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 ....
_____________________________________________________________________________________
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)
_____________________________________________________________________________________
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)
Friday, July 23, 2010
Wednesday, July 7, 2010
Visit with Dr. Megson and Treatment
It's been awhile since my last post. We have had a busy couple of weeks with Caleb's new treatment and of course the 4th of July was in between it all.
We met Dr. Megson a little over 1 week ago. The thing that stands out most in my mind was that she genuinely cares about making these children well. I believe her compiled research will ultimately help Caleb. Not only did she give us hope for the future...but she helped us to understand some of Caleb's tendencies. Here are some of the things I found interesting....
**Because of the lacking of certain nutrients in the body...the vision field is impaired. This means that instead of seeing like you and I in 3D....he sees thing in 2D. This information is crucial....it helps us to be better prepared for his classroom time. If a teacher is outside his vision field ....he may not be able to focus on what the teacher is saying. He needs a more direct...face to face approach. Also, this may be why TV can be such an addiction to these children...it is their world because it is also in 2D. This also may be why he can set for hours and push cars. When the car is close to his face....it is in his focus (color and all)....when he pulls it away it leaves his focus. I could only imagine how wild that must be!!! She said in many cases....the moms have night vision problems (which I have).
**It is possible that the Antibiotics that Caleb had and or medications administered during his surgery caused some of this. This and many other factors may have led to the damage to the gut. This damage can be repaired with diet and nutritional supplements (vitamins).
**Many of these children like pressure because of the sensory stimultation. Many of these children like to rough house and wrestle because of the feeling they get from it.
We purchased a book written by a mom that was treated by Dr. Megson called, "The Biomanagement Field Guide for Autism Spectrum Disorder" by Allison Trotter. Since we got so much information in the time that we talked to Dr. Megson...it was hard to write it all down. This book explains everything from a parents perspective and gives tips on keeping it all organized.
One of my favorite chapters in the book is called the Butterfly Effect. Many Autoimmune Diseases and Inflammatory diseases have been linked to an increased risk factor for autism. Pair that up with the child's personal health history...including intestinal insults, envioronmental insults, and viral insults....and they represent what may have gone wrong and where it started. The key is to brainstorm all of this information then put it in chronological order. Also take into consideration and current health problems and lifestyle changes (introducing solid foods, moving, etc. Include such events as "shots", etc.
On December 11, 2006 Caleb had his surgery. He was given doses of morphine, antibiotics, etc. Put all that together with some of the environmental hits in our home (pest control, cleaning products, Foods (certain attitudes and proteins not broken down), and vaccintation....one of which was only a few weeks after the surgery on December 28, 2006.
Some of these children are already predisposed to some of these symptoms and then you add many other environmental factors into the mix....and they are heightened. We are just putting too many chemicals and foods into the body that was not meant for human consumption. It is almost scary when you start reading what we are exposed to. It wouldn't be any wonder that the rate of autism has increased drastically. When is this going to stop? It took this to open my eyes. My hope is that other parents will not wait until they are going through a similar experience to research these factors. I wish that every parent would research the vaccines that are being put into our children's body. It is not that I am anti-vaccine...but just safer. Vaccinations can be made safer and spread out over time!!! There are also things that can be tested for to see if the child is immune. Dr. Megson takes this very stance....and recommends reading, "What your Pediatrician won't tell you about Childhood Vaccinations" by Stephanie Cave, MD".
I can tell you that I am a bargain shopper...and have never given it much thought about what I eat. I've never done organic because of the price. I have always cleaned with pinesol, etc because I always felt like it wasn't clean unless it smelled frsh. I never gave much thought to how much nutrition can play a role on the body and brain. I always fed my children healthy (or so I thought)and they do not eat a lot of junk food. I never read labels, etc. It was not until I had a child with autism that I realized the toxins that are out there. Even a bottle of Flintstone Vitamins has a bunch of junk that does not belong in a childs body....The very first ingredient list is Succrose and it goes on to list artifical flavors, more sugar, etc.
