RE: Re: Anyone's child on immunosuppressants (chemo or anti-TNFs) for autoimmune disease

[Guest guest]

Does your dd have JRA? I know that sometimes the eye disease shows up before the

joints. Stormy

________________________________

To:

Sent: Thu, July 8, 2010 7:10:07 PM

Subject: Re: Anyone's child on immunosuppressants (chemo or

anti-TNFs) for autoimmune disease

She was previously on methotrexate for uveitis ( " arthritis of the eyes " ) cause

by an unknown autoimmune condition (We have tested for practically everything).

The methotrexate didn't work. We actually got her on 100% natural remedies and

enjoyed that for about 6 months then she got pandas. Now everything is going

awry!! We don't know what we will do next. She is doing a prednisone burst and

that is helping the pandas and her hearing, which has recently been affected

too. From past experience, I fear her eye inflammation will get much worse once

the tapering is complete.

Did you find that the pandas treatment aggravated the lyme? That is what I feel

is happening in my daughter's case. She was doing fantastic (with the uveitis)

until we started antibiotics for the pandas. Is your son taking any

immunosuppressants for the lyme?

May

>

> HI May,

> My son has PANDAS and chronic Lyme, so he is having a very hard time. I'm

>hoping

>

> Dr.Bouboulis will give us some further advice.

> What meds is your child on if you don't mind me asking? Does your child have

> another immune disorder, or just PANDAS?

> Hugs

> Judy

>

>

>

>

> ________________________________

>

> To:

> Sent: Thu, July 8, 2010 1:49:35 PM

> Subject: Anyone's child on immunosuppressants (chemo or

> anti-TNFs) for autoimmune disease

>

> Â

> A couple of the pandas doctors have talked about the possible affects of

> immunosuppressants (low dose chemo, anti-TNFs, biologics) such as

methotrexate,

>

> cellcept, or humira on pandas, but they have no patients on these. I know that

> some pandas patients have other autoimmune diseases such as chrons disease. I

> would imagine someone's child must be on medications for those. I would like

>any

>

> information that you can give me. I am also curious about the affects that

> pandas treatments may have on the other autoimmune disease(s).

>

> Thank you.

> May

>

>

>

>

>

[Guest guest]

Hi May,

My son has uveitis as well, in one eye, from the lyme, and is legally blind in

that eye from it.

He is currently on two antibiotics now, as well as abilify, and tenex, for his

ocd and mood, tics, etc.

My son cannot have prednisone because it makes the lyme worse.

It's definitley a catch 22!!

I'm hoping to learn more form the immunologist.

Does your dd go to a PANDAS doctor as well?

Hugs

Judy

________________________________

To:

Sent: Thu, July 8, 2010 8:10:07 PM

Subject: Re: Anyone's child on immunosuppressants (chemo or

anti-TNFs) for autoimmune disease

 

She was previously on methotrexate for uveitis ( " arthritis of the eyes " ) cause

by an unknown autoimmune condition (We have tested for practically everything).

The methotrexate didn't work. We actually got her on 100% natural remedies and

enjoyed that for about 6 months then she got pandas. Now everything is going

awry!! We don't know what we will do next. She is doing a prednisone burst and

that is helping the pandas and her hearing, which has recently been affected

too. From past experience, I fear her eye inflammation will get much worse once

the tapering is complete.

Did you find that the pandas treatment aggravated the lyme? That is what I feel

is happening in my daughter's case. She was doing fantastic (with the uveitis)

until we started antibiotics for the pandas. Is your son taking any

immunosuppressants for the lyme?

May

>

> HI May,

> My son has PANDAS and chronic Lyme, so he is having a very hard time. I'm

>hoping

>

> Dr.Bouboulis will give us some further advice.

> What meds is your child on if you don't mind me asking? Does your child have

> another immune disorder, or just PANDAS?

> Hugs

> Judy

>

>

>

>

> ________________________________

>

> To:

> Sent: Thu, July 8, 2010 1:49:35 PM

> Subject: Anyone's child on immunosuppressants (chemo or

> anti-TNFs) for autoimmune disease

>

>  

> A couple of the pandas doctors have talked about the possible affects of

> immunosuppressants (low dose chemo, anti-TNFs, biologics) such as

methotrexate,

>

> cellcept, or humira on pandas, but they have no patients on these. I know that

> some pandas patients have other autoimmune diseases such as chrons disease. I

> would imagine someone's child must be on medications for those. I would like

>any

>

> information that you can give me. I am also curious about the affects that

> pandas treatments may have on the other autoimmune disease(s).

