Follow-Up Appointment....Pediatric Neurology

Wow! The last few weeks have been amazing and trying all bundled into to one!! We contacted Geisinger to confirm they received lab work we faxed (reflecting Thyroid levels) along with the letter to the Doctor (see previous Blog). The Receptionist confirmed that the Doctor received and reviewed the information. We expected to discuss the results at Caleb's follow-up appointment in a few weeks with a different Pediactric Neurologist. If we wanted to meet specifically with Dr. Stayer we would have to wait longer or travel to Danville. We opted to go to a closer office in Altoona so we decided that it would be okay to see a different doctor.

On Monday, we arrived at the local office for the children's hospital. The Doctor went over the same examination conducted 6 months prior. He checked Caleb's reflexes and reaction to different objects that he carried in his bag. They included a light that he darted around the room, A long bar that he used to make a buzzing sound, and another long bar with a little wheel on the end that he used to check his reflexes. Then he asked us a few questions about Caleb. What does Caleb like to do? Can he draw a circle? How is potty training? Does he alternate his feet when he goes up the stairs. We informed him that Caleb liked to push his cars and play outside. He does not like to color but he's drawn what appeared to be a circle. Potty training has not shown any results for a long time. Caleb will keep his underwear dry but will not go to the potty. He would hold it all day and wait until the night when it was bedtime (and he got a diaper) to go. I've tried chasing him around all day and asking him if he had to go. We even paid for an EBook and used the method of chasing him around all day and using positive reinforcement to keep him dry. We hid all the diapers in the house so we would not put a diaper on him. Less then 1 hour after putting him to bed...he was wet. Hmmm...You name it we've tried it !!!! We used to worry about what everyone thought about Caleb still being in diapers since he is 4 years old. We had to let go of that along time ago if we were ever going to move on!!! We have to always keep in mind that it doesn't matter what other people think. It matters that Caleb is not ready and we are not going to push him and stress out about it. Our hope is that his younger brother is easier to potty train and Caleb will catch on!!! We informed the doctor that we are working on getting him an album together with the pictures of the steps of the process of using the bathroom. The doctor seemed annoyed. Furthermore, we informed him that Caleb does not alternate feet up and down the stairs correctly. He is getting physical and occupational therapy to help him use the right side of his body.

At this point he asked us if we had any questions. We asked if he was going to go over any of the results with us because we were under the impression that that is what this appointment was about. He then asked what results we wanted to discuss. At this point we did not know what to think. Was it a mistake to meet with a different doctor then the original examiner? Of course, by now we have learned that WE have to be Caleb's advocate. Nobody else!!! We can't expect that they are going to review the notes, take notes and respect other information we have to tell them. We tell you this not to complain but to give you a glimpe into our world. If you have a child that has been diagnosed with any condition, you must not expect the doctors to care about your child like you do. He or She has spent less then an hour with your child, and does not know your child like you do. Doctors are rushed nowadays and unfortunately it is some more then others. We know for a fact that it takes up to 1 year to get an initial visit with a child neurologist so that right there tells me that they are very busy!!! So we know not to expect that the doctor is going to take the time to thoroughly review all of our childs information. We know that he really should do his job...but we are aware of the stone cold facts...he probably didn't!

We informed the doctor that we wanted to see the CT Scan and discuss the results. He showed us different views of Caleb's brain. He explained that a MRI would show a better picture. The right side of Caleb's brain had more looping in it then the left. He explained that you did not want too much or too little of this looping because it could cause such problems as speech delays and weakness in the muscles.

Next, we asked to review the results of the Thyroid test. He pulled up Doctor Megson's results and showed us a number that he could not read. He said the fax came in and they could not read it. Johnny informed the doctor that we had brought the results. We quickly pulled the results out of our organized Acordian folder. Turns out the number he could not see was not something he needed to see anyway. We asked what THEIR results were since he was only viewing Dr. Megson's lab reports. He didn't even know his results were there (again because he had not looked at the file enough). He pulled his results which showed Caleb's results to be abnormally high for the TSH. They did not even have the T3 & T4 results which is equally important in putting the pieces together. At this point, we realized that the original Doctor did not have these numbers and that is why he needed the testing done again. He could not adequately compare his results to Dr. Megson because he did not have all the results. The current Doctor said that since Dr. Megson results are normal and confirm that then it is okay...within normal range. (Who cares that the range is on the high end of normal and not even a..."We'll keep following this in the future." We brought up about another testing result that We had that shows Caleb's fecal lactoferring has abnormally high. When this is elevated it could be in association of imflammatory Bowel Disease such as Ulcerative Colitis or Crohn's Disease. He would not even look at the results...he simply looked at me with a sheepish smile and said this stuff is a scam. It's not regulated by the FDC. He went on to say that he is not telling me a bad thing...this is good news. Caleb is going to develop. At this point, we told him that we understand that is his opinion however, since we changed Caleb's diet and started supplements, removed certain toxins from his environment, we have seen a dramatic improvement in Caleb. He informed me that Caleb will develop and that we will see spikes in his development and that is all that it is. He kept repeating that is a good thing. We again told him that we appreciate his time however until we are proven otherwise, we are going to continue this treatment. There is no reason to get another MRI to show Caleb's brain a little brighter and better when that is only going to tell us a piece of the puzzle. We could clearly see the looping on the CT scan so the MRI would only mean another Anestisia. They won't perform some dramatic surgery to help him develop. According to this doctor, it is what it is and we just have to accept that. We refuse!! We will not!!! He was not their with our child in the last 4 years let alone the last month of progress! We will not accept this as some fluke!!! Yes, I believe that prayers have a lot to do with it...and I also believe that God has led us to Doctor Megson. We can't expect for God to hand us everything. We have to follow his prompting. Even though we know God can performs miracles (he does everyday)...sometimes those miracles are in the little things! When we listen to God's voice and what he is telling us to do...no matter how HARD the circumstance are and follow his prompting...we'll see his face! Circumstances will not control the way we react to the situation. Although it isn't fair that this doctor refuses to document or review any of the information we have, we know that he will provide the grace when life gives us lemons. It would be so easy for us to continue to murmur about how unfair this is. However, we refuse to dwell here long. We know this is a sign to continue with the treatment that is working (Dr. Megson) and quit wasting our time on the things that aren't important. We've been in a circle with Pediatric Neurology numerous times and it is obvious to us that we must make a change. Insanity is doing the same thing over and over and getting the same result (and expecting a change). We are not insane (yet:))

We found that Fecal Lactoferrin (which is the results the doctor did not want to review) is sensitive and specific for detecting inflammation in chronic IBD. This noninvasive test may prove useful in screening for inflammation in patients presenting with abdominal pain and diarrhea. What he claimed was a scam is a legitimate test of screening. We could see him pointing fingers at the diet and the various supplements that he is on but as for the testing...he has no merit. If it weren't for Dr. Megson....we'd never have these tests performed. We count our blessings everyday!


My Grace is sufficient for you, for my power is made perfect in weakness.

2 Corin 12:9