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Discussion Starter #1
River has had issues with FTT for ever, actually, since an IUGR diagnosis at 17 weeks pregnant, but he got sick on May 4th and from the 4th to the 21st he lost 14ounces (making him 12lbs 15oz, he was 1 on May 2nd), and we had went to get tests ran to try to figure out why he had had a fever for so long on the 10th, and the only thing they found was a rhino and adeno virus, which shouldn't make a kid sick for 3 weeks.<br><br>
So, we were hospitalized saturday morning, we are trying to figure out the complete picture while we are hear, not just the sudden infection and weight loss, but the lack of growth all along, specifically the only gaining 11 ounces from 9 months old till 12 months old. They drew as much blood yesterday as allowed (1ml per lb of body weight, so they took 12.5ml) and are running at least 74 tests on it. He's having a sweat test today, though cystic fibrosis is really not a possibility, since I have a cousin with CF dh and I were tested before Janelle and I am a carrier, he isn't. He is also seeing OT since he takes no bottles, sippies, straws, open cups...you get the idea, and from before and after feedings it looks like he is only getting 16-20oz of bm a day at this point, so he needs more liquid than that.
 

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You can get some really high calorie formulas in through a lactaid/sns. If he's only getting 16 ounces a day (and he's not really eating many solid foods yet, right?), he's basically very very under nourished. If he can't take any sort of cups, I'd be requesting a lactaid (well, you probably can only order those) or a SNS and getting a preemie formula to him during breastfeeds. Mia still takes a lactaid supplement (only now it's coconut milk and not formula) since my supply has always been low. If you have a decent supply otherwise and it's just low because he's sick, at least it will keep him hydrated.<br><br>
Poor little guy. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad">
 

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<a href="http://www.kellymom.com/bf/pumping/milkcalc.html" target="_blank">http://www.kellymom.com/bf/pumping/milkcalc.html</a><br><br>
"Different babies take in different amounts of milk; a typical range of milk intakes is 19-30 oz per day (570-900 mL per day)."<br><br>
His intake might not be that low...although at a year, most kids are taking in solid food as well.<br><br>
You can ask for a creamatocrit to be done on your milk to find out the fat content too see if that could be a contributing factor.<br><br>
I hope you guys get some answers!!
 

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Discussion Starter #4
I had someone else suggest an sns as well, I'm going to ask about that, definitely before an ng tube...but it's not like I'm only making that much milk, it's like that's all he wants...cause sometimes he only nurses for 5 minutes and gets 2oz...<br><br>
He actually eats a LOT of solid food, and has been eating solids for regularly like this for 3 months now. So far today (it's 10am) he's had 4 graham crackers with peanut butter, half a single serve box of dry cheerios (he woke up 3 hours before breakfast is served, so he had to eat snacks from the nourishment room), an entire packet of maple and brown sugar oatmeal (made with whole milk and butter added) and a banana.<br><br>
And, we were told that once they turn 1, there are actually formulas with MORE calories than what is available for preemies, cause after 1 their kidneys can handle more protein, there is basically no chance we aren't leaving here on a high calorie formula, whether he figures out how to drink it out of a bottle/cup or an sns will work or we have to do an ng tube, he will be on a high calorie formula...we just have to figure out how many calories he's taking in per day on average and of course wait on other tests to get back...we already know he has some deficiencies (anemia...and then bycarbonate and something else that are not caused by malnutrition, the most likely cause is under developed kidneys, but we are looking into that before we know for sure) and he will be leaving on some compounded (cause they aren't available in infant/children's form) rx vitamins as well. But thus far, those are the only labs we have back, they got back like 6 out of 70some....but at least 40 of them had to be sent out, so they won't be back till wednesday or thursday at the earliest.
 

