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I need to vent some worries too :(


Forum: Pregnancy and Motherhood After Loss

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  #1  
May 13th, 2008, 07:47 PM
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Join Date: Nov 2007
Location: California
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I dont think I have ever posted about my son Kaiden, except my complicated pregnancy with him.

Since he was born he has been "sick" at first it was reflux, he had a test at 2 months to diagnose it. then at 5 months his reflux got better but he began having SEVERE diahrrea, and really stinky, his poop had froth and mucous in it, and blood on occasion. He would go every 1/2 hr, it was really bad, and they could not find out why. he also seemed to be in pain alot!

He got referred to one of the best childrens hospitals in our state, and started seeing a pediatric GI Specialist, my little guy had to go through LOTS of tests, all the time, poked and prodded, and they coudnt find out what he had, but they knew he was not digesting his food, his stools had ALOT of fat in it. He also tested positive for blood in his stools.

He was losing weight and completely off the growth charts.

Anyway, they finally knocked him out and did a colonoscopy, endoscopy, and pancreatic function test. It was terrible He was about 1 1/2.

We finally got the results and found out that his pancreas doesnt work like a normal persons, it does not release his digestive enzymes. Its called Pancreatic Enzyme Deficiency and is really rare. so he was not digesting his food, it was going right through him.

So they started him on 1 enzyme with every single meal. we were so happy to have a diagnosis, I was sad he has a bad pancreas, but happy to fix it.

well he wasn't showing improvement, so they upped his meds to 2 pills with every meal.

Long story short, he was still having a hard time gaining weight, was still losing weight.

SO they started him on tagamet, and he was doing better, apparently his stomach produces to much stomach acid and it was eating the enzymes before they could work. so that helped, but not as good as they expected.

so once again they upped his enzymes to the MAX amount he can have, 2 1/2 pills with every single meal.

anyway, sorry fo rthe long story, it has been a hard 2 1/2 yrs, with no definitive answers and not the progress anyone expected.

There was alot more to it than all of that, thats the short version, LOL.

the stressful part for me, is Pancreatic Enzyme Deficiency is most often from Cystic Fibrosis. He has had tests for it and they said Cystic Fibrosis is in their back pockets as a diagnosis.

and now they want to test him for Shwachman Diamond Syndrome, which really scares me to, its apparently the 2nd most common cause of Pancreatic Enzyme Deficiency. It is a bone marrow disease and 30% of patients get leukemia.

So we have to go for more tests, and I am left feeling VERY stressed and uncertain for his future and what he actually has. I do not like being in the unknown. if he doesnt have the Shwackman Diamond Syndrome, then it looks as if he will be diagnosed with A Typical Cystic Fibrosis.

btw, he is still completely off the growth charts.

and then im freaking because both of these problems are genetic, and what if this baby has the same problems???

Im sorry guys, I know this stuff may not sound like a big deal, but as his mom, it worries me. I think I would rather have COMPLETE answers then the ring around I feel I get. Its so rare they do not know enough about it!! The enzyme deficiency that is.

If you read this far, WOW, lol, really means alot, and boy that felt good to write out.
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  #2  
May 13th, 2008, 07:51 PM
angelmomjen's Avatar Mega Super Mommy
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I am so sorry for all you and that sweet boy are going through..not knowing can be so hard Im sure..Im glad that you are all on your way to finding the anwsers..you guys will be in my thoughts and prayers..Im sure its all going to work out for the best...no matter what the outcome is you know that you and yours are strong enough to fight all the way..God Bless
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  #3  
May 13th, 2008, 09:15 PM
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Oh God, Heather! I can't even imagine what you are going through right now. I am so sorry that you are going through this. I will be praying for your entire family and I pray that you and Dh will receive comfort in such an awful, worrying time as this is for you all. I hope you have some answers soon in the very least....the unknown is often times the worst part.

Your poor little man! I'm praying for you all...


