What a little extra thyroid medicine will do!

Olivia gets her bad reading habits from me.
Surround yourself with lots of books and read them all as your  mood  dictates!
There is no such thing as too many books!

As I have mentioned before, Olivia was diagnosed with hypothyroidism at 4 months of age and has been taking medicine ever since. Hypothyroidism affects 80% of people with Down syndrome before they reach adulthood.  It is a major contributor to low cognitive function if left untreated, and also causes kids to be smaller and have less strength and endurance.  If treated appropriately, all is well!  Lucky for us, our first pediatrician knew to keep an eye out for hypothyroidism, and when she saw the warning signs at 4 months old, she ordered blood work to check. Some pediatricians might have waited until the standard yearly check.  It is not prudent to do this!  If they see symptoms, they should check right away.  The cognitive and physical development of the child is at stake! Too much to risk to just wait!

Olivia's latest thyroid blood test showed "normal" TSH and T4.  However she was symptomatic.  She was falling asleep by 9 am and then again by 3 pm.  She fell asleep quickly for nap and bedtime, but her sleep was fitful.  Olivia's gross motor development was struggling as she just did not have the strength that she needed.  Luckily, our new endocrinologist noted that her TSH and T4 were just barely normal and that Olivia was very symptomatic.  She took one look at all the facts and told us that we needed to increase Olivia's dosage. She explained that they don't like the numbers on the edge of normal, as that is not good enough to help developing children.

Olivia has been on the new dosage for about 10 days, and Wow! what a difference!  She can stay awake! She takes a little longer to settle down to sleep. Her sleep is more restful.  She started pulling up to kneeling at the sofa, exercise bar, and shelf, without any help whatsoever from us.  She finally got the "supported pull up to sitting from side lying"!  That one is a big deal!!!!! I have been working with her on that one since January! And she just could not put it all together, because of strength and because she insisted on back arching, and because she just thought it to be a ridiculous idea, because she was able to pull up to sitting by pulling up with both hands, so why am I asking so much of her and wanting her to do this trick.  But now she can do it and she loves doing it!  These two developments took place in the past two days! She is also saying Mama!  Glory Be! And she was saying DaDa a bit just this late afternoon. I also caught her saying Ball, just as plain as day!  In the past few weeks, she had quit talking (almost) and was only signing.  Oh! And the stuff she is learning these days!  It is like an explosion of sheer genius!  Ok... I exaggerate a bit!  But you get the idea! She is amazing us these days in comparison to what had been going on prior to the increase in her thyroid medicine.  Oh, yes! And she is now a pro at getting in and out of sitting for the past week. Add that to her crawling and she can now play happily by herself for as long as a half hour!  She is so neat to watch play! She is so inventive and such the scientist!  And after 18 months of being so incredibly hands on with Olivia all the time, it is so nice to sit back on the sofa and watch! (and drink a cup of tea that is still warm and look at an entire Michael Olaf catalogue in one sitting!)  Oh! And with the increased strength, she can really get some air on that spoon when she throws it!  :-)

Endocrinologist appointment

After having Olivia'a blood tests performed nearly a month ago, we finally got in to see the endocrinologist today. The pediatrician's office had told us her numbers were normal. Well, they were just barely normal!  Her symptoms were in fact because she needed a boost in her thyroid medication for hypothyroidism.  She has been so very tired lately. Less and less endurance everyday. Constipation. Tummy aches resulting in disturbed sleep and fussiness.  And I imagine that being tired all the time made her fussy too.  We were so relieved that all of her symptoms can be explained by hypothyroidism that needs a medication adjustment.  Hypothyroidism hit Olivia at 4 months of age and will hit 80% of persons with Ds by adulthood.  Untreated hypothyroidism is a major contributor to mental retardation.  We have not noted less intelligence in Olivia than we would expect. But she has become increasingly unmotivated to do "harder work"  that I know she is capable of when she has the energy to concentrate.  I think that this uncontrolled hypothyroidism is why she has been crying at the drop of a hat. She is just always tired.  And sometimes when we adults are tired/ exhausted we just want to cry, too!  Hopefully we get our Olivia feeling better soon. Bad news is that she needs blood work in 4 weeks, then 3 months, then 3 months later.  No fun!

