Children's Check-Up

Thumbs up for a good check-up!

Ella had her four month check-up at Boston Children's hospital last Friday. This visit marks 18 months since we switched to Dr. Holm. We have made a lot of adjustments on medications and doses and we are finally seeing the benefits of those changes. Dr. Holm has been very deliberate and diligent with Ella's medication. When we first met with her in January 2012, she explained to us how small changes can make a big difference. We have seen the results of rapid medication changes to her health. It is not good. At times it seems like we have been on a slow pace and little change, TIME to adjust to the proper dose has proven to be the most effective approach.

We were excited to learn that for the first time, Ella's levels are perfectly normal. Her T4 and TSH (both thyroid hormone) as well as her growth factor all register right in the middle of the normal range. She gained 4lbs and grew more than an inch since January. So as we approach her 4th birthday she is 34 lbs and 36 inches and finally wearing 4T clothes. This would certainly explain her recent need for a whole new wardrobe!

Ella is still on a pretty high dose of growth hormone, but the plan is to let her continue to grow into this dose. She is responding very well and catching up. She jumped from the 11% on the growth charts to the 18%....all of this since January! When Ella was first diagnosed with hypopituitarism, she was not on the growth chart. That initial diagnosis also came with disheartening news at the time that there was "nothing we could do" to help her grow and that growth hormone "probably wouldn't help" (quotes from our endocrinologist at the time). It is gratifying to know that sticking with my intuition and remaining dedicated to finding help for Ella has paid off.

We return to Dr. Holm in September. We will have her annual bone age x-ray and a complete lab work up. If all goes well, we may be able to bump her visits to every 6 months!

The Highs and Lows...

The first blog I ever wrote was titled The Ride of Our Lives. It was very clear, very early on in Ella's life that she was going to keep us on our toes. I am happy (and I admit, a little frustrated too) to report that she is doing just that.

There are so many emotions we go through. It's the elation over a new word, a glowing review from a teacher, and a clean bill of health that give Jason and me great joy. The highs of life! Then...it's the unknowns that come with chromosome 18, or the constant worry over medications and doses that send us back down. Jason and I have learned to deal with the roller coaster of emotions, for the most part.

We are being tested once again. After a great visit at Children's last week, Ella's lab results tell a bit of a different story. She is still doing great and appears on all fronts to be healthy and happy. I think this is why hearing news that her thyroid and growth hormone levels are very low is so upsetting. The email from the doctor began, "Her labs are a little confusing..." The instant response from Jason and I began, "here we go again..."

It's been almost two years since Ella was diagnosed with hypopituitarism. I would like to think that we have become pretty in-tune to Ella's needs. We can usually tell when she is low. She tends to be tired, irritable, her skin is dry and her appetite wanes. We haven't seen any of these behaviors at all. In fact, Ella has been energetic, growing quickly and very happy. So I guess Dr. Holm's "confusing" is appropriate.

I returned to Children's Saturday morning with Ella to have another round of labs drawn. Fortunately I had made the trip to my parents house for the weekend and just had a short drive to Boston. This means we should have results within a day or two. We have been through this before. Last year, we switched Ella's medication a number of times. The difference this time is the approach Dr. Holm is taking. She is far more reserved when it comes to changes. This is why she ordered more blood work before deciding anything. We are hoping that the latest growth spurt is what's throwing everything off balance. Results to follow....

BIG Jump!

Nine months ago, I am not sure I thought I would be writing this....two years ago, I know I didn't think I would write this....Ella is GROWING, and at light speed!

Stand up TALL!

After struggling with a correct diagnosis and then wrangling with doctors and doses, it seems we have finally found a combination that works great. A combination of not only medicine, but doctors too. Ella had another check-up at Boston's Children's hospital on Friday. The results are still unbelievable to me. Our little Pnut is now 30lbs and 36 inches!!!! This not only bumps her up on the growth curve, it puts her in a much closer range to her peers.

