Conference moira::parenting_v3

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Note 990.0                      Unknown syndrome                       3 replies
DNEAST::CARMICHAEL_S                                 15 lines  26-JUN-1991 07:55
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         I have a question about a syndrome my pedi said that my son may
    have but, of course, I can't remember the name of it.  The right side
    of his body is growing bigger than the left side.  Right now it is
    noticeable and the kid is only 3 months old.  Has anyone had this
    experience and how did things turn out?  What is it called?  Where can
    you get more info on it?  The pedi told me that there really isn't
    anything that you can do about it and can't even tell me if he has it
    or not or how bad it will get if he does have it.  He just said that he
    would have to have lifts and weights in his shoe when he got older if
    it was a difference of more than an inch from one side to the other.
    Please someone help!!!
    
    
    
                                  ---Sue

    Sue,
    Have you thought about contacting your pedi and asking him if there is
    any literature you can read on this subject?  If your son is only 3
    months old and you can already see the difference maybe you can start
    reading info now to prepare for later.  Also find out if there are
    "specialists" that can answer some of your questions.  I'll be curious
    to find out what the name of this syndrome is.  Good luck!   Kristy
     

    Sue,
    
    I have a friend who's second child has been diagnosed with
    Russell-Silver Syndrome.  If you would like, give me a call and I will
    see if I can help by way of her experiences.  Her son is 6 or 7 years
    old now.
    
    Patty

You might also want to post your note in the MEDICAL notesfile,
VMSZOO::MEDICAL.

       Carol

    Sue,
    
    I have never heard of Russell-Silver Syndrome, however, my daughter did
    the exact same thing.  At birth she weighed 7lb 3oz and started out
    gaining weight and then at about 3 months she just stopped.  My doctor
    sent us to a gastroenterologist.  He ran all kinds of test,
    i.e., blood work, thyroid, CF, bone age, and who knows what else.  It
    seemed like we were at the hospital every week for test!  Everything
    came back negative.  They changed her formula (3 times), added cereal
    to her formula, and some other liquid that was just basically fat. 
    They sent us to a nutritionist, this kept going until she was on solid
    foods.  They could never come up with anything.  She seemed fine in
    every other aspect- motor skills were right where they should be.  
    
    Now the doctors tell us that she's just going to be very petite.  She
    just turned two.  She weighs 19 1/2 lbs and is 31 inches long (and a
    pistol!)  She is on her own steady growth pattern, it is well below the
    "norm" but she is growing!  She wears 12 to 18 month clothes.
    
    It was all very frustating and scarey.  It is still frustrating when we
    go someplace and people make a fuss over her being so small.  The day
    care didn't want to move her to the two year room because of her size. 
    Needless to say that didn't go over well with me- she is now in the
    2's. 
    
    Sorry to ramble but like I said, I know how frustrating it is.
    
    Cindy
    
                            

        Cindy,
    
         You said that this continued until she was on solid foods.  My
    head aches just thinking about that.  Did you start trying solids early
    or just waited until the normal time?
    
         I think seriously that my kid is just plain STRANGE!!  Honest.  He
    seems so fickle.  We started with some apple juice this weekend because
    it was soooo hot and he was only getting around 12 oz. of formula in
    and we wanted to get more into him and thought that MAYBE he might like
    it.  Well, he does and we thought that our problem was solved but it
    seems as though he is just as fickle with that.  He LOVES to have his
    formula with a sippy cup but PLEASE... that would take us FOREVER.  He
    also loves having applesauce and cereal with a spoon but that's the
    same as the sippy cup.  So, in our effort to get him to eat ANYTHING we
    go thru a ritual and get him to take what formula he will first and
    then we try some juice.  If it's morning or evening we try cereal and
    applesauce. Not sure if his pedi will approve of the juice and the
    applesauce but at this point we are just trying to get ANYTHING into
    the boy that he will eat.
    
         Anyone else have some picky eaters?
    
    
                           ---Sue

    
    Sue,
    
    Have you tried different types of nipples and/or enlargening the
    hole?    Perhaps he isn't getting enough formula as quickly
    as he'd like it so he gives up....the fact that he'll drink from
    a sippy cup seems to give evidence to this.   I know it sounds like
    a silly suggestion, but sometimes the silly stuff works!
    
    Carol

    Sue,
    
    Since we started putting cereal in Keri's formula very early, we
    started her on fruits at about 3-4 months.  She had her times when she
    wouldn't eat and like you we tried what ever we thought she would like.
    We thought she didn't have an appetite because she was sick, always
    congested and the verge of pnemonia- but when she wasn't sick she would 
    eat pretty good.
    She just recently went through a phase where she would eat anything and
    everything! but now she's back to being very picky.  As my mother says,
    she doesn't eat enough to keep a bird alive.  It is very HOT here now,
    maybe the weather does play a part in eating habits.
    
