Is my son's doctor worrying too much??

Heather - posted on 05/11/2012 ( 43 moms have responded )

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Here's my son's story: My son is 19 months old and has always had a weight issue. He is very tiny for his age, but i see kids who seem very tiny too for their age. His weight has gotten to the point that at his 15 month check up he lost weight, only .3 oz, but his doctor worried and wanted to run tests on him. Since that check up he has not gained nor lost any weight. He has been at 20 lbs for the last 4 months. His tests were coming back normal till the last one. The "Sweat Test". To test for CF (Cystic Fibrosis). He had to take it twice and both came back borderline. Meaning he may have CF. So we just had his blood drawn which will officially determine if he has CF. If it comes back that he does not have CF they want to do all of these other tests to figure out why his "Sweat Test" came back borderline. If that becomes the issue i dont know how many tests I, especially my SON, can handle! I just don't know what to do? I just don't want to torture my son, but i do want to make sure he is healthy! I'm all over the place right now, not knowing what to do. Is his doctor going over board with this .3 oz weight loss or is this the right thing to be doing?! I need to know from another mom's point of view. I don't know many other moms with young kids!

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Danielle - posted on 06/05/2012

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If your child has cropped up borderline for CF, then I suggest you take it seriously.
At least follow through with the tests to determine if it could be a serious diagnosis. CF can be a very dangerous disease, and the life expectancy of an individual with CF can vary depending if you have proper treatment.
I think that I would rather have a proactive doctor, than a dismissive doctor. I would appreciate the tests. Yes, people vary in sizes, but the fact that your child lost weight can be a cause for concern. I am sure if he had gained the .3oz, or at least broke even, then there would be less pressure for follow-through.
You never know what can happen in the future. I'd rather be paranoid and look through all alleys of possibility before throwing in the towel.

If the initial tests had cropped up negative for everything, then you also have to consider that it probably would have changed the outcome of the doctors request for follow up appointments.

It seems like I may stand alone on this particular issue, but I would want to know 'why' if my child wasn't gaining weight...

Alison - posted on 05/11/2012

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A girlfriend of mine has a son that was having trouble gaining weight and come to find out he is allergic to almost all foods. If you are second guessing your dr i would get a second opinion. Most likly they are going to say the same thing and run a bunch of diffrent tests. My daughter keeps getting blatter infections but i know whats causing them she just got potty trained and she wasnt letting me wipe her she wanted to do it...and she wasent doing a good enough job. So i spend the last month going back and forth from dr to dr about this. Finally her peditrician said she wanted to do a ultra sound of her kidneys and do a cathider test and i thought this was a little excessive bc i knew what was causing it. but the way i look at it is 1. they wont remember it. 2. better safe than sorry.

Nicki - posted on 06/12/2012

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I def agree that u should find out about the cf first that is the most important but if that comes back normal than i think u should def trust urself as his mom u know what is best whether u believe that or not. my 3rd son was born with medical problems but i was the only one that knew there was an issue. i had to keep arguing with his doc b4 she would agree to do tests she thought i was over reacting...turned out i was right all along we found out when he was 9 months old and he was lucky to be alive. he has bronchomalacia, tracheamalacia, and asthma...bronchmalacia is a birh defect in his lungs that causes chronic infections and pneumonia, tracheamalacia is a birth defect in his throat that make shim stop breathing in his sleep if he isnt positioned correctly....anyways after finding all this out we had to see a lung specialist and he was put on steroids. they worked wonders at first but over time i started to see changes in him...he started getting more and more infections that werent helped by meds and was hospitalized a lot....i decided on my own after doing some research to try taking him off the steroids by weaning him off slowly...the less he hda the better he got...so i told the lung doc my findings and she literally screamed at me and told me i was killing my son...i was heart broken and dint know what to do at first. but i later realized it was me that had been right about him since birth and i knew what he needed and those drugs were making him worse not better i finally found a doc that agrees with me and supports my decision...my son is now almost 6 and hasnt had a breathing episode in over a year. i know i did what was best fro my son and u will too. u obviously love ur son and if u feel u should see another doc go for it...if u feel like he is healthy then so no more tests...i also agree with u that .3 oz is not really weight loss. my daughter had issues gaining weight when she was that age too. she even did lose more than 1 lb but was perfectly healthy and still is. every1s weight fluctuates a little from time to time....if it turns out it is cf then the doc was right to test and no harm done, but if it turns out that isnt it then u know the doc could be over reacting and over testing ur child. u r not a bad parent to refuse tests. sometimes its whats best :) good luck

Jennifer - posted on 06/05/2012

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Listen to your doctor! Follow thru with any and all testing they want to do. Better safe than sorry. A lot of these diseases can be very serious or fatal if they do not have proper treatment, including CF.

