EVERYTHING includes EVERYONE working together for the greater good

Wow!!!! I am here to say there is hope for children like Caleb. We are seeing it first hand. Over the past few weeks, we have seen an improvement in Caleb's attention, eye contact, mood, and listening. He is more complient in a changing environment and does not scream when he gets frustrated. Oh...and did I mention that he will sit and let me read to him from start to finish and actually listen...not fiddle with the pages of the book? This may not seem big...but it is BIG to us. Caleb is not anywhere near where his development should be...but in three weeks he has made a dramatic improvement! Praise God!

Now on to different things.....We received the Genetics Report confirming the results of the labwork. They are not able to confirm why Caleb has an piece of chromosone on Chromosone #15. There is speculation but it cannot be assumed since in Science there needs to be evidence to make a diagnosis. When new technologies are introduced, unfortunately many findings have nothing to be compared to and are kinda in limbo until other cases exist.

On the Pediatric Neurolgy side of things (which is where we received our initial diagnosis of PDD), they contacted me to inform me that one of the tests performed on Caleb's blood showed his Thyroid levels were high. The Doctor indicated they would have to recheck it and that it could be his age. He was sending me a perscription in the mail. Instead of me retelling the story all over again, I think my letter below will explain what happened ....

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Dear Doctor (name withheld):

Attached, you will find the lab results conducted by LabCorp. Labcorp provides leading-edge medical laboratory tests and services through a national network of primary clinical laboratories and specialized Centers of Excellence.

As per our discussion a few weeks ago, Caleb’s Thyroid Levels are elevated. At the time, I was under the impression that it was slightly elevated and the recheck was to confirm the results. You informed me that it could explain some of the developmental delays found in my son.

Upon receiving the diagnosis of Pervasive Developmental Disorder, we began the process of researching treatments to improve the quality of Caleb’s life. This research has been a combination of books, articles, and conversations with parents that share similar experiences, along with opinions from other Doctor’s, etc. Through this, we Discovered Dr. Marie Megson. It is not our mission to “replace” the treatment that we receive from Caleb’s current Pediatrician, Neurologists, Geneticists or any other person(s)/facilities(s) involved in his care. As I am sure you are aware, research is being done daily for Autism. It is our hope that Science will discover a Treatment for Autism. Dr. Megson is a Developmental Pediatrician working to help heal these children. She treats children with Autism Spectrum Disorder like treatment for any other medical disorder. They are treated based on their history, family history, and physical exam and lab results. We understand the controversy in the medical community over the Biomedical Approach. Please understand as mentioned already, we are not using this approach as a replacement of current treatments but as a supplementation. We would never put the life of our beautiful son in jeopardy. We believe that ALL the doctors involved in Caleb’s situation should be collaborative in their findings. Each Doctor can have the puzzle piece that make up the larger picture.

Our first visit with Dr. Megson was on June 28th. During this initial visit, she discussed her research and approach. We were also sent to the lab for blood work. We were also sent home with test kits to test stool, urine, and hair. While waiting for the results, we received your call regarding the increased Thyroid Levels. There was no indication that this could be detrimental to Caleb’s health (he could bleed to death)…just a recheck. I received your prescription for the follow-up blood work as well as the Lab Results from Dr. Megson’s testing while I was away on business in Texas. Her findings included Throxine (T4), T3 Uptake, Free Thyroxine Index, and TSH. She noted that the TSH is at the upper limit of normal and we will discuss at the next visit. In the meantime, we removed Gluten and Casein from Caleb’s diet and added supplements. In 3 weeks we are seeing dramatic improvement in his attitude, eye contact, speech, etc.

A copy of these findings from LabCorp is attached. It is our hope that you will review them as you would any other labs findings. Since the additional labs were requested to compare against previously ordered tests, and we have lab work on hand confirming those results, we ask that you review the findings. With all due respect, this lab work should show you the levels of the hormones needed to compare against. Upon review, if you feel it is necessary to have Caleb’s blood drawn again, we will respect that. We are anxious to hear the treatment that you recommend.

