NEW to Forum about to start treatment

[Kathy4Him]

My 23 yr old son has had PANDAS/PANS for 4 1/2 yrs. Finally we have Dr who is going to treat. He has high ANA titers, high atypical PANCA has inflammation in liver. In beginning Drs wanted to treat with SSRIs none of them have worked only made him worse. This Dr. is going to give him high dose IVIG (Gammunex) and steroids, immunosuppressants and high dose zithromax for 90 days. he is allergic to penicillin augmenten and keflex. Can anyone tell me what to watch for after IVIG and any advice on how to minimize side effects? Also has anyone else does this combination of treatment? Dr. says he wants to use everything he can to get rid of this? thanks!!Kathy

This was my first post so I am still learning. So grateful for responses. I wanted to add a few things. My son, Austin was healthy and never had any psychiatric problems until June 2008. Prior to this he was a straight A student, # 10 ranked 18 yr old USTA tennis player in our state, and keyboard player for our church, going to college on a full scholarship. He developed stomach problems in October 2007 and we took him to his PCP 3-4 times and dr kept telling us it was senior stress. Finally in March 2008 he was diagnosed with H Pylori and treated for 30 days. It was about 6 weeks later when he developed severe OCD almost overnight accompanied by severely restricted eating. We had NO clue what had happened to him. The same PCP told us he had ocd. When I asked how did that just happen, he just said it does. So for months he was treated with high doses of zoloft and luvox and several other drugs which only made him worse. None helped with the ocd. Finally a friend of mine saw a show on mystery diagnosis about pandas and called me. When I began researching it the symptoms matched my sons perfectly except the age. We have struggled to find someone to help until now. Austin has had 2 liver biopsies which show mild inflammation and dialated sinusiods. He has had a heart cath, numerous scans and unltrasounds, 2 brain mri's which have revealed 2 arachnoid cysts the Dr thinks are secondary resulting from infection. He has had so many blood tests. He also had a spinal tap done. And yes it is so hard. He went from a thriving young man to one who stands in the same place all day, wears the same shirt, will eat only 5 foods and doesn't speak at all except a few words here and there.

The Dr. who is going to treat has consulted with his other drs. We have a team of great Drs: neurologist, rheumatologist, hepatologist, gastroenterologist, and oncologist/hematologist. While not all believe in Pandas, they all believe this is autoimmune related. The Rheumatologist has treated other autoimmune patients with this same type of regimen so we are hopeful it will work.

 

One thing I did not say is that when my son was young: 4-5 he had 9 strep throats in 9 mths. He was allergic to penicillin and augmentin and as soon as here was strep free tonsils and adnoids came out. He has continued over the yrs to have strep and sinus infections. Was also diagnosed with JDMS juvenile dermatomyositis at age 9. Although all symptons went away after a few months that is an autoimmune illness. And yes as I remember when he was young and going thru strep had not so much any ocd but do remember a bit of anxiety.

Edited October 28, 2012 by Kathy N

[mama2alex]

Kathy,

 

I'm so sorry you and your family are going through this. It sounds like you've been pushing for answers for a long time and it sounds like you have a doctor who really cares, so that's great. What I did notice is that your son's PANDAS symptoms came on at age 19, which isn't typical. Its most often age 5 or 6, or 8 or 9, though it can definitely happen at other ages. I'm not saying it couldn't be PANDAS, just that that stood out and might indicate exploring other issues in addition to PANDAS. Also, it seems like your doctor is throwing everything at it all at once. Did he check for current infections such as strep, mycoplasma, Lyme/coinfections, and staph? Did he check for an immune deficiency? If your son has current ongoing infections, steroids will suppress his immune system and allow the infections to multiply, making things worse. If he doesn't have current infections, why start antibiotics right away? And why high dose? Why not wait until after trying the other interventions and then do prophylactic antibiotics. Also, does he feel high dose antibiotics are safe right now, given the liver inflammation?

 

I'm sorry to question, and of course I'm just basing my opinion and questions on my own experience, but I didn't want to stay silent. This super aggressive approach isn't something I've seen done by the best PANDAS and Lyme doctors who treat these kids.

 

Hopefully, others will chime in too.

 

My 23 yr old son has had PANDAS/PANS for 4 1/2 yrs. Finally we have Dr who is going to treat. He has high ANA titers, high atypical PANCA has inflammation in liver. In beginning Drs wanted to treat with SSRIs none of them have worked only made him worse. This Dr. is going to give him high dose IVIG (Gammunex) and steroids, immunosuppressants and high dose zithromax for 90 days. he is allergic to penicillin augmenten and keflex. Can anyone tell me what to watch for after IVIG and any advice on how to minimize side effects? Also has anyone else does this combination of treatment? Dr. says he wants to use everything he can to get rid of this? thanks!!Kathy

[dcmom]

Hi Kathy-

 

I am going to contradict mama2alex a little bit- just to give you another point of view.

 

I have two kids, both contracted pandas at the same time- one was 5 1/2, the other 8 1/2. The older one had strep two years prior- with no incident. I do think that PANDAS can hit at any time, including adulthood. The reality is that the "pediatric" portion of pandas was imposed on the diagnoses for research purposes, and not because it was ever looked into that older kids, or adults, could get this disorder. I think in many ways it is easier to really SEE the pandas in someone older. Gosh, at 19 your son's personality was set, you KNEW him, and I am guessing from your post that things changed fairly dramatically. It was VERY easy for us to see the change in both of our girls, but we missed subtle changes in our little one (mostly academic, reading, separation anxiety)- while the older one, we KNEW everything that was different and that it was NOT a stage of development.

