Still More Questions

June 19, 2006

>

> Any advice or similar experiences would be appreciated. I feel like I

> am paddling upstream over here. (PS-Cole had his EGD last week and it

> showed some problems. We should be hearing from the GI this week for

> test results from that.)

>

Rogena -- no advice -- just keep up the good work. Stay on top of your

child's needs. No one fights for our kids but us -- so keep up the hard

work -- hopefully, you will get answers.

In His service,

dale

June 19, 2006

Rogena,

how frustrating to be given conflicting information. I found a website that

explains some of the patient rights according to the HIPPA laws

http://www.hhs.gov/ocr/hipaa/consumer_rights.pdf

My eldest daughter is a legal secretary for the County Mental Health where we

live and familiar with HIPPA laws. I told her someone was having trouble

obtaining access to their child's medical records. This is what she sent me:

" HIPAA is a federally enforced law, there are also state specific laws regarding

medical records and disclosure. I would look into those as well.

The DEPARTMENT OF HEALTH AND HUMAN SERVICES is a federal website with endless

info on your rights as they pertain to this issue.

I would suggest you ask to speak with your doctor's PRIVACY OFFICER. Find out

where you should send a WRITTEN request (all requests MUST be in writing) for

PHI (private health info)/medical records. Your written request will be kept in

your medical records. Your doctor must supply your records within 30 days. (60

if the records are in storage or are otherwise unavailabe for immediate review).

Copying and mailing fee's may be assesed.

You can also request a copy of the HIPAA forms you signed, informing you of

your rights. Again, your doctor's PRIVACY OFFICER should be able to help you

with that.

Finally, if all else fails, you can file a complaint with the DHHS. Carefully

worded threats along those lines might compel your doctor to provide the info

your looking for. Be sure to use keywords like PHI, HIPAA law, Department of

Health & Human Services, etc.

With a few exceptions, such as mental health records, you're entitled to review

your records (or your childs). If nothing else, you're entitled to a copy of

your records (in addition to a copy sent to the doctor providing the second

opinion) to obtain a second opinion. "

Hope this helps.

mom CVIDer

nogirlsallboys <mrlbrinks@...> wrote: After 2

months of requesting, I finally got a copy of Cole's last lab

results from March. I had requested a letter from the Immuno and a

copy of the lab results so that I could get my son linked up with CSHS

here in MI.

When I called the end of last week to see where the letter and lab

results were the Immuno's nurse came on the phone and said that there

was a note from the Dr. posted in Cole's chart that said to " tell Mom

that Cole is fine. All his bloodwork came back normal. He is no

longer def. " HUH??????????

I was confused and asked the nurse why on earth I had been given

opposite information in April from the Dr. I had been told to keep him

on the ABX to prevent bacterial infections. I was also asked to keep

him out of preschool this coming fall and start him on probiotics. I

asked her why I was asked to do all this to a " normal " child? She put

me on hold, spoke with the Dr., and came back on the phone and told me

that the Immuno wanted to see Cole and me right away (June 30)

regarding this matter. She said he also gave specific instructions to

keep him on the ABX. Well, DUH....Obviously my son has SOMETHING

WRONG!!!!! Otherwise, why would the Dr. make him stay on the ABX.

So the next morning I get a copy of the lab tests in the mail. Only

the IgG portion. I did not get a copy of the IgA levels. I called

the office this morning and asked yet again for a full copy of the lab

results. The nurse said that I may have to wait until after our

office visit. HUH????? Excuse me, but I think as my son's mother I

am privy to the information aren't I?

Any advice or similar experiences would be appreciated. I feel like I

am paddling upstream over here. (PS-Cole had his EGD last week and it

showed some problems. We should be hearing from the GI this week for

test results from that.)

-Rogena (Mom to 4 boys, including Cole -Partial Selective IgA Def,

GERD, possible Celiac)

__________________________________________________

June 20, 2006

Thanks, ! I have checked into some of this and know that I am

within my rights to request this information. Now if only I could

get the dr. to comply in a more timely, thorough fashion.... Thanks

fot the encouragement!

-Rogena (Mom to 4 boys, including Cole -Partial Selective IgA Def,

GERD, possible Celiac)

After 2 months of requesting, I

finally got a copy of Cole's last lab

> results from March. I had requested a letter from the Immuno and

a

> copy of the lab results so that I could get my son linked up with

CSHS

> here in MI.

>

> When I called the end of last week to see where the letter and

lab

> results were the Immuno's nurse came on the phone and said that

there

> was a note from the Dr. posted in Cole's chart that said to " tell

Mom

> that Cole is fine. All his bloodwork came back normal. He is no

> longer def. " HUH??????????

>

> I was confused and asked the nurse why on earth I had been given

> opposite information in April from the Dr. I had been told to

keep him

> on the ABX to prevent bacterial infections. I was also asked to

keep

> him out of preschool this coming fall and start him on

probiotics. I

> asked her why I was asked to do all this to a " normal " child?

She put

> me on hold, spoke with the Dr., and came back on the phone and

told me

> that the Immuno wanted to see Cole and me right away (June 30)

> regarding this matter. She said he also gave specific

instructions to

> keep him on the ABX. Well, DUH....Obviously my son has SOMETHING

> WRONG!!!!! Otherwise, why would the Dr. make him stay on the ABX.

>

> So the next morning I get a copy of the lab tests in the mail.

Only

> the IgG portion. I did not get a copy of the IgA levels. I

called

> the office this morning and asked yet again for a full copy of

the lab

> results. The nurse said that I may have to wait until after our

> office visit. HUH????? Excuse me, but I think as my son's

mother I

> am privy to the information aren't I?

>

> Any advice or similar experiences would be appreciated. I feel

like I

> am paddling upstream over here. (PS-Cole had his EGD last week

and it

> showed some problems. We should be hearing from the GI this week

for

> test results from that.)

>

> -Rogena (Mom to 4 boys, including Cole -Partial Selective IgA

Def,

> GERD, possible Celiac)

>

> __________________________________________________

>

May 17, 2009

I used to keep my kt in a cupboard near my freezer, but after reading a

website that scared me half to death, lol, which said that there is not

enough oxygen in a cupboard for kombucha even if you prop the door ajar, I

now keep it on top of my freezer. Those videos from youtube helped me feel

better about brewing in general, but I have to ask - where do you all store

your brewing jar(s)? I liked the cupboard, as it was out of the way and my

kt formed new scobies. I am noticing that on the freezer new scobies are

not forming as much, probably because every time I open the freezer it

shakes the jar slightly. Can I put it back in the cupboard or is that

really not recommended?

Also, I am trying a second ferment for fizz in a small pop bottle. Has

anyone ever tried using old vinegar bottles for that? Would they be any

stronger than mason jars? (I know I should still put them in another

container when leaving them at room temperature to increase fizz, just in

case they should explode - is a spare cooler sufficient for that?) I have a

clear one from Heinz vinegar and a couple of amber ones from Eden.

http://www.edenfoods.com/store/product_info.php?cPath=27_53 & products_id=103500

Thanks,

Polly

May 17, 2009

Someone forgot to inform the KT that it can't grow in a cupboard - lol. Put it

wherever u want and u will soon know if it likes th spot you've chosen. I've

used all manner of jars for second ferment. Just give it a try using safety

precautions and u shoild be fine.

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