The Adventures of Jonathan

New Adventures

2011-01-16T20:01:00.001-05:00

Well It has been along time since the last post. Nothing new had happened. Well this week we are starting a new adventure. We are seeing a Doctor in Plain View NY who Uses Transcranial Direct stimulation. You What is That? Well they use a device that give a low electrical stimulation to certain parts of the head. The theory is it helps these parts of the brain to wake up. The goal is to get Jonathan to talk or at least to try. Yesterday he made a sound that was thought to mean Home. We will see if this continues today. I will post more if and when it happens

Dr. Stewart Visit and Our Progress

2008-12-09T15:55:00.006-05:00

Well we saw Dr. Kendall Stewart in Austin TX on Monday. Our tests on our hearing and hearing reflexes were mixed. No Reflexes in our left ear this time but he said that is normal as they will fluctuate until we are Better. Our OAE test was awesome it was much more normal than ever before!!! So we know that Jonathan is hearing us better and his nervous system is able to receive the data and process it. We have always had trouble processing auditory input.

We also didn't have to hold Jonathan down so that they could do the tests this time. He was so calm and just sat there with the test things in his ears!!!! I can't express enough how big a deal this is for us. In the past we have had trouble getting the testing done because of how much Jonathan would fight and move. This time his dad held his hands and he didn't even fight to have him let go. I usually hold his head still which takes 2 hands and lots of strength to keep him form shaking the probes out. This time all I did was stroke his cheek and head and he just sat there!!!! Too awesome for words to express our excitement!!!!!!

Then our next big wow came on the flight home. Jonathan was actually looking out the window of the airplane and noticing the clouds, the ground below and how close or far it was. It was like he was seeing something totally new. Like when a baby first discovers his hands. Jonathan has never examined anything like this ever before. This reminded us of our other "normal " son the first time he understood what flying was. How intently he examined every little change as we flew. This is so huge to us!!!! We are super excited!!!

Now I guess I will explain what we are going to be doing from Dr. Stewart. Dr. Stewart is always researching ways to help our kids and his latest findings show that our kids Have low Homocysteine levels which is all part of the bodies methylation process. And at the top of the process. So in order for our bodies to make Homocysteine we need 3 things Methyl b-12, Methyl-Folate and P5P. Since our kids don't have good stomach and intestine processes it is very hard for them to absorb this nutrients orally. Also since the whole Methylation process is messed up they can't convert B-12 and Folate into the Methyl kind. So we will be using shots of these 3 compounds to get this into Jonathan. We had tried the Methyl-B-12 shots before with not much result. But if he was low in the Folate and P5P his body couldn't produce the Homocysteine which is the building block for the whole methylation process.
The other missing piece is low Dopamine levels. This is why our kids stim and don't sleep well and a bunch of other issues too. So we will be starting on a product called Neuro-Transmitter Support by Neuro-Biologix to help with the dopamine levels. It should be no more than 4 weeks before we start to notice changes. So I will post again as things happen.

Gains since Last Stem Cell treatment

2008-11-10T11:14:00.002-05:00

It has been about 2 months since we went. We are seeing small steady gains. Things we are seeing: more eye contact, following directions better, seeming like he understands things in general better, more little sounds that seem to go along with nonverbal communication, more determination in getting what he wants, improvement in self help skills. We are still hoping to get a big jump on talking but we will have to wait and see.

Jonathan's 2nd Dose

2008-10-08T10:46:00.002-04:00

As dad went to hospital for the procedure...

I (dad) will attempt to give a rundown on how it went. We were driven from the hotel to CIMA hospital - private, owned it seems by GlaxoSmithKline.

We waited about ten minutes to be brought back for the procedure. Jonathan had fasted 8 hours before and had little tiny scrunched up veins (we normally fill him with water before a known "stick"). The anesthesia was by IV and it took some doing to get a vein (I lost count of the attempts - this has happened here in the U.S. as well - been there,done that, hated it!)

Once sedated it took less than a minute to administer the stem cells into his spine.

About fifteen minutes later we were in the lobby waiting for our ride back to the apartotel. With travel we were away for less than two hours.

Now we wait! This is the hard part. We have had many interested queries from friends and family -- nothing to report yet!

2008-09-18T10:25:00.002-04:00

Jonathan's First Spinal Stem Cell Treatment

I'm the dad, standing in for the missus as I went to hospital for the treatment.

