Sounds like the labs she's drawing are good ones. A sed rate (the erythrocyte sedimentation) will help look for inflammation. Has he had a prealbumin drawn before? That will be a good indication of whether he's truly getting enough calories for his own body, regardless of what the numbers say. But yeah if everything comes back looking normal then he really is just a skinny kid (he's a little heavier then I was at 2yrs) or there's an underlying problem still being missed. I do think there's something to be said with getting a kid's weight up a bit to help in situations where you're dealing with illness, even if it is just a bandaid fix. Good luck! Most of the blood work should be back by tomorrow (I forget how long the RAST takes and the TSH and Free T4).
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I know that I have to be a different parent to him. I know I"m not failing. BUt that doesn't mean I should just allow any intervention because we've allowed one or two or three or a dozen. I do them when we have to, but what's going on with his weight is still so gray area right now. Sometimes everyone agrees that he's doing well all things considered, then suddenly everyone gets worried about his low weight. Sometimes we can explain away every issue, sometimes we scratch our heads thinking we're missing something. I'm very thankful that he's stable enough that we have the time to try to figure things out rather than having to make a quick decision that we're forced into. I hate that we're having to make these decisions at all, but I do recognize that we're lucky that we have the time to make them thoughtfully and thoroughly. Will he end up on medical food long term? I don't know. Will he end up with a temporary or long term gtube? I don't know. We've made it this far, and not to his detriment either. With the exception of speech, which is always the last thing to develop in 22q kids, he's made huge strides and is continuing to make them.
So onward with the testing.
Originally Posted by MotherWhimsey My opinion might not be terribly popular, but here it is anyway. I would weigh the fact that he is obviously not getting enough for his body to grow at this point and the developmental issues it can cause vs the interventions which would be temporary. But this is exactly my issue...he IS developing, he has made HUGE developmental gains this year, DESPITE being sick. I don't think he's malnourished, truly I don't. He is happy, active, playful, even misbehaves. If it weren't for his immune deficiency making him so much more susceptible to illnesses, I truly would be okay with him being small. There are some awfully skinny people on both sides of our family, so it wouldn't surprise me. But because of all his other issues, he really could use some more weight, hence why we're trying to determine if there's a true problem. If they brain is not getting enough nutrition to properly grow (and like emily said, disregard numbers, he may need mroe than average), it can cause permenant issues. So is it worse to consider a temporary intervention or to risk permenant developmental issues? Obviously that goes without saying, but it's such a slippery slope. The same slope we've been on a precipice of so many times and had to make a decision of whether to accept an intervention or keep fighting on and try to find the underlying cause so we could truly TREAT it. He is happy, healthy considering his syndrome, developing well...no signs of permanent issues at all. If there were, I would do it in a heartbeat. I'm not sitting back and watching my child starve to death, quite the opposite. BUt I"m also not jumping to a quick fix, which in his case might not be necessary and might not be helpful. We don't know yet, hopefully the labs will help determine that. It totally sucks when you get ripped away from those ideals that you held before he was born. I totally think eating whole foods by mouth is far better for most people, but I have had to come to realize that it is NOT what is in my child's best interest. That is what AP is all about. Doing what is best for your child. Most of the time that is totally within natural bounds, but there are circumstances where in order to do what is right for your child you have to move away from what is "natural." I get that. I do. We have strayed so far already, god knows. But I've never strayed until I was absolutely sure that it was the only way, that we tried everything else, that this new way wouldn't be detrimental. I think back to the very first recommendation of formula supplementation, then thickening, then g-tube and after so much heartbreak and tears and hours upon hours of research we declined all three and it turned out to be FOR THE BETTER once we discovered the true problem and worked on fixing it. Just think of it this way, if he did get a tube you could blend up all that organic whole food stuff and just shoot it through the tube. That way both parties have come to a compromise. He's getting the calories and volume he needs, but it's the whole foods that you want. But it's not necessary. If it becomes necessary, then we do it. Just like the tubes, the PICC line, the lip surgery, the scopes, the MRIs, the CT scans, the swallow studies...every decision was made after very thorough consdieration of all our options, even if the option we picked wasn't the most popular or the "easiest". He is not emergent right now, we have the time to figure this out, I want to figure this out. No one is talking tube right now, I know the discussion could be just around the corner, but it's not on the table now. He doesn't need it, at least not yet. He eats safely