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Discussion Starter #5
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<div>Originally Posted by <strong>2boyzmama</strong> <a href="/community/forum/post/15439865"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;"><a href="http://www.kellymom.com/bf/pumping/milkcalc.html" target="_blank">http://www.kellymom.com/bf/pumping/milkcalc.html</a><br><br>
"Different babies take in different amounts of milk; a typical range of milk intakes is 19-30 oz per day (570-900 mL per day)."<br><br>
His intake might not be that low...although at a year, most kids are taking in solid food as well.<br><br>
You can ask for a creamatocrit to be done on your milk to find out the fat content too see if that could be a contributing factor.<br><br>
I hope you guys get some answers!!</div>
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But is milk usually their only liquid? Cause I was thinking it was a fine amount of milk for a 1 year old, but not enough total liquid in a day...I doubt my other kids were drinking more milk than this at 1, but they were drinking water as well.<br><br>
We did test the fat content of my milk back when he was hospitalized last July for a stomach bug...I never got the exact results, but the ped said everything was perfectly normal there. I really thought, with my 3rd (out of 4) kid to have failure to thrive that would be the answer! But, we now think that the other 2 kids being small and River being small is just coincidence...the other kids were small, but they gained weight pretty consistently...every time either of them lost weight there was an actual issue we could pin point (severe reflux, sleep apnea, food allergies) and it was never so severe, and they also never had these other symptoms...like sudden low tone (which is being evaluated by an OT and a neuro today...though, it got better last night just as suddenly as it had started...the nurse even witnesses it cause it was seriously a sudden change over the course of 15 minutes), fatigue, weakness, just not a normal baby.
 

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Have you looked at/contacted the MAGIC Foundation? They are an excellent source for children with growth disorders of varying origins including IUGR. You should check out their website and even call them as we've found them an excellent resource.<br><br>
Has he been seeing a pedi endocrocrinologist to monitor his growth?
 

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Has he been tested for Celiac's?
 

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<div>Originally Posted by <strong>OdinsMommy0409</strong> <a href="/community/forum/post/15440038"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Have you looked at/contacted the MAGIC Foundation? They are an excellent source for children with growth disorders of varying origins including IUGR. You should check out their website and even call them as we've found them an excellent resource.<br><br>
Has he been seeing a pedi endocrocrinologist to monitor his growth?</div>
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Yep, this was going to be my next question.<br><br>
Before this most recent illness that caused him to lose weight, has he been healthy? He has a history of being small, but it sounds like your other kids have tended towards that as well. How is he developmentally? I am trying to remember his history, maybe you haven't posted it (or I just don't remember).<br><br>
My son was just diagnosed as having a constitutional growth delay, meaning that he's just small...with no known medical cause (we ruled out everything from gastro to metabolic to nutrient deficiency to growth deficiency).<br><br>
I'm sorry if I'm forgetting a significant history...but it's not too uncommon for a kiddo to get hit with a bad illness of some sort, lose some weight, then once they're healthy again they'll get back on track. Even the gaining 11oz between 9 and 12 months is on the low side, but not a huge red flag in and of itself. As long as he's otherwise developing normally anyway.<br><br>
It is a little odd that he doesn't take in any other liquids. Have you seen the OTs yet? His nutrient intake seems really good though, so I don't know if upping liquids would make much of a difference (although it would be handy if he could take in supplements for you).
 

