Today's Dx: Failure to Thrive UPDATE pg 4 - Page 3

[preemiemamarach]

Originally Posted by MotherWhimsey

it's probably cause she's still gaining height. A lot of GI's don't worry until both stop.

Quite possible- my DS has a growth chart that looks nearly identical to the OP's, but because his height has ticked up slightly, nobody would entertain the notion of a feeding tube.

[irangel]

This may have already been done (even talked about and I could have forgotten) but have they done any stool tests to check for malabsorption, an endoscopy, allergy testing, or do you track his caloric intake?

[suprgrl]

Originally Posted by irangel

This may have already been done (even talked about and I could have forgotten) but have they done any stool tests to check for malabsorption, an endoscopy, allergy testing, or do you track his caloric intake?

No stool test or endoscopy or allergy testing have been done. I am starting a food journal to go over with a dietitian (friend of SIL) who has volunteered her services.

I talked with the ped today who explained away his urinalysis results saying that it could be normal to have ketones and bilirubin in his urine, so she is ordering a repeat urinalysis. I'm hoping to be able to get that done tomorrow.
After I told her what Dr Parikh said she agreed to refer me to a geneticist at UVA.

I am also set to have a phone conference next week with a toxicologist who was recommended to me by my aunt the NFL RN.

So hopefully this means the ball is rolling. I am so overwhelmed with the miriad of specialists he may need to see. It is confusing to know where to start or go next. What if the geneticist doesn't have the answers? Then what? I get way too far ahead of reality. I just want my baby to be okay and for things to not get worse.

Here are some pics I took of his ribs and stomach just after a full meal.

[ShadowLark]

OMG, that makes Brendon look fat! He's my almost 2 year old, he ways 22 1/2 lbs and is 33 1/2 inches tall. I'm thinking malabsorption or something, too - we've just started with testing, his CBC and metabolic panel came back normal (so did his thyroid and lead check). Honestly, I'm looking for what to do next and how to get him to GAIN WEIGHT!
I swear the Developmental Ped is thinking neglect/abuse. He also has Global Developmental Delays, we just started Help Me Grow (EI in Ohio). We're sending in a food journal either tomorrow or Monday for the Nutritionist to look at.
What are some good gluten free diets? I have to try something, this is BEYOND scary!
(Sorry for hijacking, I figured the topic was related enough to be useful to both of us.)

[ShadowLark]

Originally Posted by ShadowLark

OMG, that makes Brendon look fat! He's my almost 2 year old, he ways 22 1/2 lbs and is 33 1/2 inches tall. I'm thinking malabsorption or something, too - we've just started with testing, his CBC and metabolic panel came back normal (so did his thyroid and lead check). Honestly, I'm looking for what to do next and how to get him to GAIN WEIGHT!
I swear the Developmental Ped is thinking neglect/abuse. He also has Global Developmental Delays, we just started Help Me Grow (EI in Ohio). We're sending in a food journal either tomorrow or Monday for the Nutritionist to look at.
What are some good gluten free diets? I have to try something, this is BEYOND scary!
(Sorry for hijacking, I figured the topic was related enough to be useful to both of us.)

Sorry, can't spell - he WEIGHS 22 1/2 pounds!

[ShadowLark]

Oh, and we're actually IN Cleveland - I'll have to call that doctor up! Thanks for whoever posted about him!

[irangel]

Originally Posted by suprgrl

No stool test or endoscopy or allergy testing have been done. I am starting a food journal to go over with a dietitian (friend of SIL) who has volunteered her services.

I talked with the ped today who explained away his urinalysis results saying that it could be normal to have ketones and bilirubin in his urine, so she is ordering a repeat urinalysis. I'm hoping to be able to get that done tomorrow.
After I told her what Dr Parikh said she agreed to refer me to a geneticist at UVA.

I am also set to have a phone conference next week with a toxicologist who was recommended to me by my aunt the NFL RN.

So hopefully this means the ball is rolling. I am so overwhelmed with the miriad of specialists he may need to see. It is confusing to know where to start or go next. What if the geneticist doesn't have the answers? Then what? I get way too far ahead of reality. I just want my baby to be okay and for things to not get worse.

Here are some pics I took of his ribs and stomach just after a full meal.

If it were me I would want to see a GI as my first line of defense. There are some much less terrifying problems that could be causing his lack of weight gain then a meta/mito problem and a GI would be the one to help sort through those.

