Introduction

[deleted account] ( 25 moms have responded )

Hi, My name is Rachael. I created this group hoping to start a place where moms like myself can find advice, comfort, and solace, with others who can understand what we go through.

My son, Jonas is almost 4 years old. He was born small, and remained well below the 3%tile on all of the growth charts. It wasn't until he was about 2, and he was still refusing solid food, and his growth curve was falling that Drs started listening to my concerns. It isn't just about him being small, but about him not growing at a normal pace. Since he never even was near the 3%tile line, when he stopped growing at 2 years old, it made a huge impact. Since his 2nd birthday he has gained 2 pounds, and grown 1 inch. That is in 2 years.

He refuses to eat most foods, and gets most nutrition from Pediasure. He has been sent to Dr after Dr and had test after test run, to no avail, no one can figure out why he doesn't grow... or why he chooses not to eat. Right now we are trying to make the decision on whether to have a feeding tube placed, so as to increase his caloric intake. We are also going through some genetic testing to see if that gets us anywhere.

It is so hard some days when the general public just can not understand my very small child. When they look at me as if I am the evil witch who starves him. When they give their lovely comments "oh kids won't starve themselves"... (yeah right)...

I KNOW there are other moms out there who have kids with growing issues, whether you have a diagnosis or not. I know there are moms out there who have kids with eating issues.... I created this place for you.. To have a place to voice your frustrations and concerns where others can understand, becasue they too have been there, or are there.

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Sharon - posted on 07/24/2010

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Hi, Thank you for this page. My son is 4 in september and only just hit 13 kg ( about 28 pounds). His height is on the 10 percentile but he is just so skinny. He seems healthy and happy and is always running around but just isn't interested in eating and will only eat a very limited range. if we try anything new he will run away and start crying or having a tantrum. Just tonight he only had about 3 mouthfuls and then wouldn't have anymore sying he's not hungry but he's eaten next to nothing all day.He has been diagnosed with Autism Spectrum Disorder. It makes me mad when when people say just make him eat ( you can't force a child to swallow food) or he'll grow out of it. He ate really well up until about 15 months then overnight just stops.I get stressed out every mealtime now wondering of he's going to have lot, a little or nothing. Our paediatrician gave him some powder to put on his food to boost his calorie intake but it did nothing for his weight just made him poop heaps more.

Diana - posted on 04/08/2010

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Hi everyone,

My daughter has eating issues. She's 18 months old and we're in weekly therapy. She was born with multiple anomolies but large 9lb 6oz and 18 months later only 17lb 10oz and the last 4 lbs has been gained in the last 4 months.

We thought her malrotation of the small intestines was the reason for her eating but it was surgically corrected and it didn't fix it. She had severe kidney reflux, that was fixed surgically, didn't fix it. We saw GI specialist and eventually had an NG tube placed, didn't help. We've had genetic testing done 2x, nothing. We found she had a neurogenic bladder so she had a vesicostomy so she was no longer in pain, that didn't fix her eating.... FINALLY she had an MRI of the brain and we found out her pituitary gland didn't form normally and she wasn't producing growth hormone. She is now finally growing with the help of synthetic GH but she has MAJOR texture issues. Like I said, we are in weekly therapy working toward desensitizing her but it's been a struggle and she still gags and throws up often.

Rachael, I have people all the time thinking they can feed my child and that's when I try to channel to her PUKE ON THEM, PUKE ON THEM!!!!! It drives me crazy they act like I just don't know what I'm doing. I've been the best advocate I can possibly be for this precious baby and it makes me crazy when people that have not been through it think the know.
My daughter was born large in the 90% and she just kept dropping and dropping and I wouldn't let up but it was still months before I could get someone to listen to me. For 8 months she only gained ounces but b/c she hadn't actually fallen off the chart they were being way too passive.

Ok, I've got to stop b/c I could really get on a huge soapbox.

Jennifer - posted on 03/07/2010

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I am so excited to find this group! I have been searching the internet for eating/growth/diet info and been frustrated because everything leads to nutrtional advice to fight obesity and that is NOT our problem! My son will be 4 in May and weighs 31lbs and is 46in tall. In the last 10 months he has gained only 1lb and that is a recent celebration!!! He has grown about 4 in though and seems healthy, except for bad environmental allergies. One of my closests friends is a nutritionist for WIC and she agrees that while he seems fine now, and we seem to be doing everything "right", he should be gaining more weight... Some background that is definatly important is that Seth was born at 29wks weighing 3.2lbs. He had drugs in his system at birth but no addiction, and his birthmom claimed that was her "only time". (We now have his 5m old half brother who was thankfully full term but born in the same situation!!!) We were blessed to be matched with him while he was still in the NICU and able to bring him home at 2 months old weighing exactly 5lbs. From day one he had eating issues. Probablt reflux but it was never properly diagnosed because the concern was more on his sensitive gag reflex. Pretty much every feeding he wound up throwing up atleast once because he would choke and gag. This continued until he was about 18m and has caused long lasting texture issues. And while it is the rare occasion he actually gags so bad he throws up it still happens occasionally, especially if he is congested or such.

The dear boy was developmentally delayed but meeting milestones until he was about 15m and the pedi declaired him "caught up". That is a big moment in a preemie family! When he reached about 18m and stopped the constant gagging we rejoiced, and then started working on over coming his texture issues! At about three we finally had him willingly trying more foods and a more varied diet and we rejoiced again. But now he is just not gaining weight and we don't know if it is yet another battle or what!? We try not to be the paranoid our preemie is fragile parent but we also know the importance of confronting the issues as they occur. So I hope to find in this group maybe some answers but more importantly the caomraderry I have so been missing! Thanks everyone for sharing!!!

Sharon - posted on 12/18/2009

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Hello Rachael and Other ladies,

I have a 5 month old baby girl and she is under weight also. I feel like you do Rachael when people make a comments on her appearance. I feel they look at me like why don't you feed that girl or how ofter does she eat. at birth she weigh 8 pounds and 12 oz. she was 3 weeks earlier now she weighs 10 pound 8 ozs, I am feeding her every 2 to 3 hours everyday. She was in the hospital for 4 days and nothing the doctors found that God (maybe) It is the unknown that is getting me worry. My son on the other hand my doctor said he needs to lost weight. With my son people say what a big boy or something like that, Why do people have to make comments like that. LEAVE CHILDRENS WEIGHT TO THEIR PARENTS AND KEEP COMMENT TO THEMSELVES. I had to get that off my chest.
Best of luck to all the moms that are struggling with this battle.

Sharon

Stacey - posted on 11/11/2009

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my eldest son cameron is 7 and is the size of a 4 yr old. he has recently been diagnosed with a growth deffinciency and now has 2 have injections daily 2 help him grow. he will be on these for at least 10 years.

Amanda - posted on 11/07/2009

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Hi,

I have a two year old, or well 28 months. She stopped growing in height at 18 months. I had another daughter born quite small when my elder daughter was 18 months as well. She topped out so far at her tallest at 18 months quite tall for her age at 33 inches. My youngest daughter now 9.5 months is 30 inches ((off the charts)) and 20 pounds.
Shannon my 28 month old was measured at wic this past monday. She was 34 and 3/4 inches. I was happy but I am still worried. For a few reasons. ((she didn't gain any weight either, she is 28 pounds))
My mother was a pituitary dwarf. She stopped growing at 8, at the height of 4'6". She also got her period. I know I was always tall till 8th grade, when I stopped growing. I am 5'2".
She is a great eater. Everything but spaghetti and mamwich.

Amanda

Christy - posted on 09/26/2009

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Thank you for starting this and for all the moms that share. My son is almost 4 and he weighs 31 pounds. He has always been in the 5th-8th percentile. After his first birthday he just started to refuse solid foods for the most part and now is down to eating only about 5 things. He refuses the Pediasure drinks. We've tried feeding therapy groups it didn't work. He will eat yogurt and those soft granola bars so I know he can eat different textures but if you try and give him something new he gets very upset and will run away, cry, and even gag until he throws up. He is on an organic diet now and I have added in flaxseed oil to his yogurt after reading about the benefits and he is back on whole milk. I have also started to add puree avacado which I read is very good for fats and vitamins, VERY slowly, to his yogurt. He was willing to touch it to his tongue which was a HUGE step. We got a juicer thinking he would drink the juice but no-go. He will drink sometimes from a pre-packaged juice. I get the Gerber to-go juices that are the carrot/apple which is how he gets a serving of a vegi/fruit. Just a crazy diet that is driving me insane!