 

If I saw this type of change in anyone, young or old, I would want to look at pandas. The treatment of pandas is RELATIVELY benign in comparison to the NOT treatment of pandas.

 

We decided at the onset of this disorder that we would treat aggressively. Watching both of my kids lose themselves, I mean lose the joy in being a child, and losing some of their best qualities, overnight was horrible. We decided we would take whatever measures we could to make sure they had the best shot at a normal life.

 

Both of my kids had plasma pheresis, did two years of daily zithromax, have done IV steroids twice, and have done oral steroid bursts several times, over the last 3.5 years. We try our hardest to treat quickly and aggressively. So far, it is working. They are happy and healthy. The go to school, do well academically and socially, and have VERY little or no ocd or anxiety MOST of the time. When they get sick (a cold, fever, etc), they flare up, we treat them, and they get better.

 

I have ALWAYS wondered why we cannot use immunosuppressive drugs. It would certainly make sense.

 

My kids have been through TONS of testing, and everything (except the cunningham test) is typically negative.

 

I would suggest (and imagine your doc has done) a reasonable battery of tests to rule out things. However, if your son had an almost overnight change- that really points toward pandas. I do think that a methodical approach to using the interventions is a good idea- at some point you need to figure out what works the best, and is the most benign. Hopefully your doc could figure this out- IMHO I would start with a month of zithromax, then I might proceed to a month of steroids, then if needed, I would proceed to the IVIG, and possible a month later proceed to the immunosuppressants. HOWEVER-if life is unbearable right now- I say throw everything at it, and figure it out later. It is a lot easier to deal with pandas in a little child, than an adult.

 

I feel for you- must be very hard to have a young adult suffering with this disorder. There are others- your son is not the only one. Hang in there- things will get better.

[Fixit]

Kathy,

 

I'm so sorry you and your family are going through this. It sounds like you've been pushing for answers for a long time and it sounds like you have a doctor who really cares, so that's great. What I did notice is that your son's PANDAS symptoms came on at age 19, which isn't typical. Its most often age 5 or 6, or 8 or 9, though it can definitely happen at other ages. I'm not saying it couldn't be PANDAS, just that that stood out and might indicate exploring other issues in addition to PANDAS. Also, it seems like your doctor is throwing everything at it all at once. Did he check for current infections such as strep, mycoplasma, Lyme/coinfections, and staph? Did he check for an immune deficiency? If your son has current ongoing infections, steroids will suppress his immune system and allow the infections to multiply, making things worse. If he doesn't have current infections, why start antibiotics right away? And why high dose? Why not wait until after trying the other interventions and then do prophylactic antibiotics. Also, does he feel high dose antibiotics are safe right now, given the liver inflammation?

 

I'm sorry to question, and of course I'm just basing my opinion and questions on my own experience, but I didn't want to stay silent. This super aggressive approach isn't something I've seen done by the best PANDAS and Lyme doctors who treat these kids.

 

Hopefully, others will chime in too.

 

My 23 yr old son has had PANDAS/PANS for 4 1/2 yrs. Finally we have Dr who is going to treat. He has high ANA titers, high atypical PANCA has inflammation in liver. In beginning Drs wanted to treat with SSRIs none of them have worked only made him worse. This Dr. is going to give him high dose IVIG (Gammunex) and steroids, immunosuppressants and high dose zithromax for 90 days. he is allergic to penicillin augmenten and keflex. Can anyone tell me what to watch for after IVIG and any advice on how to minimize side effects? Also has anyone else does this combination of treatment? Dr. says he wants to use everything he can to get rid of this? thanks!!Kathy

 

Not really relevant...

I would just drop the P and call it ANDAS/ANds/itands....what have you.

i just wonder if there was this suscepptiblity that was never triggered.

or if the perfect storm just created the susceptiblity and then the trigger was pulled.

i wonder if the gereneral population continues with bad diets/mutiple vacines/polution..how much more of this we will see.

 

Not sure how true this story is, but some connection is being made that people(adults) are coming down with tics(ts) because of the meter readers that are being installed for remote reads. Especilly if they are by the bedroome.

THe things that utility companies are installing...again idk.

 

But i agree with mama.

Unless there are details that are missing, as i am sure you are in a panic.

Did they try abx for at least a month to see if there was any change?

It might be good that you are able to line up ivig quickly as he is a young adult...nip it in the bud.(i have not pulled the ivig trigger for ds12)

But i would think giving the abx a little time might be in order before ivig.

not sure if you have been around this board much..i am not a doc...just thinking out loud.

 

May this be a quick journey for you and your family!!!

Edited October 27, 2012 by Fixit

[Kathy4Him]

Kathy,

 

I'm so sorry you and your family are going through this. It sounds like you've been pushing for answers for a long time and it sounds like you have a doctor who really cares, so that's great. What I did notice is that your son's PANDAS symptoms came on at age 19, which isn't typical. Its most often age 5 or 6, or 8 or 9, though it can definitely happen at other ages. I'm not saying it couldn't be PANDAS, just that that stood out and might indicate exploring other issues in addition to PANDAS. Also, it seems like your doctor is throwing everything at it all at once. Did he check for current infections such as strep, mycoplasma, Lyme/coinfections, and staph? Did he check for an immune deficiency? If your son has current ongoing infections, steroids will suppress his immune system and allow the infections to multiply, making things worse. If he doesn't have current infections, why start antibiotics right away? And why high dose? Why not wait until after trying the other interventions and then do prophylactic antibiotics. Also, does he feel high dose antibiotics are safe right now, given the liver inflammation?

 

I'm sorry to question, and of course I'm just basing my opinion and questions on my own experience, but I didn't want to stay silent. This super aggressive approach isn't something I've seen done by the best PANDAS and Lyme doctors who treat these kids.

