Your PANDAS personal stories for ACN

[Sheila]

Hi Everyone--

 

We would like to collect your personal story in dealing with PANDAS--the background, symptoms, various treatments tried and any specific PANDAS therapy--and results. They will be used for an ACN publication to share with others.

 

Please send to me at Sheila@Latitudes.org. All communication will be kept confidential. I will be back in touch with you by email for clarification when needed. Any stories shared will be kept anonymous unless you specify otherwise.

 

To clarify a post yesterday--I am a PANDAS believer! In no way do I question that PANDAS exists and that it can be successfully treated.

 

What I am uncomfortable with is the implication of a single definitive assessment and treatment protocol at this point, because of differing opinions among those treating the condition; so much more needs to be learned. Because of that, the Forums will try to avoid endorsing a single treatment or single physician for referral purposes. This guideline applies to all Forum topics.

 

I am aware of the major medical politics involved with PANDAS -- and how frustrating it is to try to fight the system. But progress is being made, thanks in great part to determined parents such as yourselves.

 

Your stories can help! thank you, Sheila

[Worried_Dad]

Hi, Sheila:

 

Any general word length or other submission guidelines you would like us to follow?

[MomWithOCDSon]

Hey Worried Dad --

 

Writing a novel, are you?

 

Seriously, how is your son doing? We are on the same "Saving Sammy" Augmentin XR path, I believe, with our DS12 and continue to see improvement at 4 months on the abx. Are you nearing a point of prophylaxis? Do you know what dose you will attempt to step down to, if so?

 

Hi, Sheila:

 

Any general word length or other submission guidelines you would like us to follow?

[Sheila]

Hi-- Good question. I would suggest about 1200 words or less (or 4 pages double spaced in a word doc). But no hard and fast rules if you want to say more. If one writes a lot it will be edited down, but important details may emerge with longer documents, so follow your gut instinct. If it's too short I will ask for more details.

 

General ages and dates are good so we can keep track of the progression. (i.e symptoms started in the summer of 2008 [or July 2008] at age 7).

 

Most submissions will have some editing to keep them concise, or to be make sure they are comprehended by readers. Any edited article will be sent back for final approval, to make sure the finished version is OK with the writer. Also, I often need to go back to the writer for some clarification.

 

It is fine to mention doctors you went to who were not helpful, but I will not paint a specific practitioner in a bad light. For example one might say they went to the Cleveland Clinic and a doctor there did such and such-- and child had a bad reaction or it was no help--but I will not print the name of that doctor. You can tell me, but it won't be published.

 

Of course we do want to know when someone helped you, and those names will often be included. So please be sure to add that to the account.

 

Also, it is key that a patient has had a positive response for a long enough period that one feels it is a true remission. That's a bit of a judgement call, but writers should keep that in mind.

 

Thanks for writing, Sheila

[Worried_Dad]

Very helpful info, thanks! (And I'll try my best to avoid a "novel"...

 

 

Hi-- Good question. I would suggest about 1200 words or less (or 4 pages double spaced in a word doc). But no hard and fast rules if you want to say more. If one writes a lot it will be edited down, but important details may emerge with longer documents, so follow your gut instinct. If it's too short I will ask for more details.

 

General ages and dates are good so we can keep track of the progression. (i.e symptoms started in the summer of 2008 [or July 2008] at age 7).

 

Most submissions will have some editing to keep them concise, or to be make sure they are comprehended by readers. Any edited article will be sent back for final approval, to make sure the finished version is OK with the writer. Also, I often need to go back to the writer for some clarification.

 

It is fine to mention doctors you went to who were not helpful, but I will not paint a specific practitioner in a bad light. For example one might say they went to the Cleveland Clinic and a doctor there did such and such-- and child had a bad reaction or it was no help--but I will not print the name of that doctor. You can tell me, but it won't be published.

 

Of course we do want to know when someone helped you, and those names will often be included. So please be sure to add that to the account.

