Finally! The labwork is finally complete and the results are in.....
Cole, Mommy, and Dr. A met yesterday to go over her findings. And, they are fairly extensive. In a nutshell, he has many vitamin/mineral deficiencies, most likely caused from intestinal swelling which causes malabsorbion of food. His brain is being starved of vital nutrients because his body simply cannot process food correctly. On top of that, it appears by his white blood cell count (very low) that he has some sort of viral or bacterial infection which has drained his immune system. In fact, it is so low, his body doesn't even properly react to his own food allergies. There isn't enough left in his sytem to even activate his defenses when he eats something he is allergic to!
His allergy testing came back nearly negative on everything. That was a huge surprise to the doctor and to Mommy! But, we'll have him re-tested in the future once his immune system is back on track and the doctor expects very different results the next go around. However, the test did show allergies to: gluten, yogurt, lemon, avacado, barley, and brewer's yeast. (Sorry kid....no beer later in life!)
Here is summary of the findings:
--Iron deficiency
--Chronic viral infection causing depression of immune system
--B12, B6 and Folic Acid deficiency
--Multiple food allergies
--Congested liver: detoxification not working properly and not producing enough cholesterol
--Gallbladder dysfunction, possibly due to heavy metal or chemical overload
--He has been eating a low protein, high carb diet (BAD!)
--Intestinal malabsorbtion
--Pancreatic insufficienty
--Needs calcium co-factors: Vitamin D, magnesium, EFAs, and trace minerals
--Chronic digestive inflammation
As a result of these findings, we have a lot of work to do. We are going to be adding smoothies to his diet twice daily. The smoothies will contain the vitamins and supplements that his body is lacking in an effort of try to repair his immune system and digestive system. Here is what we're adding:
1. Multi-Vitamin supplement (Spectrum Complete)
2. Arctic Cod Liver Oil (Vit. A, DHA, and fatty acids)
3. Pea Protein powder (to get more protein in him)
4. Intestinal Repair Complex for 3 months
5. Digestive Enzymes with every meal (to help his body digest and absorb food)
6. Probiotics
7. Monolauren (a natural antiviral derived from coconut oil)
It is an overwhelming list! But, we'll start slowly and hopefully nothing will taste TOO terrible that we can't hide it somehow in the smoothies. (fingers crossed) He has started on the Intestinal Repair Complex already and Mommy ordered the rest this morning. Hopefully we can begin the other things over the course of the next week or so.
On top of the supplements, the doctor is also advising we do a week-long ozone flush of our home. With all of the new carpet, paint, stains, etc. that are outgassing VOCs, it is terrible on Cole's system. Since his body cannot detox chemicals and toxins, we're adding to the problem just with the air he is breathing at home. We will do this in the near future, as well as switch to all non-toxic products around the house. Also, she is recommending far infared sauna treatments in order to help take some of the work off of his liver to aid in detoxing his body.
WHEW! We're got a lot of work ahead of us!
Friday, April 17, 2009
Monday, April 13, 2009
The Never-Ending Saga...
As I mentioned in an earlier post, we are now working with a DAN! doctor and exploring the biomedical approach to treating autism. As a follow-up to our initial consultation and as a first step, she ordered a round of bloodwork and a urinalysis to assess Cole's current state of health. While we expected the blood draw to be traumatic for him, what we didn't expect was the complete run-around we have been given. (And, let me just preface this by saying that it is NO WAY the fault of the doctor.)
In March, we went to Quest for the blood draw. Mommy, full-well knowing there was no way Cole would pee in a cup at the lab, made a special trip to the lab beforehand to obtain the cup so that we could get the specimin at home and take it to the lab with us. So, that morning, Cole and Mommy went to the lab with our orders and urine specimin in hand.
Mommy gave the nurse everything and then we were called back into the room where his blood would be drawn. It was just as horrible as I expected it to be. I had to pin the poor kid down while the nurse fished around for a vein. And, then 3 vials were drawn, all the while he was trying to hit, kick, and throw anything he could find. I'm sure the screaming and hollering could be heard for miles. And, when it was over, Mr. Grumpy threw a handful of bandaids at the nurse and left in tears. It was awful.
A few days later, I got a call from the doctor asking when we were going to go to the lab. I had a sinking feeling. My suspicions were confirmed when the doctor contacted me later that day to tell me that the lab lost the bloodwork. LOST IT!!! Apparently, we got the new girl that day. How perfect.