 

Hopefully, others will chime in too.

 

My 23 yr old son has had PANDAS/PANS for 4 1/2 yrs. Finally we have Dr who is going to treat. He has high ANA titers, high atypical PANCA has inflammation in liver. In beginning Drs wanted to treat with SSRIs none of them have worked only made him worse. This Dr. is going to give him high dose IVIG (Gammunex) and steroids, immunosuppressants and high dose zithromax for 90 days. he is allergic to penicillin augmenten and keflex. Can anyone tell me what to watch for after IVIG and any advice on how to minimize side effects? Also has anyone else does this combination of treatment? Dr. says he wants to use everything he can to get rid of this? thanks!!Kathy

 

Not really relevant...

I would just drop the P and call it ANDAS/ANds/itands....what have you.

i just wonder if there was this suscepptiblity that was never triggered.

or if the perfect storm just created the susceptiblity and then the trigger was pulled.

i wonder if the gereneral population continues with bad diets/mutiple vacines/polution..how much more of this we will see.

 

Not sure how true this story is, but some connection is being made that people(adults) are coming down with tics(ts) because of the meter readers that are being installed for remote reads. Especilly if they are by the bedroome.

THe things that utility companies are installing...again idk.

 

But i agree with mama.

Unless there are details that are missing, as i am sure you are in a panic.

Did they try abx for at least a month to see if there was any change?

It might be good that you are able to line up ivig quickly as he is a young adult...nip it in the bud.(i have not pulled the ivig trigger for ds12)

But i would think giving the abx a little time might be in order before ivig.

not sure if you have been around this board much..i am not a doc...just thinking out loud.

 

May this be a quick journey for you and your family!!!

[kos_mom]

Strictly speaking pediatric encompasses both children and adolescents. I think including adolescents was part of the CANS vs PANS (childhood vs. pediatric) dispute. Dr. K notes that adolescent onset may look different; it is more insidious than the childhood version. At the same time he states that onset after age 8, and particularly after age 10, is likely not really the case--the individual likely had an earlier episode that was unrecognized. (My DS had at least two episodes with just one symptom prior to a third exacerbation that was in the classic mode of him coming home one day from school a totally different person. Dr. K also includes adults in this category as well--here is his description:

 

"We have indentified a small group of patients with what appears to be an adolescent-adult "variant" of PANDAS. Hallmark symptoms in these patients include an unrelenting, debilitating anxiety, chronic fatigue, and an eating disorder. All patients in this group have exhibited a chronic non-specific gastrointestinal symptoms and have elevated AntiDnase B titer.

Symptoms usually start in high school (freshman or sophomore year).

 

Initial symptom (present at one time in almost every patient): chronic, not fully explained and/or diagnosed GI ("stomach") complaint (common diagnosis attached to the complaint: GE reflux). Non-specific epigastric or abdominal pains, "heart burn", "fullness" following a meal, occasional morning nausea and/or vomiting are common. Few patients report loose stools but no clinical picture of diarrhea has been elicited. GI symptoms may disappear at the onset of psychiatric symptoms, or they may continue but with decreased intensity or remain unchanged.

 

Insidious development of an overwhelming anxiety. Anxiety usually developes over relatively short period of time (matters of days or weeks). Patients report waking up in the morning with a feeling of an overwhelming (unexplainable) anxiety that may persist throughout the day and can wane slowly towards the evening. An appropriate literary description of these symptoms can be found in Goethe's "Sorrows of (young) Werter". There has been no discernable connection established between a documented (or distinctly recalled) infectious event and the actual onset of anxiety episodes. There is no "wax-and-wane" pattern of symptoms, however patients appear to be much more comfortable (and thus feels better) in socially non-challenging situations and at home. There is a tendency toward avoidance of going out (of the house), avoiding friends and skipping previously favored activities. Patients are unable to establish appropriate peer and/or boyfriend-girlfriend relationships. Eventually they may stop going to school (or to classes, if college students), curtail or seize completely their social activities and become home bound.

 

Intrusive thoughts are present in most patients.

 

Severe and persistent sleep disturbances.

 

Behavioral regression(s).

 

Insecurity and separation anxiety (adolescent type).

 

Chronic fatigue commonly present.

 

Following several years of symptoms, presence of clinical depression is common!"

[Kathy4Him]

Hi Kathy-

 

I am going to contradict mama2alex a little bit- just to give you another point of view.

 

I have two kids, both contracted pandas at the same time- one was 5 1/2, the other 8 1/2. The older one had strep two years prior- with no incident. I do think that PANDAS can hit at any time, including adulthood. The reality is that the "pediatric" portion of pandas was imposed on the diagnoses for research purposes, and not because it was ever looked into that older kids, or adults, could get this disorder. I think in many ways it is easier to really SEE the pandas in someone older. Gosh, at 19 your son's personality was set, you KNEW him, and I am guessing from your post that things changed fairly dramatically. It was VERY easy for us to see the change in both of our girls, but we missed subtle changes in our little one (mostly academic, reading, separation anxiety)- while the older one, we KNEW everything that was different and that it was NOT a stage of development.

 

If I saw this type of change in anyone, young or old, I would want to look at pandas. The treatment of pandas is RELATIVELY benign in comparison to the NOT treatment of pandas.

 

We decided at the onset of this disorder that we would treat aggressively. Watching both of my kids lose themselves, I mean lose the joy in being a child, and losing some of their best qualities, overnight was horrible. We decided we would take whatever measures we could to make sure they had the best shot at a normal life.