After our driver brought us to CIMA, a brand new hospital brought to you by GlaxoSmithKline, we had the usual paperwork before being brought back for the procedure.

Due to some confusion as to the time of our appointment, Jonathan had not fasted for the full time. So the choice of anesthetic was changed - this meant that he would not be "out" as deep, and would take longer to return to an alert state. Lesson - fast for eight hours! The cells had to be used same day or they would be wasted.

We were brought back to the treatment area, a set up which looked similar to an ER area at home. A vein was found without too much difficulty -- normally a challenge! He was sedated by syringe, it didn't take long to go out.

Then the area on the lower back was treated with antiseptic/analgesic - which had to dry for a bit before continuing. The Dr. showed me the fluid from the spine after the puncture, assuring me that it was a good "stick". He then made sure I looked at the syringe for Jonathan's name before administering the cell laden fluid. The actual administration of the cells took less time than typing this paragragh.

It took 30-45 minutes before Jonathan was awake enough to move - he took a nap after they were done with him. When he woke up he thought he was ready to go - NOT-- it took a few more minutes before he could walk - assisted! -- and we returned to our home away from home.

Jonathan's cerebral/spinal fluid now contains the matched adult stem cells. That was yesterday, tomorrow the second and final dose. I will report on the difference in the procedure with the preferred anesthesia.

Finally arrived in Costa Rica

2008-09-15T21:21:00.000-04:00

We got here!!! We sat for 2 hours at Newark waiting to take off!!! Part of it was weather here and part of it was traffic at the airport. We got in at 11:45pm eastern time. Then you have to go through immigration, then get your bags, and then go through customs. We finally got to the hotel at 1 AM eastern time. Needless to say we are a bit tired to day.
The boys did great!! Christopher slept for about 2 hours on the plane. Jonathan didn't so he is a bit tired. We will take it easy to day just get the rental car and go to the grocery store.
We had eggs with cheese and pepper and gallo pinto for breakfast. Also a corn tortilla with ham and cheese. plus all of the usual Costa Rica accompaniments like ham and cheese, fruit, a yogurt drink, local fruit drink, and bread.
Tomorrow is our first appointment at 7:30am to get blood draw to match the stem cells. Then our next appoinment is on Wednesday at 10:30pm to get the first stem cells in the spine. Mark will go with Jonathan and I will stay Christopher.
We plan to go to Poas Volcano and do a tram ride through the rain forest on tuesday and wednesday. Thursday we might do a coffee plantation.
We will keep you all posted as to our adventures.

Costa Rica Here We Come Again

2008-09-05T15:40:00.001-04:00

Well we have one week and one day before we leave for Costa Rica again. We will be getting more Stem Cells. This time we will get them in our spine instead of intravenously. We are told they have been getting better results doing it in the spine. We are anxious to get the Stem cells and see some progress.

We are still seeing small changes with Jonathan. He is more interested in the world around him, he is not totally mute, he is laughing a lot more and making little sounds to emphasize his nonverbal communication. We are hopeful we will see much bigger changes with this next treatment.

We will post while in Costa Rica and after we get home as we see changes.

Some exciting news

2008-04-24T10:21:00.002-04:00

Jonathan had his appointment this week with Dr. Kendal Stewart in Austin Texas http://www.neurosensorycenters.com/index.html . For those of you who haven't heard of Dr. Stewart, he specializes in healing the nervous system of viruses, toxins, bacteria, etc. He uses machines that test for the inner ears reflexes, to access the health of the nervous system. Jonathan has never had normal function of these reflexes. We have, however, had some reflexes work better when he was on antiviral medication but never all of them and never consistent across the board. Yet, this time ALL of his reflexes were NORMAL!!!!!

Dr. Stewart was very pleased and told us the only thing that caused this were the Stem Cells Jonathan received in Costa Rica!!!! For the first time in Jonathan's life he is receiving consistent input to his nervous system!!! So all of the small changes we are seeing are because his brain is finally learning to process the information he is receiving from his 5 senses. This is AWESOME news for us. All of the minor changes we are seeing are the building blocks for bigger things to Come!!!!