by mouth, he's taking in adequate calories, whether he's utilizing them all or not is questionable, and hopefully something we'll determine soon. I know you are very against intervention, but in the long term it could be less problematic than doing nothing. This is just what made me so pi$$ed off with the dr today. WE ARE NOT DOING NOTHING. We've been doing something, lots of somethings, from the day he was born. We've altered his diet, we've attended to his health issues that may be contributing (reflux, food allergies, working through the oral motor issues to get him eating more varieties of food), I've been in contact with the renowned specialist in his syndrome to determine whether he's abnormal for kids with his syndrome, we've worked with nutritionists, lactation consultants. We've had successes, we've had setbacks. We feel like we're missing something, hence the further testing now. I'm going to use someone else on here as an example. Sarah's daughter Sydney was making slow developmental progress (but still progress) and was slowly gaining a little bit. Eventually though they made the decision to get a tube. After a few weeks her language exploded! It was freaking amazing. She went from being almost totally nonverbal to saying phrases. For them, a tube is a temporary solution. It is allowing her to get enough nutrition in so that she can develop, but once she can take enough in by mouth the tube will come out. Since getting the tube she has had more stores for when she gets sick and has not required as much intervention then (like o2 etc.). She gets sick like a normal kid now because she has the stores to do so. So in a way, one intervention has prevented many others. Don't think of it as some kind of AP failure, just think of it as a different way of doing what is best for your child regardless of what the intervention is. And remember that whatever you guys do will most likely be temporary. It'll get him over the hump and when he can handle getting in what he needs then you can go back to normal. It's just a bump in the road, but not the whole road. |
So onward with the testing.
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But as with his last illness, you know that "stable" is sometimes fluid for Connor. He has no reserves, no stores and that makes illnesses that would be/should be minor more serious and potentially necessary for more interventions.
Originally Posted by 2boyzmama I know that I have to be a different parent to him. I know I"m not failing. BUt that doesn't mean I should just allow any intervention because we've allowed one or two or three or a dozen. I do them when we have to, but what's going on with his weight is still so gray area right now. Sometimes everyone agrees that he's doing well all things considered, then suddenly everyone gets worried about his low weight. Sometimes we can explain away every issue, sometimes we scratch our heads thinking we're missing something. I'm very thankful that he's stable enough that we have the time to try to figure things out rather than having to make a quick decision that we're forced into. I hate that we're having to make these decisions at all, but I do recognize that we're lucky that we have the time to make them thoughtfully and thoroughly. Will he end up on medical food long term? I don't know. Will he end up with a temporary or long term gtube? I don't know. We've made it this far, and not to his detriment either. With the exception of speech, which is always the last thing to develop in 22q kids, he's made huge strides and is continuing to make them. So onward with the testing. |
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As someone who has a kid with a tube, so whatever goes in is 100% known and monitored, there are diets and formulas that it didn't matter how many calories he was on, he just didn't gain.
I did the blended diet for a long time. He got more than enough nutrients, more than enough fat and calories, but he lost weight. We switched to a different (premade) formula and BOOM, he gained 2 lbs in a week!
So just because a set amount of food is going in and coming back out the other end does not mean that it works for a child.
My kid got 1500 calories on the blended diet. On the formula he's on now (and doing well) he only gets 1000 calories. For whatever reason, he needed stuff to already be broken down.
In a case like that you might not need a tube long term, but you can see what goes in and have the ability to tweak that while you figure out WHY something else isn't working.
Originally Posted by Mrs_Hos Ok...let me know if my logic is totally flawed, but... Wouldn't a G-tube not matter...or most likely won't matter...he EATS. He digests...he pees and poops...it's NOT a problem of LACK of nutrition...it is a problem of metabolism or something between his mouth and his behind...something in there is not working quite right... You need to find the source...not try and 'fix' a 'problem' that isn't REALLY the problem...you'll be spinning your wheels...not to mention the NEGATIVES that come with a tube! I know the Drs are trying to 'fix' what they see--I just hope they are truly working to look under the top layer--I feel this is deeper than just lack of nutrition causing lack of weight gain. Keep digging...and keep pushing these Drs to WORK for your son. And lets hope it is quick before a sickness or something forces you to make decisions without adequate research! |
I did the blended diet for a long time. He got more than enough nutrients, more than enough fat and calories, but he lost weight. We switched to a different (premade) formula and BOOM, he gained 2 lbs in a week!
