Update on Avery

[anonymous]

Hi everyone!

Avery's liver test results from the gastro doc. as normal yesterday. She does not have liver disease and her liver enzyme levels were normal. So, her enlarged liver seems to be ok for now. The gastro doc. said her bloating is just something she is going to have to deal with that may never go away. He also stated that constant severe bloating is linked to more severe cases of CF. Has anyone else ever heard this? Well, obviously I hope he is wrong and I hope Avery's constant bloating goes away eventually. For the past year my little girl has literally looked like a toddler who is 9 months pregnant around the clock. I can't even imagine how uncomfortable that must be for her.

Well, thanks for all of your support and hope for the best for her.

 

[lflatford]

Oh, I didn't know I wasn't logged in.

Bet yall were wondering who Avery was??!!

 

[anonymous]

I knew it was you, lol. I am glad to hear that her levels were good, that is great news. Sydney gets a distended belly every once in a while but it is kind of strange bc it just comes and goes with not much rhyme or reason. I know some people never have it, some always have it and apparently some have it off and on. I have never heard of the relation of distension to severity, not saying I am an expert, but hoping it makes you feel a little better. Was she also getting tested for Celiac?

Thanks for the update!
Kelli (mom of Sydney 2.5 wcf)

 

[purpleangel28282]

I'm so glad to hear that Avery doesn't have liver disease. I haven't heard about constant severe bloating being linked to a more severe CF...I hope it goes away.

 

[anonymous]

My digestion is just fine now, however as a child I had a heck of a time with it and I have had the wonderful "pot belly" my whole life. I get so sick of getting asked if I'm pregnant. My belly seems to be distended even more when I have gas. I just try to dress to minimize it.

 

[julie]

"constant severe bolating is linked to more severe cases of CF". I'd be really interested in knowing where he conjured this one up from??? Maybe he meant, "more severe cases of digestive problems", but even then, some CFers who have bolating problems seem to do fine with weight gain. But bloating is another one of those beautiful CF things, and the doc is right about it possibly never going away and her having to learn how to deal with it.

 

[lflatford]

Kelli,
Yes she was also tested for Celiac disease, it came back negatvie as well. So, now it will just be a waiting game to see if her problems go away. Thanks for your concern. I love having this forum to come to for support....don't you?!

 

[anonymous]

I feel your frustration, my daughter Maggie who is also 2 has always had a butta belly. She was diag. with CF 6 months ago. When she was little I asked the doctor several times about why her belly was so big and then never really had a good enough answer. I used to get so upset with my family because they would always joke about it but when we found out she had CF it actually made me feel better. The DR said that it may go away and to just Deal with it. I ask her if it hurts and she tells me no and to blow on it and make fart noises, if she only knew!!! Anyway I've never responded or even written on the forum but when I read your post I thought maybe it was about time I start sharing my story.

Thanks for listening,

Rhonda-

 

[rose4cale]

Lynsey, glad to hear everything came back negative. I also asked about Cale's belly and first they told me that babies grow out and then up, then they told me when he was older it's just the way his body is. How's that for medical reasoning? lol I get tired of people commenting on how 'fat' he is, just because his belly sticks out. It especially made me mad when people would say that, yet we were having every test under the sun done to see why he was off the charts small!

 

[anonymous]

Shelly and Rhonda,
Thanks for your replies. In kind of a sad way, it is nice to know I am not the only mom worried about this. I promise I am not only focused on the way she looks, it is just that this disease is supposed to be a skinny disease not a big bloated belly disease. Anyway, like Shelly said it is hard when she is so small and all people do is comment on how big her belly is!!!! I too was told that when her height finally catches up the belly may go away but it may not either. Avery is in the upper percentile for her weight but in the lower percentile for her height! It took us a whole year for her to gain proper weight and now that she has all I wish for is height to go along with it! This makes not sense to me!! I hope her height catches up or she is going to topple over one day with her large belly being the reason. Good luck with your little cuties!! We need to come up with a reply to the large belly jokes, that will make them want to stick their foot in their mouth! Let me know if you already have one!

 

[rose4cale]

Avery sounds like a mirror of Cale. He is in the 50 percentile for weight, after not even being on the charts for a year! And only in the 5th percentile for height. Other 2 and 3 year olds tower over him, so I really hope he does gain some in the height. But as long as he maintains good health, I will be happy! I use to explain to people his belly was part of his digestive 'issues' but I don't want people to feel bad for comments, I just want them to think first. So yeah, if you think of something clever, let me know! <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[lflatford]

Shelly,
Is Cale on prevacid? I just started a thread about prevacid and when it should be taken. I have been giving Avery's to her at night because that is when she does everything else which made it easy to remember. However I wonder if I gave it to her in the morning, if it would help her belly from being bloated? Especially since the prevacid is supposed to help her digest the enzymes more effeciently. The gastro doc told me her belly is directly related to malabsorption, which means her body is still being starved of needed nutrients. So I ask, How is that possible since her weight is so Good? Of course there is no answer.

 

[rose4cale]

Cale's on Zantac at night when we give him everything else. My reason also for that is because without the zantac, his morning drainage gets him coughing and he would gag easier and throw up every morning, so I would give it to him at night and it seemed to just work better. Since his weight is good and he quit throwing it up, I just always give it to him at night, but never noticed that it did anything for his tummy either way. But man was he small before the enzymes (pooping it all out) and before the zantac (throwing up whatever was left)!!

His Christmas list to family is 4t tops for his belly and 24 month pants for his short legs. They just don't make cute sets with those sizes!

 

[lflatford]

Shelly-
I completely understand the size issue. Avery wears 18 mo. size pants and 2T-3T sized tops. What a nightmare?! Especially when I need to buy a dress, if I buy 2T-3T it is too long and if I buy 18mos. it is too tight. Oh, well. As long as they are healthy this is the least of our worries right?

 

[debs2girls]

I also understand the size thing....Cheyenne needs size 6 in pants for the length and then the waist doesnt even touch her body...she can wear 18/24 months in shorts.
Debbie

 

[JazzysMom]

I remember trying to find jeans as a kid (and still now actually) that fit properly. I always had to wear a "slim" cut size. My daugher (non CF) has the same problem except unlike me she is VERY tall for her age so the length is the problem with her usually. I hate spending a fortune on clothes, but sometimes you have to just to have something that fits right. I know for me that I can find pants that fit perfect thru the JC Penney catalog, but it can get pricey & I am not one that has to keep up with the jonese (so to speak)!