IEP and TSH
Jan. 30th, 2008 06:45 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
lollardfishWe've lived a charmed life. Nico's only medical concern has been his hearing, and it was obvious that he could hear, so the question was merely one of degree. In fact, he passed a behavioral hearing test the other day, so even that wasn't a concern. As of 8:00 last night, we have a new concern - hypothyroidism. More on that in a minute.
We also spoke to all but one of his therapists yesterday and developed our next 6-month plan.
At 8 AM everyone showed up at our house and we had a conference with our coordinator and the therapists who could make it. My goal was simple - go from Occupational Therapy (fine motor) and Developmental Therapy (everything) once-a-week, to OT, DT, PT (gross motor), and Speech Therapy once-a-week. Shannon and I have organized our lives so one of us is always home with the boy. It puts us in a great position to work intensively with him and the therapists for this critical stage of his development. The world is opening up to my son - he can crawl, make all kinds of sounds, feed himself, use "tools," and process more and more complex information. We want to make this period of development as productive as possible.
Therapy not only lets the professional work with Nico, but they also work with us. We then try to integrate his therapies into his daily life and play, and it's fun. Periodically they come up with concrete great ideas that have a real impact. For example, the speech therapist recommended taking our camera and taking pictures of the most important things in Nico's life - his mom, dad, bottle, crib, favorite toys, high-chair, and so forth. Then we print them and use them as pictograms to aid in communication. I'm excited to try this, as real speech and signing are going to be real challenges, but he's already trying so hard to communicate.
Basically, our son has a host of relatively minor delays. His torso is a little weak. His expressive speech is significantly behind (what this means right now is that he's not imitating our sounds, not that he's not talking. When we say "ba-ba-ba-ba-ba" he ought to try to say it back, at least some of the time. He mostly doesn't). We're going to get our four therapy visits a week, and I'm excited about it.
Then last night his pediatrician called to tell me that Nico's T4 levels were normal but his TSH level was slightly elevated above normal, which probably indicates hypothyroidism. This article can tell you all about it as it occurs in people with Downs. It may not really be a big deal, although it would have been in another era. I often think about Nico born in another time and place, and think that he's the rare child with Trisomy-21 who probably would have survived. He's so strong, healthy, good at eating - but now here's something that would have proved a big problem in the era before synthetic Thyrozine. We were warned, by our earlier pediatrician, that everyone with Tri-21 eventually loses normal thyroid function, but that it could be year 2 or year 52. We were hoping for the latter, but it looks like it's upon us now.
So we'll make an appt. with a pediatric endochrinologist, we'll get him re-tested, we'll either start him on the meds now or wait and see what happens when he gets re-tested (since his TSH is so close to normal). I'm a little upset, not because it's serious (it is serious, but easily fixable. Shannon has a good friend who just takes a pill everyday and otherwise has no particular consequences of having a bad thyroid), but because we've avoided any medical problems so far and I had taken comfort in that.
And then there's the potential for comedy. The article says, "Treatment is the replacement of thyroid hormone with synthetic thyroxine. The dose is managed by watching sequential blood tests to see how the thyroid responds. Treatment is usually needed for life. It should be noted that if the parents have become used to a calm, sedate child who is hypothyroid, the replacement will look as if the child has suddenly become hyperactive, when in fact the child is returning to his or her "natural" state." OUR CHILD IS NOT CALM OR SEDATE. He's playful, bouncy, and silly. If he gets more active ... we may never sleep again!
I am frequently thankful for modern medicine. I like my son. I'm glad we get to keep him and see him grow.
We also spoke to all but one of his therapists yesterday and developed our next 6-month plan.
At 8 AM everyone showed up at our house and we had a conference with our coordinator and the therapists who could make it. My goal was simple - go from Occupational Therapy (fine motor) and Developmental Therapy (everything) once-a-week, to OT, DT, PT (gross motor), and Speech Therapy once-a-week. Shannon and I have organized our lives so one of us is always home with the boy. It puts us in a great position to work intensively with him and the therapists for this critical stage of his development. The world is opening up to my son - he can crawl, make all kinds of sounds, feed himself, use "tools," and process more and more complex information. We want to make this period of development as productive as possible.
Therapy not only lets the professional work with Nico, but they also work with us. We then try to integrate his therapies into his daily life and play, and it's fun. Periodically they come up with concrete great ideas that have a real impact. For example, the speech therapist recommended taking our camera and taking pictures of the most important things in Nico's life - his mom, dad, bottle, crib, favorite toys, high-chair, and so forth. Then we print them and use them as pictograms to aid in communication. I'm excited to try this, as real speech and signing are going to be real challenges, but he's already trying so hard to communicate.
Basically, our son has a host of relatively minor delays. His torso is a little weak. His expressive speech is significantly behind (what this means right now is that he's not imitating our sounds, not that he's not talking. When we say "ba-ba-ba-ba-ba" he ought to try to say it back, at least some of the time. He mostly doesn't). We're going to get our four therapy visits a week, and I'm excited about it.
Then last night his pediatrician called to tell me that Nico's T4 levels were normal but his TSH level was slightly elevated above normal, which probably indicates hypothyroidism. This article can tell you all about it as it occurs in people with Downs. It may not really be a big deal, although it would have been in another era. I often think about Nico born in another time and place, and think that he's the rare child with Trisomy-21 who probably would have survived. He's so strong, healthy, good at eating - but now here's something that would have proved a big problem in the era before synthetic Thyrozine. We were warned, by our earlier pediatrician, that everyone with Tri-21 eventually loses normal thyroid function, but that it could be year 2 or year 52. We were hoping for the latter, but it looks like it's upon us now.
So we'll make an appt. with a pediatric endochrinologist, we'll get him re-tested, we'll either start him on the meds now or wait and see what happens when he gets re-tested (since his TSH is so close to normal). I'm a little upset, not because it's serious (it is serious, but easily fixable. Shannon has a good friend who just takes a pill everyday and otherwise has no particular consequences of having a bad thyroid), but because we've avoided any medical problems so far and I had taken comfort in that.
And then there's the potential for comedy. The article says, "Treatment is the replacement of thyroid hormone with synthetic thyroxine. The dose is managed by watching sequential blood tests to see how the thyroid responds. Treatment is usually needed for life. It should be noted that if the parents have become used to a calm, sedate child who is hypothyroid, the replacement will look as if the child has suddenly become hyperactive, when in fact the child is returning to his or her "natural" state." OUR CHILD IS NOT CALM OR SEDATE. He's playful, bouncy, and silly. If he gets more active ... we may never sleep again!
I am frequently thankful for modern medicine. I like my son. I'm glad we get to keep him and see him grow.
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no subject
Date: 2008-01-31 01:50 am (UTC)By the way, you guys are awesome parents!
no subject
Date: 2008-01-31 01:51 am (UTC)