 

Both of my kids had plasma pheresis, did two years of daily zithromax, have done IV steroids twice, and have done oral steroid bursts several times, over the last 3.5 years. We try our hardest to treat quickly and aggressively. So far, it is working. They are happy and healthy. The go to school, do well academically and socially, and have VERY little or no ocd or anxiety MOST of the time. When they get sick (a cold, fever, etc), they flare up, we treat them, and they get better.

 

I have ALWAYS wondered why we cannot use immunosuppressive drugs. It would certainly make sense.

 

My kids have been through TONS of testing, and everything (except the cunningham test) is typically negative.

 

I would suggest (and imagine your doc has done) a reasonable battery of tests to rule out things. However, if your son had an almost overnight change- that really points toward pandas. I do think that a methodical approach to using the interventions is a good idea- at some point you need to figure out what works the best, and is the most benign. Hopefully your doc could figure this out- IMHO I would start with a month of zithromax, then I might proceed to a month of steroids, then if needed, I would proceed to the IVIG, and possible a month later proceed to the immunosuppressants. HOWEVER-if life is unbearable right now- I say throw everything at it, and figure it out later. It is a lot easier to deal with pandas in a little child, than an adult.

 

I feel for you- must be very hard to have a young adult suffering with this disorder. There are others- your son is not the only one. Hang in there- things will get better.

 

 

This was my first post so I am still learning. So grateful for responses. I wanted to add a few things. My son, Austin was healthy and never had any psychiatric problems until June 2008. Prior to this he was a straight A student, # 10 ranked 18 yr old USTA tennis player in our state, and keyboard player for our church, going to college on a full scholarship. He developed stomach problems in October 2007 and we took him to his PCP 3-4 times and dr kept telling us it was senior stress. Finally in March 2008 he was diagnosed with H Pylori and treated for 30 days. It was about 6 weeks later when he developed severe OCD almost overnight accompanied by severely restricted eating. We had NO clue what had happened to him. The same PCP told us he had ocd. When I asked how did that just happen, he just said it does. So for months he was treated with high doses of zoloft and luvox and several other drugs which only made him worse. None helped with the ocd. Finally a friend of mine saw a show on mystery diagnosis about pandas and called me. When I began researching it the symptoms matched my sons perfectly except the age. We have struggled to find someone to help until now. Austin has had 2 liver biopsies which show mild inflammation and dialated sinusiods. He has had a heart cath, numerous scans and unltrasounds, 2 brain mri's which have revealed 2 arachnoid cysts the Dr thinks are secondary resulting from infection. He has had so many blood tests. And yes it is so hard. He went from a thriving young man to one who stands in the same place all day, wears the same shirt, will eat only 5 foods and doesn't speak at all except a few words here and there.

The Dr. who is going to treat has consulted with his other drs. We have a team of great Drs: neurologist, rheumatologist, hepatologist, gastroenterologist, and oncologist/hematologist. While not all believe in Pandas, they all believe this is autoimmune related. The Rheumatologist has treated other autoimmune patients with this same type of regimen so we are hopeful it will work.

Edited October 28, 2012 by Kathy N

[Kathy4Him]

Strictly speaking pediatric encompasses both children and adolescents. I think including adolescents was part of the CANS vs PANS (childhood vs. pediatric) dispute. Dr. K notes that adolescent onset may look different; it is more insidious than the childhood version. At the same time he states that onset after age 8, and particularly after age 10, is likely not really the case--the individual likely had an earlier episode that was unrecognized. (My DS had at least two episodes with just one symptom prior to a third exacerbation that was in the classic mode of him coming home one day from school a totally different person. Dr. K also includes adults in this category as well--here is his description:

 

"We have indentified a small group of patients with what appears to be an adolescent-adult "variant" of PANDAS. Hallmark symptoms in these patients include an unrelenting, debilitating anxiety, chronic fatigue, and an eating disorder. All patients in this group have exhibited a chronic non-specific gastrointestinal symptoms and have elevated AntiDnase B titer.

Symptoms usually start in high school (freshman or sophomore year).

 

Initial symptom (present at one time in almost every patient): chronic, not fully explained and/or diagnosed GI ("stomach") complaint (common diagnosis attached to the complaint: GE reflux). Non-specific epigastric or abdominal pains, "heart burn", "fullness" following a meal, occasional morning nausea and/or vomiting are common. Few patients report loose stools but no clinical picture of diarrhea has been elicited. GI symptoms may disappear at the onset of psychiatric symptoms, or they may continue but with decreased intensity or remain unchanged.

 

Insidious development of an overwhelming anxiety. Anxiety usually developes over relatively short period of time (matters of days or weeks). Patients report waking up in the morning with a feeling of an overwhelming (unexplainable) anxiety that may persist throughout the day and can wane slowly towards the evening. An appropriate literary description of these symptoms can be found in Goethe's "Sorrows of (young) Werter". There has been no discernable connection established between a documented (or distinctly recalled) infectious event and the actual onset of anxiety episodes. There is no "wax-and-wane" pattern of symptoms, however patients appear to be much more comfortable (and thus feels better) in socially non-challenging situations and at home. There is a tendency toward avoidance of going out (of the house), avoiding friends and skipping previously favored activities. Patients are unable to establish appropriate peer and/or boyfriend-girlfriend relationships. Eventually they may stop going to school (or to classes, if college students), curtail or seize completely their social activities and become home bound.

 

Intrusive thoughts are present in most patients.

 

Severe and persistent sleep disturbances.

 

Behavioral regression(s).

 

Insecurity and separation anxiety (adolescent type).

 

Chronic fatigue commonly present.

 

Following several years of symptoms, presence of clinical depression is common!"

 

 

 

 

Thank you I have read this and Austin has almost every symptom listed.