With all of this comes constipation as well. It is all so frustrating. I don't understand where this came from or what to do next. We are to meet with a nutritionist. I have found that keeping a food journal for him has also helped me to see his calorie, fat, protein, etc. intake. Has anyone else had this happen where their child goes from eating normally to rejecting most of everything? It is well beyond the normal pickiness of a toddler.



I would love to hear from anyone that is going through the same thing or might have suggestions of things to try. I have to say I have been amazed by the number of children I hear of having eating/food issues. People that haven't been in this situation just say "oh, they will grow out of it" or "just make them eat what you serve or they don't eat"...well, my son isn't growing out of it and if allowed he probably would go without eating. Where is this all coming from?

Karen - posted on 04/27/2009

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Hello fellow moms of tiny children!

My Emily is 3 years old and weighs about 21 lbs. She is a twin, but her twin is normal to tall, and is fine. Emily had IUGR and was monitored a lot before birth, but was born on time weighing 4 lbs 4 oz. She was a colicky baby who never ate as much as she should, took a looong time eating, and didn't grow well. She has never reached the 3rd percentile for her height or weight, and is barely there with her head. We took her to a gastroenterologist (at the request of her wonderful pediatritian) who put her on Periactin and erythromyacin and zantac. She still didn't have very much interest in eating and my attempts at calorie packing didn't do much. We started using Pediasure last year and to a degree it seemed to help.
Most likely the best thing we did was take her to a Speech therapist. The therapist sat down with her once a month and worked on learning to eat better. She does much better with her eating now (doesn't hold food in her mouth as often and doesn't tire out so easily when eating) but still doesn't have a huge interest in it and doesn't eat the amounts she should. We have done many tests on her including an upper digestive track scope to check the size of her esophagus and tested the tissues. We have also tested for Celiac but that was also negative.

Sarah - posted on 04/19/2009

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I am so glad I found this group I have a lot of the same issues and it really helps to read that other moms have similar eating issues. I am glad this is a wonderful support team. Thanks Sarah

Heather - posted on 03/24/2009

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Hi Rachael,



My daughter is constantly going under or meeting the 5th %. It can get scary. My baby has Cardiomyopathy so her heart is working harder and burning more calories than normal. It's been painful to me to see her medical chart and have it say "Failure to thrive " when she is a really happy and active girl. I wish there were some other term the doctors could use. I hope your son is getting better and I will keep coming back to this site! Thank you!!!



Heather

Karla - posted on 03/12/2009

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Has he had any scopes done to check the actual anatomy of his esophogus/stomach? My son was born without an epiglotic flap and had to have a Nissen Fundoplication done. He was silently aspirating everything he ate which caused errosive esophagitis and chronic lung disease. He weighed 22 lbs at his 4th birthday in august and now he weighs 32 lbs as a result of Juice Plus. The problem with high fat/calorie intake diets like adding butter and oils causes high cholesterol which causes more problems. Try finding all natural fatty items. Hope this helps.

[deleted account]

Jonas was on neosure for over a year... it was fablous...  when he was 18 months we switched over to Nutren Jr.. and now pediasure..

Michelle - posted on 03/09/2009

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Hi Rachael!
I am just starting out on the road of having a child that doesn't grow rapidly. My daughter Alexis will be 6 months old on 3/22. She weighs 11.5 pounds and is 24 inches long. She is right on the 3%tile line so far, but is going to be classified as "failure to thrive" if she does not gain more weight very soon.
Alexis doesn't eat as much as she should but does not have any sort of reflux or issues digesting her food. She has 2 holes in her heart (an ASD and a VSD) and one of them causes her aortic valve to stick open. Her body burns far more calories than the average baby's due to her heart having to work so much harder. She is also suspected of having Digeorge Syndrome (q22 11 deletion, similar to VCFS) and may very well be small throughout her life. Since we can't get health insurance or government assistance, I have to wait to get her tested for Digeorge Syndrome until we can afford it.
I am going to try switching Alexis's formula to Similac Neosure to try to get her weigt up. Has anyone had any luck with it?
I am so glad to have found this community!