So just because a set amount of food is going in and coming back out the other end does not mean that it works for a child.
My kid got 1500 calories on the blended diet. On the formula he's on now (and doing well) he only gets 1000 calories. For whatever reason, he needed stuff to already be broken down.
In a case like that you might not need a tube long term, but you can see what goes in and have the ability to tweak that while you figure out WHY something else isn't working.
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Actually as is the case with a lot of kids (unknown in this particular situation since his labs haven't come back) a lot of kids eat great by mouth but due to underlying problems they simply can't eat enough calories by mouth to grow well. Kids with hypotonia for instance burn so many calories simply functioning on a normal daily basis that while a diet consisting of 1000-1200 calories would typically be enough, it's not in a hypotonic kid.
Originally Posted by Mrs_Hos Ok...let me know if my logic is totally flawed, but... Wouldn't a G-tube not matter...or most likely won't matter...he EATS. He digests...he pees and poops...it's NOT a problem of LACK of nutrition... |
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I'm rooting for the wait and see approach at this point. It's all hypothetical until the labs come back, particularly the absorption test. VeeGee was 16 pounds at 2yo. Now, she was definitely FTT and was NOT going to live without some interventions. But she already had a g-tube, so that wasn't actually helping. It was other stuff. Of course, it's TOTALLY NOT the same situation because VeeGee WAS neglected. Connor is clearly NOT neglected, and it really burns me up to hear that the doctor so flippantly insinuated that he is!!!
Another suspicious thing that would make my skin crawl is the doc's opinion about Micky D's. Are you kidding me? We effing get this stuff all the time from ignorant people. As if feeding something else would be the thing. As if I'm withholding the "yummy food" because I'm too crunchy or some sh#t!. Uh, yeah.
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I would think that the crap that's in that food would be pretty detrimental to a little one's already fragile GI system, and I think the doc is irresponsible to suggest that as a good option.
Finally, PRS kiddos are just small. Really small. I've gotten used to that fact, and I believe Sam has the wisdom, experience, and researched understanding to distinguish between abnormal (for PRS) smallness and what is to be expected. If I remember correctly, Connor hasn't lost a substantial amount of weight in any of his most recent illnesses, nothing beyond what would be expected from the types of illnesses that he's had. Sure, every ounce matters, and can be scary when you're walking this fine line. But I've actually been glad to see him pull through without massive loss. Look at his pictures - he's not wasting away!
Now, all that said, I'll reiterate: a tube is not the worst thing in the world, nor are other interventions, and they can/do fit within an AP schema when considered, researched and chosen, or disregarded, with the understanding that all parenting decisions MUST be made in consideration, first and foremost, of our children's best interest and not in subserviation to some crunchy ideal.
Hang in there! Keep us posted in the labs.
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Another suspicious thing that would make my skin crawl is the doc's opinion about Micky D's. Are you kidding me? We effing get this stuff all the time from ignorant people. As if feeding something else would be the thing. As if I'm withholding the "yummy food" because I'm too crunchy or some sh#t!. Uh, yeah.
Finally, PRS kiddos are just small. Really small. I've gotten used to that fact, and I believe Sam has the wisdom, experience, and researched understanding to distinguish between abnormal (for PRS) smallness and what is to be expected. If I remember correctly, Connor hasn't lost a substantial amount of weight in any of his most recent illnesses, nothing beyond what would be expected from the types of illnesses that he's had. Sure, every ounce matters, and can be scary when you're walking this fine line. But I've actually been glad to see him pull through without massive loss. Look at his pictures - he's not wasting away!
Now, all that said, I'll reiterate: a tube is not the worst thing in the world, nor are other interventions, and they can/do fit within an AP schema when considered, researched and chosen, or disregarded, with the understanding that all parenting decisions MUST be made in consideration, first and foremost, of our children's best interest and not in subserviation to some crunchy ideal.
Hang in there! Keep us posted in the labs.
I just wanted to offer some hugs.
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I wanted to offer some more
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s.
It's so interesting to me how different kids are viewed differently, medically-speaking, even when they have similar issues. Clearly, some docs (and posters) are looking at your DS and seeing a FTT kiddo b/c he's 20 lbs. at 2 yrs. My DD is turning 3 next week, has Down Syndrome, and weighs 22 lbs. She eats like a horse (much more than my 4yo, for example), is thriving developmentally (seriously, her development has exploded in the past yr., it's been fantastic to watch!