    Cindy
    

    re: .4 
    
    When they start eating on their own, it just does take forever. 
    It seems like they spend the entire day at the table sometimes. I
    know it's hard but the best way to deal with it is that old
    parental standby, "Patience, this too shall pass," and before you
    know it he'll be bolting down a hamburger on his way out to his
    job . . . 
    
    --bonnie

    re.5
    
         Carol,
    
         We tried the bigger holes in the nipples and that didn't seem to 
    help.  We currently use 3 different brands of nipples on him so that
    isn't it either.  We have different types, brands, shapes, sizes, and
    different sized holes.  Who knows?!!!  He's just weird.
    
    
                              ---Sue

    Boy does this sound familiar! Adam was born 9/2/90 tipping the scales
    at 3.5 lbs. Yes he was full term. No history in either of our families
    for very small people. He is now almost 11 months old. He was a very
    poor nurser, a bottle sipper, and a poor eater. He went through a
    period (6 to 9 months) where he gained about 4 oz total. From 9 months
    till a week ago, he increased his food intake by about 200%. Still only
    gained a few oz in this time. He has gotten so mobile, that he is
    constantly in motion...all day long. He has just increased his intake
    to make up for the increased activity. This past week he has gone back
    to his old self....coupla bites of a meal and that's it. If you try and
    persuade him to eat any more, he'll just make himself throw up by
    gagging on that last spoonfull. Patience is so hard to come by!!!!
    	Adam is perfectly normal in all other aspects. He has had every
    growth/thyroid/etc/etc/etc test there is. They all come back fine.
    He is now about 17 lbs and 29" at 11 months. I hope this "no-eat" 
    stage is not 3 months long like the last one!!!
    
          Frustrated Frank

         Boy, it's good to know that I am not the only one.  Sometimes I
    think that I have the problem figured out (too hot outside,
    constipated, doesn't like his formula, wants to eat older people food,
    etc. etc.)  Never seems to be the case.  We seem to have broke the
    habit for a little while.  He HAS been eating PRETTY good the last week
    and a half but he still does the same little tricks that Frank's son
    does.  Sometimes he gags before we even put the bottle in his mouth.
    Now you explain that one.  At least at the last weigh in he was up a
    little bit to 8lbs. 11 1/2oz. at 4 months old.  He gets weighed again
    next Monday and hopefully he will have broken the 9 lb. mark.  I had
    one of my friend's visit last evening and her son, now one month old,
    gains about a pound a week.  But, then again, I don't envy her.  Her
    son wants to eat ALL THE TIME.  And I do mean ALL THE TIME.  I think
    that would drive me more nuts than my son being so indifferent about
    eating.
    
         To Frank, Did the doctor's ever have you put anything like the
    supplement Polycose that my Pedi is having me put in my son's formula
    to increase the calories in what he did eat since he didn't want to eat
    much?  To tell you the truth, I'll be damned happy if he does reach 17
    lbs by the time he is a year old!!!!
    
    
                         ---Sue

         Back to Frank again.  Forgot to ask you one more thing.  Did your
    son seem perfectly perky and alert during all of these no eating times? 
    I am just curious as my son does and doesn't seem hungry at all or
    grumpy.
    
    
                          ---Sue

    I don't know whether this is a factor for any of your kids, but
    the gagging at the sight of a bottle reminded me of the way my
    nephew was for a while.  He's got an abnormally short palate. 
    He's never had a weight or appetite problem because of it, because
    they're aware of it and are careful of how and what they feed him. 
    
    If the palate is short and the nipple jabs up against it in the
    back, it triggers gagging.  My nephew developed a conditioned
    reflex -- "Here comes the bottle, and I know I gag from that."  
    Or sometimes the spoon would go too far back, or a big bite of
    food that he tried to swallow too soon, and he'd gag and then he
    wouldn't want to eat any more.
    
    He never had a problem gaining weight, though, partly because my
    sister-in-law used to follow him around the house with a cup of
    Cheerios and pop one into his mouth whenever he wasn't looking...
    but that's another story.
    