[suprgrl]

Originally Posted by irangel

If it were me I would want to see a GI as my first line of defense. There are some much less terrifying problems that could be causing his lack of weight gain then a meta/mito problem and a GI would be the one to help sort through those.

Can you give me some ideas about what types of things? Where to look to find more info about GI issues? I'll try to do some googling tomorrow. Right now I've got to get to bed... I haven't been getting much sleep lately and DS1 has been getting the brunt of my stress in the form of my impatience with him.

[Mama Poot]

Originally Posted by suprgrl

No stool test or endoscopy or allergy testing have been done. I am starting a food journal to go over with a dietitian (friend of SIL) who has volunteered her services.

I talked with the ped today who explained away his urinalysis results saying that it could be normal to have ketones and bilirubin in his urine, so she is ordering a repeat urinalysis. I'm hoping to be able to get that done tomorrow.
After I told her what Dr Parikh said she agreed to refer me to a geneticist at UVA.

I am also set to have a phone conference next week with a toxicologist who was recommended to me by my aunt the NFL RN.

So hopefully this means the ball is rolling. I am so overwhelmed with the miriad of specialists he may need to see. It is confusing to know where to start or go next. What if the geneticist doesn't have the answers? Then what? I get way too far ahead of reality. I just want my baby to be okay and for things to not get worse.

Here are some pics I took of his ribs and stomach just after a full meal.

I'm no expert but I will agree that those pictures show a child who clearly is not "well". I've never seen anything like that, with the skin sagging and all that. I hope you get some answers. The Cleveland Clinic is wonderful-we had to go up there to see a specialist once and it helped to make a very scary experience not so bad for us.

[irangel]

Originally Posted by suprgrl

Can you give me some ideas about what types of things? Where to look to find more info about GI issues? I'll try to do some googling tomorrow. Right now I've got to get to bed... I haven't been getting much sleep lately and DS1 has been getting the brunt of my stress in the form of my impatience with him.

A GI will do a lot of stool samples to look for malabsorption and other possible abnormalities. They'll also want to do some more lab work to look for malnutrition and possibly check for allergies. I have known several kids who had allergies and that was actually what was causing them to start losing weight. Most likely a GI would also want to do an endoscopy to look for things like celiac and any other abnormalities. A GI is really the one who handles weight gain or loss issues where as an endocrinologist is going to deal more with a kid who's not growing in height (or has thyroid, diabetes, etc) which it looks like your child is holding his own just fine in that department.

[mamaverdi]

Cross-posted.

We aren't GI docs, so we can't tell you exactly.

But Emily is right; GI should be the first line of defense in an FTT type situation.

Genetics is gonna say: have you seen GI? (Unless he has striking features of some sort---or other striking history you haven't mentioned.)

Toxicology? I'm not sure why you would pursue this first.

Endocrinology: I would likely see them before genetics based on the ketones. But THEY are gonna ask if you've seen GI.

I'm wanting to be surprised that your ped is not sending you to GI, but I'm not. My experience with not so good peds is that they think they can do GI's job.

Very simple GI issues like Reflux, Food intolerances, and the like can cause FTT. More complex ones like EE and pancreatic enzyme deficiences can cause even further ones.

Those types of issues CAN cause elevated ketones among other things.

[suprgrl]

Thanks. I'm sorry for my what-might-be-dumb questions. This is all so new to me. Prior to this I could have counted on my fingers how many times I had seen a doctor in my whole life, and I have never dealt with specialists of any kind. So this is a whole new world to me. And it is very overwhelming. I am trying to learn how it all works with referrals and insurance and seeing the right person since my ped seems to have no clue and won't give me any real advice. Like yesterday on the phone when I asked about seeing a specialist she was like, "well, who would you like to see?" Meanwhile I am sitting here watching my son who does not look good. I don't see how he can get much thinner. His little waist is not there as it is! I had these concerns at 8 months and our ped blew them off then, so I have been waiting and seeing. I really feel like it is becoming urgent that we do something. I wish he still looked as chubby as he looks in my siggy pic, but that was taken in April. I just wish I knew who to go to that will have the answers.

Originally Posted by mamaverdi

Toxicology? I'm not sure why you would pursue this first.

These are people my aunt is friends with. She feels that for some reason his body was unable to effectively process the drugs from his surgery.

