I have searched and searched and finally decided to post. I'm hoping someone with the experience and knowledge that I lack might be able to help me.
My daughter, 2 years and 4 months, is constantly tired. She has significant gross motor delays. She has suspected verbal apraxia, although with the help of a new supplement (nutriiveda) she has made major gains in the last 3 weeks in this area. But she still is significantly delayed verbally. She has truncal hypotonia. She had major GI issues until we got her onto the GAPS diet about 9 months ago, and that has helped. She still has a distended belly quite often. *None of her delays showed up until it was time for her to start walking...*
My son, 14 months, was developing normally, or so we thought. Now he is dropping off of gross motor milestones. *He was completely on track or early up until crawling/cruising, then it just stopped.* He doesn't stand independently. He is nowhere close to walking. His hips appear to be hypermobile. A few months ago, he could pull the upper half of his body up by himself, now he can't. He is not babbling. He has GI issues and a bad intolerance to dairy and gluten. Otherwise, he appears to be a normal baby his age.
I am coming across so many discussions of metabolic disorders, or mitochondrial disorders, and I still haven't figured out what all those mean quite yet.
What concerns me is that they BOTH have delays (though my sons' are just starting to manifest) and the delays didn't show up until 11+ months for both of them.
Does this mean anything to anyone? If you have any thoughts, advice or ideas, I would appreciate it SO MUCH.
Also, I forgot to mention that my son stopped gaining weight a couple months ago. He is still breastfed, and eats quite a good amount of healthy, substantive whole foods every day. This seems like malabsorption to me. We live overseas and the (crappy) ped we have here just told us to come back in two months and she would see if he still isn't gaining weight. Just an additional puzzle piece for me to work with.
I don't know much about mitochondrial disease, but I would definitely get a check in that department. You might also want to see genetics.They may both carry a genetic mutation/ deletion etc that would explain the issues. It is curious that they both have the same issues and they came about at the same developmental stage. I have a 2.5 year old with a genetic condition and she did not walk until 2, and she still is very clumsy. She has speech, but she is slower to expand it. Just now using 3 word phrases to communicate instead of one word and a gesture to get across her meaning. I don't know if you have access to a better doc, but I would look around. I find Children's Hospitals to have the best pediatric staff. If you can get into one of those, maybe start with genetics or endocrinology to get some deeper answers. Also can you get early intervention services? We found them helpful, and the therapists often know the good doctors too. Good luck!
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