Re: Neurologist statement / Medical records

[Guest guest]

The problem we are going to run into is that all of Abby's symptoms "mimic" a progression of Mitochondrial Disease. We see her Mito Specialist again in August, who saw Abby at her worst while on miralax- hopefully, she will document the improvements she sees in August and the fact that we removed the miralax- if she does(I will ask)I can submit at that point. The other issue with tracking improvements is that we all removed gluten,corn,and dairy at the same time- which might leave room for them to blame the other allergens instead of the PEG issue.. When Abby saw her Nephrologist last she was still not at her best. But her proteins were much improved already. Though I have her PreAlbumin scores from December(they use PreAlbumin to rate a patients overall health)and Abby's was at 19- When she re

tested at the beginning of May after being off the Miralax for just 4-6 weeks her score had improved to 25. The lowest the preAlbumin score should be is 22. She will have bloodwork again in a few weeks and I am curious to see if that number has improved further.So, hopefully, I will have terrific documentation by the end of August.Diane http://mitochondrialdepletionsyndrome.blogspot.com/ To:

"miralax " <miralax > Sent: Monday, June 11, 2012 9:30 AM Subject: Neurologist statement / Medical records

A Neurologist ask me to ask the group if anyone has any medical records of any acute symptoms that were seen by any Medical Professionals to either A) send them to the FDA to include with our docket number or send to me with all their pertinent information blacked out so I can send to the FDA (HIPPA) Thanks Jeanie

[Guest guest]

Jeanie,What kind of medical records? Do you want records from our alternative doctor that says diagnosis? I have papers that say, candida, tic disorder, adrenal fatigue, anxiety, heavy metals and the list goes on! I have $40,000 and plus worth! I have tons of medical records but its from alternative doctor getting the kids better. Is that what you want?? To: miralax From: dreamjeanie@...Date: Mon, 11 Jun 2012 07:30:42 -0700Subject: Neurologist statement / Medical records

A Neurologist ask me to ask the group if anyone has any medical records of any acute symptoms that were seen by any Medical Professionals to either A) send them to the FDA to include with our docket number or send to me with all their pertinent information blacked out so I can send to the FDA (HIPPA) Thanks Jeanie

[Guest guest]

Any Doctor observing any symptoms would be great. Statements of knowledge of any kind from your Medical Professionals would be what we're looking for pertaining to any side effects they're seeing with PEG, especially if they witnessed any change in behavior, or have seen such, or know of any related info. I included a Pediatric Neurologist's statement in the petition that stated that "one cannot discount the potential side effects of PEG 3350 as they are seeing a growing number of neurological behaviors with PEG 3350 administration." Thanks To: miralax Sent: Mon, June 11, 2012 9:44:32 AMSubject: RE: Neurologist statement / Medical records

Jeanie,What kind of medical records? Do you want records from our alternative doctor that says diagnosis? I have papers that say, candida, tic disorder, adrenal fatigue, anxiety, heavy metals and the list goes on! I have $40,000 and plus worth! I have tons of medical records but its from alternative doctor getting the kids better. Is that what you want?? To: miralax From: dreamjeanie@...Date: Mon, 11 Jun 2012 07:30:42 -0700Subject: Neurologist statement / Medical records

A Neurologist ask me to ask the group if anyone has any medical records of any acute symptoms that were seen by any Medical Professionals to either A) send them to the FDA to include with our docket number or send to me with all their pertinent information blacked out so I can send to the FDA (HIPPA) Thanks Jeanie

[Guest guest]

She said it didn't matter what THEY thought it was from. She said that is irrelevant and we need to collect ALL we can. If we get enough people, no matter what they thought it was from, we can show a pattern. To: "miralax " <miralax >Sent: Mon, June 11, 2012 9:44:37 AMSubject: Re: Neurologist statement / Medical records

