I have 10 minutes so this is going to be short...
The doctor called this morning. Lab work values that are off are not off enough to cause alarm. She does want to recheck the SED rate down the road but even a runny nose can alter a SED rate value. So nothing to report there.
She spoke with a gastroenterologist about the weight lose and there are two additional tests they have agreed are necessary to run: a 3 day stool sample to check for blood and a test to rule out Cystic Fibrosis. She calmed me a bit by saying it is unlikely he has CF but they want to rule it out because weight lose in a child is a concern. She said he does not exhibit many of the signs but because the weight lose concerns them, they want to rule it out. I find it unlikely that he would have CF because until this point, he has been a healthy, chubby child with no healthy issues beyond the usual run of the mill things. I just don't see it as likely and yet - it still scares me a bit that they want to run the test.
So....that's where we are right now. Oh - and they changing his meds for the rectal prolapse (have I even mentioned that? It's what sent us to the doctor December 31st) since the first med didn't seem to have the effect they wanted.
So there you have it - a brief recap. Gotta run - busy day ahead.
21 comments:
Sounds like they are starting to rule things out, which is good. I hope they figure out the cause of the weight loss quickly and I hope that it is an easy fix. I'll keep you all in my prayers.
Elizabeth
We had a test for CF at about 11 months, as Robbie slipped from the 25 percentile to the 3rd. It was a sweat test. Is that what Kelton is having? We knew it was very unlikely as the Donor and I would both have to be positve for CF for him to have it. And they would have tested a donor for that, before allowing their sample to be in the program. Hope that helps.
I would be scared too. Did the Dr. actually say "many of the signs"? That is the part that got me. I'm sure it's not CF and I'm sure they are just trying to rule everything out, but geeze. We're always thinking of you.
Oh, and is he more physically active now that he's in school all day? Maybe he's just slimming down because of activity?!?
so sorry to hear that you're having to deal with this. poor kelton. i hope you can rule out the nasty stuff and it's something simple and easy enough to fix.
also sorry about the ceiling issues. sounds like you're having a rough patch. {{{hugs}}}
Our best friend is a pediatric nurse and we went through helping friends recently with a very similar issue. Nurse Jessie says that all good doctors have to rule out the worst case scenario first. Any kid with weight loss and any history of respiratory infections will have to have a CF test. It's done a lot and usually negative.
Believe it or not, our little friend who went through a mass amount of testing after going from the 95% for weight all the way down to the 7th percentile went through a flurry of tests and the final result: food allergies. A diet change is all that was needed.
I hope this is resolved quickly so poor Kelton (and the mommies) don't have to endure too much more of this testing!
Thinking of you!
Thinking of all of you. Hugs. :)
I'm glad they are working to figure this out with you! I'll continue to keep you all in my thoughts and prayers!
Glad that the tests are coming back ok... and I know they'll figure out this wt. loss issue - and we will continue to keep you all in our thoughts and prayers... glad you have friends dropping off meals and helping you out.. i wish there was something I could do - miles away --- i feel helpless... hang in there and i will check in again soon. Hugs! Kara Carey
Sucks that there is more waiting, but at least you got some good news about the blood tests and that the CF is unlikely.
Has he been checked for celiac disease? I realized this morning that three of my friends kids have this and two of them found out because of weight loss. I guess one of my friends daughters lost 7 pounds out of the blue at 5 yrs old. She got tested for everything and it ended up her body was not absorbing like it should and she had pooping problems and weight loss. Anyhow- lots of things to look into. I hope this gets resolved soon.
Heidi
Elizabeth: Thank you.
Catherine: It's a sweat test. Care to enlighten me with how it was for Robbie? I know nothing about it. I'm feeling almost certain he doesn't have it because the website states that they do test donors. Though they do have a line that says something along the lines of they cannot absolutely promise it but they do test for a myrid of coding.
Tanya: They said he does NOT exhibit many of the signs. The weight lose in the main one they are looking at.
Tanya: That could, in the end, be what it is but whenever a child loses weight without intent, it is cause for alarm. He could be slimming down but he shouldn't have lost weight. Growing taller, yes. Losing weight he should not be doing.
Stacey: Thank you!
Holly: And I do feel like we found a good doctor. I would so much rather be safe than sorry. Kelton has never had "recurrent respitory infections" - minor colds that he has always shaken easily which is another reason I am feeling pretty sure that he couldn't possibly have CF. We have talked about food allergies so I'm sure once they are confident that nothing serious is wrong, we will explore that option.
Lynilu and Audra: Thank you!
Kara: Thanks.
Kristen: It does suck but I think (so far) the worst part has been waiting for the blood tests.
Heidi: We ruled out celiac with the blood tests. I knew they were checking for that and had even asked (she had already planned on it). Just so much to look into. It's kind of overwhelming. Wow.
