Adoption related-Still food obsessed - Page 9

[Whistler]

Subbing as we're adopting from Ethiopia and trying to gather all the info I can.  I just finished our training that talked quite a bit about parasites and also food issues, but since I don't have hands-on experience I'm hesitant to weigh in.

I'm so surprised your Ped only tested for Salmonella.  According to our training the common parasites from there are tapeworms, flatworms, giardia (sp?), and such.  The intestinal parasites especially would make you hungry constantly.  I hope the CHOP has better answers for you.

Also, do you know what they served for food in Ethiopia?  I saw a video of an orphanage over there and they were serving some sort of large tortilla thing.  Also in our training was a story of a little Russian boy who had terrible food issues until someone fixed him black bread and borscht.  Then he was ok and slowly transitioned after that.

I'm trying to picture myself in your shoes (as we will actually probably BE in your shoes in six months or so) and definitely reading all the suggestions and filing them away for future reference.  I do understand your anguish, mama.  Something is wrong with your little girl and you want desperately to fix it but you can't solve the puzzle.  I hope you solve it soon and find people who can help you.

[lookatreestar]

maybe i missed this in the earlier posts but what exactly are her stats? weight/age. my dd has always been off the charts or 95th percentile for weight. and she is a shorty. always had the huge pot belly too. at almost 4 it is starting to look a little smaller. (fwiw she is 42lbs at 3.5)

anyway glad do hear WDW was fun 

eta: i am probably going to put my dd in swimming for exercise and fun. she isn't the run around type of kid. she does like to play but she will sit and play quietly or read. kind of a low energy kid iykwim.

[redvlagrl]

Originally Posted by Whistler 

Also, do you know what they served for food in Ethiopia?  I saw a video of an orphanage over there and they were serving some sort of large tortilla thing.  Also in our training was a story of a little Russian boy who had terrible food issues until someone fixed him black bread and borscht.  Then he was ok and slowly transitioned after that.

The tortilla thing is injera - it is a fermented bread/pancake type of thing made from fermented teff grains. It is the staple and is delicious! In fact I am going out to eat Ethiopian tonight with some friends.

This is really interesting. I wonder if her gut is used to fermented grains rather than what we tend to eat? That would explain any bloating.

[lookatreestar]

that is a really interesting point!

[TTCH785]

UPDATE

  Just thought I would come here and  update all of you on what is going on with my daughter.  She has undergone extensive testing from an International Adoption Clinic, and so far some of the testing has come back abnormal. (Liver enzymes elevated, and H.Pylori was positive).   She has continued to be EXTREMELY unhappy most of the day, and I am starting to become more and more concerned that something horrible might be wrong.  She is very lethargic, very irritable, has NO interest in playing at all, and is still ALWAYS HUNGRY.    I have been constantly increasing the amount of food she is getting, and she has gained a considerable amount of weight, although the doctor is concerned about this because she told me that she is gaining "inappropriately" for the amount she is eating.  She has stopped growing (height wise) completely.  She is now in the 50th percentile for weight and 3rd percentile for height.  The doctor told me that according to the charts, she is extremely overweight FOR HER HEIGHT.  This doctor has really freaked me out because I was hoping to hear that I should just continue to let her eat as much as she wants, but I went to her and heard the opposite.  I am even more confused now, and extremely concerned that something else is going on here that can cause her to gain almost a pound in 10 days.  This has been her rate of growth lately, and the doctor says this is NOT normal.  But I can't seem to find anyone that can tell me what is wrong and what to do about it.  I have an appointment with a pediatric gastroenterologist, and I need to go see a pediatric endocrinologist too because she has stopped growing.  So far, her thyroid tests have come back normal, as have her parasite tests,  either of which would explain the weight gain and lack of growth.  But apparently the parasite tests are not always accurate.  Oh, and the blood test for celiac came back normal, too, which I'm quite relieved about, but I'm wondering if that is definitive or not.   

   The way she acts sometimes is as if she is ill, but after a year of seeing doctors we are no closer to having an answer.   While I can understand her having an emotional need to overeat, there is no explanation for her distended abdomen,  extreme bloating, inappropriate weight gain,  extreme lethargy, and her failure to grow (went from 50th percentile in height to 3rd-in 1 year)

    I just wanted to keep everyone updated.  I know some people think I am overreacting to a child that just wants to eat, and that I quite possibly was not letting her eat enough, I can assure you that she is eating quite a healthy amount, but her behavior and other issues are extremely concerning even when she has had a huge meal.  A child that is in the 50th percentile is certainly not overweight if their height matches that percentile,  but it was explained to me by the doctor that if your child is in the 50th percentile for weight, they should be in the 50th (approx) for height, too.  The disparity is what is not good. 

   I am at a loss.  Still.  But I wanted to let everyone know what is going on.  I am considering going to a naturopath to see if they have any ideas.     Someone mentioned that she can possibly have a systemic yeast infection.   I don't know how to get her tested for that.