At some point, you will either have an answer or he will gain. FIND OUT THE REASON for the testing to come back borderline!

Dora - posted on 05/30/2012

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Just curious did the pediatrician also measure his height? I know from experience with my oldest son who is thin but eats like a horse, whenever he went through a growth spurt his weight dipped down. Either way I would day get the tests done so you and your boyfriend have piece of mind. I think it is good that your pediatrician is being extremely cautious instead of way too conservative & later finding out something was wrong. Also you mentioned he has several bowel movements a day. Has he been checked out by a Gastroenterologist? Has he been checked for Crohn;s Disease? I hope everything turns out on the bright side for your little guy :)

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Nathalie - posted on 06/23/2012

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At this age, kids don't tell us if something is wrong, if they have pain, etc. This is why the doctors need to follow their growth. It could be the only way to tell if a kid is sick. So I don't think your doctor is going overboard, he just has to make sure everything is ok with your son. I personnally think you need to do the tests he'll prescribe just to make sure you do everything you can for your child to be healthy.

Heather - posted on 06/16/2012

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When the nurse told me that they did find an unknown mutation she said "that" could be the cause for his borderline results. She told me that is how its looking but they just want to be safe than sorry! Which i totally agree with! She said we may never find out what that mutation is and never find out why he came back borderline and after so long the doctors may just declare the mutation being the reason for the borderline results and that he is just a tiny kid! That really made me feel soooo relieved when i heard that! Im sure ill find out more about how long till he can just go to a regular doctor at his appt with the pulmonary doctor on the 29th! Ill of course let everyone know how that goes :)

Bethany - posted on 06/16/2012

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thats great news about the cf and lets just hope that the other thing makes him who he is and that the weight thing is just cos hes small :)

Sarah - posted on 06/16/2012

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This sounds exactly like the experience my Aunt had with my cousin. It ended up that my cousin had asthma & some very serious food allergies (wheat & tree nuts). I remember her expressing the same concern about all the testing. My cousin was "failure to thrive" & OUTSTANDINGLY tiny. At age 5 she was the size of a 2 and a half y.o. Some kids are just on the small side but the CF test being borderline might indicate some kind of health concern that needs attention. If it ends up that there is nothing wrong then that's wonderful, but if there is something wrong it's better to know.

Sarah - posted on 06/12/2012

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I agree - get a second opinion. If the doctor suspects a problem, then I would be concerned. You know your child best & sometimes doctors do go overboard. He seems like he's healthy. My daughter was born 6 weeks early & has always been tiny. Even at age 4, she's barely 30 lbs.

Heather - posted on 06/12/2012

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@nikki- reading what happened to ur son and how u handled it def gives me the courage to stand up for my opinion and my feelings bc "moms know best" thank you :)

Great news everyone, my son does not have cystic fibrosis! But they did find an "unknown mutation" in his bloodwork. They have not seen anything like it before. The nurse practioner at the genetics department told me that this isnt necessarily a bad thing bc as if right now it is not causing any harm to my son. But at the same time since they do not know what it is they need to keep an eye on it. The nurse said it could be a mutation that most people do have bc so much happens when the soerm and egg come together and inknown mutations happen often and people are fine and mostly never find out they have an unknown mutation! She called it a "unique mutation", it makes that person just who they r! Where as it could all of a sudden start causing harm bc it is an unkown mutation and that going to the pulmonary doc every so often, they'll be able to catch it in time to hopefully stop it. The nurse also said this may be the cause for my sons two borderline sweat tests and that we may never find out the truth too! My son will havd a few tests (not many) to still figure out the borderline issue but overall not alot of torture. If his pediatrician tells me she still wants to run tests for the weight issue im going to go to a second doc. But if she doesnt ill stay with her. Thank you to all of u for ur help and support!!! It really helped me through this all and still is! :)

Bethany - posted on 06/09/2012

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good luck sweetie, fingers toes n all other parts that can be crossed wil be for a good out come.

:)

Heather - posted on 06/08/2012

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I still have not heard anything and i think next week will be a month since the bloodwork. So if I do not get a phone call by next friday I'm going to call to c whats going on! Im sooooo nervous for the results. I just want to hear that he does NOT have CF! Thank you for caring :) i will def keep everyone posted and let u all know the results. Thank you to everyone for your opinions and information! It really helped me with my decision to try a secondary doc, if these results come back in the clear! I will try to post the results by next weekend! (if i find out)

Deb - posted on 06/08/2012

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heather, just wondering if you've heard anything more. Are you still doing testing the end June? I'm praying that all goes well. Keep us posted.

Heather - posted on 05/30/2012

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@ Dora- they do measure his height at every check up and they say that hes def going to be tall. At his 18 month check up (he was actually 19 months) his height was 31". Which is average. He had been growing in length very well. They never really said anything about maybe a growth spurt just being the issue. Never considered that, which I agree could be a factor. I will def bring that up at his next appointment! Also he has not been checked out by those docs and ill def bring up the idea to his pediatrician. The constant bowel movements can def explain why hes thin. He just doesnt keep anything in! So def bringing that up. Thank you for the ideas!!!!!

Anna - posted on 05/26/2012

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My son is in the 10th percentile, and has been since he was about 8 months old. At a recent checkup his PCP referred him to a nutritionist to see why he was having trouble gaining weight. The nutritionist asked us about his eating habits, about our eating habits, and about the foods we chose. Her conclusion? He's normal. That's right. My skinny kid is normal. He eats when he's hungry, and he tends to choose healthy foods (most of the time). I myself have been very small my whole life, so what else could we expect? My son is energetic, extremely smart, playful, and on track (I like to say he's ahead of the curve) for all his developmental abilities. Some kids are just small. We have a scale in our bathroom, and I do worry when his weight fluctuates even a little bit, but I know that we're doing the right thing; we provide him with a wide variety of foods and make sure he gets something from every food group every day. My husband and I love to eat a wide variety of foods, and even though right now my son's super picky about what he eats, we give him ample opportunity to try different things.

In short, some kids are just small. If you think your doctor's being excessive, get a second opinion.

Heather - posted on 05/25/2012

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Thank you everyone!

@ Michelle harris. I will def consider that tecnique. I had to jave my sister come with me for his bloodwork bc i knew i would break down. It was still a very upsetting bloodwork. He was screaming like he was being tortured the whole time and he kept yelling "all done, all done!!" that was very hard for me! So i will def give that a try!

@Megan Robbins- he def has a fast metabolism. No matter what he eats he goes to the bathroom soon after. And even when u give him alot he jut goes ALOT more! His aunt is the exact same way! I use to be like that when i was younger.

@ Amanda Adams- thats why i've been getting frustrated lately bc i have the doctor who did the "sweat test" now telling me that she still wants to see him and run tests her self at the same time he is getting tests done by his genetics doctor. I am def not happy about that. And as far as i knew that any necessary tests will be done one at a time with the genetics doctor! I cant miss that much work with in a week and above all dont want my son going through so many testings at once. Its too overwhelming and too much information going on at once. I can only understand one test at a time!!

Megan - posted on 05/22/2012

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hope everything turns out alright but as far as weight goes it doesnt necessarily mean anything my son will be 3 the end of july and he is just 26 lbs he eats fine doesnt really gain or lose weight his dr is fine with it hes just an active boy must have a high metabolism and most all the things he eats are healthy for him

Michelle - posted on 05/22/2012

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It is not the weight at 19m that is worrying the doctor. It is the loss of weight at 15m AND not really gaining weight by the 19m check-up. I have surviving quads. My children are four-years-old and one of my sons is small for his age height-wise (32 in) and weight-wise (25 lbs). He has a problem gaining weight. His weight would stay the same or he would gain only a tiny bit.



My son have various health issues and has to endure NUMEROUS tests. One thing that will help if you have to have blood drawn is a topical pain medicine called "Lidocaine and Prolocaine Cream 2.5%" You place the cream on the skin wherever he might be stuck with a needle and wrap the skin with Saran Wrap to keep the cream in place. I promise they will not feel a thing! It is GREAT! My son has most of his veins blown when he was a NICU baby. It is HARD to get blood out of him. When the phlebotomist stuck him he did not cry and when he had to dig the needle around in Joseph's arm there was not a whimper. Made the whole blood draw a LOT less stressful!

Amanda - posted on 05/22/2012

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I have 2 boys they have different dads. My oldest was always topping the charts and the dr was never concerned. When my youngest came along the dr was concerned because he was not gaining any weight. At 2 weeks old he was eating 8 oz of formula every 2 hours. The dr wanted to hospitalize him and run all these tests. My husband and I discussed it and said no. Come to find out the dr was concerned because he was comparing my youngest to my oldest. As a mother your gut will tell you what to do. You can always get a second opinion as well. Keep in mind to many tests can be unnecessary.

Katrina - posted on 05/20/2012

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If it was my child I would be concerned, yes children are all different shapes and sizes but the concerning factor is definitely the fact that he is not gaining weight.. To me that is not normal, I know it seems horrible all the tests and I can understand completely I have a 20 month old son who keeps getting regular unexplained extreme fevers which they don't think are viral but have no idea what keeps triggering them. You are not torturing your son you are being concerned and proactive, at least if you can get a diagnosis then you can have a plan of attack, at the moment you are flying blind... Good luck with it all and stay positive.

Heather - posted on 05/15/2012

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Of course i will make sure my son is healthy but until something really starts to concern me then my job means nothing to me. But from where we r now. He seems perfectly healthy. Has been keeping his weight at 20lbs. And hes eating and playing like any other 19 month old. So for now i am not concerned and one doctor and one test at a time is enough.

Kelina - posted on 05/14/2012

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well what exactly would they be looking for if he doesn't have CF? to me, losing 3 oz is not a big issue. my daughter is small, she's 18 months and I think she's 22 lbs soaking wet with a cloth diaper on lol. I'd want to know what they would be looking for, what other factors they've looked at and possibly get a second opinion. why do all these tests just because he lost 3 oz? is there something else they're looking at but have forgotten to mention?

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My first reaction would be that he's overreacting. 3oz is not significant, and unless they were sure to use the same exact scale and it was perfectly calibrated both times, and both weight measurements were at the same time of day, it wouldn't be relevant to me. If he's a good eater and has plenty of energy and is active, there really isn't anything to worry about to me. That being said, I would probably still follow through with some testing, take it one test at a time, most of them are not that invasive and if there's even a question about his health, better to know now then regret not having it done later. Most children's doctors I think are way too hung up on weight and those growth charts don't mean anything, they're based on a statistics from the 70's for midwest white children, they're only meant to be used as a comparison for your own child's progress. With all the childhood obesity we really need to stop being so weight focused. Good luck, don't worry too much and your child won't worry about it.

Heather - posted on 05/13/2012

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Thats the only reason why i feel that my sons doctor is going overboard. .3 oz is not a huge deal. I think that morning before his appt he didnt eat alot for breakfast and we had to be at the doctors by 11:30. My sons lunch time at the daycare is 11:30. So his stomach was obv empty!!! If he had lost like 2-3 lbs then i wouldn't be as upset about him having tests done!!!

Tina - posted on 05/13/2012

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Although kids like mine do tend to not gain much weight when they start running around my son eats plenty but he's always on the go and looks quite skinny but he's healthy. Although your son may be fine it's good your doctors being thorough. I'd rather a thorough doctor then one that says he's fine he'll be alright. That really annoys me because I figure I'd rather find out that I'm worrying for nothing, then not worry and something go wrong. But there is also going overboard. If once your sons blood results come back and they're fine and your satisfied then tell your doctor that or take him somewhere else. He's your son. 3 ounces isn't worth worrying about.

Happy - posted on 05/12/2012

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When my now 7 year old son (who is in the 75th Percentile now) dipped below the charts, his pediatrician wanted to run all sorts of test and refer us to a genetic counselor and start him on steriod treatments. Opened mouthed, I looked at my 5'10" 120 lbs husband, 5' 90lb teen daughter and said, "Hell no!" I was stunned that a real pedeatrician wanted to give my child steriods! Shocked! I left that pffice never to return. We found a wonderful Family doctor who asked about family size and looked at family history and then asked me to simply discuss my sons eating habits with him. We left his office, both doctor and Mom being totally satisfied that all kids grow at different rates. Follow your gut!

