Re: medical records Laurie

[Guest guest]

In a message dated 2/11/04 3:09:58 PM Central Standard Time,

writes:

> We get in usually because Mic is considered High Risk I never knew before

> only in heart failure.He is just normally high riskI guess news to me.I would

> like to read his files sometime can I do that?I must beable to do

> that.Sending you hugs too Irma Laurie

>

>

Laurie,

I just called the hosp. and asked for medical records. I told them that I

wanted copies of some of his previous tests but wanted to look through his

records to pick out what I wanted copied. We set a day and time and I went in

and

looked.

Karyn

[Guest guest]

In a message dated 2/13/2004 9:13:19 AM Eastern Standard Time,

KVanRyzin@... writes:

I just called the hosp. and asked for medical records. I told them that I

wanted copies of some of his previous tests but wanted to look through his

records to pick out what I wanted copied. We set a day and time and I went in

and

looked.

Exactly right Karyn. Mic's records are open to parents. I went to

Maddie's peds office one time and they handed me her file and I just copied (on

their

machine) anything that I didn't already have. When we have kids who go

through so many procedures, tests, hospital stays, doc visits, and surgeries, it

can be hard to make sure you have it all. So a trip to the pedi (who in our

case gets a copy of everything) should get you all reports at once.

Donna

[Guest guest]

Mic being a high risk due to his heart issues are true. There are different

types of heart disorder in Down syndrome: Atriventricular septal defect (AVSD),

Partial AVSD, Complete AVSD, Ventricular septal defect (VSD), Patent ductus

arteriosus (PDA), Eisenmenger complex, & Tetralogy of Fallot. Which one did Mic

have?

Please contact and request for copies of his medical records and always remember

to ask for it from here and on at all appts. so that you will not have to back

track. It is also good idea to start keeping records of all his medical records

because sometimes this is also required for future services when applying for

anything related to his medical needs especially when he turns 18. This will

ease some of the emotional stress having it documented when asked. You could

even have his new doc request for it with your consent.

I'm so happy to hear the latest news on the new doc seen Thursday. It is

important to find professionals that you are comfortable with, who treat parents

as partner.

What I'm learning to look for those who openly share information, who see

parents as their child's main advocate, who want parents empowered with

knowledge. Beware of four types of professionals:

* Those who want to hold their knowledge like a hand of cards so that they are

always in control.

* Those who make blanket statements using words such as always and never as in

" children like this never... " (especially after only being with your child for a

brief period)

* Those who say " but we have always done it this way... "

* Those who are more interested in your money than your child.

The things we have to remember on those professionals who are not open to

working with parents as partners are not worth my time. This is one of the

reasons why I'm happy to hear on the turn out.

Another issue that I've enjoyed reading is on how you and your dh are tackling

this situation as a partnership. Remember as time passes and your expertise with

Mic grows, it will become easier to cope, both practically and emotionally.

Just thought I ahre this info,

Prevention of endocarditis: Down syndrome the Facts: Mark Selikowitz

Precautions should be taken when a child with any of the heart defects mentioned

above has an operation, particularly in an area where bacteria are present.

These areas include the mouth (dental manipulations such as extraction or

drilling) and the bladder (urological procedures). Such operations may allow

bacteria to enter the blood stream. If there is a heart defect, the abnormal

blood flow through the heart may encourage bacteria to multiply, and cause an

infection within the heart (endocarditis). To prevent this, antibiotics should

be given 1 hour before such procedures to kill these bacteris as soon as they

enter the bloodstream. Antibiotics should not be given too long before the

procedure, or resistant strains of bacteria will have time to develop. The best

way to avoid the need for dental procedures is by regular dental checks, and

conscientious flossing and cleaning of teeth.

Sorry did not want to add to your challenges.

Hugs!

Irma,15,Ds/ASD

Re: medical records Laurie

In a message dated 2/11/04 3:09:58 PM Central Standard Time,

writes:

> We get in usually because Mic is considered High Risk I never knew before

> only in heart failure.He is just normally high riskI guess news to me.I

would

> like to read his files sometime can I do that?I must beable to do

> that.Sending you hugs too Irma Laurie

>

>

Laurie,

I just called the hosp. and asked for medical records. I told them that I

wanted copies of some of his previous tests but wanted to look through his

records to pick out what I wanted copied. We set a day and time and I went in

and

looked.

Karyn

[Guest guest]

I once needed a copy of testing from the hospital. They would not give

it to me BUT if I wanted to come in I could pay $15 and get the whole

record!! We have gone in and looked at school records. One year Garry

called the school nurse a AH cause she knew nothing about autsim and

did seem to want to learn. She wrote a whole page on the incident. We

laughed.

On Friday, February 13, 2004, at 10:37 AM, duffey48@... wrote: