Wednesday, January 6, 2010
6 months..appts and long long day!
Yesterday, was Jack’s BIG 6 month appt at the Down Syndrome Center here in St. Louis.
This is how our day went:
1. 1st Appt: 9:00 AM – Down Syndrome Center: http://www.stlouischildrens.org/content/medservices/DSC/default.htm
We see the social worker 1st. She makes sure we have the resources we need regarding Jack and all things Down Syndrome. I talk with her about 30-40 minutes. Then we see someone from the Down Syndrome Association here in St. Louis. She wants to be sure that we don’t need anything further from the DS Association. I told her that I would like a community group to get going in our area of town…and that’s about it.
Then we see the Geneticist, Dr. Grange and the Nurse Practitioner, Melissa. They examine Jack and ask me tons of questions about his growth and development.
Here’s the jist of that conversation:
· He’s growing well and seems to be very happy J
· He’s hitting his developmental milestones well (rolling over both ways, babbling, laughing, tracking objects, picking up objects, sleeping through the night, eating solid foods)
· Things to look forward to (sitting up, transferring objects from hand to hand)
· Mom and Dad are doing a great job!! YAY!
Items of concern:
· Jack seems to be laboring when he breathes. This is proven by the way his chest inhales as he takes a breath…there is a fancy word for this, but I can’t seem to remember it…so now they will make an appt with an ENT Physician so that we can get some chest/ lung x-rays. He has also been congested for several months, and they want the ENT Dr. to look into that further. This appt is scheduled for Feb 2nd. I will let you know those results as soon as we have them.
2. LAB WORK = PAIN FOR MOMMA AND JACK!
We had to go get lab work drawn for Jack next. We go down the hall to the lab center and wait for about 45 minutes. Jack was so cute as he waited…he played and talked…he had no clue what was about to happen to him L They took 2 vials of blood and they test for various things…make sure all of his “levels” are good and we get the results back the next day or so.
Results: blood work normal, except for his thyroid levels. This morning I found out that his level was 10.8. It is supposed to be between 0.3 and 5.5. This means that Jack has hypothyroidism. This is quite common in children who have Down Syndrome.
Medical Explanation: Hypothyroidism means your thyroid is not making enough thyroid hormone… There are 2 levels they measure: T4 (this is a prohormone..which is inactive but one step away from being a real hormone) and T3 (the actual hormone) Both T3 and T4 are secreted by the thyroid into the blood stream. T4 is converted to T3 by the thyroid, kidneys, and liver.
And it's the T3 that's so important for normal growth and development of infants and children, and normal metabolism of all ages.
So where does the Growth Hormone (GH) fit in? The GH, synthesized in the part of the brain called the pituitary, appears to be the mediator between the thyroid hormone and the individual tissues. You can also include somatomedins, a group of proteins under the control of GH, as mediators between T3 and body tissues.
Thyroid function is controlled by Thyroid Stimulating Hormone (TSH), a hormone made in the hypothalamus and pituitary. If the brain detects that T3 levels are low, more TSH is made which tells the thyroid to make more T4 and T3. If levels are too high, the brain slows down making TSH.
So, Jack’s TSH level was way too high..which means that the brain was telling the thyroid to make more T4 and T3. But since Jack’s thyroid is practically non-functioning..medication is needed to help the thyroid make more T3 and T4. 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.
So..Jack hasn’t been a “sedated” child by any means, but after starting this medication, we might see a boost in his energy level.
This also means that now me must regularly see the Endocrinologist, Dr. Hollander, every 6 months to be sure his thyroid is at a safe/ normal level.
3. Ophthalmologist - This appointment was quite painless…lots of eye tracking and eventual eye dilation. Jack’s sight is normal for right now, which is great. However, his left eye’s eyelid droops a bit. This may correct itself, but if it doesn’t he will need surgery to lift that eyelid so that it doesn’t interfere with his sight. This is completely anatomical and nothing to do with Down Syndrome.
That’s about it. It was a long, long day for both Jack and I and we were exhausted by the time it was all over. All of those appts and information were overwhelming. We got home around 3:00 and practically crashed. Jack just wanted to be held by the end of the day and wouldn’t really let me out of his sight…poor thing!
However, I did meet several other families while we were waiting at various appts and we got to go visit Michael at work. We saw 4 other families who had little girls with Down Syndrome…all of them older than Jack. It was refreshing to see them all playing together and to talk with the parents. I feel like we are part of a worldwide community and we all share in the love of these beautiful, wonderful children. And we all have to go to the same appts and most likely face some of the same obstacles, but we also share in some of the same joys and our lives have been changed forever…in a very good way..because of these little miracles! J
Posted by B. McKenzie