Re: dd update-its PANDAS-luck with anibiotics for mycoplasma?

[Guest guest]

hi!

 

dd is pretty bad-most days cant get dressed, has not been to school since

begininng of Sept when this hit hard--she was pretty much debilitated- has lots

of uncontrollable fears and episodes of emotional liabilty/all symptoms get

worse at night (-Dr. says shes too old (13) and been out of school too long to

mess around with antibiotics.)  She did become somewhat functional when on

steroids, attempted to read, cleaned out her closet,got dressed on her own and

stayed dresses until bedtime, was able to go to the mall and shop, baked

cookies ect and wanted to participate with family & life. Unfortunately, the

scary stuff has been comming back since steroids have worn off.   Im not

opposed to antibiotics at all.  Just dont know anyone who did the antibitics. 

Would love to hear from someone who did but since this OCD/Pandas has pretty

much stolen her life since August, I feel like my dd has suffered enough. 

 Have a meeting with him on

Friday to go over all so Im trying to get all my questions together.  And he

is the only PANDAS dr. in the state but a Very Good One according to some other

PANDAS parents. 

 

Once again if anyone has any luck with antibiotics for mycoplasma based PANDAS,

I'd love to hear from them.

 

Thanks for the idea for teeth brusing-- I will definitly have her try it!

 

________________________________

To:

Sent: Sunday, January 8, 2012 2:00 PM

Subject: Re: dd update-its PANDAS

 

Hi , glad you have a definite path to treatment now. Do keep us updated.

Question - any reason for the IVIG now as opposed to trying just some long-term

antibiotics or other first?

Teeth - would she just use her finger to brush? When my twins were younger than

her, at one point ...and maybe too, would let me use a thin

washcloth dipped in ACT to brush/wipe their teeth.

>

> Hello Everyone!  Happy New Year to You all!

>  

> I wanted to give everyone an update on my (13 year olds) dd progress.  She

was clobbered with a very debilitaing, sudden onset case of OCD in September

2011. (Tested high w/ Micoplasma in November)  SSRI Meds helped somewhat but

she had a bad reaction when we tried to increase the dosage and after reaching

out and hearing from many of the wonderful people in this group we

ended  contacting and getting in to see Dr. K in Hinsdale, IL who put her on

a steroid burst in December. (At the time I was ready to have her attend an

[Guest guest]

hi!

 

dd is pretty bad-most days cant get dressed, has not been to school since

begininng of Sept when this hit hard--she was pretty much debilitated- has lots

of uncontrollable fears and episodes of emotional liabilty/all symptoms get

worse at night (-Dr. says shes too old (13) and been out of school too long to

mess around with antibiotics.)  She did become somewhat functional when on

steroids, attempted to read, cleaned out her closet,got dressed on her own and

stayed dresses until bedtime, was able to go to the mall and shop, baked

cookies ect and wanted to participate with family & life. Unfortunately, the

scary stuff has been comming back since steroids have worn off.   Im not

opposed to antibiotics at all.  Just dont know anyone who did the antibitics. 

Would love to hear from someone who did but since this OCD/Pandas has pretty

much stolen her life since August, I feel like my dd has suffered enough. 

 Have a meeting with him on

Friday to go over all so Im trying to get all my questions together.  And he

is the only PANDAS dr. in the state but a Very Good One according to some other

PANDAS parents. 

 

Once again if anyone has any luck with antibiotics for mycoplasma based PANDAS,

I'd love to hear from them.

 

Thanks for the idea for teeth brusing-- I will definitly have her try it!

 

________________________________

To:

Sent: Sunday, January 8, 2012 2:00 PM

Subject: Re: dd update-its PANDAS

 

Hi , glad you have a definite path to treatment now. Do keep us updated.

Question - any reason for the IVIG now as opposed to trying just some long-term

antibiotics or other first?

Teeth - would she just use her finger to brush? When my twins were younger than

her, at one point ...and maybe too, would let me use a thin

washcloth dipped in ACT to brush/wipe their teeth.

>

> Hello Everyone!  Happy New Year to You all!

>  

> I wanted to give everyone an update on my (13 year olds) dd progress.  She

was clobbered with a very debilitaing, sudden onset case of OCD in September

2011. (Tested high w/ Micoplasma in November)  SSRI Meds helped somewhat but

she had a bad reaction when we tried to increase the dosage and after reaching

out and hearing from many of the wonderful people in this group we

ended  contacting and getting in to see Dr. K in Hinsdale, IL who put her on

a steroid burst in December. (At the time I was ready to have her attend an

[Guest guest]

Hi ,

I'm sorry to hear about how your daughter is suffering so much. Her symptoms

sound exactly like my son's - couldn't get dressed, wouldn't shower, brush his

teeth, had extreme separation anxiety and would constantly get stuck in

repetitive processes. For him, Azithromycin helped a lot, but it eventually

stopped working for him after about 7 months.

Last fall we started homeopathy and have slowly weaned him off of antibiotics.

We started giving him his constitutional remedy last October and since then his

symptoms have pealed away one layer at a time. It has been amazing! He's now

95-100% most days and when he starts to slide back we give him another dose of

his remedy (which is usually about every 5-7 days). He's the first to admit

that it helps him. For him, I think being on long term antibiotics stirred up

digestive issues which complicated matters and hindered his immune response. It

seemed like a viscous cycle.

The ultimate test of homeopathy was when he was recently exposed to strep and he

had only a minor pandas flare which we were able to treat with homeopathy alone

(his constitutional remedy and a strep nosode which the entire family took). I

am now starting to treat my second son with homeopathy because we highly suspect

he too suffers from PANDAS. It's nice not to have an official diagnosis to

begin treatment with homeopathy because they treat the symptoms themselves -

they don't need a name for them.

We have skype consults with Dr. Lemke. She has helped many PANDAS and

autistic children. So far we are extremely pleased with her. Feel free to

contact me if you want any more information.

Best wishes,

Vicky

> >

> > Hello Everyone!  Happy New Year to You all!

> >  

> > I wanted to give everyone an update on my (13 year olds) dd progress. 

She was clobbered with a very debilitaing, sudden onset case of OCD in

September 2011. (Tested high w/ Micoplasma in November)  SSRI Meds helped

somewhat but she had a bad reaction when we tried to increase the dosage and

after reaching out and hearing from many of the wonderful people in this

group we ended  contacting and getting in to see Dr. K in Hinsdale, IL who

put her on a steroid burst in December. (At the time I was ready to have her

attend an

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