This week...we started 4th of July with a bang. I like to think of it as our "new year". We started the Gluten Free, Casein Free diet...the day after 4th of July. We also started a regimen of vitamins every 5 days. As a family, we are all eating healthier!
Yesterday, I got to take a urine sample and have also sent a hair sample to a lab. My last task with that (so far) is a fecal sample. I am not looking forward to that one!!! At least he is still in a diaper and I don't have to do what my friend has to do. She literally has to chase him around with a french fry box and ask him if he has to go!!! The things we do for our children:0) It is all worth it though!!!
3 days into the Cod Liver Oil (before we started the diet)....Caleb had a full blown conversation with me and Johnny. He seems to be a bit calmer too. I can't say that it is working yet or if it is all the prayer that is going out for him. Either way, all that matters is we are seeing some improvement and we have hope that as we start introducing the vitamins into his diet...that his intestines will heal so that we do not have to remain on the diet forever.
As for the diet....I bought bread yesterday and it was over $7.00 but overall it wasn't too bad. I plan on getting a bread machine so I can experiment with some different breads and not spend so much. There are so many great products out there that are Gluten Free/Casein Free that we eat on a daily basis so I was able to incorporate that into our mealtimes with a few minor adjustments. The hardest part is no bread, pasta or cheese. There are some great alternatives and substitutes out there and the great part is that Caleb has not developed a preference yet. It was a little easier for me in that aspect because he doesn't really care if the spaghetti is Semolina or Rice. He just knows it is spaghetti and will eat it. We hope he keeps it up! We tasted a few of the products too and they are actually not too bad!
I know that God has led us to where we are at with Caleb. I really felt his presence on the first couple of pages of Allison Trotters book. She mentions that she is a christian. She said that although her personal faith is not expressed in the book...you can feel the power on every page. Hallelujah!!! I know He will use this for the greater good and if we remain faithful and steadfast....God will move mountains!!!! I hope that this Blog helps at least one person to keep going. I know it is a long road....but you don't have to do it alone!!!
We met Dr. Megson a little over 1 week ago. The thing that stands out most in my mind was that she genuinely cares about making these children well. I believe her compiled research will ultimately help Caleb. Not only did she give us hope for the future...but she helped us to understand some of Caleb's tendencies. Here are some of the things I found interesting....
**Because of the lacking of certain nutrients in the body...the vision field is impaired. This means that instead of seeing like you and I in 3D....he sees thing in 2D. This information is crucial....it helps us to be better prepared for his classroom time. If a teacher is outside his vision field ....he may not be able to focus on what the teacher is saying. He needs a more direct...face to face approach. Also, this may be why TV can be such an addiction to these children...it is their world because it is also in 2D. This also may be why he can set for hours and push cars. When the car is close to his face....it is in his focus (color and all)....when he pulls it away it leaves his focus. I could only imagine how wild that must be!!! She said in many cases....the moms have night vision problems (which I have).
**It is possible that the Antibiotics that Caleb had and or medications administered during his surgery caused some of this. This and many other factors may have led to the damage to the gut. This damage can be repaired with diet and nutritional supplements (vitamins).
**Many of these children like pressure because of the sensory stimultation. Many of these children like to rough house and wrestle because of the feeling they get from it.
We purchased a book written by a mom that was treated by Dr. Megson called, "The Biomanagement Field Guide for Autism Spectrum Disorder" by Allison Trotter. Since we got so much information in the time that we talked to Dr. Megson...it was hard to write it all down. This book explains everything from a parents perspective and gives tips on keeping it all organized.
One of my favorite chapters in the book is called the Butterfly Effect. Many Autoimmune Diseases and Inflammatory diseases have been linked to an increased risk factor for autism. Pair that up with the child's personal health history...including intestinal insults, envioronmental insults, and viral insults....and they represent what may have gone wrong and where it started. The key is to brainstorm all of this information then put it in chronological order. Also take into consideration and current health problems and lifestyle changes (introducing solid foods, moving, etc. Include such events as "shots", etc.