Sincerely,

The LaVanish Family
(John, Angie, Caleb and Conner)
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This Doctor treated me as if I was harming my child by refusing to get the blood work that he requested. Instead of reviewing bloodwork that was already in existence to compare against his findings...he blatently treated me as if I refused to get blood work on Caleb...he could bleed to death. Just for the record...I did my research and I could not find anything out there that stated that a "Upper Level of Normal" Thyroid level would mean that a person could bleed to death. I'm not saying that it does not exist...I just did not find anything conterring this information. I did not refuse to do anything, just wanted him to review labwork that I had in my posession that confirmed his findings. Secondly, he treated me as if because Dr. Megson was a "Developmental Pediatrician" that she was less of a Doctor then what he was. He completly changed my intentions...which were to avoid having more blood drawn from Caleb. If he would have took the time to listen he would realize that the reason that I would rather not get more blood being drawn is because it is so traumatic for Caleb. The results are the results no matter how you look at it. If he would just take the time to review the results that Dr. Megson obtained (and even go as far back to check the credentials of LabCorp)and see that indeed they match up to his findings (or don't)...this could save a step. Actually when it comes down to it saving a step could also save TIME which we do not have. This is precious valuable time and I don't feel that it should be wasted on something that is a repeat of something that already exists. Ahhhhh....I could go on and on about this. I struggle with whether it is right for me to be this angry but I know that it is ok to be. It is what I do with that anger that means something. I choose to really explain my heart/motive to this Doctor. In all actuality I recognize this Dr. feels threatened. This Dr. has his own opinion on the way things work and he is very conservative on his views. It is my opinion that a Doctor could be too conservative whereas never making any changes for the good!! Change and acceptence of new approaches (or at least the evaluation of a new approach) is what makes a person grow and I believe this is the same in any field that you are in. A doctor needs to be willing to look at evidence out there for other approaches....and this means involving the people that know their child best...the parents...into the equation. I refuse to not be heard when it comes to my child. I refuse to be treaded on when it comes to his well being. I refuse to be treated as if I'm an imbecile and not smart enough to think on their level! I have watched the indignation of so many parents before me...including my Gram. Some Doctors (not all) disrespect the common person because they are only taking a clinical approach. When they take the time to see my child...day in and day out...then I will completely rely on them but I KNOW that this is impossible. That is why they need to talk to the parents and look at what they are seeing at home!!!!! These Doctors need to work collaborativity with the parents as well as other Doctors or any other persons concerned with the development of with my child. These doctors need to stop blaming the parents and work with the parents for better treatment options. These Doctors need to stop talking in circles and undermining the parents role in all of this!

If the Doctor reviews the findings from LabCorp and determines (and is able to show me proof), that more testing is necessary...I will confer. If he can look upon the results from LabCorp and compare against his original findings...he should have the evidence that he needs to make a reasonable suggestion about his approach. I will then compare his opinions against those of Dr. Megson and other findings that I may derive along the way. I can then take these results and make a decision (or choose to get more information) on what route to take.

This experience has forced me to look into the function of the Thyroid and have a better understanding of how it works. I can now look at the hormone levels and understand the function of the thyroid alongside the Pituatary Gland and Hypothalamus found in the brain. I do have questions regarding the function and I am hoping that I can get the respect well deserved when I ask these questions.

The Thyroid Gland is like a heater. The heat that it produces are the T3 and T4 which sends signals to the brain. The Pituatary Gland is like the Thermostat and it shuts off when it gets too hot from the heat (T3 & T4). The T3 & T4 stop blowing (so to speak)...meaning the production is stopped. Once it is cool enough....The Pituatary (thermostat) sends out TSH which turns the heat back on (Thyroid gland) which produces more heat (T3 & T4) cells. The Hypothalamus is like the person that regulates the heat and controls how hot it gets. When the Doctors review all of these levels...they can often determine the root of it. In other words, they can determine if it is the Thyroid or the Pituatary Gland malfunctioning by the level that each is produced. This is the testing that The Neurogist is seeking. He needs to see the levels. Please pray that he'll look at the results that Dr. Megson pulled on each one of these functions and treat us fairly and dignified when responding with his findings.

Romans 8:28
And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. (NLT)