 

Also, it is key that a patient has had a positive response for a long enough period that one feels it is a true remission. That's a bit of a judgement call, but writers should keep that in mind.

 

Thanks for writing, Sheila

[Worried_Dad]

Hey, Mom!

 

He's doing very well - OCD contamination fears (which were utterly crippling, 3 cans of Lysol and a dozen pairs of disposable vinyl gloves a day) are basically gone. Main challenge now is memory and focus: he's struggling with homework still, which used to be easy for him.

 

Honestly, after the nightmare we were in prior to the "Saving Sammy" regimen, we're just planning to follow Sammy's example. Beth M told me he was on the 2000 mg daily XR for a full year, then 1000 mg daily for another 3. That's our plan for now, since our son's experience has coincided so much with Sammy's thus far.

 

How about you?

 

 

Hey Worried Dad --

 

Writing a novel, are you?

 

Seriously, how is your son doing? We are on the same "Saving Sammy" Augmentin XR path, I believe, with our DS12 and continue to see improvement at 4 months on the abx. Are you nearing a point of prophylaxis? Do you know what dose you will attempt to step down to, if so?

 

Hi, Sheila:

 

Any general word length or other submission guidelines you would like us to follow?

[MomWithOCDSon]

We, too, are enjoying pretty steady progress. DS12's contamination fears were very prevalent here, too, but had not progressed to the Lysol/glove stage (though if they'd been available to him, who knows?!). He still struggles with some of that, but he's managing it all much better, without the fits and meltdowns over dirt or germs or whatever. We've got him in ERP, too, to help him confront some of that.

 

He's back in school full time now, which is one very tangible sign of recovery, as he couldn't manage a single class period before! Memory doesn't seem to be a problem, but focus can be at times. Have you tried any of the ADHD non-stimulant meds, like the Straterra Sammy used? DS12 has been taking Intuniv (another non-stimulant ADHD med) for about 3 of the last 4 months, and he reports increased ability to focus while in school. Homework can be a struggle for us, as well; at first it was math, but he seems to have turned the corner on that. Now it is writing and drawing; it's never "good enough." And he gets hung up on how long the paper/poem is supposed to be, how complete the information is to be included, etc. Therapist says its the "OCD perfectionism" hanging on, and we just have to keep muscling through it.

 

Since our son was never quite at Sammy's level of dysfunctionality (at least I don't think he was, though it was pretty bad at times), I'm hoping we won't need a full year at the top XR dose. I'll follow Beth's lead and let his behaviors be our guide, I guess, so long as I can keep the pediatrician in our corner with the prescriptions!

 

Congratulations again on your progress, and continued strength and good luck! We've already sent Sheila our story, so I'm sure you'll have a great one to tell, too!

 

Hey, Mom!

 

He's doing very well - OCD contamination fears (which were utterly crippling, 3 cans of Lysol and a dozen pairs of disposable vinyl gloves a day) are basically gone. Main challenge now is memory and focus: he's struggling with homework still, which used to be easy for him.

 

Honestly, after the nightmare we were in prior to the "Saving Sammy" regimen, we're just planning to follow Sammy's example. Beth M told me he was on the 2000 mg daily XR for a full year, then 1000 mg daily for another 3. That's our plan for now, since our son's experience has coincided so much with Sammy's thus far.

 

How about you?

 

 

Hey Worried Dad --

 

Writing a novel, are you?

 

Seriously, how is your son doing? We are on the same "Saving Sammy" Augmentin XR path, I believe, with our DS12 and continue to see improvement at 4 months on the abx. Are you nearing a point of prophylaxis? Do you know what dose you will attempt to step down to, if so?

 

Hi, Sheila:

 

Any general word length or other submission guidelines you would like us to follow?

[Chemar]

bumping this up for anyone who may not have seen it and would like to submit their PANDAS story to Sheila

[thereishope]

When is the deadline?

[Sheila]

Hi Vickie, It would be good if we could have accounts by April 20. About 8 weeks from now. Thank you! Sheila