what type of doctor

[lss]

After reading some of your posts and reading the different types of doctors that some of you have taken your children to, I am wondering what type of doctor would be the best to treat Pandas. Pediatricians, infectious disease, neurologist, very confusing. Any suggestions. I have taken my son to peds, who referred us to a neurologist, but he did not do anything except wanting to prescribe anti-psychotic drugs, which we said no to. Family practice doctor was nice enough to prescribe the anti-biotics, so that helps, but do I need to get mri, or cat scans of his brain? What would a infectious disease doctor do any different? We also took him to see a DAN doctor who is doing blood work, stool and urine test, allergy test, but yet no one is looking at the brain? Should I get someone to look at the damage that Pandas is doing to his brain?

 

We have spoken to Dr. K in Chicago as well regarding IVIG, but something in me tells me to wait on this. Any advise?

[EAMom]

A lot depends on the individual dr. Many neurologists (and other docs) don't "believe" in PANDAS...so I think whether you get help from one is a bit hit or miss. For us the pediatric neurologist and pediatric rheumatologist were not particularly well informed about PANDAS but they were helpful in that they agreed that dd should stay on prophylactic azithromycin for a year (and then re-evaluate) when helped convince our reluctant pediatrician to write us the rx.

 

Our ocd specialist child psychiatrist was helpful as well...but this may not be appropriate to your situation if you child has mainly tics. Ours had some tics but her main problem was OCD/mood/anorexia nervosa.

 

We did get an okay from the neurologist for an MRI in May when dd was doing worse...we ended up not going through with it when dd responded to Azithromycin. I think worried dad did get one. An MRI wouldn't "prove" pandas but might offer a bit of evidence if the basal ganglia was enlarged...it's not a very sensitive test though. Mainly, we were thinking of doing it b/c dd wasn't responding to antibioitcs and we wanted to make sure we weren't overlooking something bizarre like a brain tumor. The other down-side to an MRI would be that you might need to sedate your child to get it done.

 

It's good news that your family practice doc is open to the antibiotics...that is definitely a step in the right direction!

[Worried_Dad]

Yes, we had an MRI in the early days of our son's illness, when the most serious symptoms were seizure-like twitching episodes, muscle weakness, difficulty walking. The MRI was "unremarkable" but not clear because of his "artifact" (twitching during the procedure). We were part of a PET scan study in March of this year, and that showed inflammation in our son's right basal ganglia.

 

As far as what kind of doctor: as EAMom said, I think the most important thing is to find somebody who's open-minded, listens, and considers all the evidence. We went through endless frustration with rheumatologists and neurologists who decided within 5 minutes of examining our son that his symptoms were "psychogenic," despite the high fever and arthritis-like symptoms and ongoing fever spikes. Made us SO mad! Then we found a general practitioner who specializes in infectious diseases like Lyme but also practices complementary medicine, and he believed from the start that there was a viral or bacterial agent involved. Also were lucky enough to find a wonderful neuropsychologist who said "psychogenic? that doesn't make sense" and helped us overcome that knee-jerk diagnosis.

 

So those 2 open-minded docs (GP and neuropsych) together gave us hope, kept open minds, and the GP ordered a series of blood tests that included ASO titer, which came back off the scale. He diagnosed my son (originally with acute rheumatic fever with Sydenham's chorea, later PANDAS instead of SC) and helped us understand what we were dealing with.

 

So for this type of illness, I totally agree that the most important thing is finding a doctor who doesn't dismiss PANDAS (and your child's physical as well as psych symptoms) out of hand. For us, at least, that wasn't easy to find... but it made all the difference in the world! And so far, Dr. K in Chicago has been WONDERFUL in that regard.

 

Hope that helps, and best of luck. Don't give up until you find that "right" doctor who appreciates what your child is going through and takes ALL the symptoms seriously!!!

