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#1 of 7 Old 06-21-2013, 09:28 AM - Thread Starter
 
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My DD who will be 6yo in a week was my best birth, everything that followed is hard.  She was 8lbs8oz came out sunny side up and just fine.  At a few days old she became colic.  She was a good nurser but didn't want to nurse constantly like my first.  She cried from the time she was a few days until she was around 2 months or so.  It started every evening around 5-6pm and she would cry until 10-11pm or later.  She would not nurse and I could not console her in anyway.  I did the rounds of cutting out things from my diet to help but nothing ever did. She also constantly spit up.  Every time I nursed her she would immediately vomit her milk back up.  That went on until she was eating more solid food then she was nursing.  

 

She didn't sleep.  She never slept more then 20 minutes at a time and never more then 6 hours in a 24 hour period.  She didn't sleep through the night until she was over 2 years old.  Then had years of getting up with nightmares.  Now she sleeps longer then anyone in the house. 

 

She is as smart as a whip and our pediatrician at the time could not believe she was talking in 5-7 word sentences at her 1yo visit.  However at 1yo she refused to bear weight on her legs.  If you tried to stand her she would fall over or bend her legs in refusal.  She never pulled up on anything. She crawled just fine.  Around 13 months old I got her to finally stand on her legs and by 15 months she was walking.  

 

The whole year she was 3 she didn't gain ANY weight.  She went from being my plump little dumpling to skin and bones.  She also started vomiting very often.  We noticed her hands would shake.  Her hair seemed to be thinning and falling out.  She also is very uncoordinated.  Can't run properly or catch things.  Walking into doorways instead of waiting for the other person to go through and then going behind them.  These things were shared with the doctor but they were not concerned.  She was still on the charts for height and weight so nothing was done.  They didn't see the other symptoms in her.  

 

At 4yo I switched doctors.  I told them all my concerns with her.  She said lets run some blood work. Great!  I got a call that her thyroid was off.  They told me it was hyperthyroid.  Which fit all the symptoms.  Vomit, weight loss, hair loss, sleeplessness, and shaking.  An answer! Then I got another call back that the nurse was wrong it was hypothyroid.  Which is weight gain, always tired, etc.  None of those things fit.  Anyway we took her to a specialist and she is on daily meds for hypothyroid which she will need for the rest of her life.  She also had an ultrasound of her thyroid and everything was fine. We saw improvements in her.  She started to gain some weight and seemed to be vomiting LESS. 

 

The vomit continued.  The shaking seem to get worse.  One morning when we gave her cup of water for her meds she was shaking so badly she spilled it everywhere.  So next was a visit with a neurologist. He diagnosed her with Essential Tremor. It's genetic. Runs in families.  I shake a little too but not like her.  It requires nothing.  It just is and she has to live with it.  Meds will only be prescribed if it becomes so bad she can't function in life.  We had an MRI on her brain to rule out other very serious life threatening condition's.  Also an EEG to make sure she didn't have any other issues going on.  All test were normal. 

 

So the vomit continued.  My husband and I fight about it.  He believes she vomits to get her way (like his sister did) and it has no medical relevance.  I don't believe a child can do such a thing or would ever want to!  However I did start to see a pattern.  When ever she had to go somewhere scary like to give blood or go see a doctor she vomited.  If we were going somewhere she didn't want to go she vomited.  When ever we were going somewhere exciting she vomited, always.  She still does to this day.  I don't tell her where we are going ever but when she realizes she is almost at her friends house she vomits.  Fireworks start on the 4Th, she vomits.  I also see it with dairy.  She eats ice cream and vomits it immediately back up, but NOT ALWAYS.  She drinks milk, eats cheese everyday and is fine.  

 

I wanted to put the wheat/gluten and dairy allergy issue to rest.  The doctor agreed with me that it didn't make sense she could eat these things everyday but only get sick some of the time.  I finally took her to an allergist.  He did the pins in her back and she came up negative for any allergies.  However the vomit continued so we took her to a gastroenterologist.  He did the blood work for allergies which is much more accurate.  We tested her poop and everything.  She got a clean bill of health from him.  He said some kids just have sensitive stomachs.  He agreed the vomiting was from her nervousness.  Like the kid that goes on stage and pukes he is so nervous.  I always feel like vomiting when I'm upset too.  

 

Well she seemed to get better.  Vomiting much less.  But in the last week she has vomited 3 times.  I feel like I'm back at square one.  The third vomit she had no dairy.   How can she eat something everyday but only be sick from it on occasion???? My husband said just cut out wheat and dairy and see what happens.  OK that would be easy for me but for a child who hates meat and veggies and who will tell me "this is disgusting and I'm not eating it.  I'll go hungry"  What am I going to do?  Starve her? She is already underweight.  If I cut wheat and dairy from her she will have to survive on fruit.  I don't see that happening.  I've been through this battle before and I will not win.  

 

So I don't know what to do and I worry constantly about her.  She is so skinny, not like the rest of us.  She has hypothyroid and essential tremor.  She has had all these weird issues all her life.  And I try to piece them together.  The colic, vomiting from birth, not sleeping, not bearing weight on her legs... Her pupils are always dilated.  She is uncoordinated and shakes.  She has really small tonsils.  The dentist asked if she had them removed? I said no! I can't begin to tell you how much I worry and cry.  I think something is being missed here.  Everyone says she's fine and I want to believe it.  I try my hardest but when I see her shaking, or vomiting or unable to ride her scooter as her 3yo brother blows past her on his I worry. 

 

I'll take any idea or suggestions on what to do next. 


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#2 of 7 Old 06-22-2013, 07:16 PM
 
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Was she tested for Celiac?

 

Thyroid issues and tremors and possible issues with dairy would make it something I would consider.  

If you do want to try a GF diet, I would strongly urge you to test for Celiac FIRST. Once gluten is removed it can be hard to put it back into a diet for testing.

 

Also, just a note that blood work is no more accurate than skin prick testing for allergies.

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#3 of 7 Old 06-25-2013, 08:45 PM
 
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Random thoughts:

I have a puke kid. I do think it could be just nerves. I've never figured out a pattern for my son. He has a metabolic condition that wasn't diagnosed until he was 3.5. Is her energy level normal, then? Is her muscle tone normal?

Is her thyroid running normal now, with the medication?

She sounds like you might have had reflux. Was that ever investigated?

The best testing we ever had was run through Metametrix (comprehensive urine and stool). An integrative medicine MD here ran them on my son. We got answers with some things that I had thought would never be answered.

I'd do a celiac panel for sure, if that wasn't done. If it was negative, it still might be worth trialing gluten free. But don't do until testing is complete.

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#4 of 7 Old 06-30-2013, 09:33 AM
 
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Perhaps her thyroid meds need a little tweaking...? Thyroid & gluten were my first thoughts before I even got halfway through your post. There is a blood test to check for the gene that causes celiac if you don't want to put her through getting scoped, which is the "gold standard" diagnostic tool, but isn't always 100% fool proof unless you go to a doc that knows celiac inside & out. 

Also there are tons of great GF substitutes on the market now that look & taste just like the regular gluten filled breads, cakes, cookies, crackers, etc so that's not really a good reason to not try it out. Our super wal-mart has a gf section in the pasta aisle, Trader joes has great options, also our frys/kroger regular grocery store has lots of gf products in the natural foods section. There are also yummy dairy free ice creams out there-rice, almond or coconut. They're all great. a little pricier, but delish. It seems like if the vomiting doesn't get under control she could end up w/problems in her esophagus from all that acid coming back up so frequently....

Some bodywork might help her too like cranio sacral or chiropractic. 

A homeopathic doc could probably do a lot to get her a remedy to strengthen her overall constitution and help w/the nervous vomiting. 

Hope you can find a combination of things that will help! 


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#5 of 7 Old 06-30-2013, 11:21 AM - Thread Starter
 
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Yes she was blood tested for Celiac.  All allergy testing pins and blood were all negative for any allergies.  My gastro doc and family doc both told me the blood would be more accurate.

 

Her thyroid levels are normal with her medication.  She gets blood work every 6 months to be sure they are good.  She recently had her dose increased.  The thyroid issues I believe are genetic.  My husband has hypothyroid as well as my mother and her sister had hyperthyroid and had to take radiation pills to kill it??? Something like that.  So the thyroid problems run in both families.  

