Medical Frustrations

Where do I begin? I try to make this blog positive--since our life is so wonderful. We aren't perfect, but we are happy! I have refrained from talking about the following situation with most people and never thought I would be posting this on our blog--but this blog is our family's diary and it wouldn't be complete without this major thing in our life.

Taking it back to the beginning--at 6 months, AJ was a very chunky monkey. He weighed 19 pounds. He measured in the 75% for weight and 70% for height. We were given the ok to start giving him solids at the 6 month mark (I know a lot of peds give the ok at 4 months, but ours didn't as they believe that it isn't necessary and breastmilk or formula should be the only source of nutrition until 6 months of age). AJ never really liked purees. It was always a struggle to feed him solids and he nursed every three hours until at least 9 months of age. Our doctor said it was ok as it's just practice and breastmilk would be his main source of nutrition until 12 months old. Anyway, basically this was normal.

At 9 months he had gained only 19 ounces--so now is is 19.19. He dropped a bit in the percentile in height and weight. They thought it was ok since he was SO active and didn't take in solids as well as some kids. They did a finger prick at the results were positive for low iron count. He went on a iron supplement.

At 12 months he lost weight--now he is 19 pounds, 2 ounces. The finger prick showed he was EVEN lower in iron despite the iron supplement. We increased the iron supplement to two times a day for a month.

13 months--go back to the doctor for blood tests--another finger prick. He is now 19 pounds even, still not eating well (and on finger foods completely now--which he liked more), and his iron was STILL low. They take a real blood test (three vials!) and send off to the lab. Meanwhile, we increase the dose to three times a day.

A week later we get the results--AJ is def. anemic but we have no idea why. We schedule an appointment to come in. In the meantime she takes him off of the iron supplement because it now shows that the iron intake is ok--he just isn't keeping it in his system for whatever reason.

Now it's August and we go in to see the doctor. She orders more blood tests and we are CONVINCED that he has celiac disease since he has basically every symptom there is. John and I make the decision to gut gluten out of his diet.

A week later, the results come back and he is negative for EVERYTHING from Celiac to Chrones. The doctor we love goes on vacation for two weeks--so these results came from a doctor that has never seen AJ. In the meantime, AJ got really sick to where he was not eating food. John and I were both scared. After three days and a few dry diapers, we go in for a quick visit with the new doctor to see if he is dehydrated. He isn't but she is curious with this other stuff.

We go BACK in for a longer visit. She orders more tests. She orders us to track his caloric intake for a week. Turns out AJ is eating an OK amount. On the lower end, but normal nonetheless.

We go for a Kidney ultrasound--those are fine.

We go in for his 15 month appointment and he lost even more weight, despite now eating really great. He is now 18 pounds 12 ounces and off the charts for weight.

A few days later the previous lab results come back--those were to measure his growth hormone. They call and LEAVE A MESSAGE (both doctors we love are out of town at this point--another new doctor in the practice) to tell us his growth hormone levels were abnormal and now we have to go to Childrens Hospital. I got upset, tried to call back, and couldn't get a hold of them. That really made me mad. How dare you give me results like that. That was the end of August.

Wait, wait, wait....yes, there is a long waiting list to get in with Childrens.

So this past Tuesday we go to Childrens Hospital in DC to see the endrochronologist. I really was convinced that this would give us closure. AJ feels like he is gaining weight (despite my cousin Colleen calling him scrawny--Coll if you are reading this, yes I'm calling you out..you had no idea what we have been through, so it's ok :)), he is eating much better, and I'm convinced it's a diet thing and now he has fixed it himself, so we are good to go.

AJ did not gain a single ounce or grow at all.

The doctor told us he does not have a growth hormone deficiency. He didn't test him for anything--he looked at the results from an earlier blood test and concluded that something else was causing his hormone to lack--that it's more then lacking the hormone to show up in blood results. He thinks it is GI related and even says he thinks it's Celiac (remember--he tested negative before though). He says he is "really concerned about his weight" and that "it isn't normal for his weight to drop like it has". He isn't concerned with his height--in fact, he said that although he did drop, when he electronically does a height analysis (vs. manual like our ped did), he comes up with 20%. But he is below the charts in weight and when combining the two, because his weight is so low, he is off the charts because of it.

He refers us to another department at Childrens--GI. We see the doctor on October 26th (thankfully in Fairfax this time, no way am I EVER going back to the DC hospital unless it's an emergency ever again).

John and I are left in pure frustration. We are frankly at our wits end. WTH is wrong with our little boy? Months and months with no answers. And now I feel we will go on October 26th and there will be NO answers once again. We will continually feel as if we are being pushed from one doctor to the next with nothing to show for it. And, meanwhile...we are wasting precious time. Will this affect AJ for the rest of his life? If we delay it as we have, will there be long term effects from that?

It's so frustrating, I can't even tell you. BUT..on a very positive note, we have the best little boy in the world. He is amazing in every way. He is loving, happy, and so smart. He is excelling socially more than I would have ever imagined. He talks a ton and there is pretty much no word he won't at least try to say. He can point to a body part and tell you what it is. When you ask him what a certain animals does, he will make the animal sound. He knows what cars, planes, trucks, and trains are. I am so happy that despite all of this, he is such a good little boy. Although we have been so frustrated, we find solace in the fact that he is so amazing.