   Anna

[mamadebug]

Thanks for the update - I have wondered about you guys form time to time!  It sounds like you are on the right path at the International Adoption Clinic.  I am sorry it is stressful - not having the answers to a medical condition always is.  Are they referring you on to other doctors, though?  I can't imagine that all of this stuff would be going on with her and they would just kind of leave you hanging (at least I hope not!).  I am sorry it is stressful while you guys work through this to get the answers you need.  

[ariahsmum]

Good to hear an update, Anna.  I'm sorry I couldn't have been of more help to you and your family... I'm sure many of us just want to support you thru what, honestly, seems like a real crisis for all of you in many ways.

Many blessings and best of luck!

[fnpmama]

Anna -

I have been following your thread because I have been having some similar food obsession issues with my DS (21 mths), and I am also searching for help and answers.  So just some hugs

FWIW, I don't think you are overreacting at all.

I think that considering she is falling off the curve for height a pediatric endocrinologist might be very helpful.  There several endocrine disorders associated with growth hormone defieciency (short stature) and childhood obesity.  Also, there are some genetic conditions, most notably Prader Willi Syndrome, associated with hyperphagia (eating too much), food obseessing, short stature, rapid weight gain, in addition to behavior disturbances.  Have you discussed the possibility of a geneticist referral? Prader Willi children generally have other issues like hypotonia when they are infants and developmental delays.  So, that may not be what is going on, but it might be worth talking to the doctor about. (Children are not routinely screened for Prader Willi, so she would have to have a specific set of genetic tests generally only ordered by geneticists and then usually it is at least a 2-3 week wait for results)

Also, there is another mama here on MDC struggling with finding answers for food obsession, though not with an adopted child.  Her thread is in the "childhood years".

Thanks for keeping us updated.

Kristen

[prettypixels]

I hope that you get a second opinion.  50th percentile weight is not "inappropriate," it's 50th percentile!  You can't put babies on diets, they are growing.  :( 

[bri276]

I'm also hoping the ped endo will be helpful.  My older daughter was 3rd for height and 50th for weight until she started growth hormone.  No one (and we had every specialist in the book) ever implied her weight for height discrepancy was a problem and I wouldn't worry too much about that at this point.  Pediatricians unfortunately aren't often terribly helpful with kids who don't follow the norm.  Keep fighting for some answers.  good luck

[alwayslearning66]

Oh this is such a rough time for you and your family! It brings back memories of our first who came from Russia at 3.5. It took 6 months of various antibiotics and trips to the doctor to straighten things out. She couldn't even tell us if/when she was in pain (despite that we knew Russian). We only heard about it in the middle of the night because she'd wake up screaming. Were the screams psychological or physical, we'd ask ourselves in exasperation.

Given the area she came from, we learned that there were always intestinal bugs in the water and these kids always had some combination of them. She was "failure to thrive" when she came to us, off the charts small. So our story is not yours, exactly. I do share your pain, however. It was espcicially difficult not to compare my experience with the kids I saw out and about. Hooking up with an adoption group with kids from Russia was helpful, though not key to resolving our problems. You're doing the right thing.

Both our kids have food security issues which makes it difficult to suss our illness v. emotional. Finding a very experienced local doc who had a large number of adopted kids in her practice really helped. The International Clinic may not be what you need- I chose a pediatrician based on recommendation from local parents instead of going to a "famous" place like John's Hopkins or Georgetown. I had to follow my instincts on this. When we first consulted with a well known doc in the adoption community on whether we should take the risk of bringing home our daughter, we received a very negative outlook from that well experienced doc. We went with our gut and I'm happy that we never went back to that doc. My  point is that you will find an answer to your questions, it just requires lots of paitience and resourceful thinking. Our daughter still gorges from time to time, especially favorite foods. We've come a long way, though and you will too.

Our dfs was food attached, left with bags of food in front of the tv in his birth family. So that's been a long problem to work out. Lots of encouragement and gentle redirection helps with him.  When he came to us, he too screamed bloody murder when we made him wait until the apointed meal time (frequent meal times shared with adults, by the way). Lots of hugs and explanations along with some flexing of the meal times helped. 9 months later and he's WAY better. Sharing a common language and being older (now 4) made that transition easier than  it would be with a younger child, especiallyh if there's an illness attached.

Best wishes in these tough and confusing times!

[tiffani]

just here to offer hugs.  glad you're on the path toward figuring out what's going on with your little one -- hoping the docs and tests give you clear answers, and SOON!!!

[lauren]

Sending strength your way. I am hoping at least one of the docs is going to help figure out with you next steps-- what happens next after the results with the elevated liver enzymes, etc.? I would also second the notion of going to both an endocrinologist and a geneticist to rule out Prader Willi syndrome.

http://www.pwsausa.org/syndrome/index.htm

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002572

Prader Willi sounds like a definite possibility, though hopefully it is not.

[WifeMomChiro]

Huge hugs to you.  If she were my daughter, I would really want to get an IgG allergy panel done.  There can be IgG allergies that affect the gut, but they don't necessarily show the outward signs of allergies. 