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), and not a single one of her docs has expressed undue concern at her size. So our two experiences couldn't be more different, yet our kids have similar medical concerns and are similar sizes. Why is that?
Is it b/c she's a girl, and girls are allowed to be smaller than boys? Is it b/c she has DS, and is expected to be smaller anyway? Is it b/c she's my fifth baby and NONE of my other children were ever on the growth charts for weight until they hit 4-5 yrs. old (although they are tall, just extremely skinny), so based on our family history, no one expected her to be heavier? Or are all our docs incompetent for not pressuring us to "make" her gain more weight?
I also take exception to your new gastro's assessment of junk food as "good stuff, he needs it." That's utter bunk and we all know it! It is just as easy and infinitely better health-wise to give our kiddos calorie-dense, but nutritious foods. Yeah, it's more work if you have food sensitivities to deal with (Sophie was allergic to dairy as a baby, and we have peanut allergies in the family, so like you, I had to seek out protein and fats without relying on the go-tos of dairy and nuts), but it's not impossible -- olive oil is our friend!
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And frankly, it appears he's not gaining any more on the McDonald's, anyway.
Something you could consider doing once you give birth in September that I had great success with with Sophie is pumping and separating your breastmilk to supplement Connor's diet. So, for example, you could nurse new baby on one side while pumping for 10 mins. on the other side, then stop, switch out pumping bottles, then pump for another 5-10 mins. The 10-min. milk (foremilk), you could mix with other pumped milk and store/freeze for later use. The 5-min. milk (fat-rich hindmilk), you could give Connor fresh in a cup. I used this technique for the first few months after Sophie was born, b/c she wasn't gaining enough and she couldn't have HMF due to her dairy allergy. She gained a full pound in the first week I tried it! It was very cool.
I hope the labs bring you some clarity as to what direction to head in next.
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s again.
Guin
It's so interesting to me how different kids are viewed differently, medically-speaking, even when they have similar issues. Clearly, some docs (and posters) are looking at your DS and seeing a FTT kiddo b/c he's 20 lbs. at 2 yrs. My DD is turning 3 next week, has Down Syndrome, and weighs 22 lbs. She eats like a horse (much more than my 4yo, for example), is thriving developmentally (seriously, her development has exploded in the past yr., it's been fantastic to watch!
Is it b/c she's a girl, and girls are allowed to be smaller than boys? Is it b/c she has DS, and is expected to be smaller anyway? Is it b/c she's my fifth baby and NONE of my other children were ever on the growth charts for weight until they hit 4-5 yrs. old (although they are tall, just extremely skinny), so based on our family history, no one expected her to be heavier? Or are all our docs incompetent for not pressuring us to "make" her gain more weight?
I also take exception to your new gastro's assessment of junk food as "good stuff, he needs it." That's utter bunk and we all know it! It is just as easy and infinitely better health-wise to give our kiddos calorie-dense, but nutritious foods. Yeah, it's more work if you have food sensitivities to deal with (Sophie was allergic to dairy as a baby, and we have peanut allergies in the family, so like you, I had to seek out protein and fats without relying on the go-tos of dairy and nuts), but it's not impossible -- olive oil is our friend!
Something you could consider doing once you give birth in September that I had great success with with Sophie is pumping and separating your breastmilk to supplement Connor's diet. So, for example, you could nurse new baby on one side while pumping for 10 mins. on the other side, then stop, switch out pumping bottles, then pump for another 5-10 mins. The 10-min. milk (foremilk), you could mix with other pumped milk and store/freeze for later use. The 5-min. milk (fat-rich hindmilk), you could give Connor fresh in a cup. I used this technique for the first few months after Sophie was born, b/c she wasn't gaining enough and she couldn't have HMF due to her dairy allergy. She gained a full pound in the first week I tried it! It was very cool.
I hope the labs bring you some clarity as to what direction to head in next.
Guin
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And FWIW, VeeGee, at 46 months, is just now 30 pounds. No one is worried anymore because there is growth and they're looking more at the trajectory of the height/weight incline than at any particular chart. It cracks me up because we're frequently told "how tall!!!" she looks, "Big for her age, huh?" I guess people think she's two!
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