Jodi - posted on 01/29/2009

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Hey, anything to get them to eat, right!?  :O)  Jonas is a real cutie.  Maybe you should bring up RSS at one of his appts. and see what type of reaction you get.  RSS kids have a certain look about them.  I am not sure I see it in Jonas so much, but there are milder RSS kids (usually the ones that test postive for UPD7) that don't have the typical RSS "look". 

[deleted account]

I have looked at the magic foundation info...  And really, he fits many of the RSS characteristics, but none of the drs have mentioned it. We have been on Neutrun Jr...   It upset his stomach. He has done worlds better on pediasure.



 



We have appts in the next two weeks.. I may mention RSS

Jodi - posted on 01/29/2009

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Hi Rachael.  I understand your challenges.  I really do.  Andrew is on a hgih calorie, amino acid based formula called Elecare.  I mix it so that its strength is 30 calories per ounce!  I have heard of other options besides Pediasure.  I think there is Peptamen Jr., Nutren, and others.  I just wondered if maybe trying another formula would help with his being FULL for so long.   Andrew is the same way.  He just doesn't get hungry.  But, we have him sit down and eat.  He has to learn that eating is the normal thing to do.  SO, he eats as much as he can. 



Have you ever heard anyone mention Russell-Silver Syndrome?  Did you look it up?  I was just wondering if it sounded anything like your son??? 



Another thing I wanted to pass along to ALL of you struggling with children with growth issues.  Please check out www.magicfoundation.com.  They are an organization dedicated to supporting children and families with growth issues/disorders.  They have several different divisions.  RSS and SGA being two of them.  Just wanted to pass that along. 



We have been through a lot with Andrew, and was so relieved when we finally had an answer to WHY he wasn't growing.  It wasn't US starving  him, it wasn't HIM being stubborn, it was just the RSS.  By the way, I don't know if I mentioned this, but RSS is a form of primordial dwarfism, but GH does help them grow.  I am great friends with a mom of a 20 year old RSS adult that is now 5'7" tall!!!!!!  Without GH, he wouldn't have been anywhere CLOSE to that!  GH does much more than help with growth.  It helps with muscle mass, blood sugar stability, appetite (???? not in Andrew's case), etc. 



I am glad to have found this community.  I would love to talk more with you all.  :O) 



 



Jodi

[deleted account]

wow, Thanks Jodi!



 



We also have tried periactin...  did NOTHING at all... he just doesn't get hungry. Now he is old enough to look at me and say, I am not hungry....  I don't care buddy, eat....



 



he spent tonds of time in the NICU because they couldn't get him to grow. They sent him home at 4 lbs!!!  His head is also "normal" sized for his age... so it looks HUGE...



 



and with the pediasure... well..  it is the only way we can figure out to get nutrition into him. We tried to stop if for a few days, to see if he would pick up in eating... yeah, we won't up in the hospital.



 



It is all very frusterating



 

Jodi - posted on 01/28/2009

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Hi ALL!  I am new to the group and have just read over everyone's responces here.  Wow, amazing!  It sounds all too familiar and I could have writte almost every post here!  Let me explain.....



I have a 6 yr old with Russell-Silver Syndrome.  It is related to SGA, as someone else mentioned, but RSS kids have a few more issues that could plague them.  To begin, I knew that my baby wasn't growing right at 20 weeks.  I was sent to a specialist who I saw the remainder of my pregnancy.  I was induced at 34 weeks because Andrew had stopped growing altogether.  They thought he had Trisomy 21 and wouldn't live much over a couple of days, but wanted to get him out to try.  Upon birth, Andrew was TINY!  He weighed a whole 2 lbs. 12 1/2 oz. and measured 14 1/4 in.  The kicker...his head circumference was at the 75% for his "age".  HUGE!  Andrew had to be rescusitated at birth, and spent the next three months in NICU.  Doctors had no clue what was wrong with him.  They just knew he wouldn't eat and was not gaining weight.  So, after three months they sent us home with no diagnosis and not a clue as to whether he was even going to make it. 