 

Her energy is OK.  Some times she does say her feet hurt or she's tired.  When we are out on long trips like Sea World she is the one who sits in the stroller.  But for the most part she seems normal and like her brother and sister.  She does not share the same build as her brother and sister.  She is very thin and has chicken legs, ankles, and feet.  Reflux has never been investigated.  

 

My whole resistance to GF is due to the fact I did the whole30 which is grain free (even beans), sugar, dairy, and caffeine (Paleo) Well on day 23 I broke out in hives all over my body and had to seek emergency medical help.  Had to get a shot in my butt! This holy grail of diets actually made me very sick.  I never felt fantastic.  I mostly felt sick the whole time! I do believe wheat is bad for you to some extent.  The wheat today has 50x's more gluten in it then a few decades ago.  That is why all the wheat we do eat is organic and has no GMO's.  I don't know if this reduces the gluten or helps I never did the research.  I think people have been eating grains for thousands of years and have lived long and healthy lives.  I feel like EVERYTHING is bad for you.  There is always a new study on this or that.  I feel like we are trapped in our little food box and it sucks! There are kids out there eating garbage and they are super healthy.  I grew up eating garbage and I was healthy.  It's just not fair that I've only ever given my kids healthy items and they are the ones that are picky and sick.

 

We have tried most of the gluten free products out there and one time or another.  I have know a lot of people having issues with all the gums they put in these products.  Guar gum, etc.  It's like anything packaged is bad especially substitutes for other items.  I grew up on Veggie burgers and morning star fake chicken things because I was a vegetarian for 13 years.   They now say those things are bad for you.  I'm a believer in REAL food.  Meats, dairy, grains all organic, grass fed, cage free etc. My kids have never had McDonald's, or soda or processed junk, ever.  

 

I started taking my DD to the chiro.  She has had 4 visits now.  Yesterday was her 6th birthday.  I made her a dairy free cake (Chiro said NO Dairy or Wheat).  She barley ate any dinner a few raspberries then a few bites of her cake and then vomited.  5th time in 2 weeks.  She has been in the bathroom countless times saying she's sick but didn't vomit.  I don't know if it's mental or getting to be routine? I'm taking her off of dairy and wheat.  However there is NOTHING she will eat. Besides fruit.  She tells me she hates every kind of meat.  She'll eat broccoli but gag on it because she doesn't like it.  She won't drink smoothies even all fruit ones.  I'm the mom who posted the tread "Do You Force Your Kids To Eat?" because meals are a constant battle.  My kids don't want to eat anything.  I cried and cried my eyes out last night after she vomited.  Her birth was so beautiful.  She spent the first several minutes of her life just gazing into my eyes.  Alert, happy, healthy.  I wish I could go back to that day when she was my perfect baby and I wasn't filled with constant worry about her.  


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#6 of 7 Old 06-30-2013, 03:53 PM
 
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Well, it sounds like your DD couldn't be in better hands, Mama, but it is rough being so health conscious & still having so many issues. I struggle w/that same thing myself. I tried paleo out last summer & didn't do great w/it either... I've been trying to deal with chronic fatigue & a chronic rash for years.

I too have heard a lot of people have trouble w/the gums in the gf products...I experimented in my own baking using psyllium husk and flax meal w/some success. 

Organic wheat is still high gluten as the scientists continue to select for the strains that have higher gluten contents cuz it's so highly regarded in the baking world, spelt & einkorn have less though.

I wouldn't/don't force any child to eat, especially one w/vomiting/health issues. She knows her body and what will feel the best inside it. All we can do is offer healthy options & trust the choices & be respectful of the choices, which can be SO hard at times when we're so worried. If you've been forcing her to eat & want to try switching it up I'd talk w/her about it & why you want to try it a different way so she doesn't get confused & rebel. Also I'd allow her to eat between meals as much as she wants even if she then isn't super hungry at meals as long as she's eating healthfully. Small frequent snacks can be easier on the digestion than a few larger meals.

Does she complain of an upset/uncomfortable belly? Or just nausea? Peppermint essential oil is great for nausea. She could just have a little bottle to sniff when she starts feeling off. There's also a homeopathic remedy called nux vomica, available in health food stores that is anti-nausea.

On the protein dilemma...

Have you tried any fermented or sprouted soy products for protein since she won't eat meat? I keep hearing those types of soy are the only ones you should even contemplate eating...