Heather - posted on 05/12/2012

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Thank you. My boyfriend (the father of my child) has been begging me to go get a second opinion. My son has this particular pediatrician bc it is the same place i went to and my mom said she loved it there. So my boyfriend wants to try bringing our son to his old petrician. I think i may give it a try and see what they have to say bc if they are saying the same thing as the current doctor then i guess theres no point in arguing with the doctor. Everyone tells me, your the mom you make the final decisions. If u dont want tests done for hin then they have to respect that. I dont have to do what the doctors tell me too. I think once we find out about his cystic fibrosis results i may ask to do what ELFRIEDA said to do and try to give my son some time and see if anything changes. Of course as long as his bloodwork comes back in the clear for cf.... I just feel that everyone will think im a horrible parent bc my doctor is saying something is wrong and i dont think anything is wrong.... I just need to get my thoughts in order and just think of what will be best for my son. Ill take humiliation/embarrasment over my son being tortured by needles any day!

Elfrieda - posted on 05/12/2012

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Well, if it was me, I would probably say, "I think he's fine for now, so let's wait 6 months and run the tests then." I say that because you don't feel there is a problem, it just runs in the family to be teeny, and you want to spare your son unnecessary pain. But of course there is a risk to that as well (what if there really is something wrong?), so you need to make that decision.



I think a second opinion is a very good idea. You and your doctor might just have a personality clash in that he's making you nervous when you weren't, whereas a more anxious mom would love him for taking all her worries seriously.



I really like my doctor because I know he won't freak out unless there is something seriously wrong. Sometimes it's annoying, but he basically sits there and smiles at my son and when I ask for advice he says, "Since you're the kind of parent who would ask that, whatever you decide will be fine. Just take care of him." and when I have taken him in for various ailments he says things like, "That's one healthy critter, there's not a thing wrong with him except that he has a full-body rash." and "He's a healthy boy with a cold." (and he's not overly brimming with health, it's just that if it looks like a cold, the doc just calls it a cold without running all kinds of tests) The one and only time my doctor has said something negative, he was brutal and really scary. And I believed him with no questions asked!

Aileen - posted on 05/12/2012

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Honestly 20 lbs at 19 months seems like a very health weight, just a bit small. My daughter weighed in at 20 lbs at her 24 month appointment and the doctor just told me she was going to be little and not to worry.

Rachel - posted on 05/12/2012

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I had an underweight baby. I did have her thoroughly tested, like her doctor wanted. She was fine. I also have not gone out of my way to make her fatter. She is still thin, but is now the tallest person in her class (something i wouldnt have dreamed possible). I'm very confident your kid is f8e, and unless these tests are an out of pocket expense, might as well rule cf out.

Holly - posted on 05/12/2012

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When my son turned 1, he weighed 19 pounds! Up until that time he was in the 50 percentile for his weight! But after that he slowly gained weight! I got pressure from his previous dr at every dr visit! Although she never ran tests on him she always told me he needed to gain weight! He will be 4 in August and weighs 30 pounds! He has a new dr that has no worries about his weight because he is healthy! I know this is a little different situation, but I would say go with your gut and if you feel you need a 2nd opinion, you should do it! Best of luck to you and I hope and pray for the best for you child!

Rachel - posted on 05/12/2012

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No my doctor hasnt scheduled any tests for my daughter. They look at her and she is perfectly healthy she is just a tiny person. she eats constantly it is just small amounts because she doesnt do well with meals. We have also heard to add butter to her meals but i didnt do that because i do not think it is a good idea. I have no problem with her being small as long as she is healthy which she is. I would say if you see something wrong with your child then get the tests if not then I wouldnt do it. My boyfriend and I are both small people so i never expected her to be a big person. Some times it shocks people with how small she is but she is healthy.

