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A note for parents taking their ONH child to China

Hi all,

I've wanted to write to all of you parents who have China bound ONH kids about some important things we learned while we were there, so here goes. If your child has endocrine problems you have been in the practice of tripling cortef when the child is under stress. We gave Leaf the appropriate IM solu-cortef injection each time he went under anesthesia for his stem cells (I would advise doing this yourself so nothing gets lost in translation). However, the second most important item is thyroid level. The doctors don't tell you to give your kids extra levothyroxine during the stem cell process (and I'm not a doctor so take that into consideration) however I think it would beneficial. We all know that the brain can't develop properly with out this hormone - but what I don't think anyone has taken into consideration is that the stem cells can create a little jump in brain development. So please, don't learn the hard way like I did and be a little generous with the levothyroxine. Leaf came home taking 1.5 the dose he started on - and quite honestly I think everything would have gone much smoother if I had started giving him that amount much earlier in the process. The Chinese docs treat so many different types of physical problems with the stem cells, ALS, CP, MS, ONH and a dozen more. ONH treatments count for about 40% of their patients, but they are not ONH experts (many of you parents may feel there are not any ONH experts anywhere in the world!). However, the Chinese doctor's expertise in stem cells do help many children with ONH and more.

If your experience is anything like ours, you will see wonderful improvements not only in your hospital room, but also in every room on the floor. You are in for the ride of your life, and it isn't easy, but hang in there, I think you'll be happy you did. Oh yeah, and the people who work there at the hosptial - you'll just fall in love. They are beautiful people working very hard to make a difference in peoples lives, and they do.

Leaf enjoying a busy-box

Last day at the Xiaoshan Hospital

Judy, Catherine, Casey, Nancy, and Sophie

Linda: Leaf's physical therapist, spent many hours working with him to better walk, stand and move - as well she did many sessions of a type of acupuncture that uses electricity rather than needles

last check-up

Dr. Mike, the head doctor (and his team) holding Leaf after his final check-up.  

Leaf and Sophie really bonded - Sophie always made sure to take time with him and let him practice walking up and down the hallways.  Leaf loved Sophie playing with him and laughed hysterically; it echoed all through the corridors.