[irangel]

Originally Posted by suprgrl

Thanks. I'm sorry for my what-might-be-dumb questions. This is all so new to me. Prior to this I could have counted on my fingers how many times I had seen a doctor in my whole life, and I have never dealt with specialists of any kind. So this is a whole new world to me. And it is very overwhelming. I am trying to learn how it all works with referrals and insurance and seeing the right person since my ped seems to have no clue and won't give me any real advice. Like yesterday on the phone when I asked about seeing a specialist she was like, "well, who would you like to see?" Meanwhile I am sitting here watching my son who does not look good. I don't see how he can get much thinner. His little waist is not there as it is! I had these concerns at 8 months and our ped blew them off then, so I have been waiting and seeing. I really feel like it is becoming urgent that we do something. I wish he still looked as chubby as he looks in my siggy pic, but that was taken in April. I just wish I knew who to go to that will have the answers.

Some pediatricians for some reason are just clueless and others are very laid back (too laid back). While the pediatrician should be concerned at this point she/he might just be one of those laid back doctors and since he's really not that small yet (17lbs at 11mos really isn't that bad until you look at where he was at birth) they might just not see it as an issue. Most doctors are going to look at the weight for height scale and though I haven't plotted him on that looking at his growth chart I'm assuming he'd probably be on the low end of that chart. We've had doctors however who weren't even concerned with my daughter's size and she's much farther off the chart than your son (20lbs at 2.5yrs) so it's not TOO much of a surprise to me that a regular pedi hasn't really been alarmed.

[suprgrl]

Originally Posted by suprgrl

Also, here are his growth charts:
Weight
Height

I really don't want to wait until he gets smaller. If he had been small since birth that would be one thing, but to not even have doubled your birth weight at 1 year.. I don't see how that is not worrisome.

[irangel]

Originally Posted by suprgrl

I really don't want to wait until he gets smaller. If he had been small since birth that would be one thing, but to not even have doubled your birth weight at 1 year.. I don't see how that is not worrisome.

I totally agree I'm just saying that if a kid is proportional a doctor is often much less concerned with their actual weight. I think you're definitely doing the right thing by having him seen by someone who will take you seriously. It took a lot of pushing from me before anyone took me seriously about my daughter's growth issues because she was lean but relatively proportional.

[preemiemamarach]

Originally Posted by irangel

I totally agree I'm just saying that if a kid is proportional a doctor is often much less concerned with their actual weight. I think you're definitely doing the right thing by having him seen by someone who will take you seriously. It took a lot of pushing from me before anyone took me seriously about my daughter's growth issues because she was lean but relatively proportional.

this is so true. My DS is 13 months and around 19 lbs. He was a 33 weeker and 5 lbs at birth, so everyone immediately assumes he just is small because of that, until I pull out his growth chart and show them that he's only gained about a pound in the last 7 months- he was in the 50th percentile for weight (unadjusted) until he was 6 months. My son is also very proportional (although he has the same ribs showing and sagging belly skin as the OP's son), and it's like pulling teeth to get people to realize there's an issue.

[irangel]

Originally Posted by preemiemamarach

this is so true. My DS is 13 months and around 19 lbs. He was a 33 weeker and 5 lbs at birth, so everyone immediately assumes he just is small because of that, until I pull out his growth chart and show them that he's only gained about a pound in the last 7 months- he was in the 50th percentile for weight (unadjusted) until he was 6 months. My son is also very proportional (although he has the same ribs showing and sagging belly skin as the OP's son), and it's like pulling teeth to get people to realize there's an issue.

Yep. At 18mos when my dd was only 17lbs and her growth chart was looking like this, http://2.bp.blogspot.com/_bTnxe-T8eq...owth+chart.jpg people still were saying it wasn't a concern because she was also only 27in. Turns out she has a severe endocrine deficiency and that's why she was so short. The lack of weight gain we've still yet to figure out. But everyone said it was because she was premature, which she was but she was also making great strides towards getting onto the chart and then she suddenly stopped even heading that direction.

[RoadWorkAhead]

Originally Posted by preemiemamarach

Quite possible- my DS has a growth chart that looks nearly identical to the OP's, but because his height has ticked up slightly, nobody would entertain the notion of a feeding tube.

