully, at some point, when he is ready to come back home again, we can try something new. I am not sure if this is PANDAS mimicking schizophrenia or if he now has actual schizophrenia that began as PANDAS, but regardless of the cause, we are forced to rely on psychiatric medications since nothing else seems to help. If anyone knows of similar stories, of kids who started out with OCD as the prominent PANDAS symptom, and are now dealing with full-blown delusions/hallucinations/paranoia I would like to hear more. I am trying to figure out what may have caused this, how he got to this point where nothing we try seems to help, and what interventions to consider for the future.

 

This has been a devastating year and a difficult holiday season for our family. But I am trying my best to remain positive and hopeful and keep thinking there is something that we haven't tried that will help in a big way and get him back to the high functioning, creative, funny, and happy kid he used to be. I know that boy is still there, wanting to come out and hoping somebody will have some advice that will help us get him back. Hope you will keep my son in your thoughts and prayers.

 

Ellen

[lfran]

Again, I am so sorry to hear what you are going through.

 

Here is a link to a psychiatrist in Burbank, CA who treats PANDAS non-psychotropically (and also without antibiotics). If I understand it correctly, she feels as a psychiatrist that many psychiatric issues are related to food and metabolic issues. She has an e-book that may be of help. If nothing else is working, perhaps there is something in her work that may be of help.

 

http://www.psychiatryburbankca.com/

 

 

I sent you a PM.

I have not posted an update on my DS 15 in a very long time. I had been waiting for things to get better in the hopes that there would be something positive to share. But this has not happened, and I feel it's time to share what we have been going through over the past year and a half.

 

My son developed PANDAS after a strep at age 10 and things got much worse after he had vaccines several months later. He was hospitalized seven times when he was in the sixth grade until things slowly improved after numerous interventions and he went three years (until May of this year) without being hospitalized.

 

Between 6th and 8th grade, he got to a point where he was about 80-90 percent recovered. I believe many things contributed to this including antibiotics, a gfcf diet and numerous supplements, two rounds of plasmapheresis, three rounds of high dose IVIG (only the first one seemed to help him), and neurofeedback. Although he required many accommodations in school, he graduated 8th grade with very good grades and the Rotary Club award for extraordinary progress, and we really thought he was on his way to a full recovery.

 

Then he had a setback in the summer after 8th grade, triggered by an arm fracture that happened while he was in overnight camp, and things began to go downhill. We tried doing lyme treatment for a second time (we had tried it once before when he was in sixth grade), but things continued to get worse, and during his 9th grade year, he became more and more impaired until he was unable to do school work, engage in productive activities or function in a normal way. Beginning in April of this year, his OCD took a back seat to new and much more disturbing symptoms, major debilitating delusions and paranoia. I am not sure what caused the onset of the psychosis, but one of his doctors feels that a growth spurt and puberty, may have played a big role, and I am in agreement with this theory.

 

Since April we have tried just about everything there is to try to fight this (including Bicillin shots, changes in antibiotics and supplements, another high dose IVIG in July, high dose antipsychotics, and homeopathy). But no matter what we did, he continued to get worse, and two months ago his delusions took over to the point where he could no longer keep himself safe and we had to hospitalize him again.

 

He has been in the hospital since late October, and a couple of different antipsychotics were tried without much success. He is now beginning to respond to Clozaril, a last resort antipscyotic, which is often used for treatment resistant schizophrenics. So far the improvements are very very small, just baby steps, but we are hoping that at some point, it will reduce the delusions and get him to a point where he can function in a more normal way.

 

For now we are taking a break from PANDAS treatments ( I feel like we have done all there is to do and tried all there is to try but nothing that has worked for him in the past seems to work in the present). Hopefully, at some point, when he is ready to come back home again, we can try something new. I am not sure if this is PANDAS mimicking schizophrenia or if he now has actual schizophrenia that began as PANDAS, but regardless of the cause, we are forced to rely on psychiatric medications since nothing else seems to help. If anyone knows of similar stories, of kids who started out with OCD as the prominent PANDAS symptom, and are now dealing with full-blown delusions/hallucinations/paranoia I would like to hear more. I am trying to figure out what may have caused this, how he got to this point where nothing we try seems to help, and what interventions to consider for the future.

 

This has been a devastating year and a difficult holiday season for our family. But I am trying my best to remain positive and hopeful and keep thinking there is something that we haven't tried that will help in a big way and get him back to the high functioning, creative, funny, and happy kid he used to be. I know that boy is still there, wanting to come out and hoping somebody will have some advice that will help us get him back. Hope you will keep my son in your thoughts and prayers.

 

Ellen