>

> Thank you.

> May

>

>

>

>

>

[Guest guest]

Yes, my son had uveitis, than later had swollen knee joints and was misdiagnosed

with juvenile rheumatoid arthritis. He has lyme, and that causes both uveitis

and JRA.

Hugs

Judy

________________________________

To:

Sent: Thu, July 8, 2010 8:27:39 PM

Subject: Re: Re: Anyone's child on immunosuppressants (chemo

or anti-TNFs) for autoimmune disease

 

Does your dd have JRA? I know that sometimes the eye disease shows up before the

joints. Stormy

________________________________

To:

Sent: Thu, July 8, 2010 7:10:07 PM

Subject: Re: Anyone's child on immunosuppressants (chemo or

anti-TNFs) for autoimmune disease

She was previously on methotrexate for uveitis ( " arthritis of the eyes " ) cause

by an unknown autoimmune condition (We have tested for practically everything).

The methotrexate didn't work. We actually got her on 100% natural remedies and

enjoyed that for about 6 months then she got pandas. Now everything is going

awry!! We don't know what we will do next. She is doing a prednisone burst and

that is helping the pandas and her hearing, which has recently been affected

too. From past experience, I fear her eye inflammation will get much worse once

the tapering is complete.

Did you find that the pandas treatment aggravated the lyme? That is what I feel

is happening in my daughter's case. She was doing fantastic (with the uveitis)

until we started antibiotics for the pandas. Is your son taking any

immunosuppressants for the lyme?

May

>

> HI May,

> My son has PANDAS and chronic Lyme, so he is having a very hard time. I'm

>hoping

>

> Dr.Bouboulis will give us some further advice.

> What meds is your child on if you don't mind me asking? Does your child have

> another immune disorder, or just PANDAS?

> Hugs

> Judy

>

>

>

>

> ________________________________

>

> To:

> Sent: Thu, July 8, 2010 1:49:35 PM

> Subject: Anyone's child on immunosuppressants (chemo or

> anti-TNFs) for autoimmune disease

>

> Â

> A couple of the pandas doctors have talked about the possible affects of

> immunosuppressants (low dose chemo, anti-TNFs, biologics) such as

methotrexate,

>

>

> cellcept, or humira on pandas, but they have no patients on these. I know that

> some pandas patients have other autoimmune diseases such as chrons disease. I

> would imagine someone's child must be on medications for those. I would like

>any

>

> information that you can give me. I am also curious about the affects that

> pandas treatments may have on the other autoimmune disease(s).

>

> Thank you.

> May

>

>

>

>

>

[Guest guest]

I think that is pretty common. My dd really did have JRA, but I know lyme is one

of the things that mimic symptoms. I hope your son feels better soon, Judy.

Stormy

________________________________

To:

Sent: Thu, July 8, 2010 7:40:46 PM

Subject: Re: Re: Anyone's child on immunosuppressants (chemo

or anti-TNFs) for autoimmune disease

Yes, my son had uveitis, than later had swollen knee joints and was misdiagnosed

with juvenile rheumatoid arthritis. He has lyme, and that causes both uveitis

and JRA.

Hugs

Judy

________________________________

To:

Sent: Thu, July 8, 2010 8:27:39 PM

Subject: Re: Re: Anyone's child on immunosuppressants (chemo

or anti-TNFs) for autoimmune disease

Does your dd have JRA? I know that sometimes the eye disease shows up before the

joints. Stormy

________________________________

To:

Sent: Thu, July 8, 2010 7:10:07 PM

Subject: Re: Anyone's child on immunosuppressants (chemo or

anti-TNFs) for autoimmune disease

She was previously on methotrexate for uveitis ( " arthritis of the eyes " ) cause

by an unknown autoimmune condition (We have tested for practically everything).

The methotrexate didn't work. We actually got her on 100% natural remedies and

enjoyed that for about 6 months then she got pandas. Now everything is going

awry!! We don't know what we will do next. She is doing a prednisone burst and

that is helping the pandas and her hearing, which has recently been affected

too. From past experience, I fear her eye inflammation will get much worse once

the tapering is complete.