Does she drink juice? I have a protein powder that I really like that comes highly recommended by other natural food types that you could mix w/juice or probably even milk or maybe even in yogurt... It's Olympian Labs vanilla pea protein-completely allergen free http://www.amazon.com/gp/product/B002WTC5IW/ref=rcxsubs_mys2_product_title

Home made jello is pretty high protein & gentle to digest. I use unflavored knox gelatin packets w/organic juice. My faves are the fruit punch varieties and the various flavors of lemonade. There's something about pineapple juice though that doesn't let the gelatin set though so that one's out. 

Raw honey & apple cider vinegar shots can do a lot to balance & heal things too.

Have you looked into the differences between an acid vs alkaline diet? Most people are too acidic, which causes unbalance in the body. You could do a science project for several days w/ph test strips to check it out. 

Lots of ramble-y thoughts...perhaps something will jump out at you love.gif


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#7 of 7 Old 07-08-2013, 02:34 PM
 
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Just wanted to give you hugs. I know that feeling of desperation and grief. My babies are born so healthy and develop behavioral problems starting in the preschool years and continuing on from there. There are symptoms of allergy and GI issues too and I have been through the ringer trying to figure it all out. We will make a little progress here and a little progress there and then we are back at square one. I think about their sweet faces as babies that are now raging and screaming at me despite the best parenting I could possibly give and it just feels devastating. I read the studies and the diets and feel this overwhelming sense of failure as that there was something I did that made them this way, triggered the genetics, something. So we try something drastic and then hit other road blocks - they stop eating, get more sick, our budget tanks and the stress makes it all worse. I wish there were simple answers but IME its just so complicated. The inconsistency of symptoms baffles me too! 

 

DS3 vomited very frequently throughout childhood, starting at age 3. We ran the gamut of tests since ped thought it might be a neurology issue. In hindsight, it was nerves. He was diagnosed with severe social phobia and separation anxiety at age 9 after years of school issues. So looking back to early childhood when the vomiting started I was going through a divorce, started school and DS went to a home daycare. He didn't even always do it at daycare, frequently he'd wake at 2 am and puke. I am certain in retrospect that it was nerves. It stopped when I started sending him a home lunch. At the time it was motivated by me trying to keep track of what he was eating so I could try to find some pattern. Again, in retrospect I think the comfort of the lunch made by mom was enough to calm the nerves. It really didn't have to do with the food itself. Vomiting started again in Kindergarten. Again, anxiety based on a new overwhelming situation. Frequent nausea and vomiting (usually at night) continued throughout his elementary years. He missed 21 days of school in 4th grade and 99% of that was due to nausea and vomiting. We tried meds for anxiety and yet he continued to throw up. 

 

By 6th grade we pulled him from PS and started homeschooling. He doesn't throw up anymore. Like ever. Now I am not saying homeschooling is the answer - not at all - but I would take a very serious look at what is triggering her nervous response and deal with it, whatever it is. Whether that is removing the triggers, increasing her ability to cope, whatever. I think that is more important than altering her diet and will yield better long term results.

 

As for the gluten - I think a neg celiac test doesn't mean your DD wouldn't improve on a GF diet, but you have to look at overall meets her needs and yours as a family. My DS is IMO mildly gluten and dairy intolerant and it does cause him some issues. But starving himself (which he is prone to do!) has its own host of problems and forcing him to eat foods will result in vomiting. Always has. There are other dietary options. We had really good success with our whole family following a vegan plan for almost a year. We did it for DH blood pressure but noticed that DS3's behavior and tummy issues were much improved. He has the classic celiac profile of skinny legs and a bloated belly, and yet on a vegan diet this went away and he was eating plenty of wheat. He pretty much lived on vegan cereal and almond milk, pumpkin pancakes with applesauce, homemade carrot muffins, sunflower toast with earth balance butter, and pb and jelly on really nutrient dense bread. Popcorn with vegan butter too, and smoothies if I could get them in him. He rarely ate fresh fruit, never ate vegetables and wouldn't touch beans with a ten foot pole. Yet he improved (we all did!). There is not a one-size fits all approach to diet (I sorta wish there were!) but I have always liked the approach of focusing on getting nutrients *in* verses stressing about what to take *out*. So maybe just look at what she does like to eat and see if you can give it a little oomph nutritionally. Throw some flax seed meal in the pancake mix for omega-3's, that kind of thing. 


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