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Discussion Starter #9
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>OdinsMommy0409</strong> <a href="/community/forum/post/15440038"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Have you looked at/contacted the MAGIC Foundation? They are an excellent source for children with growth disorders of varying origins including IUGR. You should check out their website and even call them as we've found them an excellent resource.<br><br>
Has he been seeing a pedi endocrocrinologist to monitor his growth?</div>
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Never heard of the magic foundation. He just started seeing a pediatric endocrinologist, but no tests have been done yet cause they need him fever free and free of other signs of infection for 7 days before they do them to get accurate results. He's also going to be seen by endocrinology here as well.<br><br><br><div style="margin:20px;margin-top:5px;">
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<div>Originally Posted by <strong>Mittsy</strong> <a href="/community/forum/post/15440124"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Has he been tested for Celiac's?</div>
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He is having the screening ran right now, one of the labs ordered yesterday, and they will do the biopsy no matter what the screening says if we don't get any other diagnosis from all the other tests. Janelle and Travis were both screened for it, Travis twice, but no one thought we should do the biopsy.<br><br><div style="margin:20px;margin-top:5px;">
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<div>Originally Posted by <strong>2boyzmama</strong> <a href="/community/forum/post/15440130"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Yep, this was going to be my next question.<br><br>
Before this most recent illness that caused him to lose weight, has he been healthy? He has a history of being small, but it sounds like your other kids have tended towards that as well. How is he developmentally? I am trying to remember his history, maybe you haven't posted it (or I just don't remember).<br><br>
My son was just diagnosed as having a constitutional growth delay, meaning that he's just small...with no known medical cause (we ruled out everything from gastro to metabolic to nutrient deficiency to growth deficiency).<br><br>
I'm sorry if I'm forgetting a significant history...but it's not too uncommon for a kiddo to get hit with a bad illness of some sort, lose some weight, then once they're healthy again they'll get back on track. Even the gaining 11oz between 9 and 12 months is on the low side, but not a huge red flag in and of itself. As long as he's otherwise developing normally anyway.<br><br>
It is a little odd that he doesn't take in any other liquids. Have you seen the OTs yet? His nutrient intake seems really good though, so I don't know if upping liquids would make much of a difference (although it would be handy if he could take in supplements for you).</div>
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He's been small for ever, and this isn't the first time he's lost weight like this. But aside from these past 20 days, he's never had issues like this before in regards to the weakness, low tone, and things like that. He basically had serious trouble growing from before birth till 6 months, then from 6-7 months, 7-8 months, and 8-9 months he grew 1lb per month, actually a little more, going from 9lbs 15oz at 6 months to 13lbs 2ounces at 9 months... this was enough growth (plus he was eating solids so we thought we had a reason for the growth) to stop doing regular weight checks, so we don't know when between 9 months and 1 year old that his growth slowed back down, but at 1 he was 13lbs 13oz, and 21 days later he was 12lbs 15oz.<br><br><br>
OT hasn't been here yet, they are supposed to come today at some point (it's 12:30 here) we did see the CF team, sweat test was a failure today, both their discs leaked (both were brand new opened right here, so no one knows why both were defective) so we have to re-do it tomorrow. They are also checking to see if he is a CF carrier if he doesn't have it, cause there is a pancreatic condition carriers can have that can cause issues with weight gain issues, and also for a symptomatic carrier sort of thing that is possible.<br><br>
Genetics added on testing for russel silver syndrome due to his trangular face and prominent forehead (which are news to me. not something I ever noticed before...) as well as doing an array (which was ordered yesterday) and she thought some of her findings (skin appearance, ribs protruding) were enough to send a more senior doctor from genetics down later today to see if more tests should be added.<br><br>
That's where we are at now...we are still supposed to see endocrinology, neurology, immunology, and metabolics teams.
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
Nothing constructive to offer. I hope the doctors are able to find way to help your little one grow.
 

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Wow. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">s I, too, will have you and your baby in my thoughts and prayers. Hopefully, it will be a short road to an answer.
 

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Discussion Starter #12
That's kinda what our ped is hoping...that this hospitalization will be the quickest way to a diagnosis...<br><br>
the dietician thinks he has way too high of a palatte, so she has put in orders for ENT and speech. And she also has lactation coming to see how much I can pump, since I haven't pumped in months, and they are going to recheck my milks fat content and such since it can change a lot over the course of 10 months.<br><br>
The geneticist (higher up one) just came in and ordered kidney and heart ultrasounds and an EKG, but he also things russel-silver is a definite possibility, just from looking at him (seriously, I still think he looks normal!). And if someone else wants him sedated for something or other, he wants to add on an mri, but if no one else is sedating him, he doesn't want to either.
 

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With that high arech palate I would immagine that the micro array will also be looking for 22q (2boyzmom's little guy has this, Megan(my youngest) has the symptoms with no genetic cause). I looks like many of the Russel -sillverman overlap the 22q.<br>
Certainly the palate could be causing intake issues - my DD's certainly did at the start (my DD's is/was cleft - but they can behave simalarly)
 

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It sounds like this (hospital in patient <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> ) is exactly what he needed to get answers. I'm glad genetics is being looked at for him. I was going to mention that and metabolics based on your OP, your follow up sounds like genetic is more likely given physical markers.<br><br>
Are you doing ok?
 

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Discussion Starter #15
I'm doing ok, I will be relieved if/when we find out something is wrong...or just knowing we have really exhausted every avenue and know that whatever it is it's not serious. This has been going on for so long now, and having some answers would be good. The physical markings thing totally threw me though, now that I've looked at some pictures I can definitely see what they are seeing with his large forhead and such.<br><br>
OT came, she is having gastroenterology come up and do a ph probe to see what is going on as far as reflux (he's been on prevacid since 2 weeks old). We talked about reflux surgery back around 7 months old or so? But it seemed to be getting better lately.<br><br>
Every time someone comes in here they decided to call in another specialist.
 

