[tri-med] Re: pneumonia

Yup, Tierney is always crackly in her throat/nose.  We call it snarfy. 
It gets much worse when she has a cold.

Doctors...duh. I can just hear that ignoramus calling your pediatrician 
to enlighten him on T 18.

Tierney had a CXR when she was in NICU--apnea remember. They discovered 
she only has 11 ribs, they were scratching their heads over that. But 
the lungs looked great. We have not had one since. Hoping we don't have 
to.

Mimi (wife to Doug, Mommy to Reilly 8, Keegan 6 and Tierney T18 8 
months)
Chicago
On Jan 30, 2004, at 2:29 PM, Debbie wrote:

> When Claire as only a few months old, we went for chest x-rays - 
> thinking pneu.
> When we went in, the tech asked if she had any special problems... I 
> told
> them she had Trisomy 18... had to spell trisomy as she never heard of 
> it.
>
> Later, Claire's ped called to speak with me... said the xrays showed 
> she
> was clear, but he got a chuckle that the dr reviewing the xrays wanted 
> our
> ped to know that he looked up Trisomy 18 and told ped that there were
> likely severe complications related to the disorder... yada, yada.
> Then our ped said the dr acted almost 'ticked' to be able to review a 
> full
> T18 baby's xrays.
> That was one weird day... explains a lot, like why it took so long to 
> get
> our results.
>
> Claire is always making a gurgling and cracking noise... when you 
> listen to
> her chest, it isn't in there, guess it is just in her throat.
>
> Debbie, mom to Baby Claire (full T18 and 10 months old)
> http://www.debbwebb.com/Claire/
>
> At 02:53 PM 1/30/2004 -0500, you wrote:
>
>>   OH!  I just remembered!  Our visiting nurse thought she heard a 
>> crackling
>> in Caroline's lungs a few months back (she was vomiting a lot and we 
>> were
>> concerned about aspiration).  The dr's at the Children's hospital 
>> were very
>> concerned and had us get a chest x-ray at a local hospital that day 
>> even
>> though Caroline had no other symptoms or problems.  Luckily, she was 
>> fine
>> and her lungs were clear, but there was no question in their minds as 
>> to
>> whether the x-ray was necessary.  So, I guess I would probably push 
>> for one
>> if I was in your shoes.  I would want to know for sure!!!!!
>>
>>   Irene
>>   (Christina - 27 months and Caroline - 7 months with partial trisomy 
>> 17p)
>>   http://www.babiesonline.com/babies/c/carolinerochelle
>>   ----- Original Message -----
>>   From: "Mimi Noonan" <miminoonan@xxxxxxxxxxx>
>>   To: <tri-med@xxxxxxxxxxxxx>
>>   Sent: Friday, January 30, 2004 11:42 AM
>>   Subject: [tri-med] pneumonia
>>
>>
>>> Tierney had pneumonia two weeks ago and did beautifully on 
>>> antibiotics.
>>> She finished on Monday am and by Wed was coughing again. At recheck
>>> today, the pneumonia was back. She is not as sick as she was the 
>>> first
>>> time--is still eating pretty well.
>>>
>>> Anyone else had problems with this?? Tierney is orally fed, but has
>>> never been checked for aspirating, I doubt it because she has never 
>>> had
>>> a problem like this before...but you never know.
>>>
>>> (What I would like to hear is "oh yeah, we had a couple of problems
>>> like that, but then my baby got better and did great." Thank you very
>>> much.) I don't like to think about how many T18 babies die of
>>> pneumonia.
>>>
>>> My boys go to public school, but have not been sick at all, no colds
>>> even.
>>>
>>> Thoughts?
>>>
>>> Mimi (wife to Doug, Mommy to Reilly 8, Keegan 6 and Tierney T18 8
>>> months)
>>> Chicago
>>>
>>>                   Building ___ooOOoo__ Rainbows
>>>                        www.trisomyonline.org
>>>                   Families Helping Families On-line
>>>
>>>
>>
>>                   Building ___ooOOoo__ Rainbows
>>                        www.trisomyonline.org
>>                   Families Helping Families On-line
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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