 

This was my first post so I am still learning. So grateful for responses. I wanted to add a few things. My son, Austin was healthy and never had any psychiatric problems until June 2008. Prior to this he was a straight A student, # 10 ranked 18 yr old USTA tennis player in our state, and keyboard player for our church, going to college on a full scholarship. He developed stomach problems in October 2007 and we took him to his PCP 3-4 times and dr kept telling us it was senior stress. Finally in March 2008 he was diagnosed with H Pylori and treated for 30 days. It was about 6 weeks later when he developed severe OCD almost overnight accompanied by severely restricted eating. We had NO clue what had happened to him. The same PCP told us he had ocd. When I asked how did that just happen, he just said it does. So for months he was treated with high doses of zoloft and luvox and several other drugs which only made him worse. None helped with the ocd. Finally a friend of mine saw a show on mystery diagnosis about pandas and called me. When I began researching it the symptoms matched my sons perfectly except the age. We have struggled to find someone to help until now. Austin has had 2 liver biopsies which show mild inflammation and dialated sinusiods. He has had a heart cath, numerous scans and unltrasounds, 2 brain mri's which have revealed 2 arachnoid cysts the Dr thinks are secondary resulting from infection. He has had so many blood tests. And yes it is so hard. He went from a thriving young man to one who stands in the same place all day, wears the same shirt, will eat only 5 foods and doesn't speak at all except a few words here and there.

The Dr. who is going to treat has consulted with his other drs. We have a team of great Drs: neurologist, rheumatologist, hepatologist, gastroenterologist, and oncologist/hematologist. While not all believe in Pandas, they all believe this is autoimmune related. The Rheumatologist has treated other autoimmune patients with this same type of regimen so we are hopeful it will work.

 

[Kathy4Him]

Strictly speaking pediatric encompasses both children and adolescents. I think including adolescents was part of the CANS vs PANS (childhood vs. pediatric) dispute. Dr. K notes that adolescent onset may look different; it is more insidious than the childhood version. At the same time he states that onset after age 8, and particularly after age 10, is likely not really the case--the individual likely had an earlier episode that was unrecognized. (My DS had at least two episodes with just one symptom prior to a third exacerbation that was in the classic mode of him coming home one day from school a totally different person. Dr. K also includes adults in this category as well--here is his description:

 

"We have indentified a small group of patients with what appears to be an adolescent-adult "variant" of PANDAS. Hallmark symptoms in these patients include an unrelenting, debilitating anxiety, chronic fatigue, and an eating disorder. All patients in this group have exhibited a chronic non-specific gastrointestinal symptoms and have elevated AntiDnase B titer.

Symptoms usually start in high school (freshman or sophomore year).

 

Initial symptom (present at one time in almost every patient): chronic, not fully explained and/or diagnosed GI ("stomach") complaint (common diagnosis attached to the complaint: GE reflux). Non-specific epigastric or abdominal pains, "heart burn", "fullness" following a meal, occasional morning nausea and/or vomiting are common. Few patients report loose stools but no clinical picture of diarrhea has been elicited. GI symptoms may disappear at the onset of psychiatric symptoms, or they may continue but with decreased intensity or remain unchanged.

 

Insidious development of an overwhelming anxiety. Anxiety usually developes over relatively short period of time (matters of days or weeks). Patients report waking up in the morning with a feeling of an overwhelming (unexplainable) anxiety that may persist throughout the day and can wane slowly towards the evening. An appropriate literary description of these symptoms can be found in Goethe's "Sorrows of (young) Werter". There has been no discernable connection established between a documented (or distinctly recalled) infectious event and the actual onset of anxiety episodes. There is no "wax-and-wane" pattern of symptoms, however patients appear to be much more comfortable (and thus feels better) in socially non-challenging situations and at home. There is a tendency toward avoidance of going out (of the house), avoiding friends and skipping previously favored activities. Patients are unable to establish appropriate peer and/or boyfriend-girlfriend relationships. Eventually they may stop going to school (or to classes, if college students), curtail or seize completely their social activities and become home bound.

 

Intrusive thoughts are present in most patients.

 

Severe and persistent sleep disturbances.

 

Behavioral regression(s).

 

Insecurity and separation anxiety (adolescent type).

 

Chronic fatigue commonly present.

 

Following several years of symptoms, presence of clinical depression is common!"

 

 

 

 

Thank you I have read this and Austin has almost every symptom listed.

 

This was my first post so I am still learning. So grateful for responses. I wanted to add a few things. My son, Austin was healthy and never had any psychiatric problems until June 2008. Prior to this he was a straight A student, # 10 ranked 18 yr old USTA tennis player in our state, and keyboard player for our church, going to college on a full scholarship. He developed stomach problems in October 2007 and we took him to his PCP 3-4 times and dr kept telling us it was senior stress. Finally in March 2008 he was diagnosed with H Pylori and treated for 30 days. It was about 6 weeks later when he developed severe OCD almost overnight accompanied by severely restricted eating. We had NO clue what had happened to him. The same PCP told us he had ocd. When I asked how did that just happen, he just said it does. So for months he was treated with high doses of zoloft and luvox and several other drugs which only made him worse. None helped with the ocd. Finally a friend of mine saw a show on mystery diagnosis about pandas and called me. When I began researching it the symptoms matched my sons perfectly except the age. We have struggled to find someone to help until now. Austin has had 2 liver biopsies which show mild inflammation and dialated sinusiods. He has had a heart cath, numerous scans and unltrasounds, 2 brain mri's which have revealed 2 arachnoid cysts the Dr thinks are secondary resulting from infection. He has had so many blood tests. And yes it is so hard. He went from a thriving young man to one who stands in the same place all day, wears the same shirt, will eat only 5 foods and doesn't speak at all except a few words here and there.