Well baby- 6 month

Olivia had her 6 month well baby pediatrician visit today. She is indeed a well baby! Praise God! She is still a healthy baby with Down syndrome! She got one shot. We will see how she does with that. Right now, she finally settled down for a nap.

The official weigh in results:

Weight: 15 lbs 8 oz

Length: 24 1/2 inches

Head Circumference: 16 1/4 inches

This means she is:

40 % for Weight

11 % for length

17 % for head circumference

We are going to retest her thyroid numbers to be on the safe side. She has been sleeping 15 hours total a day. That is good. But then again it could be cause for alarm. So, it is better to be safe than sorry.

Olivia did very well at the doctor. No crying through the exam, nor any crying with the shot. She just focused her eyes on Mommy, and somehow we made it through without a tear. Praise God! Mommy and Daddy get so nervous at these appointments. We do our best not to let Olivia see our anxiousness. I think we do pretty well. We were more relaxed at this appointment than at the last. We just love her so very much!

Thursday it will be Olivia's 6 month birthday! 6 months ago our life changed! It changed in unexpected and marvelous ways! No one could have prepared us for the Ups and Downs of being Olivia's parents! We have been so blessed and feel God's grace has made this all possible. Without the grace of God, things would never be going as well as they are, and we would have never made it through the tough times. There will surely be more tough times as we parent Olivia, and God will be there at those times, too. God is good and merciful and almighty!

Lots of Smiles

Lately Olivia has taken to smiling! Seems to be her favorite thing to do. The next favorite thing is laughing. It is so wonderful to see this!!!! The first three months of her life there was really no social interactions. Then at 3 months the smiles started. But they were small and few and far between. Things have really changed for the better! It is great!

The pediatric endocrinologist called to say that Olivia's thyroid numbers look good and to continue at the same dose of medicine. Recheck will be in January. At this time we will head back up to see the doctor. I guess Olivia's sleepiness and low endurance are more of a Down syndrome thing than a thyroid thing at this point. I hear that babies with Ds tend to be more sleepy, but then look out! They can be typical toddlers who would rather not take a nap. Sounds like fun! :-)

At the Lake and Ds Walk update

Wanting to enjoy the last beautiful days before Fall and Winter are upon us, we headed up to the Lake to see Uncle Dick, Sr Veronica, and Y (and we saw the nice neighbor, too!)

It was a bit windy and cool, so Olivia basically just sat, cuddled and then slept. She interacted a bit. But was mostly just a bit overwhelmed by the breeze and the hat she was wearing. It was wonderful to show Sr Veronica how much Olivia has changed since the Reunion in July.

Team Olivia is gearing up for Saturday's Down syndrome Walk. Thanks to so many generous people!

Daddy will be babysitting for Olivia, who is on doctor's orders to stay out of crowds this cold and flu season. Preemie, low birth weight on top of Ds puts her at greater risk for being hospitalized as the result of a simple cold that gets out of hand. Our goal is NO illness this Winter. But we know that may not happen despite our best efforts. Should we end up in the hospital with Olivia, the Good Lord will strengthen us as He did the weeks we were in the NICU.

Our Training Buddies for the Ds Walk are:

Mommy

Grandma B

Uncle Doug

Aunt Cindy

Cousin and godfather, Eddie

Cousin and all around great guy! Stephen

Great Aunt Jo

... and anyone else who cares to join in on the fun!

Olivia continues to take her hypothyroid medicine every morning. We see some improvements in her, but we are suspecting that her TSH and T4 are not yet normal. These will be retested in October. The other test in October is another hearing test. She passed her newborn test, but will have a hearing test every 6 months until the age of 3 per Ds Medical guidelines

4 months old video

I have made a new video of O to show you what she is doing these days. Since on the hypothyroidism medicine we are seeing great improvements from where we had been the last month. She is stronger, can stay awake longer, happier and more alert. She is making great progress in head and neck control. She should get there by the average month for Ds for this milestone of 4 to 5 months. She is doing better in a supported seated position and is more attentive during story time. O is interacting better with her environment She is watching her rattles and moving them more purposefully. And so much more! Thank the good Lord we found this thyroid issue so early! It makes all the difference!