 

 

A lot depends on the individual dr. Many neurologists (and other docs) don't "believe" in PANDAS...so I think whether you get help from one is a bit hit or miss. For us the pediatric neurologist and pediatric rheumatologist were not particularly well informed about PANDAS but they were helpful in that they agreed that dd should stay on prophylactic azithromycin for a year (and then re-evaluate) when helped convince our reluctant pediatrician to write us the rx.

 

Our ocd specialist child psychiatrist was helpful as well...but this may not be appropriate to your situation if you child has mainly tics. Ours had some tics but her main problem was OCD/mood/anorexia nervosa.

 

We did get an okay from the neurologist for an MRI in May when dd was doing worse...we ended up not going through with it when dd responded to Azithromycin. I think worried dad did get one. An MRI wouldn't "prove" pandas but might offer a bit of evidence if the basal ganglia was enlarged...it's not a very sensitive test though. Mainly, we were thinking of doing it b/c dd wasn't responding to antibioitcs and we wanted to make sure we weren't overlooking something bizarre like a brain tumor. The other down-side to an MRI would be that you might need to sedate your child to get it done.

 

It's good news that your family practice doc is open to the antibiotics...that is definitely a step in the right direction!

[lss]

Worried Dad,

 

How is your son doing after the IVIG.

 

Linda

 

 

Yes, we had an MRI in the early days of our son's illness, when the most serious symptoms were seizure-like twitching episodes, muscle weakness, difficulty walking. The MRI was "unremarkable" but not clear because of his "artifact" (twitching during the procedure). We were part of a PET scan study in March of this year, and that showed inflammation in our son's right basal ganglia.

 

As far as what kind of doctor: as EAMom said, I think the most important thing is to find somebody who's open-minded, listens, and considers all the evidence. We went through endless frustration with rheumatologists and neurologists who decided within 5 minutes of examining our son that his symptoms were "psychogenic," despite the high fever and arthritis-like symptoms and ongoing fever spikes. Made us SO mad! Then we found a general practitioner who specializes in infectious diseases like Lyme but also practices complementary medicine, and he believed from the start that there was a viral or bacterial agent involved. Also were lucky enough to find a wonderful neuropsychologist who said "psychogenic? that doesn't make sense" and helped us overcome that knee-jerk diagnosis.

 

So those 2 open-minded docs (GP and neuropsych) together gave us hope, kept open minds, and the GP ordered a series of blood tests that included ASO titer, which came back off the scale. He diagnosed my son (originally with acute rheumatic fever with Sydenham's chorea, later PANDAS instead of SC) and helped us understand what we were dealing with.

 

So for this type of illness, I totally agree that the most important thing is finding a doctor who doesn't dismiss PANDAS (and your child's physical as well as psych symptoms) out of hand. For us, at least, that wasn't easy to find... but it made all the difference in the world! And so far, Dr. K in Chicago has been WONDERFUL in that regard.

 

Hope that helps, and best of luck. Don't give up until you find that "right" doctor who appreciates what your child is going through and takes ALL the symptoms seriously!!!

 

 

A lot depends on the individual dr. Many neurologists (and other docs) don't "believe" in PANDAS...so I think whether you get help from one is a bit hit or miss. For us the pediatric neurologist and pediatric rheumatologist were not particularly well informed about PANDAS but they were helpful in that they agreed that dd should stay on prophylactic azithromycin for a year (and then re-evaluate) when helped convince our reluctant pediatrician to write us the rx.

 

Our ocd specialist child psychiatrist was helpful as well...but this may not be appropriate to your situation if you child has mainly tics. Ours had some tics but her main problem was OCD/mood/anorexia nervosa.

 

We did get an okay from the neurologist for an MRI in May when dd was doing worse...we ended up not going through with it when dd responded to Azithromycin. I think worried dad did get one. An MRI wouldn't "prove" pandas but might offer a bit of evidence if the basal ganglia was enlarged...it's not a very sensitive test though. Mainly, we were thinking of doing it b/c dd wasn't responding to antibioitcs and we wanted to make sure we weren't overlooking something bizarre like a brain tumor. The other down-side to an MRI would be that you might need to sedate your child to get it done.

