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.