I jumped the gun a little and misunderstood when we were to start the meds. Until we are done with the Food Desensitization appointments, we are only to administer the B12 shots (Monday, Wednesday, Friday) and the Digestive Drainage. After Jackson’s two Desensitization appointments Monday, we’ll be clear to start the medications, herbs and supplements.
Misha and I discussed it and I’m stopping the Stanford Research study I was involved in. I’m not one to quit something, and as much as I still want to go learn, I’d rather spend the 3 hours with my family. Now that Jackson has the prognosis of recovery, I want to concentrate on him and continue my studies on Google University. While on my Yahoo group for Autism/Lyme, someone posted a link that I thought was so interesting (get ready to read subtitles): http://www.youtube.com/watch?v=yOno_2m_8LY&feature=youtu.be
Treating Autism with antibiotics? I know it’s not that simple, but there have got to be some advances coming besides relying solely on behavior therapies (which didn’t work for Jackson). Jackson will be starting antibiotics at some point. Our next appointment with the doctor (for Jackson) is March 26th, and I’m wondering if we’ll start them then.
Misha and I have our initial consultations/blood draw tomorrow. I’m interested to know what the plan for us will be. I’ll keep you all posted!
Misha and I just began watching Under Our Skin (www. underourskin.com):
“A gripping tale of microbes, medicine & money, UNDER OUR SKIN exposes the hidden story of Lyme disease, one of the most serious and controversial epidemics of our time. Each year, thousands go undiagnosed or misdiagnosed, often told that their symptoms are all in their head. Following the stories of patients and physicians fighting for their lives and livelihoods, the film brings into focus a haunting picture of the health care system and a medical establishment all too willing to put profits ahead of patients.”
I can’t wait to finish it tonight. It is hard to believe there is so much controversy and divide over Lyme Disease and it’s treatment. The film furthers my questioning of how many people (kids especially) have Lyme Disease without knowing it.
If you do get a chance to watch Under Our Skin, please let me know what you think. It’s eye opening for me.
Jackson is the best, period. He goes with the flow and takes each moment as they come, and I love that about him. Our day began by going to the doctor. He drew the blood with an assistant nurse while Misha and another nurse held Jackson down. I had the most important job of holding the iPhone showing his favorite movie, the Little Mermaid. Our doctor had to poke Jackson twice to get 4 large viles of blood. Jackson is my little trooper.
While at at the office, Misha and I scheduled our initial consultation appointments to discuss out action plan. We’re going this Thursday, each for an hour long appointment and blood draw. Though expensive, we want to make sure we are as healthy as possible to be the best parents and to keep our family strong.
Jackson usually naps 2 hours in the afternoon, but my little trooper kept on trucking along for his next appointment in Los Altos. Food Desensitization. I’m still trying to figure out how it all works. Below is the machine that was able to give me a print out of all of the foods, supplements and environments that Jackson is sensitive to. Quite amazing. Ask me how it works, and I still wouldn’t be able to tell you, but it is FDA approved, and the results will help Jackson be able to absorb all the new medicines, supplements and herbs that he will be taking.
I snuck a picture of it. I had my hand on the blue/silver thing, Jackson was on my lap, and I had my hand on his back. With me as the surrogate, the computer was able to read Jackson’s sensitivities. We go back tomorrow, and twice next Monday. Then, Jackson should fully be ready to take and absorb all the meds we’ve got for him. I just started this book recommended. Maybe after I read it, I’ll be able to explain it better.
Does that mean Jackson doesn’t have to be GFCF? Nope, he still has to be on it. Actually, our doctor said it’s very important that Misha and I also follow it. The journey continues.
In a few minutes, Misha, Jackson and I are off to Los Altos to get Jackson’s blood drawn for the compete Lyme test. Now that we know he has it, the doctor wants this test done, which will give us a lot more information about the Lyme in Jackson’s body. Misha and I are also going to set up an appointment with him to begin our treatment (whatever that may be?). I am going to ask how important it is for Misha and I to be GFCF. I’ve been GFCF since Friday, and it’s going fine, but it takes a lot of planning.
I went to Whole Foods yesterday to pick up a few things on my list, but I turned out to be there for an hour and a half scouring the shelves for alternative GFCF foods. There are a ton of Wheat Free/Dairy Free foods out there. Here are some of the bars I found:
I had to get the chocolate chips. Anyone who knows me knows my chocolate obsession. I think my favorite discovery yesterday was GFCF mayonnaise. My parents came on Saturday to visit, and I really wanted to make us tuna fish sandwiches, but then remembered I cannot have mayonnaise. Check out my lunch plan today:
I’m going to try to get Jackson to eat the tuna fish also…I’ll keep you posted!
We did it! Jackson’s 7 morning medicines went down without too much of a fuss. It’s definitely a 2 person job, but we did it! Feels so good! This isn’t going to be so bad after all since Jackson is the best little boy!
Yesterday was a little stressful thinking of how to get this list of meds into Jackson’s body. Today, I met my new best friend: a plastic syringe!
Misha gave Jackson his B12 shot in his tush this morning. Jackson took it like the champ that he is and didn’t complain. The doctor said to start one new med at a time, so this morning, I gave him Lyposomal Glutathione:
It’s actually just a 1/4 teaspoon clear gel liquid (kept in the refrigerator), but we mixed it with some of our morning green juice and syringed it into his mouth. It was a 2 person job…Misha held him and I squirted. He didn’t exactly like it, but it was over in 5 seconds, so it wasn’t bad! This syringe is going to be my best friend!
We also gave him Nyastatin (an anti-fungal). Our doctor said Jackson will be on this for a while.
He took this like a champ! By next week, we’ll hopefully be up to Jackson taking all his meds and getting into the syringe routine.
When I was still on the Autism path, while reading Jenny McCarthy’s books, she mentioned the name Stan Kurtz. He advocated with her toward the biomedical side of Autism, including DAN (Defeat Autism Now!) doctors. He “recovered” his son, Ethan, and actually started a preschool down in Southern California. I remember sitting up late at night watching videos of Ethan before and after and believing in my heart that I would find a way to recover Jackson.
These websites inspired me and I hope you get a chance to look at them:
He’s all about the GFCF diet and treating the child from the inside out. Watch the videos of Ethan!
Here is Jackson’s stash of medications, supplements and herbs. We’re treating the viruses, parasites, yeast and worms first and then moving in on the Lyme (hopefully in 5 weeks).
Today, I tried giving Jackson Citramin. It doesn’t say what it’s for on the bottle, but if the doctor says to do it, I’m in.
I’m supposed to give one pill a day. These are big ol’ pills. I broke open the capsule, hollowed out 2 pieces of banana and one strawberry and divided up the powder. Jackson was really hungry after waking up from his nap at 3pm. He hadn’t eaten anything since 9:15am. He immediately went for a banana, ate it, then looked at me. He knew something was in there and he didn’t eat the other piece of banana or strawberry. I didn’t want to shove it in his mouth because I don’t want him to be scared of food. I left it on his tray the rest of the night and he didn’t touch it. I’ll be trying again tomorrow!
I’m realizing Jackson will not be eating much non-medicated food anymore. With all the pills and gels and drops I need to get into his body, every bite he takes is going to have to count.
Stay tuned for tomorrow…Misha and I will give him his first B12 shot. I’ve heard great things about these shots, that they give you an instant energy. I kind of want to steal one from him to try it myself:)
Please, please, please…any ideas on how to get Jackson to eat/swallow pills, let me know. I need all the tricks I can get. I really wish everything came in the form of a shot. Life would be so much easier. But, it is what it is, and I will figure it out for the good of Jackson!