The problem we are going to run into is that all of Abby's symptoms "mimic" a progression of Mitochondrial Disease. We see her Mito Specialist again in August, who saw Abby at her worst while on miralax- hopefully, she will document the improvements she sees in August and the fact that we removed the miralax- if she does(I will ask)I can submit at that point. The other issue with tracking improvements is that we all removed gluten,corn,and dairy at the same time- which might leave room for them to blame the other allergens instead of the PEG issue.. When Abby saw her Nephrologist last she was still not at her best. But her proteins were much improved already. Though I have her PreAlbumin scores from December(they use PreAlbumin to rate a patients overall health)and Abby's was at 19- When she re

tested at the beginning of May after being off the Miralax for just 4-6 weeks her score had improved to 25. The lowest the preAlbumin score should be is 22. She will have bloodwork again in a few weeks and I am curious to see if that number has improved further.So, hopefully, I will have terrific documentation by the end of August.Diane http://mitochondrialdepletionsyndrome.blogspot.com/ To:

"miralax " <miralax > Sent: Monday, June 11, 2012 9:30 AM Subject: Neurologist statement / Medical records

A Neurologist ask me to ask the group if anyone has any medical records of any acute symptoms that were seen by any Medical Professionals to either A) send them to the FDA to include with our docket number or send to me with all their pertinent information blacked out so I can send to the FDA (HIPPA) Thanks Jeanie

[Guest guest]

I believe it's 6 months they have to review the petition so we need to get everything there while they're reviewing it before they make a decision. Jeanie To: miralax Sent: Mon, June 11, 2012 9:57:18 AMSubject: Re: Neurologist statement / Medical

records

She said it didn't matter what THEY thought it was from. She said that is irrelevant and we need to collect ALL we can. If we get enough people, no matter what they thought it was from, we can show a pattern. To: "miralax " <miralax >Sent: Mon, June 11, 2012 9:44:37 AMSubject: Re: Neurologist statement / Medical records

The problem we are going to run into is that all of Abby's symptoms "mimic" a progression of Mitochondrial Disease. We see her Mito Specialist again in August, who saw Abby at her worst while on miralax- hopefully, she will document the improvements she sees in August and the fact that we removed the miralax- if she does(I will ask)I can submit at that point. The other issue with tracking improvements is that we all removed gluten,corn,and dairy at the same time- which might leave room for them to blame the other allergens instead of the PEG issue.. When Abby saw her Nephrologist last she was still not at her best. But her proteins were much improved already. Though I have her PreAlbumin scores from December(they use PreAlbumin to rate a patients overall health)and Abby's was at 19- When she re

tested at the beginning of May after being off the Miralax for just 4-6 weeks her score had improved to 25. The lowest the preAlbumin score should be is 22. She will have bloodwork again in a few weeks and I am curious to see if that number has improved further.So, hopefully, I will have terrific documentation by the end of August.Diane http://mitochondrialdepletionsyndrome.blogspot.com/ To:

"miralax " <miralax > Sent: Monday, June 11, 2012 9:30 AM Subject: Neurologist statement / Medical records

A Neurologist ask me to ask the group if anyone has any medical records of any acute symptoms that were seen by any Medical Professionals to either A) send them to the FDA to include with our docket number or send to me with all their pertinent information blacked out so I can send to the FDA (HIPPA) Thanks Jeanie

[Guest guest]

What's the address to send them to? And what's the docket #?

I can ask my daughter's behavioral therapist to send the record of my daughters

dramatic improvement after stopping Miralax.

Sara

jeanie ward wrote:

>A Neurologist ask me to ask the group if anyone has any medical records of any

>acute symptoms that were seen by any Medical Professionals to either A) send

>them to the FDA to include with our docket number or send to me with all

>their pertinent information blacked out so I can send to the FDA (HIPPA)

>

>

>

>Thanks

>Jeanie

[Guest guest]

give me a minute for the docket number To: miralax Sent: Mon, June 11, 2012 2:06:14 PMSubject: Re: Neurologist statement / Medical records

What's the address to send them to? And what's the docket #?

I can ask my daughter's behavioral therapist to send the record of my daughters dramatic improvement after stopping Miralax.

Sara

jeanie ward wrote:

>A Neurologist ask me to ask the group if anyone has any medical records of any

>acute symptoms that were seen by any Medical Professionals to either A) send

>them to the FDA to include with our docket number or send to me with all

>their pertinent information blacked out so I can send to the FDA (HIPPA)

>

>

>

>Thanks

>Jeanie