Bethany - posted on 05/12/2012

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im sorry i cant relate to this but i would feel that his doc maybe over precautious but better to be safe than sorry! my son is in the 98+weight precentile for his age and has been called obease by his gp, but he is in the 75th height precentile so yes just b4 a growth spurt he looks chubby but i give him 2 days n hes not that chubby anymore, i did a diet log and recorded every single piece of food that went in (and out) of his mouth for a fortnight and gave it to the doc with the other info that at 5' 0 and 85kg yes i was over weight but my stature doesnt allow for my weight to be 50kg as spesified, also his dad is 6'4 and 120kg solid muscle, at 27mths hes in size 9 shoes (rather than 6) but he is healthy and thats all that matters, if you feel you need another opinion go get it but i would prob do the tests..... sorry for the ramble good luck hun ox

Heather - posted on 05/12/2012

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In the beginning he was a very picky eater. He rarely ate. Now he is eating alot better. It just depends on his mood. For a whole week he can eat doubles for every meal, then for about 2-3 days in a row he'll just eat a meals worth thats it. He loves to drink milk. I buy the vitamin d fattening milk just like the doctor said and he is to be on his formula still. He drinks 8 oz bottles of formula 2-3 times a day. He at first didnt like pediasure, but now he does. But he of course just poops even more after that, we still give it to him though. Doctors order. We went to go see a dietician and she said we are doing everything we are suppose to be doing. So the dietician cant help us. The thing is, i was the exact same way when i was little. I was EXTREMELY thin all the way up to 9th grade. My mother and i talk about this all the time. She said that all they told her was to give me fast food. That was a bad idea bc it caught up to me once i got my pd. asked the dietician about doing that and she said def not! That is the unhealthy way to have someone gain fat. Another thing is my son poops between 3-5 times a day. Just yesterday was 5 times and they are all normal! His aunt, my youngest sister, is the exact same way and she is extremely thin! She has to eat every hour bc she gors to the bathroom so much. We tried doing it that way for him but thats how he lost .3 oz. he obv wasnt eating enough, especially for meals. Thats when he really needs to eat!I haven't been so concerned about his weight bc myself before and my sister now were/are the same way. It's in his blood!!! I tell the doctor every time we visit her. Overall the eating part is really no longer an issue. He just has a very fast metabolism and poops like crazy! I tell the doctor this all the time. To RACHEL JEFFERSON- so is your doctor telling you to get tests done for your daughter? And all of this concern from the doctor and tests began bc he lost .3 oz. She had told me in previos visits that she'll only be concerned when he loses weight. But my ideal loss of weight is if anything like at least a pound, but .3 oz?!?! Isnt that a bit much??? I think of that as a nutty bar! Then he would have been good. Does her doctor say that too anout if she loses weight then we will worry??

Rachel - posted on 05/12/2012

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Some kids are just tiny people. Well that is what the doctors keep telling me. My daughter is 20lbs at 26months old. she is on her own growth curve and very petite. They said because she is developing normally other than being tiny they wouldnt worry. Maybe your son is just tiny? Does he eat enough? maybe try giving him something to constantly snack on. or give him something like pediasure or carnation instant breakfast. Good luck

Louise - posted on 05/12/2012

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20lbs at 19 months does seem rather low. Is he a bad eater. Does he eat enough dairy products to gain weight. Maybe your son just needs to see a dietician rather than having test after test. Only you know what he is eating in a day. Could this be the cause.

Ashley - posted on 05/11/2012

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You do the tests thats the way it is if hes sick you catch it if not than great he had to have some tests he wont even remember, Its a good thing your dooc cares and is invested forget about the discofert a few blood test have on your son thats not important in the long run. My son has had a crap load of tests as a new born yes it sucked but he lived. My neice has to get a shot every week of her life plus blod tests every month. You just dont no and to be honest had it been up to me deciding and not my doc my son could of died i thought he had a cold he had bacteria menigitus. better to be safe than sory.

Heather - posted on 05/11/2012

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Thankyou, that is true that he won't remember it. And that just had me thinking that if there is something wrong, i may regret not taking care of it now. I want to be able to sit here and say i did everything i could! If its something big, i dont want to be looking back thinking, we could have prevented him from all this damage if i just finished the tests! Now i think i know what im going to do, but i dont know if i should just at least get that second opinion from another doctor... Is that a good idea, or would i look like i am crazy? (Not trusting his pediatrician)

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