To speed this up a bit, Andrew was 17 months old and weighed a mere 10 1/2 lbs.  And, this was ON A FEEDING TUBE!  But, like someone else on here mentioned, he was not tolerating a big volume at once.,  He would spit almost all of it up.  Doctors were clueless.  Our pediatrician is wonderful!!  He thought Andrew had a metabolic disorder and sent us to Cleveland Clinic to have a specialist look at him and run some tests.  Backing up a bit, Andrew had a blood test to check for a possible RSS diagnosis.  There is NO real blood test or anything for RSS yet, but a UPD7 study would indicate whether he may have it.  If  he had the 7 chromosome from just Mom, then that would mean RSS.  This is in only 10% of RSS cases though.  Andrew, of course, did not have this.  He has the 7 from both of us.  Anyway, so, the ball was dropped there and RSS was no longer really discussed as a possibility.  UNTIL we saw this metabolic specialist.  He took one look at Andrew and asked if anyone had mentioned RSS to us.  I was floored becuse they had, but I thought it was a non-issue.  He had, in fact, seen other RSS patience that looked and presented just as Andrew was.  He gave us a name of a doctor that specializes in RSS/SGA kids. 



 



Speeding up again, I got a hold of this doctor and told her about Andrew and although I had a January appt. she told me that he could not wait that long and I had to get him to her ASAP.  So, we went a week later!  She diagnosed him with RSS...a severe case of it.  She has been our miracle ever since and has helped straighten Andrew out.  She worked miracles for this kid, and I swear to this day, without her, Andrew may not have made it because even though he was tube fed, he was severely malnourished because of the vomittiing.  He is VERY volume sensitive.  To this day, he cannot eat much and still has a feeding tube we hook up at night to get calories into him. 



 



He is also on GH injections.  We have tried him on Periactin, which is supposed to help stimulate appetite, I htink it is actually an allergy med. or something???  I forget.  Anyway, a lot of RSS patience have success with this, Andrew isn't one of them.  So, maybe that would be an option for some of you??  Also, he is going to be trying Eurythromiacin again.  If I remember correctly, this is a low dose antibiotic that actually is being used ot help with DGE (delayed gastric emptying) which is a HUGE problem for RSS/SGA kids.  That may also be of some help to some of you.   



 



So, Rachael, and all you other moms struggling with kids that don't eat.  You are NOT alone.  And, Rachael, I hear you about the "kids don't starve themselves" thing.  Andrew tells me "Mommy, I'm never hungry, but I just eat anyway."  Well, what little he does eat.  But, the kid is literally NOT hungry.  His brain just does not tell him he is hungry.  And, it started in the womb, hence why he wasn't growing right then.   OH!!  One thing I wanted to mention Rachael, Andrew's specialist does NOT like Pediasure for two reasons.  First, and foremost, it is VERY filling.  The kids fill up quickly on it and then they don't want to eat for a long time.  Second, it is high in sugar.  Andrew has issues with hypoglycemia, too.  The other mom of the SGA child should be aware of that.  RSS/SGA kids have that risk. 



 



So, there is my tidbit.  I'll tell you, there is much more to this, but I can't write much more.  You guys are probably falling asleep as it is!!!  :O)  I just hope that we can be of some help to each other.  I hope that you gusy can get the diagnosis that your kids deserve so they can be treated properly.  Thank God for Andrew's specialist.  She saved his life.  I cann't depened on local doctors here in Ohio.   How sad we have to travel all the way to New York City, but it is so worth it for the health and well-being of my son! 



Sorry for spelling errors.  I really can spell, but I am a terible typer!!!  :O)



 



Jodi R.

[deleted account]

i know how you feel Michelle..... We are getting ready for the growth hormone test too... still no answers in sight though...

Michelle - posted on 11/14/2008

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Hi, my name is Michelle and I have a 3 yr old daughter who is SGA (Small for Gestational Age). We have been seeing an endocrinologist for a year now with still no diagnosis as to why she is small.



I was induced at 38 1/2 weeks because the dr.s said she would thrive better out of the womb. When she was born, she was 4 pounds 7 ounces. Feeding has always been a frustrating part of our day. She is now about 21 pounds and 31 1/2/ inches tall. She is 2 deviations below the 3rd%tile. We are going in December for a growth stimulation test to see if she has Growth Hormonr Deficiency. It has been a very frustrating process with no real answers. Hopefully this test will tell us why.

