overreacting first time mom

[Guest guest]

In Sara's post I think the phrase " overreacting first time mom " hit home.

Perhaps that should be on the list for pediatricians to look out for to test

for cf. At one point I compiled a list of symptoms for the doctor and her

response on the phone was that if I concerned myself with " every little

thing " I would drive myself crazy. This took me aback. In our case our

pediatrician had a " parenting consultant " who actually made it all even more

stressful. She was calling to check up on me all the time. I think they

thought I might have post partum depression. When I would describe what

Henry was going through and my concerns she would say, " What about you, how

are you doing? " (it seemed condescending, even then) And I realized then

that although I was exhausted, I didn't care how I was feeling. She firmly

told me in one phone conversation that I had a very good doctor and needed

to put my faith in her. At one point I looked up " failure to thrive " in

Brazelton's Touchpoints book and became concerned that I hadn't nurtured my

baby enough. And I was holding him much of the day and night!

Just wanted to share that,

mom to Henry 19.5 months with cf

Re: misdiagnosis

> My son was born with a meconium ileus and was still misdiagnosed.

> He was born 9 weeks premature with blocked intestines. His

> neonatalogist sent his newborn screen for cf testing and his test

> came back normal. A sweat test was not done and dna testing was not

> offered. We thought we were home free with the normal newborn

> screen result. Zach's first year of life was very rough. Eating

> every two hours until he was almost 4 months old, reflux, colic.

> The only thing I could do for him was hold him all the time. At his

> one year well baby check up I had it out with our pediatrician and

> had him dna tested for cf. Since then Zach is a totally different

> kid. He has learned to walk, can do sign language, and we love to

> hear him laugh.

> What I have learned from my crash course in cf is that this is a

> very rare disease. The medical community I have dealt with was very

> reluctant to admit their lack of knowlege and Zach suffered for it.

> The neonatalogist, reflux doc, and pediatrician all missed it and

> were convince I was an overreating first time mom.

> Unfortunately our story is not the only case of misdiagnosis and

> many children are misdiagnosed for years. We were lucky.

> Sara - mommy to Zach 18 months wcf

>

>

> > I posted yesterday about having my daughter tested for cf. In my

> > post I said she was put in the hospital at 4 monts with RSV. I

> > started thinking about when she was in the hospital, my dr. said

> he

> > thought she had RSV, but when they tested her she was negative for

> > RSV. So you would think all of her resperitory problems are

> because

> > of the RSV, but I'm not really sure that's what she had. Anyway,

> > were any of your children misdiagnosed with RSV, asthma, or

> something

> > else before the cf was found? Thank so much for all your help.

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

,

I have never heard of a " parenting consultant " . I think that the

doc was just lazy and didn't want to deal with sleep deprived

worried parents. Zach's doc called me the weekend of his diagnosis

to say she learned a lesson that she really needs to listen to her

parents more. Duh! Did they teach her in med school to ignore

parents?!!

Zach's NICU nurses were the same way. Every new nurse from a new

shift asked us the same question. " Is this your first? " . I was so

intimidated it took me a year to have the confidence to demand cf

testing. I wish I had been able to stand my ground much sooner. I

guess better late than never.

Sara - mommy to Zach 18 months wcf

In our case our

> pediatrician had a " parenting consultant " who actually made it all

even more

> stressful. She was calling to check up on me all the time. I think

they

> thought I might have post partum depression. When I would describe

what

> Henry was going through and my concerns she would say, " What about

you, how

> are you doing? " (it seemed condescending, even then) And I

realized then

> that although I was exhausted, I didn't care how I was feeling.

She firmly

> told me in one phone conversation that I had a very good doctor

and needed

> to put my faith in her.