Did you find that the pandas treatment aggravated the lyme? That is what I feel

is happening in my daughter's case. She was doing fantastic (with the uveitis)

until we started antibiotics for the pandas. Is your son taking any

immunosuppressants for the lyme?

May

>

> HI May,

> My son has PANDAS and chronic Lyme, so he is having a very hard time. I'm

>hoping

>

> Dr.Bouboulis will give us some further advice.

> What meds is your child on if you don't mind me asking? Does your child have

> another immune disorder, or just PANDAS?

> Hugs

> Judy

>

>

>

>

> ________________________________

>

> To:

> Sent: Thu, July 8, 2010 1:49:35 PM

> Subject: Anyone's child on immunosuppressants (chemo or

> anti-TNFs) for autoimmune disease

>

> Â

> A couple of the pandas doctors have talked about the possible affects of

> immunosuppressants (low dose chemo, anti-TNFs, biologics) such as

methotrexate,

>

>

>

> cellcept, or humira on pandas, but they have no patients on these. I know that

> some pandas patients have other autoimmune diseases such as chrons disease. I

> would imagine someone's child must be on medications for those. I would like

>any

>

> information that you can give me. I am also curious about the affects that

> pandas treatments may have on the other autoimmune disease(s).

>

> Thank you.

> May

>

>

>

>

>

[Guest guest]

Sorry, May. My dd doesn't have PANDAS. She had JRA but seems to have outgrown

it. She was diagnosed with JRA when she was 4 and she is now 19. She has

OCD/severe anxiety, bipolar and aspergers. She doesn't take JRA meds anymore. I

was just wondering if your dd may actually have JRA since she has the uveitis.

Good luck, Stormy

________________________________

To:

Sent: Thu, July 8, 2010 10:14:46 PM

Subject: Re: Anyone's child on immunosuppressants (chemo or

anti-TNFs) for autoimmune disease

Stormy does your child also have pandas? The treatments for JRA are basically

the same as for my daughter's uveitis.

May

> >

> > HI May,

> > My son has PANDAS and chronic Lyme, so he is having a very hard time. I'm

> >hoping

> >

> > Dr.Bouboulis will give us some further advice.

> > What meds is your child on if you don't mind me asking? Does your child have

> > another immune disorder, or just PANDAS?

> > Hugs

> > Judy

> >

> >

> >

> >

> > ________________________________

> > From: parents4eyes <wilber04@>

> > To:

> > Sent: Thu, July 8, 2010 1:49:35 PM

> > Subject: Anyone's child on immunosuppressants (chemo or

> > anti-TNFs) for autoimmune disease

> >

> > Â

> > A couple of the pandas doctors have talked about the possible affects of

> > immunosuppressants (low dose chemo, anti-TNFs, biologics) such as

>methotrexate,

>

> >

> >

> >

> > cellcept, or humira on pandas, but they have no patients on these. I know

>that

>

>

>

> > some pandas patients have other autoimmune diseases such as chrons disease.

I

>

> > would imagine someone's child must be on medications for those. I would like

> >any

> >

> > information that you can give me. I am also curious about the affects that

> > pandas treatments may have on the other autoimmune disease(s).

> >

> > Thank you.

> > May

> >

> >

> >

> >

> >

[Guest guest]

What is JRA?

From: [mailto: ]

On Behalf Of Stormy -

Sent: Thursday, July 08, 2010 10:32 PM

To:

Subject: Re: Re: Anyone's child on immunosuppressants (chemo

or anti-TNFs) for autoimmune disease

Sorry, May. My dd doesn't have PANDAS. She had JRA but seems to have outgrown

it. She was diagnosed with JRA when she was 4 and she is now 19. She has

OCD/severe anxiety, bipolar and aspergers. She doesn't take JRA meds anymore. I

was just wondering if your dd may actually have JRA since she has the uveitis.

Good luck, Stormy

________________________________

From: parents4eyes <wilber04@... <mailto:wilber04%40yahoo.com> >

To: <mailto:%40yahoogroups.com>

Sent: Thu, July 8, 2010 10:14:46 PM

Subject: Re: Anyone's child on immunosuppressants (chemo or

anti-TNFs) for autoimmune disease

Stormy does your child also have pandas? The treatments for JRA are basically

the same as for my daughter's uveitis.

