Malhotra

We saw Dr. Malhotra today. Wyatt is 25lb 10.1oz. That puts him in the 45th percentile for weight. He is 65th percentile for height at 33" (yes, he's finally grown ha ha.) His head is more like 90th. Dr. Malhotra is not concerned about his head circumference. He had a lot of catch-up growth and now is growing at normal curve.

He did another exam and says that Wyatt's reflexes have returned to their prior state. I asked if that meant "normal" and he said no, but not pathological. They are brisk. He doesn't know why the last exam showed decreased reflexes and hypotonia. (Rus of course, felt that was wrong last time and was because of his vaccinations. He is probably right.)

Malhotra mentioned CGH, which made me want to scream at first as we have already been down this road with Dr. Baker, the geneticist. He said that the q22 testing Wyatt had in NICU looks at 95% of chromosome 22 deletions. There is the other 5% that would not have been picked up. He kept referring to "catch-all q22 syndromes." I asked what syndromes he was talking about. Things like DiGeorge. He said if we wanted to we could have CGH and that would tell us about that other 5% and since there is likely material left over from the CVS we could test this pregnancy.

I asked why this baby would have the same deletion, since these are not hereditary. He said that in 5% - 33% of repeated pregnancies spontaneous deletions can reoccur. I asked if these deletions were associated with IVF/ICSI. He asked if that had ever been discussed with us. I admitted it had not. He talked about there being a three fold increase across the spectrum, but not in these specific syndromes. None of this is statistically significant, but he has seen enough in his practice to believe it is true. It makes me really angry to think no one discussed this with us at the get-go. I am not sure it would have made a difference in our decision to proceed with IVF, but I probably would have refused the ICSI procedure as it wasn't really necessary in our case, just standard clinic practice.

So the next question - what are the manifestations of these syndromes and what would be relevant to this pregnancy? (And really what would we do about it anyway?)

These syndromes have cleft palate and VSD, tone issues and learning disabilities in some cases. I asked about mental retardation and he said that would be very, very rare. He said typically these children develop a bit more slowly, but they catch up. I asked why the PVL doesn't explain the tone issues. He said it might. I asked what would be relevant now to be medically treatable. Why wouldn't we just wait until he is in school and find out he has a learning disability (typcially these are around language and reading) He said there is nothing to be done medically now. We could of course wait until school at which point he would recommend psychosocial testing (In the back of mind I was thinking Lord help me if we are still seeing him when Wyatt hits school.), if there is even a learning disability, which is not a foregone conclusion.

So after all this I still wasn't sure what he was telling us to do. He said he recommends we do nothing but the urine testing for MPS he requested at the last visit. (He doesn't really think Wyatt has MPS by the way.) We should just leave him be. He thinks Wyatt will be fine. In terms of walking, there is no doubt he will walk, he would guess in two more months. It's a matter of balance and confidence. He wouldn't even recommend physical therapy. CGH is only really if we want to know definitively and want some prediction of the future.

I feel a lot better, yet I am also highly annoyed. I hate having the same damn discussions over and over. I almost asked to be referred to Dr. Bloomberg, the other geneticist as I hate Baker so much, but we don't want to pursue genetic testing so it doesn't matter. Dr. Malhotra seemed very upbeat. Maybe he always has been, but I have been too scared to notice.

We got Wyatt setup for the urine collection. Basically a little plastic baggy went over his penis and stuck around his balls. I am glad the nurse did it as I would have tried to stuff his balls in the hole so the tape wouldn't stick to them. Ouch! There was nothing in there at the end of the visit, so we came home with it and will have to bring the bag back.

The only other thing I wanted to say is two months seems like an eternity for walking. What do we do about day care? I cry at least once a week dropping him off to the infant room. Max is still there, but it makes me so sad. Two moms have asked me his age this past week. I felt like the implication was "Geez, your kid is big to be in this room!" I just wonder if Wyatt gets anything out of being in day care. We put him there to use up our dependent care money and give Rus a break, but mostly for Wyatt to socialize. How much of that is he getting?

When we picked him up yesterday he was in the "bye bye buggy" with some of the older kids. So I guess they are making some kind of effort to get him in contact with the older kids.

I just don't understand why everything has to be so hard.