 

It's good news that your family practice doc is open to the antibiotics...that is definitely a step in the right direction!

[Worried_Dad]

Hi, Linda:

 

Over the past 3 weeks since IVIG, we've seen major improvement. OCD much milder, anorexia completely gone, and his mood and personality are much closer to the pre-illness days. We still have a long way to go, though, and that's not surprising. Based on our son's "advanced age" (12) and severity of symptoms, Dr. K forewarned us that it would probably take longer than average to fully resolve.

 

We have (again, per Dr. K's expectation) seen recurrence of some symptoms from the early days of our son's illness. In the past few days, he's been having much more trouble with muscle weakness, difficulty walking, and twitching / tics. Haven't seen these symptoms much for many months, so we're taking this as a positive sign of progress: Dr. K's classic "flipping the pages backward" phenomenon that he's observed in so many of these PANDAS kids post-IVIG.

 

We're definitely glad we went ahead with IVIG. It's already made a big difference, and it gives us hope. Hope to share even better news in the near future!!!

 

Worried Dad,

 

How is your son doing after the IVIG.

 

Linda

 

 

Yes, we had an MRI in the early days of our son's illness, when the most serious symptoms were seizure-like twitching episodes, muscle weakness, difficulty walking. The MRI was "unremarkable" but not clear because of his "artifact" (twitching during the procedure). We were part of a PET scan study in March of this year, and that showed inflammation in our son's right basal ganglia.

 

As far as what kind of doctor: as EAMom said, I think the most important thing is to find somebody who's open-minded, listens, and considers all the evidence. We went through endless frustration with rheumatologists and neurologists who decided within 5 minutes of examining our son that his symptoms were "psychogenic," despite the high fever and arthritis-like symptoms and ongoing fever spikes. Made us SO mad! Then we found a general practitioner who specializes in infectious diseases like Lyme but also practices complementary medicine, and he believed from the start that there was a viral or bacterial agent involved. Also were lucky enough to find a wonderful neuropsychologist who said "psychogenic? that doesn't make sense" and helped us overcome that knee-jerk diagnosis.

 

So those 2 open-minded docs (GP and neuropsych) together gave us hope, kept open minds, and the GP ordered a series of blood tests that included ASO titer, which came back off the scale. He diagnosed my son (originally with acute rheumatic fever with Sydenham's chorea, later PANDAS instead of SC) and helped us understand what we were dealing with.

 

So for this type of illness, I totally agree that the most important thing is finding a doctor who doesn't dismiss PANDAS (and your child's physical as well as psych symptoms) out of hand. For us, at least, that wasn't easy to find... but it made all the difference in the world! And so far, Dr. K in Chicago has been WONDERFUL in that regard.

 

Hope that helps, and best of luck. Don't give up until you find that "right" doctor who appreciates what your child is going through and takes ALL the symptoms seriously!!!

 

 

A lot depends on the individual dr. Many neurologists (and other docs) don't "believe" in PANDAS...so I think whether you get help from one is a bit hit or miss. For us the pediatric neurologist and pediatric rheumatologist were not particularly well informed about PANDAS but they were helpful in that they agreed that dd should stay on prophylactic azithromycin for a year (and then re-evaluate) when helped convince our reluctant pediatrician to write us the rx.

 

Our ocd specialist child psychiatrist was helpful as well...but this may not be appropriate to your situation if you child has mainly tics. Ours had some tics but her main problem was OCD/mood/anorexia nervosa.

 

We did get an okay from the neurologist for an MRI in May when dd was doing worse...we ended up not going through with it when dd responded to Azithromycin. I think worried dad did get one. An MRI wouldn't "prove" pandas but might offer a bit of evidence if the basal ganglia was enlarged...it's not a very sensitive test though. Mainly, we were thinking of doing it b/c dd wasn't responding to antibioitcs and we wanted to make sure we weren't overlooking something bizarre like a brain tumor. The other down-side to an MRI would be that you might need to sedate your child to get it done.

 

It's good news that your family practice doc is open to the antibiotics...that is definitely a step in the right direction!