Re: Positive Anne Connolly

[Guest guest]

Sorry but what is Positive Anne Connolly?To: mb12 valtrex Sent: Fri, July 23, 2010 11:16:40 AMSubject: Positive Anne Connolly

For those who have positive Anne Connolly, what was you best intervention to address the immune disregulation? Was it IVIG or something else? We have been using transfer factor a for while now, but we are not seeing too much.

[Guest guest]

I mean his Anne Connolly test came back positive.

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> Sorry but what is Positive Anne Connolly?

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> To: mb12 valtrex

> Sent: Fri, July 23, 2010 11:16:40 AM

> Subject: Positive Anne Connolly

>

>

> For those who have positive Anne Connolly, what was you best intervention to

> address the immune disregulation? Was it IVIG or something else? We have been

> using transfer factor a for while now, but we are not seeing too much.

>

[Guest guest]

Arpita, we started spironolactone for brain inflammation after a positive AC (my son is IgM pos) then did EEG to look for possible absence seizures (highly correlated), saw a LKS specialist in Boston-he wasn't interested in treating us because my son didn't fit the LKS regression timing. The EEG was normal but I knew my child was having seizures so we did the SPECT-sure enough, 3 seizures in 10 mins! So, we put him on Lamictal, very slow ramp up (8 months) and got to full theraputic dose-beautiful gains, a wow intervention for us. My DAN tends to think theses 4 interventions will be most important with an AC pos kid - steroids, Seizure med (if seizures present), HBOT, and IVIG, not in that order and of course depending on the child and families preferences. We begin HBOT next week. Sorry, I answered your question sort of indirectly but wanted to give you our experience. Good luck, Alison M Positive Anne Connolly For those who have positive Anne Connolly, what was you best intervention to address the immune disregulation? Was it IVIG or something else? We have been using transfer factor a for while now, but we are not seeing too much.

[Guest guest]

IVIG

Pamela

From:

mb12 valtrex [mailto:mb12 valtrex ] On Behalf

Of Arpita

Sent: Friday, July 23, 2010 2:17 PM

To: mb12 valtrex

Subject: Positive Anne Connolly

For those who have positive Anne Connolly, what

was you best intervention to address the immune disregulation? Was it IVIG or

something else? We have been using transfer factor a for while now, but we are

not seeing too much.

[Guest guest]

We too used Transfer Factor with no results other than emotional sadness. My ds

has a positive AC IgG test...IVIG is working best for us thus far-biggest Wow.

We are going on round three...

HTH,

Kersten

www.thefarrellfoundation.org

www.chicagonow.com/fightingautism

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> For those who have positive Anne Connolly, what was you best intervention to

address the immune disregulation? Was it IVIG or something else? We have been

using transfer factor a for while now, but we are not seeing too much.

>

[Guest guest]

Alison,

Thanks for your reply. Can you tell me how soon you started seeing the benefits

of Lamictal? We are titrating up on it too. But we are not seeing too much. I

would say we are already at 80% of full dose.

We did HBOT too but didn't see too much.

I have been debating IVIG. It is expensive. And more importantly, DS does not

have immune deficiency(of course he shows the signs of hyperimmunity). What is

the best way to get it covered by insurance?

Best regards,

Arpita.

>

> Arpita, we started spironolactone for brain inflammation after a positive AC

(my son is IgM pos) then did EEG to look for possible absence seizures (highly

correlated), saw a LKS specialist in Boston-he wasn't interested in treating us

because my son didn't fit the LKS regression timing. The EEG was normal but I

knew my child was having seizures so we did the SPECT-sure enough, 3 seizures in

10 mins! So, we put him on Lamictal, very slow ramp up (8 months) and got to

full theraputic dose-beautiful gains, a wow intervention for us. My DAN tends to

think theses 4 interventions will be most important with an AC pos kid -

steroids, Seizure med (if seizures present), HBOT, and IVIG, not in that order

and of course depending on the child and families preferences. We begin HBOT

next week. Sorry, I answered your question sort of indirectly but wanted to give

you our experience. Good luck, Alison M

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> Positive Anne Connolly

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> For those who have positive Anne Connolly, what was you best intervention to

address the immune disregulation? Was it IVIG or something else? We have been

using transfer factor a for while now, but we are not seeing too much.

>

[Guest guest]

We received my son's Anne Connolly results today. His result was negative. I attached the result here if someone is interested to see what it is and more info.

 

Thanks

 

For those who have positive Anne Connolly, what was you best intervention to address the immune disregulation? Was it IVIG or something else? We have been using transfer factor a for while now, but we are not seeing too much.

[Guest guest]

and this Spect scan that can show seizures, this is only advised to do through

Dr G is that correct, as its a different SPect more advanced alltogether?

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> > Arpita, we started spironolactone for brain inflammation after a positive AC

(my son is IgM pos) then did EEG to look for possible absence seizures (highly

correlated), saw a LKS specialist in Boston-he wasn't interested in treating us

because my son didn't fit the LKS regression timing. The EEG was normal but I

knew my child was having seizures so we did the SPECT-sure enough, 3 seizures in

10 mins! So, we put him on Lamictal, very slow ramp up (8 months) and got to

full theraputic dose-beautiful gains, a wow intervention for us. My DAN tends to

think theses 4 interventions will be most important with an AC pos kid -

steroids, Seizure med (if seizures present), HBOT, and IVIG, not in that order

and of course depending on the child and families preferences. We begin HBOT

next week. Sorry, I answered your question sort of indirectly but wanted to give

you our experience. Good luck, Alison M

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> > For those who have positive Anne Connolly, what was you best intervention

to address the immune disregulation? Was it IVIG or something else? We have been

using transfer factor a for while now, but we are not seeing too much.

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[Guest guest]

We did ours in March from the same place. We go to Dr.Rossignol too. I think

Lifebridge has changed their name and they are back again.

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> > > Arpita, we started spironolactone for brain inflammation after a positive

AC (my son is IgM pos) then did EEG to look for possible absence seizures

(highly correlated), saw a LKS specialist in Boston-he wasn't interested in

treating us because my son didn't fit the LKS regression timing. The EEG was

normal but I knew my child was having seizures so we did the SPECT-sure enough,

3 seizures in 10 mins! So, we put him on Lamictal, very slow ramp up (8 months)

and got to full theraputic dose-beautiful gains, a wow intervention for us. My

DAN tends to think theses 4 interventions will be most important with an AC pos

kid - steroids, Seizure med (if seizures present), HBOT, and IVIG, not in that

order and of course depending on the child and families preferences. We begin

HBOT next week. Sorry, I answered your question sort of indirectly but wanted to

give you our experience. Good luck, Alison M

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> > > For those who have positive Anne Connolly, what was you best intervention

to address the immune disregulation? Was it IVIG or something else? We have been

using transfer factor a for while now, but we are not seeing too much.

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