We went to the neurologist appointment, and he began with "We usually don't give children this young medication, we usually try therapy first." He asked me to tell him what's been going on and why I brought him back in early.
I told him he has much higher tone that last few weeks. The peditrician agreed that he's in pain and uncomfortable, and so did his therapist. We are moving him to twice a week therapy for OT, and also adding once a week PT. He hardly naps (only 30 min cat naps at a time because of the pain), wakes up grumpy. He cries alot. Struggles with his bottles every day. He's barely maintaining his growth curve, and the peditrician and therapist thought some medication would help him gain weight. He's always uncomfortable, he has trouble eating and gets lots of bubbles, had trouble burping. He arches at times and it looks like he will touch his toes to his head. He sleeps at night pretty well, because of the no sleep during the day. We hardly see any smiles, when he tries to hold the bottle he ends up pushing it away, and same thing with playing with toys. He watched me feed him a bottle which he did pretty good about.
After he finished and he woke up a bit, he examined him, and after he picked him up with his arms he still held his arms by his chest as he was supporting all his weight. After one look he said I think we do need some medication. He also check some reflexes. And then told me about the medication, it will make him sleepy, but that effect seems to wear off after time, but we don't want him sleeping too much, we will start with a low dose, but will up it over time as needed by his tone, there's no one correct dose for everyone, it's whatever corrects the problem without too many side effects. We will start out with a dose of .5 ml once a day and then increase as needed. The prescription will be for 1 ml 3 x a day, but we don't want to give that much right away.
We took the prescription to the pharmacy and they had to order the medication in a liquid form as they usually don't carry it in liquid form. The medication is Diazepam ie valium. We should have it tomorrow.
Many of my friends ask how I am doing: I was both relieved that we could get the medication because I knew he needed it and I don't want him to be in pain anymore, and that it would help, but at the same time I wanted to cry because my perfect baby needed medication to make his life comfortable.
2 months ago