I was not surprised that she has grown. I figured that out when all of her pants were too short, her shirts were creeping up her belly and she jumped from a size 6 shoe to an 8. I just didn't realize how much she has grown. Since her well visit in June, Ella has gained three pounds and two inches. She has put on 10 lbs since January! We celebrated her jump ONTO the growth charts in June when she landed in the 2%. Now she is in the 8.7%....still tiny, but catching up quickly. Jason and I don't care all that much about the numbers and percentages, but it certainly puts it all in perspective.

We had a great visit at Children's. Along with the good news on her growth, it seems we have finally stabilized her thyroid medication. Her doses were changed so often at the end of last year, she went from being too low (hypothyroid) to way, way too high (hyperthyroid). This wreaks havoc on everything (growth, appetite, mood, immune system). Now that Dr. Holm has followed Ella for 9 months and had several consistent blood draws, she feels confident turning her attention more to her growth hormone dose. Ella is getting the highest dose possible for her age and size. The challenge with growth hormone therapy is finding a dose that replaces what the body is not making. We don't want her to grow too fast. The good news is, we may be able to lower her current dose. However, like the thyroid medication, it will have to be done gradually. We will know for sure once the lab results are back. Dr. Holm also ordered a bone age x-ray. Here's another bit of perspective...when Ella had her first bone age x-ray when she was diagnosed (at 18 months), the results showed her bones were the age of a newborn! We should have all the results back later this week.

Perhaps the best news of our visit was to hear the Doctor say Ella is healthy. She is very pleased with her progress, not only her growth, but overall development. As long as all the labs come back normal, we don't have to go back until January.

Cousins! Ella is the "big" girl in every sense now :-)

No Wonder!

To say that I am frustrated with Ella's endocrinologist is an UNDERSTATEMENT! I have been questioning whether her thyroid hormone levels are correct for several months now (actually since June!) I have taken her for at least three blood draws to check and every time, the doctor seemingly brushed me off and said her levels were fine. I called again last week for another blood draw because Ella just seems to be a little off. She is sleeping lots, her skin is super dry (more than just winter dry), and she had a few other signs that I noticed a year ago before she was even diagnosed. At first I was told the results of the latest draw showed her thyroid levels to be borderline...and that they wanted to re-test. 24 hours later I got another phone call from the nurse who was backtracking big time. She said after "thorough review", the doctor decided to increase Ella's synthroid, without doing another blood draw. The history showed a decline in levels and she needs to go to one and a half pills a day...WHAT!! No wonder she hasn't seemed like herself. In one day she went from being borderline low to a significant increase in meds. I am thankful that I was at least persistent in having her tested multiple times. I hate to put her through so many needle sticks, but clearly it is best for her health at this point.

This was the final straw, solidifying my reasoning for heading to Boston for a second opinion. We have another check-up in Albany January 3rd. I am not expecting much from it. We head to Boston Children's hospital January 23rd where I am confident we will get more answers. In the meantime, I am optimistic that the new dose of synthroid will boost Ella's energy. She will hopefully be feeling good just in time for Santa's arrival.

And The Results Are.....

Six months....5.7 lbs....4 inches....these are Ella's stats from her Endocrinology visit today!

Weighing in October 4, 2011...22.7 lbs

Ella now tips the scales at 22.7 lbs and stands 30.5 inches tall. AMAZING! Today's visit went very well. Ella was happy to show off how much she has grown and developed. Since her last check up in July, Ella has gained 1.7 lbs and grown 1.5 inches. Her growth is still going very well and the growth hormone therapy is working. Dr. Gleason admitted she would have liked to have seen a little more of a weight gain with this visit, but attributes this to all of the activity and walking, etc that Ella is doing now. She's not too concerned about our little skinny minnie. Dr. Gleason did however change her dose a little. She bumped up the shots to keep up with Ella's growth. We also had routine blood work done to check her other hormone levels. Her thyroid medication may actually have to be adjusted as well. Of course, Ella was a trooper in the blood lab. We should have the results back in about a week.

30.5 inches!

Thank you to everyone who wished us well with today's visit. I can't say enough how much the incredible love and support from family and friends means to all of us!