Ladies I need your prayers

[Linzola1]

hey ladies I need your prayer tonight!  Julian had a follow up appointment today for his weight because he has not gained any weight in the last month. He either gains a ounce or looses a ounce and both the doctor and I have been concerned. Well today I took him in for sure that he had gained weight and I was very very wrong. He lost an ounce. So the doctor talked to me about testing for Cystic Fybrosis....I am so upset. They are going to start testing for the childhood illnesses that cause weight loss or lack of weight gain. I am sooo scared and feel so alone. Has anyone gone through this before? Any words of encouragement? Please pray ladies

[Linzola1]

I still have not heard anything back about the test results from yesterdays blood draw. I am really hoping that the Ped does not wait until the follow up on the 3rd. Anyone have any ideas on how long it may take to get the results back?

[martikadragoon]

I wanted to tell you, I DO have some experience in this but in a different way. I'm sure you know of the struggles we've had with TJ.

They have increased his formula to 30cal. which is an extra 3/4 or so scoop  to each 2oz of water. because he wasn't gaining weight, now he's a little chubby guy at 11 lbs! (5 mo.. that's a good weight for him since hes so unique)
It's hard... but trust me, you can handle it.

your in my prayers as well as your LO.

Cindie

[Linzola1]

Well the doctor called today and she said that she had been up all night thinking about what could be causing this with Julian and she came to a few conclusions. Fist the chances of him havign Cystic Fibrosis is slim to none because indeed tested when I became pregnant and I was negative. Second she decided that when we took him off the GERD meds ( Prevacid and Carafate) it seemed like he lost weight. Also she sent him for a few blood tests and she explained what they would be testing for...

BTW I cant spel so I am sorry if they are spelled wrong

* Metabolic problems including checking his electrolites.
* Blood Count including his hemologic system, making sure his blood is clotting correctly etc...
*Thyroid
* Allergys as well as testing for a lactose intolerance.

I am still a little confused on the tests so if anyone can shed some light on them that would be great.

Also if those tests all come back noral then they will do some tests to make sure he is absorbing things the was he should as well as a last result the CF test!

Please pray that everythingis ok and maybe the reflux (GERD) is what is doing this! Thanks

[Lucey12]

Make sure they know it is CF before they treat him for it. They thought my cousin had that from the time she was born and I think she was a couple years old when they tried to clear out the fungus but it caused it to grow dfaster. She died 5 days before her 12th birthday. They treated her for CF the whole time but still dont know what it really was.
Keep positive and get lots of tests done.

All the best to your family.

[mikaleen]

My daughter is 4 and weighs 28 pounds.  She hasn't been on the charts for weight since the day she was born.  I have had testing for everything you can imagine.  I was tested during pregnancy for the cystic fibrosis gene and was negative.  The state where she was born also tests for CF as part of their newborn screen, but her dr still wanted to test for that.  She was on medicine for GERD, which did nothing but make her colicky, she was tested for all sorts of food allergies, more than once.  Blood work was done to test her metabolic system, her thyroid, and ZI had to colect poop for 3 days to check for malabsorption.  She had blood tests to check for celiacs disease, which came back negative, but then they wanted to put her under and do a scope to biopsy her esophagus to check AGAIN for celiac's.  She was 2 by that point, and that's when I cut it off.  I found a different Dr. who she has seen for a while, who is not going by the charts.  She is happy, and overly active, her hair and nails grow like crazy and her blood work is all great, she is not malnourished.  She is below on weight, but has a steady rise, that has stayed consistant for her.  She is in the 75th percentile for height.  .  I know how frustrating it is watching all of the Dr's spit out all different ideas and run all different tests.  It will be hard to watch them draw his blood over and over, but they will either find something quick, and hopefully be able to remedy it right away, or the tests will find nmothing and they will fall back on a nutrition issue, like metabolism burns calories faster than they are taken in.  I'm sorry this was so long, but I want you to know that sometimes they don't find anything wrong.  Some people just have small kids, and I hopet that's your case.  Good luck!

[Michele, Katy, TX]

I forgot to tell you that I will pray for you and Julian.  I know it's hard and scary; especially when it's your first child.  My nephew that I mentioned was their first child too.  Please keep us updated and know that we are all here if you need us.....

[Michele, Katy, TX]

Well, this happened with my nephew.  He was taken a month early because my SIL had preeclampsia (sp??).  So he was tiny to begin with.  Then later, he had problems gaining weight and eating.  He wasn't even on the charts for any percentile.  They took him to every specialist under the sun.  I don't know exactly what happened or even if they were ever able to find anything wrong with him.  I know he was on Prevacid for a period of time but not anymore.  Anyway, he is a thriving 6 year old boy now.  He is small, but doing just fine.

[babypooh]

Oh, I'm so sorry you have to go through this. Try your hardest to think positive :) Pray and stay hopeful! You'll get through this, with the help of God...

[Linzola1]

I just updated his chart on my medhelp and I am shocked he is in the 10th percentile! I guess this is pretty bad! I am almost in tears sitting here!

[Linzola1]

yeah Joy thats the problem according to the doctors scales he is in the 10th percentile!  Thanks for the words of encouragement!

[JoyRenee]

I don't have any personal experience with this. But I want to encourage you--- IF there is a problem then you have early intervention on your side. I just checked out the weight/height chart on your profile, as well as pictures of Julian. He looks very healthy. And he has had steady growth, albeit it slow growth. He's still in the 25th percentile most of the time and that's actually perfectly fine.

It's when babies dip below the 10th percentile that is *EXTREMELY* worrisome. Keep your chin up! I think Mr. Julian is going to be just fine. He's just itty bitty!

All of my sister's kids are little skeletons. Okay, that's an exaggeration. But they've always been on the low-weight side, even though they eat a ton. And they are perfectly normal and healthy. I hope that this little information encourages you!

Your doctors care for Julian and want to make sure he is alright. I know this upsets you but I encourage you to go in there with the mindset of proving the doctors wrong. Okay?! *HUGS*

[fungirl1011]

I am so sorry that you have to go thorugh this.  I will be praying for all of you.  When are they going to start doing the testing?  Please keep us updated and know that we are here for you anytime you need us.  

[babypooh]

I know it's hard, honey! I'm so sorry! You'll get through this. Your baby will get through this.  We'll all pray for you...

[Linzola1]

He was diagnosed with GERD at 3 months but it cured itself by 6 months. HE is on Similac Alimentum and has been for a while. He does great on it! HE has tried the Enfamil Lipil (yellow can) Enfamil Prosobee ( blue can) Enfamil Gentlease ( purple can) This is just to hard right now!

[Rosa20]

does he spit up at all? Maby you need to try a different formula.....im sorry about this and am sorry if you possted thhat you tried these things...my prayers are with you hun..i hope things get better!!

[dnikki0928]

Oh Lindsey, I am soooooo sorry =( I will keep you, DH and little Julian in my thoughts and prayers... I hope it's nothing and whatever it is can be easily fixed. I know not much I say can comfort you right now, but message me ANYTIME, you I'm good for that :-) Please stay strong and stay positive - I know, it's easier said than done...Keep me informed hon...

[babypooh]

Oh, I'm sooo sorry that your baby is going through this. I will keep him in my prayers, I will!  Honey, God is always with us; trust him and stay strong! I do hope it's nothing too serious and that he starts gaining weight soon. I will pray for him. Stay strong!