The Dr. who is going to treat has consulted with his other drs. We have a team of great Drs: neurologist, rheumatologist, hepatologist, gastroenterologist, and oncologist/hematologist. While not all believe in Pandas, they all believe this is autoimmune related. The Rheumatologist has treated other autoimmune patients with this same type of regimen so we are hopeful it will work.

 

[Kathy4Him]

Strictly speaking pediatric encompasses both children and adolescents. I think including adolescents was part of the CANS vs PANS (childhood vs. pediatric) dispute. Dr. K notes that adolescent onset may look different; it is more insidious than the childhood version. At the same time he states that onset after age 8, and particularly after age 10, is likely not really the case--the individual likely had an earlier episode that was unrecognized. (My DS had at least two episodes with just one symptom prior to a third exacerbation that was in the classic mode of him coming home one day from school a totally different person. Dr. K also includes adults in this category as well--here is his description:

 

"We have indentified a small group of patients with what appears to be an adolescent-adult "variant" of PANDAS. Hallmark symptoms in these patients include an unrelenting, debilitating anxiety, chronic fatigue, and an eating disorder. All patients in this group have exhibited a chronic non-specific gastrointestinal symptoms and have elevated AntiDnase B titer.

Symptoms usually start in high school (freshman or sophomore year).

 

Initial symptom (present at one time in almost every patient): chronic, not fully explained and/or diagnosed GI ("stomach") complaint (common diagnosis attached to the complaint: GE reflux). Non-specific epigastric or abdominal pains, "heart burn", "fullness" following a meal, occasional morning nausea and/or vomiting are common. Few patients report loose stools but no clinical picture of diarrhea has been elicited. GI symptoms may disappear at the onset of psychiatric symptoms, or they may continue but with decreased intensity or remain unchanged.

 

Insidious development of an overwhelming anxiety. Anxiety usually developes over relatively short period of time (matters of days or weeks). Patients report waking up in the morning with a feeling of an overwhelming (unexplainable) anxiety that may persist throughout the day and can wane slowly towards the evening. An appropriate literary description of these symptoms can be found in Goethe's "Sorrows of (young) Werter". There has been no discernable connection established between a documented (or distinctly recalled) infectious event and the actual onset of anxiety episodes. There is no "wax-and-wane" pattern of symptoms, however patients appear to be much more comfortable (and thus feels better) in socially non-challenging situations and at home. There is a tendency toward avoidance of going out (of the house), avoiding friends and skipping previously favored activities. Patients are unable to establish appropriate peer and/or boyfriend-girlfriend relationships. Eventually they may stop going to school (or to classes, if college students), curtail or seize completely their social activities and become home bound.

 

Intrusive thoughts are present in most patients.

 

Severe and persistent sleep disturbances.

 

Behavioral regression(s).

 

Insecurity and separation anxiety (adolescent type).

 

Chronic fatigue commonly present.

 

Following several years of symptoms, presence of clinical depression is common!"

 

 

 

 

Thank you I have read this and Austin has almost every symptom listed.

 

This was my first post so I am still learning. So grateful for responses. I wanted to add a few things. My son, Austin was healthy and never had any psychiatric problems until June 2008. Prior to this he was a straight A student, # 10 ranked 18 yr old USTA tennis player in our state, and keyboard player for our church, going to college on a full scholarship. He developed stomach problems in October 2007 and we took him to his PCP 3-4 times and dr kept telling us it was senior stress. Finally in March 2008 he was diagnosed with H Pylori and treated for 30 days. It was about 6 weeks later when he developed severe OCD almost overnight accompanied by severely restricted eating. We had NO clue what had happened to him. The same PCP told us he had ocd. When I asked how did that just happen, he just said it does. So for months he was treated with high doses of zoloft and luvox and several other drugs which only made him worse. None helped with the ocd. Finally a friend of mine saw a show on mystery diagnosis about pandas and called me. When I began researching it the symptoms matched my sons perfectly except the age. We have struggled to find someone to help until now. Austin has had 2 liver biopsies which show mild inflammation and dialated sinusiods. He has had a heart cath, numerous scans and unltrasounds, 2 brain mri's which have revealed 2 arachnoid cysts the Dr thinks are secondary resulting from infection. He has had so many blood tests. And yes it is so hard. He went from a thriving young man to one who stands in the same place all day, wears the same shirt, will eat only 5 foods and doesn't speak at all except a few words here and there.

The Dr. who is going to treat has consulted with his other drs. We have a team of great Drs: neurologist, rheumatologist, hepatologist, gastroenterologist, and oncologist/hematologist. While not all believe in Pandas, they all believe this is autoimmune related. The Rheumatologist has treated other autoimmune patients with this same type of regimen so we are hopeful it will work.

 

[Kathy4Him]

Hi Kathy-

 

I am going to contradict mama2alex a little bit- just to give you another point of view.

 

I have two kids, both contracted pandas at the same time- one was 5 1/2, the other 8 1/2. The older one had strep two years prior- with no incident. I do think that PANDAS can hit at any time, including adulthood. The reality is that the "pediatric" portion of pandas was imposed on the diagnoses for research purposes, and not because it was ever looked into that older kids, or adults, could get this disorder. I think in many ways it is easier to really SEE the pandas in someone older. Gosh, at 19 your son's personality was set, you KNEW him, and I am guessing from your post that things changed fairly dramatically. It was VERY easy for us to see the change in both of our girls, but we missed subtle changes in our little one (mostly academic, reading, separation anxiety)- while the older one, we KNEW everything that was different and that it was NOT a stage of development.

 

If I saw this type of change in anyone, young or old, I would want to look at pandas. The treatment of pandas is RELATIVELY benign in comparison to the NOT treatment of pandas.

