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This is Susanna Benningfield susanna@gsj.org San Francisco, CA USA How or why you are connected to Noonan syndrome: Our 3 year old son, Max, was diagnosed with NS one year ago, PTPN 11 positive. He didn’t gain weight as a newborn so we had a poor growth workup that was inconclusive. Max was hypotonic and had significant feeding problems. We ended up getting banked breast milk from 4 months to 22 months of age, as most other food made him sick and/or constipated. We had no idea why he had his problems for his first two years, though we saw genetics from age 2 months on. Getting the NS diagnoses was a relief for us, since we knew what to look out for and he was no longer the mystery kid. We are very fortunate that Max has had no heart problems diagnosed, and that his feeding issues have by and large slowly resolved. He takes Chinese herbs and fish oil but no prescription meds. His gross and fine motor delays have resolved. He has moved from well below the 5th %ile in Ht and Wt to now almost the 25%. His current main issue is a significant expressive speech delay. We got services provided through GGRC up to age 3 and now we are working to get an IEP trough the school district so he can get speech through the SFUSD. If you are a new family, I would say that if your experience is like ours you will find that it does get easier/better as your child gets older. Hang in there, get as much quality respite care as you can, don’t forget to take care of yourself as well as your precious baby. |