Love,
Stacey
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  #4  
May 13th, 2008, 09:57 PM
jademyst13's Avatar Platinum Supermommy
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Location: Virginia
Posts: 5,129


Poor little fellow! That is so much for one little guy to go through. I do hope they finally figure out exactly what the problem is so they can work on fixing it. I also hope that your baby will be just fine! Ethan has had no problems right?
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  #5  
May 14th, 2008, 03:03 AM
Lv2Mommy's Avatar Platinum Supermommy
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Wow - what an awful ordeal for both Kaiden and your family. I hope the doctors can pinpoint the exact problem so they can come up with a successful plan of action. Are there tests they can do for the baby once they know what to look for? I'll definitely be thinking about you & your family and praying that both Kaiden and the new baby will be fine.
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  #6  
May 14th, 2008, 05:06 AM
keekopeeko's Avatar Platinum Supermommy
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aww man.. i cannot even imagine going through all of that... I really hope things start improving soon for your little man...

And i think since all of it is soooo rare and you already have one healthy son that this little guy will be fine as well... Ill be praying that its so.

~Em
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  #7  
May 14th, 2008, 05:19 AM
Doodle's Avatar Platinum Supermommy
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every time we have a baby we roll the dice. It's harder to roll them when you know there is a possibility for genetic illness, but your heart can tell you what YOU personally can handle. AFter MIra got her diagnosis they told me that I should get genetic counciling to fully understand our odds. We decided not to bother. We know what we can handle and just because she has a (possibly) genetic thing going on, we know it can be dealt with and that we are willing to do what we need too.

I know it doesnt make your worries any less but remember the odds are in your favor that things will be just fine with the new baby and that your son sounds like he is getting GREAT care!
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  #8  
May 14th, 2008, 07:03 AM
kalis's Avatar Platinum Supermommy
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Location: IL
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so sorry you are going through that. it is good that the doctor's seem to be working hard to figure it out now.
i am praying for you and your family.
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  #9  
May 14th, 2008, 07:32 AM
Danica's Avatar Mega Super Mommy
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Location: Colorado
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Oh Heather, you must feel so scared for your little guy I am sorry that Kaiden has to go through all of this. I pray that you get answers soon. It must be awful not knowing the root cause. Whatever the problem ends up being, I hope that there is a good treatment for it. big HUGS Positive thoughts & prayers are coming your way.

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  #10  
May 14th, 2008, 07:42 AM
dee68's Avatar Platinum Supermommy
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Heather,

I had NO idea...~HUGS~
I am so sorry to hear that Kaiden is going through this, as well as your entire family of course. It must be so hard for you.
Please know that we are here for you ...
I will be keeping your little boy in my prayers !!!

~HUGS~
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  #11  
May 14th, 2008, 08:23 AM
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Join Date: Nov 2007
Location: California
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wow, thank you all so much for the support!!!

yeah I have never brought it up, dont like to be a downer, but right now its hitting me hard again. I see his regular dr. tomorrow and will be asking more questions and maybe get some of the testing done that they want done. i HATE putting him through testing, he hates dr's now.

and you guys are right, I am sure this baby will be just fine

I will KUP as I learn more, but I know with his previous tests, its usually a long time for actual answers because more tests come up, etc...

Thanks again you guys are the best!!
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  #12  
May 14th, 2008, 09:50 AM
luvmygirls's Avatar Mega Super Mommy
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I am so sorry that you and your family have to go through all that. Poor little guy! I hope you get some answers soon and he gets better!
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  #13  
May 14th, 2008, 10:52 AM
*Pamela*
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I'm so sorry you and your family are going through this. We're family here and it is a big deal to me as well. I'm a mom and it breaks my heart when little ones have to go through any pain let alone all the testing he's had to endure.

You all are in my heart and prayers.
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  #14  
May 14th, 2008, 01:50 PM
Eleysia's Avatar Mega Super Mommy
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Location: Bremerton, Wa
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Heather big huge Im so sorry your little man, and whole family for that matter are having to go through all of this. Im sure like the other ladies said this baby will be fine, and im praying for you and Kaiden that they find some answers soon.
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  #15  
May 14th, 2008, 02:20 PM
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you guys are wonderful Thanks for the support, I am feeling a little better today, yesterday it just all hit me hard.
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  #16  
May 15th, 2008, 06:20 AM
Sabina's Avatar Mega Super Mommy
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Location: Canada
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Sorry I am late on replying. I just read it and needed to send my *hugs* your way. It is very hard to deal with when you aren't sure what you are dealing with. I really hope you get some answers soon hun.
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