May

> >

> > HI May,

> > My son has PANDAS and chronic Lyme, so he is having a very hard time. I'm

> >hoping

> >

> > Dr.Bouboulis will give us some further advice.

> > What meds is your child on if you don't mind me asking? Does your child have

> > another immune disorder, or just PANDAS?

> > Hugs

> > Judy

> >

> >

> >

> >

> > ________________________________

> > From: parents4eyes <wilber04@>

> > To:

<mailto:%40yahoogroups.com>

> > Sent: Thu, July 8, 2010 1:49:35 PM

> > Subject: Anyone's child on immunosuppressants (chemo or

> > anti-TNFs) for autoimmune disease

> >

> > Â

> > A couple of the pandas doctors have talked about the possible affects of

> > immunosuppressants (low dose chemo, anti-TNFs, biologics) such as

>methotrexate,

>

> >

> >

> >

> > cellcept, or humira on pandas, but they have no patients on these. I know

>that

>

>

>

> > some pandas patients have other autoimmune diseases such as chrons disease.

I

>

> > would imagine someone's child must be on medications for those. I would like

> >any

> >

> > information that you can give me. I am also curious about the affects that

> > pandas treatments may have on the other autoimmune disease(s).

> >

> > Thank you.

> > May

> >

> >

> >

> >

> >

[Guest guest]

JRA is Juvenile Rheumatoid Arthritis.

________________________________

To:

Sent: Thu, July 8, 2010 10:45:50 PM

Subject: RE: Re: Anyone's child on immunosuppressants (chemo

or anti-TNFs) for autoimmune disease

What is JRA?

From: [mailto: ]

On Behalf Of Stormy -

Sent: Thursday, July 08, 2010 10:32 PM

To:

Subject: Re: Re: Anyone's child on immunosuppressants (chemo

or anti-TNFs) for autoimmune disease

Sorry, May. My dd doesn't have PANDAS. She had JRA but seems to have outgrown

it. She was diagnosed with JRA when she was 4 and she is now 19. She has

OCD/severe anxiety, bipolar and aspergers. She doesn't take JRA meds anymore. I

was just wondering if your dd may actually have JRA since she has the uveitis.

Good luck, Stormy

________________________________

From: parents4eyes <wilber04@... <mailto:wilber04%40yahoo.com> >

To: <mailto:%40yahoogroups.com>

Sent: Thu, July 8, 2010 10:14:46 PM

Subject: Re: Anyone's child on immunosuppressants (chemo or

anti-TNFs) for autoimmune disease

Stormy does your child also have pandas? The treatments for JRA are basically

the same as for my daughter's uveitis.

May

> >

> > HI May,

> > My son has PANDAS and chronic Lyme, so he is having a very hard time. I'm

> >hoping

> >

> > Dr.Bouboulis will give us some further advice.

> > What meds is your child on if you don't mind me asking? Does your child have

> > another immune disorder, or just PANDAS?

> > Hugs

> > Judy

> >

> >

> >

> >

> > ________________________________

> > From: parents4eyes <wilber04@>

> > To:

><mailto:%40yahoogroups.com>

>

> > Sent: Thu, July 8, 2010 1:49:35 PM

> > Subject: Anyone's child on immunosuppressants (chemo or

> > anti-TNFs) for autoimmune disease

> >

> > Â

> > A couple of the pandas doctors have talked about the possible affects of

> > immunosuppressants (low dose chemo, anti-TNFs, biologics) such as

>methotrexate,

>

> >

> >

> >

> > cellcept, or humira on pandas, but they have no patients on these. I know

>that

>

>

>

> > some pandas patients have other autoimmune diseases such as chrons disease.

I

>

>

> > would imagine someone's child must be on medications for those. I would like

> >any

> >

> > information that you can give me. I am also curious about the affects that

> > pandas treatments may have on the other autoimmune disease(s).

> >

> > Thank you.

> > May

> >

> >

> >

> >

> >

[Guest guest]

Hi May,

My son's antibiotics are suppossed to be helping all of his symptoms. What I was

referring to was he cannot take prednisone because it makes the lyme worse,

whereas most doctors use that to treat PANDAS as well.

I can defintely relate to what you  are going through.All these doctors , and

none can relate to the other!(sigh!!)

Dr. Bouboulis is an allergist, immunologist. He has treated quite a few PANDAS

cases.

I wish you luck!!!!and answers !!!

Hugs

Judy