[deleted account]

Wow, Hi Kelli and Marie...

It sounds like you both have your hands full. While I hate to hear anyone else having these issues, it is nice to know we are not alone.

Marie - posted on 10/29/2008

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Hey moms!

I am SOOOOO happy for this group! My oldest has Chromosome 22 q11.2 Deletion AKA Velo-cardio-facial Syndrome (VCFS). These kids are all small in stature. It doesn't matter how much or what he eats, he will always be small. He is 7 1/2 yo and only 42 lbs. and 43 inches tall. We didn't know he had VCFS until he was 6 yo. That was tough to feel responsible for his growth issues.



My 4 yo has Aspeger Syndrome. He has lots of sensory issues that make it difficult to eat most things. He will eat 5 or 6 different things mostly dairy products and cracker/ chip/ cereal type items- NO vegtetables and only peeled apples or applesauce.



My 2 yo had really bad reflux and colic until he was 5 or 6 months old. I am pretty sure he still struggles with it. I am now convinced he also has IBS- he tested negative for Celiac Disease, lactose intolerance, Cystic Fibrosis and all other GI disorders you can check for without and endoscope or biopsy. So, I have concluded it is IBS.



My 6 week old has colic and reflux and just started meds yesterday to improve the situation. Feeding is a HUGE struggle at my house!

Kelli - posted on 10/29/2008

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Hi I am very new to this too. My daughter is in the same boat as your son. She has always been very small and I had concerns but the doctor kept telling us that since my husband and I are small that there was nothing to worry about, then when she reached 17 months (last Nov) she really started going down hill barely eating they started to run test and more test and still NOTHING, they diagosed her as "Failure to Thirve" and sent us to a specialist that also had a nutritionist on staff. My duaghter continued to get worse (Feb), her hair was falling out due to lack of vitamns so they put her in the hospital and the first couple nights there they watched us, she stop eating EVERYTHING, she got the flu while we were there and they forced us to put her on a feeding tube. For the next two weeks we stayed at Children's and they still were not coming up with anything, she had test after test done, she was afraid of everything and everyone but me. They were questioning us and thinking it was us too. I had to beg them to let us leave the hospital so we could go home because I had a 6 month old baby at home. We had to go in for weight checks for the next 4 months. She stayed on the feeding tube for the next 2 and half months. The only time she was doing good with the food is when she was on the feeding tube with continous feeding for 24 hours a day, my daughter couldn't handle the bulk feedings, she would vomit. They discovered that she wasn't digesting her food it would stay in her stomach making her full. They gave her medicine to help speed up her digestion and she improved for a while allowing us to get off the feed tube. She got up to 21lbs!!! My daughter is now 29 months old and only weighs 20lbs 10oz. And they still don't know what is going on and she is starting to go back down hill.....She is healthy like your son in every other aspect. She is developing at the rate she is suppose to but just doesn't like to eat. My son who is 11 months younger out weighs her. They have talked about putting her back in the hospital but I can't bare to think of that because of the huge nightmare that was!!

[deleted account]

I have never heard of Just for Kids. I will look for it though, cause we sure need the calories. J is47 months, 25 lbs, and 36 inches... so pretty close to your daughter (of course for a boy that still isn't close to the freaking line growth curves)... 2% BMI

Elizabeth - posted on 10/27/2008

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Hi Rachael, I can so understand what you are going through. My daughter started refusing solids at 15 months and we discovered then that she has/had silent reflux and DGE (her most recent tests have been inconclusive). She too has always been little, she is currently just under 26 pounds and 36" tall at 40 months. She wasn't on the growth chart until just recently when we crossed the 3% mark, but her BMI remains at 2%. She's on medication but it hasn't made a whole lot of difference. She drinks Just for Kids as her main source of nutrition (you might want to check that out as it has more calories than Pediasure - 355 per 8 oz.). Other than her size, she's a very healthy and happy kid! You might want to check out Moms Wearing Puke - it's mainly a group for reflux moms, but there are parents of kids with other issues and undiagnosed problems - they are a great group!



Elizabeth

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