Medicine going well

Giving the medicine is going well. This special medicine bottle makes it very easy.

We think O is already perkier. All in all, we are pleased thus far with how treatment for her hypothyroidism is going.

Thyroid update- change of plans

We received a phone call yesterday that changed our plan of attack for treating O's hypothyroidism. The pediatric endocrinologist at Devos Children's Hospital wanted to see her today! This doctor has a special interest in hypothyroidism and has many patients with Down syndrome.

Through God's grace, O handled the car ride wonderfully. She usually does horribly in the car. Praise God!
We hit the road at 8 am and were home by 1 pm. A whirlwind trip!

The pediatric endocrinologist confirmed what was suspected, that O has hypothyroidism. He doesn't think it was congenital, but the bloodwork from the NICU is somewhat inconclusive on that point. We will start the medication tomorrow and follow up with bloodwork in 1 mos. Sounds like we can begin to see somethings, such as the overwhelming fatigue, improve in as little as 2-5 days. He will continue to be O's endocrinologist for the time being. We will go back to see him in 4 months.

The doctor was great. Even though they were squeezing us in, he and the senior resident took tons of time to review all the records, etc. and to do a thorough physical exam. They were great at educating us and answering all our questions and concerns. While the diagnosis and treatment plan did not change (we didn't expect it to), we were comforted knowing that everything was carefully considered and that a quick diagnosis wasn't made based on only a brief phone consult with an endocrinologist and some lab results. It gives us far more confidence that we doing the right thing for O. Our pediatrician handled this so very well! She said the right thing, apparently, to get O into see the specialist so incredibly quickly!

Thyroid problems effect about 50% of all people with Down syndrome before they reach the age of 20. Very common. Treatment typically goes very well.
We are blessed to have found it early before it would have much time to slow her cognitive development.

The doctor said that pediatricians cringe when someone says that they have a good baby who seldom cries. He says that usually indicates an unhealthy baby. O has gone from being a colicky baby to being a good baby who seldom cries. Not a good sign. So, we may hear more crying from our healthy baby soon! And she should sleep less than she has been sleeping. It will be interesting! :-)

Thyroid update

Just spoke with O's pediatrician, who managed to consult with one of the pediatric endocrinologist from the hospital where O was born. He agreed that it appears to be hypothyroidism and instructed her on what dosage of medication to start and when to repeat the labs. So, we should be able to get the med tomorrow and start it Thursday AM. While it was a challenge to wrestle it to a conclusion, we now have a treatment plan to start working on. Thank God!

Why O is so tired...

(By the way... the cute onesie... by Under the Nile Organics... is from Uncle Jon and Aunt Chris....Thanks... O wears it all the time!!!)

We now know what is making O have such low endurance. Yesterday, the blood test results came back showing that it appears as if she has hypothyroidism, which tends to be very common in people with Down syndrome. Although for typical people, hypothyroidism tends to strike in middle age or older, in people with Ds, it is not uncommon for them to acquire it as babies or children. O's TSH was normal in the hospital. Her newborn screening was off, but the recheck before she was released was just fine. We had been noticing some symptoms (cold hands and feet and tiredness) and so had the doctor check her thyroid numbers early. Usually they check it once a year. We will be taking O to see an endocrinologist as soon as they can get us in. Hopefully it is really soon! We will surely try to get the earliest appointment available.

Here is what Peter found last night on the internet when he was doing some research on infant hypothyroidism:

This sounds an awful lot like O:

1. "Infants with hypothyroidism may appear sleepy all of the time and have trouble taking the breast or bottle. They may be constipated or have gas as well as poor growth patterns. At birth, they may experience jaundice longer than other infants. Also, they may be quieter than other babies and seldom cry. In addition to a general disinterest in their environment, these babies may feel floppy when picked up and have poor circulation."

Sounds like the med will be in pill form which can either be given to them or crushed and administered in a dropper. Our experience with our cats may come in handy :-)