See we were still growing height wise though slowly and developing "normally" (turned out she was meant to be an even quicker learner...who knew?!) BUT we went into it knowing that she needed an elemental diet and she wouldn't eat it, so that might be why they pushed our tube when they did. DD always looked proportional and I constantly heard the "She's just small" line....Then she got tubed and gained like 7 lbs, 2.5 inches and 3 shoe sizes. SHe regained all lost vocab, improved swallow skills and generally took off. Its finally, now at 6 months out, stopped the "maybe she's just meant to be small" camp!

[3girlmom]

HEY! I live in Central Virginia! UVa? My daughter's primary doctor is great, but when things weren't going so well it was way out of their league. Specialists were the way to go, and you need a developmental pediatrician. I'd be happy to talk to you about my experiences with UVa if you want, and we're seeing our second pediatric GI doctor there next month.

[lightheart]

Originally Posted by suprgrl

This is all so new to me. Prior to this I could have counted on my fingers how many times I had seen a doctor in my whole life, and I have never dealt with specialists of any kind. So this is a whole new world to me. And it is very overwhelming. I am trying to learn how it all works with referrals and insurance and seeing the right person since my ped seems to have no clue and won't give me any real advice. Like yesterday on the phone when I asked about seeing a specialist she was like, "well, who would you like to see?"

okay first off hugs hugs and more hugs for what your son and your family is going through right now, I have no advice on specifically what's going on... way off of what's going on with our little guy, he's low weight and low height but that is a feature of is genetic issue, a skin disorder, and your son certainly doesn't have the one my son does, (there are no bumps an red spots to his skin) so you can easily mark 1 of many things off your list...

Okay here is where I hope I can make your life a little less hectic...

it may be a good thing that she was was like, "well, who would you like to see?.... it would be nice if she was wiling and able to say "he needs to see X dr who is a specialist in Y and his office is located Z) but if you have gotten over the hump of getting her to write referrals and she's willing to send you wherever... just say the word and her office will get the referral to them... it's more leg work on you trying to figure out things but it means when other specialists say to you go to a X Dr. all you have to do is call and get the referral sent over It's nice because if you have a problem with a certain dr in particular it s sooo much easier to change to another Dr. because your primary has no real bone in the pot so to speak...

Also, find yourself a notebook, leave the first 10 or so pages blank so you can go back when you have time and chronologically list what doctors have been seen, procedures done and tests have been run... start today and carry that notebook as part of your life. Don't have to put the whys and the results of the testing in it, but keep track of where you go, who you see, what tests are run, get a couple of folders or a 3 ring binder, whenever you see a doctor or have something done ask that test results and office notes are sent to you, put them in the binder, ...................

company coming, will continue later............... I'm back.

If you call an office, write it down, who you spoke to if your supposed to follow up or what the are supposed to do. Basically keep a journal of your sons medical history.

Sometimes it's easier to ask for a business card at the appointment and just tape it down so you have the office #, address, fax # all that stuff.

The purpose behind this is it gets pretty difficult to keep up with everywhere you have been, what has been done and even if you do ask for the office notes/reports not all doctors offices will send them with this you may not have the actual results but you can say hey he had that or this done and when.

Call your insurance, whether private or state based and ask for case management, it is it's own special little office within the insurance company that will kind of work as a go between between your primary care dr and the specialists, they will make sure you have the referrals you need and all the paperwork is lined up. They can sometimes get you into see someone sooner rather than later. (Thy are wonderful at cutting red tape.) Key words to use when asking for case management is multiple issues, multiple specialists, so many appointments that it is difficult for you to keep track and on top of the referrals. Sound overwhelmed not incompetent.

Have you contacted your state early intervention program? They work birth to 3 years of age. they work more in lines with education.... therapy, is what I think of most, OT, PT, speech... but I think if there is any developmental delays at all they will help you identify them and get your child the help they need. They can work with you too on scheduling drs appointments, making sure the referrals are set up, they can request the office notes and get them to you (will have to sign a waiver for them to do that). It's a real in person face to face type service.

Check with your local health department also to see if they have a children's special service or something similar that might be called something else. Tell them your sons issues and that you need help figuring out all the ins and outs of having "so much medically going on"... similar to the early intervention system in the help they can provide but sometimes they can help in other areas where EI can't and vice versa.

That's all I can think of for now, it's really difficult keeping up with all the doctors but it's doable.

Hope you guys figure things out! Hugs again.