We came home from the hosital and within a few days I had tried again to introduce formula in addition to breast milk. It did not go well. At the time I figured she just didn't like the taste. I nursed and nursed. She seemed permanently attached. One evening my mom said there was no way I had any milk left. She tried the formula too. Again it did not go well. She just cried and fussed. Mom said she thought she acted like her belly was hurting. Assuming colic we tried all the colic remedies. It never seemed to subside. Next doctor apt discussed with the doctor this constant upset stomach. He put her on Zantac for babies. It seemed to help some but she was always still so irrational. I resigned to nursing her only because that was when she did the best.
She grew fast. Soaring into the 90% for growth and weight. Started foods early too. She ate like a pig! We commented often how she ate more than her older brother. With foods came more irrational behavior.
There's crying and then there's CRYING. This child would scream like someone was killing her. I remember over the summer my husband was terrified someone would hear her screaming like that and assume we were hurting her!
We were in the doc office when she was about 10 months old for my Son having ADHD diagnosed. She was flipping around between my husband and I. Crying, fussing, crying fussing. Up, down, up, down. I remember my doc turned to us and said that its not unusual for one child diagnosed ADHD for the siblings to be as well that it tended to be genetic. He said he sympathized with us because he understood how difficult children with ADHD can be (while looking at my daughter - not my son!!) I asked how young they can be before a diagnosis can be made. He said not until their school age but usually by then the parents have known for quite awhile. He told us "we'll revisit her when she's in kindergarden".
Just before a year old we tried regular milk and again it didn't go well. In fact it went awful. She had always had loose bowl movements but that was because she was nursed I was told. So when we gave her regular milk it went from bad to worse. And the irrational screaming just intensified.
Doc said to exclude milk for the time being from her diet. So we eliminated everything that had milk as an ingrediant.
Next apt I brought up that she was still not having solid bowl movements. No longer nursing and off all milk I figured things would firm up. He said it was probably because she was still using a diaper and not to think much of it. I also brought up that she had this outrageous temper. She could just scream forever, not cry scream. We put her down for a nap one afternoon and timed her. 45 minutes of screaming. I insisted, seriously, that is NOT normal. He revisited the ADHD concerns again and again reminded me we can't make any diagnosis or medicate until she was in school. He said I had his sympathies.
I went home and decided to start potty training. She caught on to everything quickly. So I figured we could work on this too. She was almost 18 months old at this point. A little early...But I had to try. So we started and she caught on to pee in the potty really quick. The rest...not so much.
At her 18 month apt I told the doc we were potty training & it was going really well. Except # 2. He went on that it was still really early. I agreed. But I revisited the dirreah. I told him she was so spastic with her bowl movements that she didn't have a chance. I told him too that it was no longer just because she wore a diaper because I'd taken it off and she was in training panties and things were extrememly runny. I said we have dirreah, extremely irrational behavior which I thought was from a stomach ache because of the dirreah. I think this is an allergy of some sort. I've eliminated milk. But the allergy test for milk has came back negative. So he ordered some testing. A series of blood and fecal tests. Then we wait.
Negative. Everything was negative.
I'd heard him mention celiac but didn't know what it was. I had a friend who had gluten sensitivity and I'd started looking into it to learn more. I noticed a lot of similar symptoms between my daughter and gluten allergy. I felt like a detective and that I was on to something finally! Then realized it was Celiac and deflated just as fast. The test for that was Negative. But the symptoms were too spot on for me to give up. There had to be something to this. So I pressed on and read that many Celiac tests are negative incorrectly. I pressed the doc about this & he sent us to a child gastro specialist.
The gastro specialist was a waste to say the least. He told me first words was there was no such thing as gluten sensitivity you either have celiac or you don't and she does not the test was negative. He sent us home with a high fat diet to eliminate her dirreah. Butter, mayo, pasta, peanut butter & hot dogs. Yes hot dogs. A doctor actually prescribed I feed that unhealthy fat log to my 2 year old to make her healthy. Really?? I thought he was nuts and told my pediatrician as much on the fallow up 2 weeks later. By this time I was pretty hung on gluten as an issue. We'd slowly removed it from the diet prior to the gastro doc apt and seen improvement. Then watched it all come flooding back when I allowed her to have pasta & pb sandwiches for luch daily for a week. At that point the whole family was sold. The screaming came back with a vengence and everyone begged me to stop.
Our two week fallow up back at the pediatrician I told him how I felt about what the specialist had said, how the experimental diet worked out, and that I wanted to try a gluten free diet. At that point he admitted Celiac has a lot of false negatives. He also said that not much is known about it right now and that he thinks in 10 years we'll see better testing and diagnosis results. He set us up with a nutritionist to get guidance on the diet.
We started the diet and haven't looked back. Almost immediatly the dirreah went away. Within 2 weeks she was using the potty on her own without issue. She was on silk soy milk for about 8 months and then we transitioned onto regular milk with no problems. She began sleeping at night and actually sleeping. She could use a pillow and actually wake up in the same position in bed without having thrashed around all night. She settled into a normal wake & sleep pattern with a normal daily nap. The baby zantac went away. The screaming decreased daily over a few weeks. She also started eating a normal amount for her age...and stayed satisfied! The rash she'd had on her thighs butt and back cleared up. The eczema she had on her hands, feet and calves cleared up.
Is she a perfectly behaved angel now? LOL no. But her tantrums are within a "normal" range (if there is one.) She's still high maintence compared to my other kids. I agree with Doc...we'll probably still be visiting ADHD once she's in school. If you rated high maintence on a scale of 1-10, before she was about a 20. Now she's about 8 at her worst. (Whereas my others are about a 2 or 3.)
Overall I've been shocked as to how much wheat is in EVERYTHING out there. I can't even remember all the stuff that I was suprised to find it in. I remember getting sausage patties from walmart then reading the package and just totally shocked that sausage had wheat in it. I learned quickly I had to read labels on everything. I called company after company when gluten ingrediants werent listed on the label to verify the item was gluten free or not. It was a learning curve for sure. I learned also that just because it does not say "gluten free" on the label that it can be and you don't have to just search for the advertised label. Aldi makes things really easy & inexpensive! Everything is labeled there so its really easy to tell. In addition their starting to carry gluten free pancakes, waffles and baking mix.
I look forward to what the next few years will bring in research & to the market. I don't agree with this as a fad diet at all. But if anything is to be gained by it in terms of availibility of food items (at lesser prices!) that taste better....then well that would be a good thing. After diving into this with her its made us take a look around and see food differently. What if we'd continued to feed this to her? What damage to her system would this have done? I'm sure prolonged exposure to this would have done damage to her stomach or intestines of some sort. I'm really curious what new research will show in 10 years from now.