The only bright spot was that the IGg allergy testing had been sucessfully sent to Altess. However, the rest of the testing had not been done. Nor could Quest find any of the blood to re-test. Their solution? They offered to come to our home and re-draw. Uh, thanks. But, not the point.
Cole was scheduled for surgery just 2 days later. And, I spent those next 2 days on the phone with anyone who would listen. I begged Children's Mercy Hospital to order the same labs and draw them while he was under anesthesia. And, after 2 nerve-wracking days on the phone negotiating between the DAN! doctor, the hospital lab, and the surgeon's office, the orders were written finally!
The day of surgery, I took a copy of the orders with me. I gave them to anyone who would take them. I nagged every single nurse and doctor at every turn before surgery. They all assured me that the lab had been contacted. It would be taken care of.
After surgery, the doctor assured me that Cole was fine. The next question from my mouth, "Were the labs drawn?" YES! Hallejulia! Another trip to Quest was not an experience I was up for! My bruises haven't healed yet from the last trip!
Fast forward to today....
I get a call from the DAN! doctor this morning. Apparently the labs were drawn. However, the standard metabolic profile had been run and not the comprehensive metabolic profile that the doctor needed. UGH! So, I spent another day on the phone between the doctor, the surgeon's office and the lab.
I think. I think the correct lab test was ran this afternoon. Please keep your fingers crossed! I feel like we are on the cusp of getting some answers soon. We're learning bits and pieces but we can't get the whole puzzle to fit together because of these missing pieces.
Oh, and the urine specimine I left of Quest? Yeah, you guessed it. Lost too. I'll be dropping by the lab on my way home to pick up another cup. We'll try it one more time.
In March, we went to Quest for the blood draw. Mommy, full-well knowing there was no way Cole would pee in a cup at the lab, made a special trip to the lab beforehand to obtain the cup so that we could get the specimin at home and take it to the lab with us. So, that morning, Cole and Mommy went to the lab with our orders and urine specimin in hand.
Mommy gave the nurse everything and then we were called back into the room where his blood would be drawn. It was just as horrible as I expected it to be. I had to pin the poor kid down while the nurse fished around for a vein. And, then 3 vials were drawn, all the while he was trying to hit, kick, and throw anything he could find. I'm sure the screaming and hollering could be heard for miles. And, when it was over, Mr. Grumpy threw a handful of bandaids at the nurse and left in tears. It was awful.
A few days later, I got a call from the doctor asking when we were going to go to the lab. I had a sinking feeling. My suspicions were confirmed when the doctor contacted me later that day to tell me that the lab lost the bloodwork. LOST IT!!! Apparently, we got the new girl that day. How perfect.
The only bright spot was that the IGg allergy testing had been sucessfully sent to Altess. However, the rest of the testing had not been done. Nor could Quest find any of the blood to re-test. Their solution? They offered to come to our home and re-draw. Uh, thanks. But, not the point.
Cole was scheduled for surgery just 2 days later. And, I spent those next 2 days on the phone with anyone who would listen. I begged Children's Mercy Hospital to order the same labs and draw them while he was under anesthesia. And, after 2 nerve-wracking days on the phone negotiating between the DAN! doctor, the hospital lab, and the surgeon's office, the orders were written finally!
The day of surgery, I took a copy of the orders with me. I gave them to anyone who would take them. I nagged every single nurse and doctor at every turn before surgery. They all assured me that the lab had been contacted. It would be taken care of.
After surgery, the doctor assured me that Cole was fine. The next question from my mouth, "Were the labs drawn?" YES! Hallejulia! Another trip to Quest was not an experience I was up for! My bruises haven't healed yet from the last trip!
Fast forward to today....
I get a call from the DAN! doctor this morning. Apparently the labs were drawn. However, the standard metabolic profile had been run and not the comprehensive metabolic profile that the doctor needed. UGH! So, I spent another day on the phone between the doctor, the surgeon's office and the lab.
I think. I think the correct lab test was ran this afternoon. Please keep your fingers crossed! I feel like we are on the cusp of getting some answers soon. We're learning bits and pieces but we can't get the whole puzzle to fit together because of these missing pieces.
Oh, and the urine specimine I left of Quest? Yeah, you guessed it. Lost too. I'll be dropping by the lab on my way home to pick up another cup. We'll try it one more time.
