my letter

[Guest guest]

We are one very articulate mob, aren't we?

Connie

[Guest guest]

You know, this got me thinking. Dr. Mark Widome is also a medical contributor

to the Today show and I know him personally. Maybe I should give him a call and

see if he can get on there and talk about what happens AFTER the pregnancy.

He's seen Jordan in his office before and could most likely offer some

additional input on the subject.

Opinions anyone?

Judi - Proud mother to Jordan 7, ds and Savannah 5 Months, nda

Ambition is a poor excuse for not having enough

sense to be lazy.

Re: My Letter

We are one very articulate mob, aren't we?

Connie

[Guest guest]

I think it's a swell idea. There certainly is no shortage of kids and

families with a Down influence to pull from.

Connie

[Guest guest]

awesome letter Patti-

very diplomatic and to the point-if the doc does not respond to this then I

would consider finding a new doc---

Sue Petrelli

mom to w CVID

Pattie Curran <catholicmomof3@...> wrote:

Let me know what you think.........

Dear Dr.,

I fully realize that you are busy and have many other patients. I do not

want to impose by asking you questions. We have many doctors visits

scheduled in the upcoming weeks and I was hoping to get some answers prior

to our visits with the boys' other specialists. While we are not seeing

them because of the DEXA scan results, we obviously need to bring it up and

discuss it with them to see if there is anything that might be done in their

particular discipline. For instance, Monday, August 14, 2006 we see the GI

and I would like to have a better understanding of how mild or severe

and ph's osteoporosis may be. I want to ask him if there may be a

pancreatic insufficiency component and, perhaps, some sort of supplement to

help the boys have better calcium absorption. The treatment plan in any

given specialty is going to depend on the interpretation of the DEXA scan

results. You are the expert on DEXA scans in children.

Last Friday, August 4, 2006, S called me to say that the boys both had

osteoporosis and could not play football. While I appreciate her calling to

let me know, I have to say that I am disappointed that she did not have the

numbers and other information available that day. This is the first time

that a nurse has ever called with abnormal results. In our past

experiences, the boys' physicians have always called to discuss any abnormal

results with me and given me a chance to ask any questions I might have

regarding the results..

I left a message with questions and have not had them answered. If you find

it easier to communicate via letter, please feel free to correspond with me

in that manner. If you are able, you may use email. My email address is

catholicmomof3@ <mailto:catholicmomof3@...> earthlink.net or you

may call me at 336-XXXXXXXX . You may also send a fax, provided I know it

is coming and can turn the machine on. I realize that you have only met me

one brief time and may not understand my need to get the details and fully

understand the diagnoses my children have been given.

I have several questions to be answered. I realize the boys cannot play

football. 's report clearly sates that he has diminished bone density,

while ph's says that the bone density in his spine is normal for his age

without noting anything about the femoral density. My question for you is:

Do the numbers tell you something that the radiologist's impression doesn't

say in the report?

I also would like to know at what T-score a child is considered to have

osteoporosis. I realize that the T-score compares them to an adult of the

same sex. So I am at a loss at as to how to compare the data of a -2.5

T-score in an adult being osteoporosis to a child. I realize that the

z-score is the score which compares the child to a child of his same age,

and that z-scores are not available for the femur at their ages. Could you

explain the numbers to me? Do they have mild osteoporosis, moderate or

severe? I am at a loss as to how a -4.6 T-score and a -4.3 T-score

compares. Also, if you use the Z-score to define osteoporosis in children,

could you explain the values to me. I know you said that UNC has

established normal in children, but I am unable to find the published data

anywhere.

Our boys will see their hematologist, Dr. hem, on September 7, 2006 for

their routine follow-up appointments. Dr. hem has agreed to order the blood

tests needed on that day to keep the boys from having more than one blood

draw. I would appreciate if you would give me a list of blood tests you

feel need to be run on the boys. Our pediatrician already has a list (the

one I showed you the day of our visit), but in light of the test results, I

feel we need to find out what your thoughts are on this matter.

Is the osteoporosis mild enough that we do not need to worry about any sort

of treatment? Or is it severe enough that we need to consider our options?

If we need to consider treatment options, please elaborate.

Do you feel we need to follow up with an endocrinologist or will it suffice

just getting Dr. hem to run the appropriate blood tests?

I have already contacted many of the leading SDS researchers. Some of the

information they have provided is quite interesting. Dr.C, who published

the Skeletal phenotype in patients with SDS article I sent to you, as well

as Dr. Xhave some interesting information.

For instance, Dr. and the XXXXteam have showed that the type of decrease in

BMD in patients with SDS is due to a primary defect in bone formation and

not due to excessive reabsorption. Because of this, biphosphonate therapy

(anti-resorptive therapy) would not work well in SDS patients for whom this

proves to be true. Which then brings me to another question:

How do and ph's internal tooth resorption problems fit into the

equation? Does this mean that they are losing BMD due to bone reabsorption?

Last year at the Neutropenia Network Conference, the researchers there said

that they have found a link between osteoporosis and neutropenia that does

not involve the use of G-CSF (Neupogen). Where they used to think the

osteoporosis was due to the patient's use of G-CSF , they are finding that

many neutropenic patients and/or patients with bone marrow dysfunction end

up having osteopenia and osteoporosis. Do you know anything about this

connection?

Finally, XXXX et al theorize that osteoporosis in SDS patients is likely a

result from a primary defect in bone metabolism that is related to the bone

marrow dysfunction and neutropenia. The malabsorption (Pancreatic

insufficiency) may be an additional risk factor for osteoporosis in SDS

patients, as well. Do you feel that and ph's bone marrow

dysfunction could be playing a role in their decreased BMD?

Thank you in advance for taking the time to answer my questions. I look

forward to your answers.

Sincerely,

Pattie Curran

CC:ped, MD

hem, MD

GI, MD

[Guest guest]

LOL-we've already fired one ortho, so what's firing another? <roaring

laughter> There's a long wake of fired docs here at our house..

Peace Be With You,

Pattie

A True friend knows your weaknesses but shows you your strengths; feels your

fears but fortifies your faith; sees your anxieties but frees your spirit;

recognizes your disabilities but emphasizes your possibilities. ~

Arthur Ward

[Guest guest]

Pattie,

I'm sorry you're having to go through all of this. Your letter is great!

Let us know what you find out.

Take care,

Mom to Conner (12, unknown combined immune deficiency, lymphadenopathy,

asthma,

Hashimoto's disease and resolved adrenal insufficiency),

Hayden (12, unknown immune deficiency, IBS and moderate hearing loss/aided),

Evan (12, unknown immune deficiency, asthma and mild hearing loss/unaided),

and Kelsey - (10, unknown immune deficiency and asthma)

Please visit us at www.caringbridge.org/in/connersmith

[Guest guest]

Thanks to all who responded about my letter to the trib. It has not been

published as far as I know. I think they call you if they publish. I am

spreading it around the net and will do some blogging on the topic. I am not

going to shut up. I am mad as hell and I am not going away. Nora

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