 

We decided at the onset of this disorder that we would treat aggressively. Watching both of my kids lose themselves, I mean lose the joy in being a child, and losing some of their best qualities, overnight was horrible. We decided we would take whatever measures we could to make sure they had the best shot at a normal life.

 

Both of my kids had plasma pheresis, did two years of daily zithromax, have done IV steroids twice, and have done oral steroid bursts several times, over the last 3.5 years. We try our hardest to treat quickly and aggressively. So far, it is working. They are happy and healthy. The go to school, do well academically and socially, and have VERY little or no ocd or anxiety MOST of the time. When they get sick (a cold, fever, etc), they flare up, we treat them, and they get better.

 

I have ALWAYS wondered why we cannot use immunosuppressive drugs. It would certainly make sense.

 

My kids have been through TONS of testing, and everything (except the cunningham test) is typically negative.

 

I would suggest (and imagine your doc has done) a reasonable battery of tests to rule out things. However, if your son had an almost overnight change- that really points toward pandas. I do think that a methodical approach to using the interventions is a good idea- at some point you need to figure out what works the best, and is the most benign. Hopefully your doc could figure this out- IMHO I would start with a month of zithromax, then I might proceed to a month of steroids, then if needed, I would proceed to the IVIG, and possible a month later proceed to the immunosuppressants. HOWEVER-if life is unbearable right now- I say throw everything at it, and figure it out later. It is a lot easier to deal with pandas in a little child, than an adult.

 

I feel for you- must be very hard to have a young adult suffering with this disorder. There are others- your son is not the only one. Hang in there- things will get better.

 

 

 

This was my first post so I am still learning. So grateful for responses. I wanted to add a few things. My son, Austin was healthy and never had any psychiatric problems until June 2008. Prior to this he was a straight A student, # 10 ranked 18 yr old USTA tennis player in our state, and keyboard player for our church, going to college on a full scholarship. He developed stomach problems in October 2007 and we took him to his PCP 3-4 times and dr kept telling us it was senior stress. Finally in March 2008 he was diagnosed with H Pylori and treated for 30 days. It was about 6 weeks later when he developed severe OCD almost overnight accompanied by severely restricted eating. We had NO clue what had happened to him. The same PCP told us he had ocd. When I asked how did that just happen, he just said it does. So for months he was treated with high doses of zoloft and luvox and several other drugs which only made him worse. None helped with the ocd. Finally a friend of mine saw a show on mystery diagnosis about pandas and called me. When I began researching it the symptoms matched my sons perfectly except the age. We have struggled to find someone to help until now. Austin has had 2 liver biopsies which show mild inflammation and dialated sinusiods. He has had a heart cath, numerous scans and unltrasounds, 2 brain mri's which have revealed 2 arachnoid cysts the Dr thinks are secondary resulting from infection. He has had so many blood tests. And yes it is so hard. He went from a thriving young man to one who stands in the same place all day, wears the same shirt, will eat only 5 foods and doesn't speak at all except a few words here and there.

The Dr. who is going to treat has consulted with his other drs. We have a team of great Drs: neurologist, rheumatologist, hepatologist, gastroenterologist, and oncologist/hematologist. While not all believe in Pandas, they all believe this is autoimmune related. The Rheumatologist has treated other autoimmune patients with this same type of regimen so we are hopeful it will work.

[Kathy4Him]

Strictly speaking pediatric encompasses both children and adolescents. I think including adolescents was part of the CANS vs PANS (childhood vs. pediatric) dispute. Dr. K notes that adolescent onset may look different; it is more insidious than the childhood version. At the same time he states that onset after age 8, and particularly after age 10, is likely not really the case--the individual likely had an earlier episode that was unrecognized. (My DS had at least two episodes with just one symptom prior to a third exacerbation that was in the classic mode of him coming home one day from school a totally different person. Dr. K also includes adults in this category as well--here is his description:

 

"We have indentified a small group of patients with what appears to be an adolescent-adult "variant" of PANDAS. Hallmark symptoms in these patients include an unrelenting, debilitating anxiety, chronic fatigue, and an eating disorder. All patients in this group have exhibited a chronic non-specific gastrointestinal symptoms and have elevated AntiDnase B titer.

Symptoms usually start in high school (freshman or sophomore year).

 

Initial symptom (present at one time in almost every patient): chronic, not fully explained and/or diagnosed GI ("stomach") complaint (common diagnosis attached to the complaint: GE reflux). Non-specific epigastric or abdominal pains, "heart burn", "fullness" following a meal, occasional morning nausea and/or vomiting are common. Few patients report loose stools but no clinical picture of diarrhea has been elicited. GI symptoms may disappear at the onset of psychiatric symptoms, or they may continue but with decreased intensity or remain unchanged.

 

Insidious development of an overwhelming anxiety. Anxiety usually developes over relatively short period of time (matters of days or weeks). Patients report waking up in the morning with a feeling of an overwhelming (unexplainable) anxiety that may persist throughout the day and can wane slowly towards the evening. An appropriate literary description of these symptoms can be found in Goethe's "Sorrows of (young) Werter". There has been no discernable connection established between a documented (or distinctly recalled) infectious event and the actual onset of anxiety episodes. There is no "wax-and-wane" pattern of symptoms, however patients appear to be much more comfortable (and thus feels better) in socially non-challenging situations and at home. There is a tendency toward avoidance of going out (of the house), avoiding friends and skipping previously favored activities. Patients are unable to establish appropriate peer and/or boyfriend-girlfriend relationships. Eventually they may stop going to school (or to classes, if college students), curtail or seize completely their social activities and become home bound.

 

Intrusive thoughts are present in most patients.

 

Severe and persistent sleep disturbances.

 

Behavioral regression(s).

 

Insecurity and separation anxiety (adolescent type).

 

Chronic fatigue commonly present.

 

Following several years of symptoms, presence of clinical depression is common!"

 

 

Thank you for your response! One thing I did not say is that when my son was young: 4-5 he had 9 strep throats in 9 mths. He was allergic to penicillin and augmentin and as soon as here was strep free tonsils and adnoids came out. He has continued over the yrs to have strep and sinus infections. Was also diagnosed with JDMS juvenile dermatomyositis at age 9. Although all symptons went away after a few months that is an autoimmune illness. And yes as I remember when he was young and going thru strep had not so much any ocd but do remember a bit of anxiety.

Edited October 28, 2012 by Kathy N

[Kathy4Him]

Kathy,

 

I'm so sorry you and your family are going through this. It sounds like you've been pushing for answers for a long time and it sounds like you have a doctor who really cares, so that's great. What I did notice is that your son's PANDAS symptoms came on at age 19, which isn't typical. Its most often age 5 or 6, or 8 or 9, though it can definitely happen at other ages. I'm not saying it couldn't be PANDAS, just that that stood out and might indicate exploring other issues in addition to PANDAS. Also, it seems like your doctor is throwing everything at it all at once. Did he check for current infections such as strep, mycoplasma, Lyme/coinfections, and staph? Did he check for an immune deficiency? If your son has current ongoing infections, steroids will suppress his immune system and allow the infections to multiply, making things worse. If he doesn't have current infections, why start antibiotics right away? And why high dose? Why not wait until after trying the other interventions and then do prophylactic antibiotics. Also, does he feel high dose antibiotics are safe right now, given the liver inflammation?

 

I'm sorry to question, and of course I'm just basing my opinion and questions on my own experience, but I didn't want to stay silent. This super aggressive approach isn't something I've seen done by the best PANDAS and Lyme doctors who treat these kids.

 

Hopefully, others will chime in too.

 

My 23 yr old son has had PANDAS/PANS for 4 1/2 yrs. Finally we have Dr who is going to treat. He has high ANA titers, high atypical PANCA has inflammation in liver. In beginning Drs wanted to treat with SSRIs none of them have worked only made him worse. This Dr. is going to give him high dose IVIG (Gammunex) and steroids, immunosuppressants and high dose zithromax for 90 days. he is allergic to penicillin augmenten and keflex. Can anyone tell me what to watch for after IVIG and any advice on how to minimize side effects? Also has anyone else does this combination of treatment? Dr. says he wants to use everything he can to get rid of this? thanks!!Kathy

 

This Dr. treats a lot of autoimmune illnesses so I think that's why he recommends the aggressive approach. In addition my son's case has become pretty severe. I appreciate your comments. I have had my own concerns about the treatment but we really trust this Dr. and have worked with him to rule out soooooo many things in the last 10 months thru multiple tests. I hope others will comment too. Thanks so much! Kathy

[LNN]

There are a few things that strike me about your post.

First - what treatment is suggested for the arachnoid cysts? What portion of the symptoms that you're seeing could be related to the cysts? This seems to be the most serious of your conditions and I'd want to know how the proposed treatments are expected to address the cysts.

 

Second - I understand the trust you have in your doctors and how hard it's been to find someone to support you. I can see why you wouldn't want to question their suggestions. But this plan seems to be throwing a lot of things at the problem at once. If it's Pandas, taking a more methodical, one thing at a time approach is generally more helpful -

1. a 30-60 day course of antibiotics (omnicef/ceftin crosses the blood-brain barrier and given the cysts and possible previous menges infection, this might be a good one to consider) or a combo of antibiotics (one that works extra-cellular and one that works intracellular) and it might be wise to make one of them something that works well for H Pylori. *Note that if there's an active infection, antibiotics can initially give you a herxheimer response and make symptoms worse before better. It means it's working, not that you should discontinue

 

2. If you aren't treating the gut, I would urge you to do that for a month before you do any other treatment (aside from antibiotics). The damage the H Pylori may have done would've given you leaky gut, which would add to both nutritional deficits (which can cause neuropsych symptoms) as well as induce inflammation triggered behaviors. Some of these other treatments (IVIG) are hard on the body (if it's Pandas). You need to support the gut, eradicate any current infection and reduce inflammation as first steps.

 

3. Only after you did the above two for at least a month would I move to prednisone. I know some have seen immediate improvement from prednisone, but that's generally after treating an active infection, not before or during.

 

4. After giving anti-inflammatories a chance, then I think you'd be in a better position to evaluate the need for IVIG.

 

When I first entered the Pandas world, I was all in favor of knocking the sh** out of whatever had stolen my child. But I've seen better results from a more methodical approach that includes a heavy dose of supporting the body first and then being aggressive once you've reinforced the foundation. It's a more frustrating approach in that you just want your child well NOW, but throwing the kitchen sink at him could give you a worse mess.

 

Finally, with the cysts and H Pylori and sinus issues, I think it's really important to establish that this is Pandas/Pans. Other conditions can give you a similar set of symptoms (lyme related diseases, leaky gut issues, parasite or other bacterial infections beyond strep...). There's a neurologist in D.C. who treats Pandas and may be able to consult on your son's case and help your current team map out a game plan.

 

One last thought - regardless of your next steps, I'd start adding probiotics to your son's day (taken a minimum of 2 hrs away from any antibiotics) and ibuprofen (motrin) taken 3x/day may also help with some of his symptoms that are inflammation-driven. it helps some of our kids immensely.

 

Hang in there. You can get your son back. it just may take time.