Hannah just had her 90 day follow-up with the GI specialist. Her new routine will involve a visit every six months, but because her initial levels were so bad, they wanted to see her after only three.
They told us to expect little to no improvement over her condition in February, as the intestines take awhile to heal and the corresponding antibody levels will take time to dissipate. That's what they said. BUT we've been watching Hannah eat and get taller and fill out. AND we've seen the color return to her face, her unprecedented levels of energy and how HAPPY she is all. the. time, and we just couldn't go into the appointment expecting nothing. We were expecting something significantly more than nothing. For sure.
 |
| Waiting to see the doc...on a giant frog. (Have we mentioned that the Children's Hospital is pretty cool?) |
 |
| The difference in our girl from February (left) to May (right), hence our expectations of some improvement |
She measured a full TWO inches taller than in February, and weighed in almost FOUR pounds heavier...in 90 days!! This was a great sign from a kid who had fallen from the 97%+ category on the growth charts down into the 50th percentile just a few short months ago. Based on her progress, she is solidly back in the 80s. The GI specialist was smiling ear to ear when she delivered this news, and she even said she suspected we'd see "some" level of improvement in her bloodwork. Better than "nothing", I suppose, but still...two inches and four pounds in 90 days is better than "some improvement" in my mind.
We went right to the lab after our consultation with the doctor. Unfortunately, Hannah now knows exactly what it means to be "sent to the lab" and had quite a bit of apprehension prior to getting her blood drawn. Not fun. I also managed to lose the special Despicable Me band-aid she had picked out at home in advance of the appointment somewhere between the doctor's office and the lab, approximately 100 yards apart in the hospital - a certain Mom-fail which did not help matters. Thankfully the lab techs had quite a supply of kid-friendly band-aids, and she was appeased by something of the glitter variety.
The very next day we got a call from our primary care doctor (not the GI specialist). They had already reviewed her labs, and called to report that she was anemic. Oddly (or so we thought at first), she was actually more anemic than she was in February. It turns out that a lot of normally iron-fortified products (i.e. bread, pasta, cereal) are not iron-fortified when they are gluten-free. Apparently this is a fairly common issue for Celiac patients, especially when they are four years old and not big fans of leafy green vegetables or red meat. We've got her started on a Flintstone vitamin with iron, and are hoping that does the trick for us.
Enough about the negatives, though. By the way, that was the ONLY negative. Our doc didn't have 100% of the results from the panels that were drawn, but she could see that all of her critical numbers, the ones that indicated she was horribly malnourished just 90 days ago, were all within the normal range. NORMAL!! In 90 days!! HALLELUJAH!!
And then, just one day later, we got the call from the GI specialist. They called to report the extremely AMAZING news that her antibodies had fallen from their crazy high levels in February to ALMOST normal. They were floored! To quote the GI doc: "I have never seen such a positive response this quickly. Not ever."
There are two primary antibody levels that they measure to track her exposure to gluten: endomysial and tTG. Upon diagnosis, her endomysial level was 1:640. Her current labs showed this level had dropped to 1:20, with "normal" being 1:10. Her tTG in February was 128. Her current labs put her at 15, with "normal" being 7. These kind of results are unheard of after only 90 days.
We are so, so thankful for the health of our girl. While we have done whatever we can to be vigilant about the food she eats, we know that this success is much bigger than us. Her case seems to be quite straightforward. Many are not so lucky. We have met several families with young children also carrying the weight of the Celiac diagnosis, and they haven't been as fortunate with their recovery process. There are many other factors, and sometimes a multitude of other allergies or conditions that impede healing. We don't seem to be dealing with that with our Hannah, at least not at this point. The disease can morph and change over time, but we're hopeful that early intervention, and her amazing progress thus far will help eliminate or minimize the number of challenges she may face in the future. She has adapted so well, and is loving her life free of gluten and belly aches. We'll do anything it takes to keep it this way for her.
The GI specialist would like to see her one last time, in six months, to make sure we're still on the right track. After that, we'll be free to follow-up with our primary care doctor for her semi-annual blood tests. While she likes the novelty of the Children's Hospital, in general we'll feel better knowing that her health doesn't warrant any kind of specialist in our lives. Meanwhile, our gluten-free life keeps getting easier and easier, and we're reaping the benefits of a healthy, happy Hannah. Yay!
The very next day we got a call from our primary care doctor (not the GI specialist). They had already reviewed her labs, and called to report that she was anemic. Oddly (or so we thought at first), she was actually more anemic than she was in February. It turns out that a lot of normally iron-fortified products (i.e. bread, pasta, cereal) are not iron-fortified when they are gluten-free. Apparently this is a fairly common issue for Celiac patients, especially when they are four years old and not big fans of leafy green vegetables or red meat. We've got her started on a Flintstone vitamin with iron, and are hoping that does the trick for us.
Enough about the negatives, though. By the way, that was the ONLY negative. Our doc didn't have 100% of the results from the panels that were drawn, but she could see that all of her critical numbers, the ones that indicated she was horribly malnourished just 90 days ago, were all within the normal range. NORMAL!! In 90 days!! HALLELUJAH!!
And then, just one day later, we got the call from the GI specialist. They called to report the extremely AMAZING news that her antibodies had fallen from their crazy high levels in February to ALMOST normal. They were floored! To quote the GI doc: "I have never seen such a positive response this quickly. Not ever."
There are two primary antibody levels that they measure to track her exposure to gluten: endomysial and tTG. Upon diagnosis, her endomysial level was 1:640. Her current labs showed this level had dropped to 1:20, with "normal" being 1:10. Her tTG in February was 128. Her current labs put her at 15, with "normal" being 7. These kind of results are unheard of after only 90 days.
We are so, so thankful for the health of our girl. While we have done whatever we can to be vigilant about the food she eats, we know that this success is much bigger than us. Her case seems to be quite straightforward. Many are not so lucky. We have met several families with young children also carrying the weight of the Celiac diagnosis, and they haven't been as fortunate with their recovery process. There are many other factors, and sometimes a multitude of other allergies or conditions that impede healing. We don't seem to be dealing with that with our Hannah, at least not at this point. The disease can morph and change over time, but we're hopeful that early intervention, and her amazing progress thus far will help eliminate or minimize the number of challenges she may face in the future. She has adapted so well, and is loving her life free of gluten and belly aches. We'll do anything it takes to keep it this way for her.
The GI specialist would like to see her one last time, in six months, to make sure we're still on the right track. After that, we'll be free to follow-up with our primary care doctor for her semi-annual blood tests. While she likes the novelty of the Children's Hospital, in general we'll feel better knowing that her health doesn't warrant any kind of specialist in our lives. Meanwhile, our gluten-free life keeps getting easier and easier, and we're reaping the benefits of a healthy, happy Hannah. Yay!
 |
| Celebrating great results with an attempt at gluten-free soft pretzels (a fail, but we had fun trying) |
 |
| The gluten-free chocolate chip cookie dough ice cream was our back-up, and did not disappoint |
 |
| Sampling the cookie dough ice cream - a winner for sure! |
No comments:
Post a Comment