Monday, April 19, 2010

Why Stem Cells?

I thought I would take a brief moment to talk about why I chose to go ahead with the stem cell treatment for Patrick right now. Stem Cells are one of those topics that in the U. S., our government has managed to keep the public guessing about. If not guessing, there is such a plethora of mis-information floating around out there that it is hard to adequately describe what we are doing to each and every person I speak with.

Every time I was pregnant with one of my children, I was given brochures on banking cord blood. My ob-gyn was the person who first told me about the importance of saving a child's cord blood because it is full of "stem cells." She gave me brochures from a couple different companies that explained "stem cells" and "master cells of the body" very simply and thoroughly. The brochures explained how I could save this precious cord blood in the event of my child being diagnosed with a disease or having some sort of exposure that caused irreversible harm, that I could probably use the stem cells to heal him.

By the time I had child #4 I saved his cord blood at one of the "cord blood banks."

That also started me thinking.....if this would work for a child who had his stem cells saved, perhaps Patrick could benefit from his younger brothers Joe's stem cells. This was in 2005 when I started trying to find the answer to this question.

I eventually stumbled on a great paper by a Dr in California. This Dr was a bit older and no longer practicing, . The paper was very obscure....not sure how I even found it. I would sit around just googling different variations of stem cells and topics related to children and autism. I printed out this entire 40 plus page paper and read it over and over. I eventually ended up putting it in one of my files and placing it on the back burner.

Right around the time I had Joey (my fourth) in 2005, I ended up having a conversation with the late Dr Rimland regarding stem cells and this wonderful paper I had found. In 2005, I was not even able to google this doctor or find the paper. Luckily, I had kept a copy. It must have been fate, but this man turned out to be a personal friend of Dr. Rimland's. I ended up speaking to him on the phone. By this time he was officially retired and not even researching any longer but he felt that the stem cells were still a really solid option.

I have touched base with him a few times over the years. I vacillated around back and forth about when the right time to actually do the stem cells for Patrick would be. Would it be when he was really acting out, his yeast issues in his gut were flared up and we were seeing a lot of stimminess? Or when he was acting much better, his yeast and bacteria were down, his overall general health in good shape? Would that indeed be the time?

In 2008 I had studied several clinics and in conjunction with one of our main autism specialists in Florida, had a couple of clinics that were highly recommended. I was extremely close to going ahead with the procedure then. I think at the time, Patrick was still heavily chelating, so I decided that we would get through all of that and then let things settle out. The thinking by everyone on the "team" was that we would see where the metals were after we finished the IV chelation. It was a hard decision at the time, but now I am very glad we waited.

At that time we were still looking at the Costa Rica clinic. It was funny, I remember that during the planning for our 2008 local FEAT walk that several of my friends were helping put together goody bags at the chairpersons house and she was running me down for thinking about taking Patrick to Costa Rica for medical work. Several of the other moms told me and mentioned her issues that she voiced regarding Costa Rica. I thought it was comical at the time. We had just returned from an extended visit to Central America; specifically Honduras, Belize, Costa Rica, and Guatemala.

I think that many Americans don't realize the extend of solid medical procedures that are being performed in other countries. Are there charlatans out there? Why, yes. Snake oil Salesmen? Emphatically yes! But there are good doctors and good procedures. By working with my doctors in the US I have been able to find good clinics with a medical director and doctors who have graduated from Harvard Medical School. All of the doctors have been educated in the US and most are from the US. The head of the clinic is speaking at a medical symposium in Miami next week.

The way I have always felt about Patrick's autism is that I want to help him live life to it's fullest potential. If I were a child I would want that from my parents. I know that my own parents would have not been forward thinking enough to have stepped out like this when they were raising me back in the 1970's and 80's. However, I don't even think of the stem cell treatments as anything "crazy" or "out there". I just think of them as an option in the medical portion of Patrick's therapy. I feel really fortunate to be able to do this for him.

I would urge any parents or person who is reading this and considering stem cells to do your own research. And do it well.

I am documenting Patrick's behavior and medical issues very carefully before, during, and after the procedure. Hopefully our information will help other parents make decisions. I plan on letting everyone know our results...the good, the bad, the non-existent. I am praying for the good. Please join me in doing that.

Wednesday, April 14, 2010

Healing Patrick's stomach issues

After speaking with one of Patrick's doctors, Scott Smith, last week; Patrick got a couple of new prescriptions to help with our ongoing battle with the yeast and bacteria in his stomach. We luckily have been doing Oat urine tests every month or so. This alone has helped us to monitor what has been going on inside him.