On December 11, 2006 Caleb had his surgery. He was given doses of morphine, antibiotics, etc. Put all that together with some of the environmental hits in our home (pest control, cleaning products, Foods (certain attitudes and proteins not broken down), and vaccintation....one of which was only a few weeks after the surgery on December 28, 2006.
Some of these children are already predisposed to some of these symptoms and then you add many other environmental factors into the mix....and they are heightened. We are just putting too many chemicals and foods into the body that was not meant for human consumption. It is almost scary when you start reading what we are exposed to. It wouldn't be any wonder that the rate of autism has increased drastically. When is this going to stop? It took this to open my eyes. My hope is that other parents will not wait until they are going through a similar experience to research these factors. I wish that every parent would research the vaccines that are being put into our children's body. It is not that I am anti-vaccine...but just safer. Vaccinations can be made safer and spread out over time!!! There are also things that can be tested for to see if the child is immune. Dr. Megson takes this very stance....and recommends reading, "What your Pediatrician won't tell you about Childhood Vaccinations" by Stephanie Cave, MD".
I can tell you that I am a bargain shopper...and have never given it much thought about what I eat. I've never done organic because of the price. I have always cleaned with pinesol, etc because I always felt like it wasn't clean unless it smelled frsh. I never gave much thought to how much nutrition can play a role on the body and brain. I always fed my children healthy (or so I thought)and they do not eat a lot of junk food. I never read labels, etc. It was not until I had a child with autism that I realized the toxins that are out there. Even a bottle of Flintstone Vitamins has a bunch of junk that does not belong in a childs body....The very first ingredient list is Succrose and it goes on to list artifical flavors, more sugar, etc.
This week...we started 4th of July with a bang. I like to think of it as our "new year". We started the Gluten Free, Casein Free diet...the day after 4th of July. We also started a regimen of vitamins every 5 days. As a family, we are all eating healthier!
Yesterday, I got to take a urine sample and have also sent a hair sample to a lab. My last task with that (so far) is a fecal sample. I am not looking forward to that one!!! At least he is still in a diaper and I don't have to do what my friend has to do. She literally has to chase him around with a french fry box and ask him if he has to go!!! The things we do for our children:0) It is all worth it though!!!
3 days into the Cod Liver Oil (before we started the diet)....Caleb had a full blown conversation with me and Johnny. He seems to be a bit calmer too. I can't say that it is working yet or if it is all the prayer that is going out for him. Either way, all that matters is we are seeing some improvement and we have hope that as we start introducing the vitamins into his diet...that his intestines will heal so that we do not have to remain on the diet forever.
As for the diet....I bought bread yesterday and it was over $7.00 but overall it wasn't too bad. I plan on getting a bread machine so I can experiment with some different breads and not spend so much. There are so many great products out there that are Gluten Free/Casein Free that we eat on a daily basis so I was able to incorporate that into our mealtimes with a few minor adjustments. The hardest part is no bread, pasta or cheese. There are some great alternatives and substitutes out there and the great part is that Caleb has not developed a preference yet. It was a little easier for me in that aspect because he doesn't really care if the spaghetti is Semolina or Rice. He just knows it is spaghetti and will eat it. We hope he keeps it up! We tasted a few of the products too and they are actually not too bad!
I know that God has led us to where we are at with Caleb. I really felt his presence on the first couple of pages of Allison Trotters book. She mentions that she is a christian. She said that although her personal faith is not expressed in the book...you can feel the power on every page. Hallelujah!!! I know He will use this for the greater good and if we remain faithful and steadfast....God will move mountains!!!! I hope that this Blog helps at least one person to keep going. I know it is a long road....but you don't have to do it alone!!!
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