Friday, April 10, 2009
Surgery Complete!
Wednesday (April 8, 2009) was the dreaded surgery date for Mr. Cole. If you'll remember, he was scheduled for right hernia and hydrocele repair. He came through it with flying colors and is recovering nicely...even if we did have a few bumps in the road!
We arrived at the hospital at 6:30am with a VERY GRUMPY child! (Can't really blame him for that though!) We checked in and he was immediately taken to pre-op. It was going fairly well, until they asked him to remove his clothing and put on the hospital gown. Woooooah. Look out.... That's when the fireworks started! Mommy had to phsycally restrain him to remove his clothing and put on the gown. All the while, Cole yelled and screamed and called everyone names. He hit and kicked Mommy and tried to hit the nurses too. It got so bad that they kicked us out of pre-op and made us sit by ourselves in the recovery room (which was empty at 6:30am!!) while the nurses prepped us. We met with several nurses, the doctor, and the anesthesioligist, all of whom were greeted with, "Stop it, Dummy!!!" from Mr. Cole. He was given a little sedative and finally relaxed enough to sit on my lap and watch a few minutes of Finding Nemo. Then, before he even had time to react, we put him on the bed and he was being wheeled off to surgery.
The surgery only took 20 minutes and went just as expected. After awhile, the nurses called Daddy and Mommy back to recovery. All of the other parents were holding their children after surgery and we noticed that Cole was nowhere to be found. The nurse, so diplomatically, said that she wanted to give us our discharge instructions while another nurse got Cole up and dressed. I said, "In other words, you want us to get our screaming brat out of here as quickly as possible???" Of course, she said NO!!!! But, we know the truth! :)
Nonnie and Baby Granddad had a balloon bouquet delivered to our house as a surprise for Cole. Within 5 minutes of the balloons arriving, one popped. Poor Cole burst into tears! A few minutes later, another one popped!! More tears. I happened to be talking to Nonnie at the time the second one popped, and she said she would call the florist and let them know. Before I could hang up the telephone, I heard the front door slam. Apparently, Cole was so mad over his balloons popping, he threw the rest of the bouquet out the door!!!!!!! Did I mention he has a short temper?
Anyway, Cole took it easy the for a couple of days but he really hasn't experienced much pain at all. He is doing surprisingly well!
We arrived at the hospital at 6:30am with a VERY GRUMPY child! (Can't really blame him for that though!) We checked in and he was immediately taken to pre-op. It was going fairly well, until they asked him to remove his clothing and put on the hospital gown. Woooooah. Look out.... That's when the fireworks started! Mommy had to phsycally restrain him to remove his clothing and put on the gown. All the while, Cole yelled and screamed and called everyone names. He hit and kicked Mommy and tried to hit the nurses too. It got so bad that they kicked us out of pre-op and made us sit by ourselves in the recovery room (which was empty at 6:30am!!) while the nurses prepped us. We met with several nurses, the doctor, and the anesthesioligist, all of whom were greeted with, "Stop it, Dummy!!!" from Mr. Cole. He was given a little sedative and finally relaxed enough to sit on my lap and watch a few minutes of Finding Nemo. Then, before he even had time to react, we put him on the bed and he was being wheeled off to surgery.
The surgery only took 20 minutes and went just as expected. After awhile, the nurses called Daddy and Mommy back to recovery. All of the other parents were holding their children after surgery and we noticed that Cole was nowhere to be found. The nurse, so diplomatically, said that she wanted to give us our discharge instructions while another nurse got Cole up and dressed. I said, "In other words, you want us to get our screaming brat out of here as quickly as possible???" Of course, she said NO!!!! But, we know the truth! :)
Nonnie and Baby Granddad had a balloon bouquet delivered to our house as a surprise for Cole. Within 5 minutes of the balloons arriving, one popped. Poor Cole burst into tears! A few minutes later, another one popped!! More tears. I happened to be talking to Nonnie at the time the second one popped, and she said she would call the florist and let them know. Before I could hang up the telephone, I heard the front door slam. Apparently, Cole was so mad over his balloons popping, he threw the rest of the bouquet out the door!!!!!!! Did I mention he has a short temper?
Anyway, Cole took it easy the for a couple of days but he really hasn't experienced much pain at all. He is doing surprisingly well!
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