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Tuesday, November 6, 2012

Seeing Dr. Pauli in Madison

Oh my! How long it's been! Work, a teething then night-vomiting babe (then teething some more), a week of single parenting, accidentally giving my computer a nice bath... all have conspired to make blogging impossible these past few weeks. I'll start more or less where I left off last and try to catch up this week.

We went to see Dr. Pauli in Madison on October 24th. It was challenging with the two kids vying to take attention away from our conversation with him, the office was uncomfortably hot for everyone, and I could tell that those factors combined with the long morning of appointments was wearing on him. Nevertheless, he did a thorough history and then exam of Belalu, then addressed all our concerns for the future the best he could.

History: He said that her neonatal seizures (presented as apnea) were definitely related to the hypo, in spite of what the geneticist had told us. However, when they did the EEG they did not check for temporal lobe dysgenesis, so he wants them to go back and check to see if there is, since in most cases he's seen there has been. Conversely, the cardiologist has been keeping an eye on her for a couple of different things, and he said that he did not believe those to be related to the hypo. I mentioned that at my 17-week ultrasound they noticed that her legs were short, and he said that that would be unusual since the hypo does not usually manifest itself that early.

Currently: Belalu is doing really well. He said she was extremely advanced in speech, and she's doing well walking. He noticed a slight bowing to her lower left leg, but nothing to be concerned about at this time. It's possible it will straighten itself out (though it's also possible it could worsen). Although she cannot straighten her arms fully, and never will be able to, he said even more important for her independence and reaching was the rotation of her wrists, which looked fine. Her ears were "near perfect" and while he still recommends a hearing test to be sure, her advanced speech and ear structure gave him no concerns for now.

In the future: Since she's been off her seizure medication since last fall, we hope she is in the clear, but there is no guarantee. So, when she's sick we should try to keep any fevers down because they could potentially percipitate seizures. We'll have to watch her legs for bowing and be sure to measure her head at each appointment to watch for hydrocephalus, because it could sneak up on us at any time. He said she shows no signs of curvature in her spine. We'll have to watch for learning disabilities when she reaches school-age, but he assured us that beyond that, once she reaches school age, most of her health concerns, if she has any, will have already manifested themselves.

It was a very reassuring appointment. Unless anything appears suddenly, we won't have to return for another year. He also told us the endocrinologist, orthopedic specialist, and the bi-weekly Birth to Three visits were all optional. So, we canceled the first two that we were going to see on Friday and tomorrow the Birth to Three group comes by again, so we'll see what they decide. They had already implied at the last appointment that they, too, didn't think they needed to see Belalu as frequently as they have been.

Tomorrow I'll post about our gathering with three other hypo families in Madison.

4 comments:

  1. I think you did well canceling the ortho - Dr Pauli will know more of HCH ortho than your average ortho guy...
    You cancelled endo as you have no interest in GH treatment anyhow, why waste your time.
    I would try and keep the spot in the birth to 3 even if it's less frequent, that's what I am doing for Fi. I don't know what it's like where you live, but here once you are out of their books, who can hardly get back in... And while they mightn't need PT, they may need speech and OT over the next few years...

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    1. Thanks for the tips- for Birth to Three they were just talking about reducing the frequency of the visits, since they now see her every other week. It is a nice incentive to keep the house clean, though :)

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    2. OMG, they come to your house???? Keep them... Wow... I have to drive her to 2 different places for PT and speech...

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  2. I am so happy you saw Dr. Pauli and he had positive things to say about Belalu. It's so great when we get to take our kids to real experts! Xoxo

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