    --bonnie

     re: .9 -- gee, my oldest was not quite 18 lbs at a year -- now at 7.5 
    he's easily 50 lbs and over 4' tall.  He was always in the 25
    percentile -- was only 6lbs 3oz, 21" at birth.  Food never was
    important to him, still isn't [unless it's chocolate!]. He was
    extremely active, walked at just under 11 months, still is very 
    active even when sleeping -- you should hear him banging the wall of 
    his room, next to his bed.  The only time he's quiet for any length 
    of time is in front of the TV -- which gets used only when WE'RE
    exhausted! -- or when he's reading.
    
    Neither of my kids "lives" to eat -- my little one was only 18 lbs at
    12 months, now at almost 4 is around 35 lbs.  But neither looks like
    they're starving -- I don't envy those who have 15 lb, 3 month old
    babies -- the thought of carrying around someone who can't hold on
    tires me!
    
    So have faith -- things will change.  And there's nothing wrong with
    being tall and slim [except trying to find clothes that fit properly]
    -- I wish I had that problem!!
    
    Sandy

    Sue,
    
            Our pedi did suggest the caloric additives for the
    formula...they made the formular thicker, and much tougher for him to
    get out. Plus, the caloric increase is not that significant. 
    	As far as his 'perkyness' (is that a word) during his no-eat
    periods, it was always very good. He NEVER seems lethargic. He is
    constantly on the go. His primary operating mode is 'I don't want to
    be in the place I am currently'. 
    	Last night he had one bite of his supper and that was it! ONE BITE.
    He just shook his head and made raspberries. We tried for a while, but
    to no avail. We were having chili-mac for supper (chili with macaroni
    and cheeze). My wife was trying to eat and feed Adam. She decided to
    give him a small bit of hamburger....he ate it. I came across the table
    and cut a piece of macaroni in half and give it too him. ....he ate it.
    I said to Ellen, well, let's keep trying this and if he throws up, we
    haven't lost anything (one bite of supper). He usually gags on solids.
    	Well, he ate a LOT of this stuff. We also chopped up some steamed
    carrots....he ate them. Probably not as much calories as usual, but
    it is a start. MAYBE HE IS JUST SICK OF THE MUSH???? I'll find out
    how he did tonight....
    
         Frank

    Frank,
    
         Did your Pedi suggest that you not force him to eat anything that
    he doesn't want to eat?  And, do you force him to eat to any extent or
    do you just let him do what he wants?  My pedi told us to let him do
    whatever he wanted and that he felt he would turn himself around and
    wouldn't let himself starve.  I don't think the guy was getting the message
    but we did it anyway to show him that when we said he wouldn't eat we
    meant exactly that.  We have to force the kid to a certain extent or he
    will only eat about 12 oz. a day.  That was making him lose weight.  We
    hate to force him but we don't know what else to do.  We are talking
    about his formula here.  Not his food.  We only play at that.  Any
    ideas about that?
    
    
                                   ___Sue
    
    Oh yeah.  Does anyone out there know how long a bottle should sit
    before it is tossed out?  It takes us quite a while to feed Rod as he
    likes to do a little bit at a time.  We've been wondering how long it
    can be used before we should forget it and get him a new one.  

    Sue,
    
           I guess 'forcing' isn't the right word, but 'strongly persuaded'
    is better! Adam is what they call a 'grazer'. A cow doesn't eat 3 meals
    a day but eats a few bites....,,,swats a couple flies,,,eats a bite or
    two,,,sneezes,,etc. This is how Adam has his formula. When he first
    gets his bottle (6 oz), he goes at it with a furor. He will only take 
    about and oz, then he puts it down and goes on with his playing. He'll
    then crawl back to it and take another oz or 2. This goes on for almost
    an hour. He ends up with 5-6 oz in his belly. The only problem is
    within a couple of hours it's lunch time, and he ain't too hungry. With
    the hot weather, he's been doing better on his bottles. 
    	He hasn't had baby food since yesterday morning. He refuses to eat
    it. He had a soft boiled egg and toast for breakfast (mind you, not the
    WHOLE egg or toast , but just a bit of each) and that was it. Lunch and
    supper were more 'people food' meals. We'll have to see if he maintains
    his weight at this small food intake level...I tend to doubt it though.
    
        We've realized HE and only HE will decide how much he will eat.
    We'll just keep on truckin' and not get TOO concerned unless he shows
    signs of sickness.
    
          Frank 

	I worry about my little girl sometimes.  She's 10th percentile in height 
and 15th in weight.  Not a problem in and of itself.  But it's hard to remember 
that when she's going through an orchid phase (you know, when they are living 
on air... :-) ).  

