Prayers for my niece

[JJJ]

My youngest sister's daughter is just 1 year old. She has always had trouble growing but her complete lack of growth over the last few months has the doctor very worried and has sent her for a bunch of tests. They are leaning toward cystic fibrosis. It may be weeks before we get a definite diagnosis. My sister's a wreck. Thank God for a special co-worker whose son has CF and was able to share with her the terror of the getting the diagnosis and the fact that his son --with treatment -- is a pretty normal 9 year old who goes to school and plays soccer and that they are so very close to a cure.

I feel so helpless -- they are in California so there is nothing I can do for them right now but pray.

 

[Hound dog]

JJJ

How very worrisome!!! Your sister must be beside herself with worry. Glad doctor is aggressive about finding the cause of her lack of growth.....many would hesitate much longer.

Sending prayers up that whatever the cause it can be easily treated.

(((hugs)))

 

[Star*]

Always have time for a prayer!! Hugs

 

[gcvmom]

I'm so sorry she's dealing with that. It's very frightening when you have a child with failure to thrive and you don't know exactly what's going on or what to do about it. I remember those early days with difficult child 1 before we got his Crohn's diagnosis. As a parent, your thoughts are just consumed with worry over it.

I hope they get some solid answers and can start treating her soon. Don't know much about CF, but what you say about the cure being very close is certainly encouraging to hear. Hopefully they can find a good parent support group in their area -- that can really be helpful in getting through the early months of a diagnosis.

I will keep them in my prayers.

 

[KTMom91]

Sending prayers and hugs.

 

[flutterby]

Sending healing thoughts. Poor little girl. Life is so unfair sometimes.

 

[JJJ]

I was thinking Crohns (and that is one of the things they are testing for) as we have Crohns in the family but as far as I know, no CF.

 

[Wiped Out]

Adding in my prayers.

 

[Lothlorien]

Could be a tumor growth or a lack of the growth hormone, which if either is found early enough can be treated. At eleven, has she gotten her period yet? If so, she very likely may be at her end height. I was close to the height I am now at that age. I didn't grow again until I was 21 (grew two more inches).

 

[Abbey]

Count me in on positive thoughts. They must all be so worried. I don't know much about CF, but I know they have made great advancements with Chron's.

Abbey

 

[busywend]

Sending many prayers up for you, your sister and especially your little niece. So young to have to endure problems.

 

[tiredmommy]

Sending {{{hugs}}} and prayers.

 

[JJJ]

The Board Power works again! Thank you for all the prayers -- the test for CF has come back negative!! Still more testing to go to see what is wrong, but this was the most serious worry.

 

[tiredmommy]

Could she have reflux?

 

[Josie]

Celiac Disease is another cause of failure to thrive.

 

[hearts and roses]

She must be having symptoms of CF if they are leaning that way as opposed to food allergies and Crohns. Has she always had difficulty with breathing, fluid in her lungs, etc?

My sister in law's family has a history of CF and before my brother and his wife had children, they had blood tests done to see if there was a chance their kids could have CF - thankfully, it came back negative on my brother's end and so they went on to have 4 healthy kids. But my sister in law lost a brother at the age of 2 and her closest sister at the age of 18. Her cousin had a lung transplant a few years ago and is now over 40 and doing very well. There has been a lot of research and development in the cure for CF. I think there is much promise for your niece should this be the diagnosis.

I have two sisters and a niece who have celiacs. And by the age of two, when the DR's couldn't figure out what was wrong with my niece because she simply was not growing (her head was so obviously disproportionate to her body!). Finally, they brought in my sister and her H and tested them and my sister's came back positive. They then tested my niece and she came back positive. When testing for celiac, they begin with a blood test, but the most definitive test is done by sampling the villi of the intestine/colon. Once my niece was put on an appropriate diet, she began to thrive and catch up to her peers - she's doing wonderfully now as long as she sticks to the diet, which is not as prohibitive as it sometimes seems!

Many many prayers being sent your way!

 

[gcvmom]

JJJ, do you know what other symptoms she's had besides failure to thrive?

 

[TerryJ2]

I'm late to this, but sending healthy wishes, along with-super-duper-fast diagnosis fairy dust.
The faster she gets a diagnosis, the faster they can deal with-the issue and get her to grow.