Casey,
Hoping I can help a bit. We did the poop test for my daughter when she was about a year and a half old. It was yucky with a kid in diapers, so I really feel for you! They found no blood and she was determined to have severe reflux and what is called a "slow dump" This is when food is eaten, and enough in quality and quantity, but it stays in the stomach too long and gets too broken down by the stomach acid. When it moves to the intestines, too much of the nutrition is gone and cannot be absorbed, therefore, weight loss or slow gain. Now she had loads of issues, and this one she actually grew out of for the most part, she does have a killer metabolism. I would ask the gastro about this because my understanding is that it isn't always something they look for.
As for the CF, we did that too,and it is scary. As you used a donor, I am sure there is no way that they didn't test for being a CF carrier, it is easy enough to do with a simple blood test. Can they just give you a blood test to see if you are a carrier? It would mean one less test for Kelton who I am sure is feeling the stress of all this. Rest easy on that one!
I hope you can rest a bit easier that it is none of the big things they have tested for. Hang in there!
Oh and to second what Holly said, food allergies could be the issue. Same daughter that did the poop test and had the slow dump....food allergies caused some other issues for her including weight loss and slow gain.
Sounds like they are going to figure it all out. Hang in there. Bless all your heart! Huge hugs.
Casey, the sweat test does not hurt, it just mildly annoying. I remember them puting something on Robbies arm that would make him sweat and they told me to put a warm sleeper on him so he would stay sweaty and warm. Our problem was he was one, and wanted to pick it off. I showed the dr. the report that showed the donor had been tested. He said they only test for the most common forms of CF, their are some rare types they don't test for in blood. And the sweat test was the most accurate way. I never for a minute believed he had it. And I am sure Kelton doesn't either.
Good Luck! Stay positive and we are thinking about all of you!
Emily
So of course I'm going to chime in here about the CF sweat test.
You have some wonderful and thorough doctors and I'm so glad they are checking for CF. That being said, I'd bet you a million bucks it could never be CF. But THANK GOD for responsible docs! They're checking "failure to thrive" which is just one sign of CF. And it would be highly unlikely that Kelton would be pancreatic sufficient his entire life and then one day become pancreatic insufficient. It is just sooooo unlikely that it's CF. At his age, he would have been failure to thrive his entire life and have a history of resp. illness to really cause concern.
Here's what the sweat test is like: You bring a ton of extra clothes, a snowsuit if you have one, and get him good and sweaty. They'll keep him like that for a good 45 min or so. When he's red-faced and sweaty, they'll test these little patches on his arms and legs (like bandaids) to see what the levels of his sweat chloride is. If it's high, (and Addie's was sky high) they'll call you right away. We heard within 12 hours. But it won't be, I'm sure of it.
Also, his vitamin/liver/kidney levels would probably be abnormal if it was CF. So breathe easy (no pun intended), this is not the problem.
It really sounds like you are getting excellent care. I hope your docs figure out the problem soon and that it's nothing big.
I'm thinking about you guys big time. Sending love. xoxo Elise
Elise: I knew you would have great insight for me and I am happy to hear that you concur I do not have to worry. I'm also happy to hear that you think this is the right move for Kelton's doc to make. I really have a gut feeling she is a great doctor and to have someone validate that she must be by virtue of her checking every avenue really makes me feel good.
I would never, ever term Kelton as a failure to thrive kid. Good heavens - he's been solidly in the 95th percentile all his life and just recently slipped into the 83rd so clearly - the boy is still doing ok. :) (His height is still in the 95th) Thank for you commenting - I was hoping you would but I didn't want to bother you since I know things are tough right now. I'm thinking of Froggy lots and lots.
Tribe Mama: Yes, the screen donors but apparently there are some strains of CF that are not detected in parental testing. And I guess it's always good to be sure because what if the bank said they tested and didn't or what if the testing started *after* the donor we used donated? Or what....? It's endless so I guess better to be safe than sorry when it comes to that. Though honestly, as I've said, I just don't think it's possible for Kelton to have CF. In my heart, gut and bones I just know he doesn't.
Allergies I can buy. So we'll cross that road when we get there. Thanks for the info - I'll keep it handy to refer to when asking questions.
Rainbow Mama: Thanks for the support.
Catherine: Thanks for the info! Always good to know what others have gone through.
Emily: Thanks!
Just getting caught up. You have a wonderful group of very informed friends. From my own history, I'm guessing there may be a food allergy/intollerance. Did you say you noticed all this since school started? Does he take his lunch every day or eat in the cafeteria? Is he eating something new (or in a larger quantity) than he did over the summer? Food allergies can come on almost overnight. My nephew is the same age as K, and he just developed a strawberry allergy (used to eat them all the time). We just confirmed that N has a few food and other allergies, so hopefully all your questions will be answered soon too. Hope to see you soon.
Thanks for update! I'm glad Kelton has since gained!
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