	I know that books all say not to force food.  That kids don't need a lot 
at this age. (Katie is just a hair past 2.)  But what does "not a lot" mean???
1 bite? 1 hamburger? 2 poterhouse steaks? :-)  

	I finally found a concrete answer for this.  I forget the source, (maybe 
the "Pediatricks" [sic] column in Parents?) but I read somewhere that "not a 
lot" = 1 TBL of each food group at each meal!!!!!  Damn!  They're right. That 
*isn't* a lot! :-)  I double checked this with our pediatrician and he agreed
with that information.  So when you look at how much your toddler eats, compare
it to that, not a full adult portion (which is what I tended to do).  It makes 
it much easier for me to relax after Katie eats two bites of brocolli, one bite 
of apple, a few sips of milk, maybe a bite or two of chees and then announces
"I all done!"  (I know all I have to do is offer her some whole wheat crackers 
as a snack later and she's pretty much had a well rounded meal.)

Tracey

  

    
    Yep, Tracey, I also read that 1 TBSP = 1 "serving" for toddlers.
    Made me feel a whole lot better but damned if I can remember where
    I read it.   One question though, how come they seem to have no
    problem downing a dozen servings of ice cream or cookies???
    
    cj/

    re last few
    
    I thought it was 1 T for each year of their age (kinda like the
    birthday party rule) per serving....
    
    Leslie

    For normal lack of appetite, the kids will not only survive,
    they'll thrive.  (I know nothing about the syndrome described in
    the base note, but suspect something else might be involved
    there.)  And eventually you'll wish they were in another orchid
    stage...
    
    When Kat was two, she was in the 70th percentile for height and 
    off the bottom of the chart in weight.  I mean, skinny!  Her total
    intake of food for the day was usually a few Cheerios (doesn't
    take  a lot to make a tablespoon), some cottage cheese or bites of
    cheddar cheese for lunch, a few bites of meat (she was fond of
    Gerber meat sticks), a couple of slices of steamed carrot, a
    couple of spoonfuls of mashed potatoes.  A glass of milk, small,
    with every meal, or occasionally fruit juice. 
    
    I knew she was over this phase when she was 3 and I took her out
    for pizza, which she loved (she'd eat half a slice) and she ate 
    *3* *whole* *slices*.  After that she earned the nickname "the
    bottomless pit" and during her early adolesence no edible item was
    safe alone in the house with her.  
    
    She's now 17, 5'2" and 120 lbs. and strong for her size, an
    apprentice with a professional ballet company, and carrying a
    straight-A average including several AP and honors science
    courses.  
    
    As long as they're healthy and happy, don't worry about it.  I
    know, easier to say than do, but I've been there. . .
    
    --bonnie

    Do you know the name of the syndrome?  There was something one of my
    elementary schoolmates had where one leg was longer than the other and
    the doctors had to do something to the "good" leg to stop its growth
    until the other leg caught up.  Now this is something over 30 years
    ago, so I'm sure technology has changed.
    
    If you are near a good, large University with a medical school check
    their library or even book store for reading material.  UMass Medical
    in Worcester has been a great resource for me in several cases, both
    personal and in my other life as an EMT.
    
    Lyn

    I'm very intrigued by this Russell-Silver syndrome.  My daughter Alison
    was a low birth weight baby - she weighed 5lb when she was born (at 38
    weeks).  I noticed really early on that she had asymetrical features -
    her right eye and ear are smaller than her left, and the right side of
    her nose and mouth are smaller than the left side.  When she was
    newborn it was her eyes that were most obvious - her left eye looked
    HUGE compared to her right!  Having said that, no one but me thought it
    was that obvious - people noticed it when I pointed it out, but said
    that they wouldn't have noticed it otherwise.  I asked my docter at the
    six week check and she said that there was nothing to worry about - no
    one has a truly symetrical face.  My doctor is a G.P rather than a
    pedi, so she may not have heard of R-S syndrome - not that I'm assuming
    my daughter has got this syndrome.  
    
    Alison is now two years old, and now that she wears shoes I know that 
    her right foot is half a size smaller than her left foot, but I don't 
    think that she has one leg shorter than the other - she walks OK.  
    She doesn't show any other symptoms, and is as normal as a two year old 
    can be in all other respects (on target for all developmental milestones).  
    Also now that she is older, and her head isn't so large in proportion 
    to her body as a newborn's, the difference in the size of her eyes isn't 
    nearly so noticable as it was.  
    
    I would be interested if anyone finds out any more information about
    this syndrome.
    
