"Hi Amrit and Connie. My son has deletion 48-52 and need 53 skipped also. We live in Brasil and he was diagnosed when he was 3yr old. Since than he has received all the available treatment like physiotherapy, hydrotherapy, and…"
"I was in your shoes 10 years ago. IEPs are hard work, no test will give you more than a glimpse in time at best.
Took him 5 years to shake the 'mild mental retardation' label, the result of a similar test.
But my son is now pulling Bs in…"
"Hi My son has also been struggling in school and testing provided by district has not shown anything significant. When I was in CCHMC a few weeks ago they suggested a Developmental Pediatrician. So that is where we are headed. And…"
Hi,my son is about 6 years.He is on the waiting list for this trial.we are from London ON where the ACE 031 is being conducted.I called my son's neurologist who is also running the trial here,and he told me that my son is supposed to enter the trial on June.I had the impression that they will go on with this trial.Moreover,It seems that this drug is working.Anyway,I am going now to get more news and if you like I can provide you with the updates.
My son uses:DFZ,ECGC,LOSARTAN (ON MY OWN),Vit D,fish oil,multivit,Coq10,Taurine(aminoacid),Calcium.
I highly recommend Losartan,and I bet that it might stop fibrosis+reduce the side effects of DFZ.
I do everything I can do then rely on God because doctors and medicine are just causes in any treatment,but God is the CAUSATIVE to this treatment because he is the omnipotent and merciful.