Tuesday, January 5, 2010

John - Before & After GAMT diagnosis

1 comment:

  1. Hi. My almost 15 month old daughter sounds a lot like your son. She still cannot sit up on her own (except she can do the tripod sit). She isn't really talking, even no ma or da sounds. We have had 2 CT Scans for other reasons, and we have been taking her to physical therapy for about 5 months. She is progressing, but very slowly. She seems rather strong but lacks control and coordination. I am getting frustrated and irritated by the slowness of our health team. It took our assertiveness and our questions to even get appointments scheduled with a neurologist (we saw a neurosurgeon to rule out hydrocephelus) and an appt. with a geneticist. It will be about 4 months until we can see the genetist and about 2 months until the neurologist. I am hopeful nothing is wrong, but realistically something has got to be. It is just not right that she is lagging behind and making such slow progress. Like you, I had my suspicions when she was 6 months old but was told that as long as she is progressing not to worry. At 9 months, the doc advised us to have her evaluated by an occupational therapist and have the first CT scan done. I am encouraged by your story that there may be something we can do that will allow her to quickly speed up her development. I am just worried that it is taking too long to reach a diagnosis.