Bless his heart is all I can say. We started out battling some major bacteria. As Scott gave him a round of vancomycin, liquid septra, and diflucan it really helped to fight off the bacteria. His behavior was terrible before we treated the bacteria, and also during the die off. We did a follow up OAT which showed the bacteria was back in balance, also that his probiotics were now in balance. However, his yeast which should have been around 40 ended up being around 660. This is off the graph.

Scott prescribed him another round of septra along with keto for the yeast. This is working great because I think he had developed somewhat of a tolerance to the Diflucan. After about two days we could already see a difference.

We are trying to make sure that his stomach is balanced before we do the stem cell treatment. We are going to do another OAT test in about two weeks. Patrick has an IVIG treatment this Thursday with his Dr. in Nashville. This will be the last one he has before the stem cells on May 10.

The great news is that just from the new meds to fight the yeast he is acting SO MUCH BETTER. We had a great weekend. Patrick started using some really good, spontaneous language on Friday. It has been so wonderful. I am adding a few pics on here of him painting with his brothers and sister last night. He probably did the best job of all four of them and even made the less mess! It was so nice to see him being so typical and enjoying himself with his siblings.

I sent his supplement list and the short list of any meds he is on to the Stem Cell Clinic last night. Luckily he is able to keep taking everything in the weeks leading up to the trip. He is so excited , he keeps "reminding" me that we are "going on vacation" to "Costa Rica." He is very interested in the "airport," "beach," and "swimming pool."

Thank you all for the prayers!!!

Monday, April 12, 2010

Stem Cell Journey Update

Whew....we now have 11 people going on our Costa Rica trip. We have been down at the post office getting the kids passport information mailed off today. Several of the other adults going are also getting rush orders put on passports as well. It feels like we had a million little things to do today.

I have preliminarily looked at flights but plan to sit down with that a little later today. Same with the hotel. The Stem Cell clinic actually sent me a long list of hotels. If we choose one from the list they will provide transportation back and forth to the hospital. I am pretty sure that we will choose one from the list. Several have apartments or suites similar to Residence Inn.

We leave on Saturday, May 8 and then we depart back for home that following Saturday. Patrick starts his stem cell treatment on Monday, May 10. He will go every day for an infusion of stem cells (Monday thru Friday). He keeps asking me about "Costa Rica" and "vacation" so he is really excited!

My four year old has decided that he wants to go on a "zip line." :) Hmmm....we'll see. Patrick is most excited about the swimming pool.

As I get more of the little details out of the way, I will turn the blog more toward the medical side of things plus I will give updates daily when we are actually there.

Friday, April 9, 2010

Follow our Stem Cell Journey

Today we took the first step on our "stem cell" journey for Patrick. I have studied stem cells for two years and did my due diligence on finding a company that was legitimate and a good fit for our family.

Luckily, our Doctor, Scott Smith, of Melbourne Florida had introduced us to the Cell Medicine Institute. When we first looked at Cell Medicine they were operating solely out of Costa Rica; they are now operating in Panama City, Panama and San Jose, Costa Rica. Both clinics are identical so we chose the Cima Hospital in Costa Rica.

Scott has several children that are patients who have went to this clinic recently. These kids are seeing astounding results. I went ahead and booked the appointment today for May 10. We fly out for Costa Rica on May 8. I also got some exciting news tonight, my parents are going with us!

Hopefully, Ms. Joni our behavior therapist can go with us as well. As soon as I hear from her tonight, I am booking our flight. We are all excited about this journey and I feel like we truly made the first step by booking the date today.

More to follow very soon!

Sunday, April 4, 2010

Spring is in the air, and Patrick is on the move

Whew, spring came in with a roar! It is so nice to see these warm and sunny days. The kids have been enjoying being outside and of course they liked the Easter Bunny's gifts that he left here. You will notice at the left that the kids had a St Patricks party with Ms Joni. I think they were pinching her because she didnt have her green on.

Patrick made it out to explore the world while staying at his Gram's house in Mayfield. He wandered off the playground and into a house next door. However, the people happened to be out. He just let him self in and started to watch their TV. Meanwhile, the entire rescue squad, a helicopter, all police departments and over 80 volunteers were searching for him!

We were very lucky that our situation had such a good ending.

Now comes the big part. We need to get together and help each other. We have another child that plays with Patrick one day per week. He is so cute! His parents like the social interaction that is he getting. It is so refreshing to see them all together. I wish that we were able to offer schooling in small group settings that was private. We are so unfortunate in our state (Kentucky). I am blessed that I enjoy the homeschooling we do and of course that I have Joni to help with Patrick's schooling. There is such power in numbers! Our state needs to provide some alternatives for parents where schooling is concerned.

We have had a lot of fun on break days with horse back writing, Easter Egg hunting, and doing all kinds of crafts for Easter.

Overall we are making it one day at a time, luckily they are mostly good days too!