    - Janet

    Janet,
    
    Did your daughter ever have any problems in the eating department?
    I guess fasting is one of the charecteristics of this syndrome.  My son 
    is doing another hunger strike.  We barely got over the last one and
    here we go again.  They are going to do an upper GI on him in a couple
    of days to see if everything is connected correctly.  After that, who
    knows.  We will be going to see a genetic specialist apparently who is
    very familiar with this syndrome. I guess he wrote a book about it. 
    This will happen in November so I will let everyone know what I find
    out then and will let you know if I find out anything before then.
    Your daughter sounds quite a bit like my son.
    
    
                                     --Sue

Sue

Alison didn't have the same sort of eating problems that you describe 
- she did eat and she did put on weight, BUT she did eat tiny 
amounts.  When she was newborn it would take a hour to get 2oz of 
formula down her.  Even when she was 6-8 months old she never drank 
more than about 4-5 oz at one go, and she was still very slow.  It took 
ages to get her to take solids.  I started when she was 4 months old 
and by 7 months she was still having five milk feeds a day with some 
solids at three of the feeds - not three solid meals with some 
milk, like other 7 month olds.  

She wouldn't eat "real" food, only baby jars and packet food until 
she was about 14 months old.  When she started eating real food she 
was still very slow and VERY fussy (she lived on sausages, beans and 
spaghetti for a long while).  Then all of a sudden when she was about 
22 months old, she suddenly turned into a bottomless pit - just like 
Bonnie described in a previous reply.  She's now eating me out of 
house and home, which is quite a novelty!  Probably because of this 
she's suddenly jumped from being on the 3rd centile for weight to the 
dizzy heights of the 10th centile!   Her height is on the 25th 
centile - she weighs 23.5lb and is about 32 inches tall.  

Alison was fairly slow with physical development - is this a symptom 
of the syndrome?  She didn't roll over until 7.5 months, didn't sit 
up unsupported until 8.5 months, crawled and stood up at 10 months 
and walked unaided at 14,5 months - but all that is within the normal 
age range for those milestones.  

As for the the other symptoms - Alison hasn't got liver spots, or a 
triangular face.  I'm not sure about the curved finger - all her 
fingers look like they may be double jointed in the middle joint - 
when she points her finger the finger curves up.  

Sue, I hope that you get good results from the tests, and I hope that 
your son starts eating more soon.  I know it's such a worry when they 
are so tiny.  Please let us know how everything turns out.

- Janet
          

    Janet,
    
    Yes, as far as I know right now, being behind developmentally is one of
    the things to expect with this syndrome.  But, with my son, it would be
    hard to determine if it was due to the syndrome or from being 6 weeks
    early.  Anyway, he isn't behind at all.  He flipped himself over on his
    back at around 3 1/2 months and does it all the time now (4 1/2
    months).  He just doesn't like to eat.  I am SO glad to hear from other
    people that things can, AND DO, turn around.  Thanks for all of your
    replies.
    

    Just another example I'd like to share:
    
           My wife and I worked during college in one of the departments
    at school. There was a secretary there who had two kids..,,,both were
    6-8 weeks early. They were very small throughout their childhood. We
    knew this lady 5-6 years ago. Her kids were 9 and 11. Even then they
    were little squirts for their age. We got a call from her last night.
    Her now 14 yr old is slightly above average hight/weight, and her
    17 yr old is *GET THIS* 6 feet 3 inches with a large build! 
    
    	- You just can't fool MOTHER NATURE!!!
    
            Frank

         Well, we went to see the genetic specialist yesterday and he
    confirmed the pedi's diagnosis of Russell-Silver Syndrome.  What it is
    is really a description of an appearance.  The triangular face,
    assymetry, large head in comparison to face, small for gestational age,
    cafe au lait spots, curved fifth finger (pinky), webbing of the 2nd and
    3rd toe, feeding problems.  I can't remember the other stuff.  My son
    really only has the assymetry and the facial features.
    
         It is a random sort of thing. He says he doesn't know of any
    family where there are more than one child with this. As far as how
    small he will be, they don't know as the height varies greatly. He did
    say that he is encouraged so far by his height as it has caught up
    slightly. He has gone from the 3rd to the 5th percentile (26"). His
    weight is a different story however.  He is only 11 lbs at 7 months and
    I guess that is the weight of a 2 � month old.
    
         What to expect.  He will have to see an orthopedic surgeon soon as
    he will need a shoe with a lift for when he starts to walk so he
    doesn't curve his spine. There is something that they can do now for
    the height problem and the difference in leg length. They break the
    bone and then put a screw type thing in between and keep turning it
    every day a mm and the bone grows in to meet it. Not looking forward to
    that one at all.
    
         So, now you know what I know.
    
                          ---Sue