[TTCH785]

Hello,

  Thanks for all of the helpful posts.  I am in the process of finding a naturopath to explore food allergies, etc.  Also, although I still come here and update in the hopes that this story will someday help someone else because I have been helped by archives so much, I am at a loss as to explain why people continue to take things I am saying out of context.  I DO NOT HAVE MY DAUGHTER ON A DIET.  I merely stop her from eating nonstop from morning until night, and try desperately to get her interested in something other than food, when that is really all she is interested in sometimes.   I don't think anyone understands unless you've been faced with this situation how it feels to see a child NEVER STOP eating.  I feel like stopping my child at a certain point is just as much my job as a mother as is feeding her enough. 

   In addition, I understand that 50th percentile does not normally mean a child is overweight.  But a child that is 3rd percentile for height should be somewhere around that percentile to be an average weight for that height.  I'm not sure why some people don't understand this.  It was explained to me like this:    A man who is 6'4" and 200 lbs. is not overweight, but a man who is only 5'8' and 200 lbs. is very overweight.   The ratio of weight for height is the unhealthy percentile.  My daughter is in the 95th percentile for this ratio, which is considered very overweight FOR HER HEIGHT.    I also have a child who is in the 90th percentile for height, but only 50th percentile for weight, which makes her UNDERWEIGHT for her height.   She is just an extremely active, high metabolism kid.  

 Percentiles only make sense in relation to a child's height.  A child who is in the 95th percentile for height AND weight, is at a healthy weight.    The "50th percentile" comment makes no sense.

  I really don't know why I'm explaining this, and I don't feel like defending myself here.  I am just angry that people could possibly be saying things in an accusing tone when I am here trying to help my daughter, and hopefully provide information for someone in the future.   If someone does not understand something, then they probably should not comment at all.

   Thank you to the MANY helpful posters who have given me support, information, etc.  This forum is a wonderful resource, and I WILL continue to update, and just ignore the hurtful comments from people.

   Anna

[texmati]

Oh anna, I hope that you do get answers somewhere.

I just want to say I don't think the percentile's are supposed to be used as a measure of underweight/overweight, since they just plot your child in what the average height is for a population.

Shouldn't they be looking at BMI or some equivilent to measure whether she is overweight or not?

[VisionaryMom]

Originally Posted by ram3113 
 In addition, I understand that 50th percentile does not normally mean a child is overweight.  But a child that is 3rd percentile for height should be somewhere around that percentile to be an average weight for that height.  I'm not sure why some people don't understand this.  It was explained to me like this:    A man who is 6'4" and 200 lbs. is not overweight, but a man who is only 5'8' and 200 lbs. is very overweight.   The ratio of weight for height is the unhealthy percentile.  My daughter is in the 95th percentile for this ratio, which is considered very overweight FOR HER HEIGHT.    I also have a child who is in the 90th percentile for height, but only 50th percentile for weight, which makes her UNDERWEIGHT for her height.   She is just an extremely active, high metabolism kid.  

 Percentiles only make sense in relation to a child's height.  A child who is in the 95th percentile for height AND weight, is at a healthy weight.    The "50th percentile" comment makes no sense.

Anna, I really hope that you get some answers. I have wondered many time since reading this thread the first time what happened. We've done the merry-go-round of specialists who don't really have answers, and it's frustrating and all-consuming. Gently, though, I don't think Bri was questioning your comments. She was just sharing that her daughter was at 3rd for weight, 50th for height, and even with that discrepancy, it wasn't the primary motivator for thinking something was wrong. I don't think she was questioning you. 

Tex, BMI isn't accurate for children. It's been a while since I've read the reasoning, but iirc, it's related to the developing muscle mass and frequent changes in body type. Still, though, the height/weight charts shouldn't be the a big factor in deciding something's wrong. They're just a piece of the puzzle. They're notoriously wrong for certain body types. They're pretty geared toward what we think/know about Anglo body development.

[fnpmama]

Originally Posted by ram3113 

I merely stop her from eating nonstop from morning until night, and try desperately to get her interested in something other than food, when that is really all she is interested in sometimes.   I don't think anyone understands unless you've been faced with this situation how it feels to see a child NEVER STOP eating.  I feel like stopping my child at a certain point is just as much my job as a mother as is feeding her enough.

Anna - Thank you so much for saying this.  My DS is obsessed in a very similar way  - and it is so hard!!  I know that it has been the hardest thing for me so far as a parent.

Anyway, it seems to me you are doing a great job of nourishing daughter with healthy food. 

Thank you for this thread.  I found it as I am search for help with DS and your strength has encouraged me to continue searching for answers.

[Youngfrankenstein]

You're doing everything right, mama! (((HUGS))) Much success to your family.

[snguyen]

I see you have gotten a whole bunch of replies here that I haven't had time to read, so forgive me if anyone already mentioned this.  There is another thread here on MDC where the mom just found out that her DD has both Celiac and SPD.  She mentioned from the start her DD's insatiable hunger.  I hope you find something useful there or that maybe you and she can find some support.  Good luck, I hope you find your answer.

http://www.mothering.com/community/forum/thread/1294359/insatiable-hunger-in-3yo-we-saw-the-doctor