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<div>Originally Posted by <strong>momtoalexsarah</strong> <a href="/community/forum/post/15441836"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">With that high arech palate I would immagine that the micro array will also be looking for 22q (2boyzmom's little guy has this, Megan(my youngest) has the symptoms with no genetic cause). I looks like many of the Russel -sillverman overlap the 22q.<br>
Certainly the palate could be causing intake issues - my DD's certainly did at the start (my DD's is/was cleft - but they can behave simalarly)</div>
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Yep, I was thinking the same as I was reading the symptoms of Russel-Silverman, but then again, a lot of those symptoms overlap a lot of syndromes. I'm glad they ordered the micro array. Maybe it's nothing, maybe he's just inherited some small genes, and got unlucky with some illnesses that are kicking his butt. Maybe his palate is unrelated to anything (I had/have a high arched palate which led to a cascade of issues, but my chromosomes are normal).<br><br>
The arched palate could be why he doesn't drink from a cup or straw, it is hard to get good suction. Could also be why he doesn't nurse much, it takes a lot of energy to form a seal with a palate like that (read Dr Palmer's webpage <a href="http://www.brianpalmerdds.com/bfeed_frenulums.htm" target="_blank">http://www.brianpalmerdds.com/bfeed_frenulums.htm</a> there's lots of info on there about how palate, tongue, and jaw development effect feeding and behavior)<br><br>
What do his ears look like? Ear shape is often a big marker for something chromosomal. Also, if there is any issue with ears, it's prudent to check kidneys, because ears and kidneys develop simultaneously in utero, so if something goes wrong with one, if often effects both. I'm glad they're doing a kidney scan.<br><br>
Sounds like he's getting a really good work up. You're right, they'll either find something, or you'll know that every single stone was turned, and he's normal. Just remember...you can say no to anything that makes you uncomfortable. Sometimes drs get all into testing mode and forget that there's a baby in front of them, you know? Parents, too, can get so easily caught up in the hospital mind-set. You can also ask for a day of no testing if you think that he needs to rest for a while. Ask for Child Life to come visit, bring him some toys or activities, show you where the play rooms are, etc. Remember that he's not *sick* right now, so he doesn't have the same restrictions that other kiddos there might have.<br><br>
Keep us updated!
 

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So, today has been filled with more tests, but some definite answers. His kidney ultrasound was consistent with russell-silver syndrome as well (but, it could also be consistent with other syndromes, it's just this is the one we are most looking at right now), and his growth hormone levels are low, so even if we don't leave with a diagnosis, we have an answer as to why he isn't growing and a treatment (growth hormone therapy) to help. Because we do now have some answers we will probably be able to leave either tomorrow or thursday, we are just waiting till every test has been run to be sure, and genetics would like us to wait till we get the tests for russell silver back as well before we go. But, all in all, answers are a good thing, so we are pretty happy with just knowing something.<br><br>
His ears are tiny and pointy, like an elf kind of. They were nearly non existent and had no structure at all when he was born, which I guess is typical for preemies, but he was *barely* premature, and even then, he was only premature by the dating u/s my OB did not the one my peri did and both of those were done in the 12th week of pregnancy. He was by my ob born at 36w5d or something like that, and by the peri 37w1d.
 

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Hi Cinder, we did a week stay in the summer for ftt. I'm glad you're getting good care and it looks like you might have some answers. Just wanted to send you some support. We tried neocate for formula but dd wouldn't take it, she does much better with duocal added to everything.
 

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We are home and this is what we know thus far! He definitely has low growth hormone<br>
levels, this will need to be taken care of, but if there is no other diagnosis then there is no difference between doing growth hormone therapy at 2 years old and doing it anytime before puberty, so it's not something we have to worry about now. Genetics is almost 100% certain he will get a russell-silver diagnosis, our ped is not as sure, the test was sent out we will have results within the next couple weeks. We have a followup at genetics for the review of his chromosomal array and to check out Janelle and Travis on November 15th. Right now he definitely has a lowered/compromised ... immune system, but at this point there is no way of knowing if it is a permanent thing or a condition causing it (though, he is being checked for all of this) or if it's just due to 10 viral infections in the past 90 days and he was unlucky to catch that many things, but we have to keep him home and healthy and away from people "who we wouldn't let him share a drink with" for at least long enough that we can retest this stuff with a baby who has been healthy and, most importantly, fever free for an extended period of time.<br><br>
And that's all we really know. But that's enough, out of all the things he could of had wrong, we got the best possible answers, we knew there was no way he was "just small" like we've been told time and time again with Janelle and Travis, so we knew that something would come up, we are just glad it's nothing scary and serious at this point.
 

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Check out the Magic Foundation site and there is also a Russell Silver Yahoo group. There is a growth delay conference in Chicago every year in June or July I think. Just an FYI too - sometimes RSS is often a diagnosis of exclusions. Few kids/adults have the genetic marker for it.
 
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