Some of the changes we are seeing are: better attention to items in his environment, better attention to tasks at hand (such as, he can now drink out of an open cup!! He`never had the attention before), following directions better and faster, he seems to understand more things that are said to him, enjoying being read to while being calm, and paying attention to what is being read. He is able to relax, stim less, sleeping better and more soundly, not stimming while riding in the car but looking at things. His feet are not toeing in as much and his balance is better, lastly, he can communicate his needs and wants with nonverbal cues more consistently.

We are very excited about the changes and are looking forward to seeing more.

Changes after Stem Cells???

2008-01-26T13:06:00.000-05:00

Well I am not sure if this is because of the Stem cells or not but I did want to share a change.
First we have all been sick this week with a very nasty cold. My husband and I started first then my 6 year old started with it about 3 days later Then Jonathan started about 12 hours after his little brother. My husband had a high (102-104) fever during the first few days of the virus my youngest also did. Jonathan hasn't run a fever since he was 3 1/2 not even when he had pneumonia but he is running a fever. His has been between 101-103.5 so I am not sure what to make of this. This is the kid who is never sick or only has a virus for a couple of days with hardly any symptoms and now he is responding to illness like the rest of us.

The other odd thing with this is that he has not had one seizure while sick with this. On the occasions when he would catch something he would always have seizures at the onset of the illness. When he was little and did get fevers and react to illness normally that was the only time he had seizures. So I am wondering if the stem cells have normalized his immune system? I guess we will have to wait and see.

Pictures from Costa Rica

2007-12-06T17:03:00.001-05:00

The Volcano Irazu Crater with lake

Poas Volcano

The Lagoon Botos (old crater) at Poas Volacno

A Howler Monkey at Arenal

A suspension Bridge on the trails at Arenal

The Arenal Volcano

The Pacific Ocean in Quepos

An Iguana on the beach in Quepos

Costa Rican Adventer part 2

2007-12-04T22:00:00.000-05:00

Well today we didn't have to be to ICM until 6:30pm so we went and saw the Volcano Irazu. It is not an active volcano right now so nothing spectacular. We did see the crater and the ash fields. The crater has a lake in it. It was very beautiful.

At 6:30 we went and got our first treatment with the stem cells. They used 2 syringes full of the 2 different kinds of stem cells which they injected through the IV line. It only took a few minutes. Jonathan wanted to take one of the nurses to go with us. He always has liked pretty girls. Tommorow we will go back at 2:30 for our next treatment. Now I guess we must wait and see what happens.

We have met quite a few people both children and adults with varying disorders all hoping for a wonderful outcome. We hope the same for them and us.

Costa Rican Adventure

2007-12-03T21:30:00.001-05:00

Well our Costa Rican Adventure began on November 28th. We left RDU at 7:15am. We landed in Miami at 9:15am. Left Miami for Costa Rica at 12:15pm and Arrived at 2:00pm in San Jose. Everything went well at the airport. There was a Sky cap waiting for us as we got off the plane. We did have to wait for Jonathan's wheelchair and get the stewardess on our plane to explain to the skycap that we had it and get the baggage handlers to send it up to the Jetway. We then proceeded through the airport with the skycap who escorted us to customs. We didn't have to wait in the very,very, very long line but were taken to the handicap lane and only had to wait for 2 people in front of us. Next was baggage claim. It took a long time for our luggage to come out and our luggage sustained a lot of damage. Next we had to go through and have it xrayed. We then went out of the airport and met the car rental rep. He made a call and a few minutes later our car came and we were taken to the car rental office to sign all the paper work. They gave us a map and directions to get to the hotel. After only a minute or 2 of driving we got honked at. People are not very patient on the roads here and the roads have no names on them. We arrived at the hotel after a difficult drive (because of no road signs) and settled in.

November 29th we left San Jose for Quepos. We knew it would be a very long drive so we left early in the morning. All was going well until we went through a little town North of Colon an ended up on a smaller road that then turned into a very windy dirt road that did s's up and down the mountain side. The phrase now for our adventure is "bus to Carthagna" from the movie Romancing the Stone. We finally made it to Quepos around 1:30pm and had lunch before checking in to the hotel. After checking in we went to see the Pacific ocean. We came back and went for a swim in the pool. It is very hot and humid in Quepos. We then went to eat at a neat restaurant that had as its bar a C123 from the Iran Contra scandal. We got up early on the 30th to take a nature walk. Well we found the trail to be a bit dangerous!!! (Bus to Carthagna) Surviving that we left for Arenal Volcano.

November 30th we drove to the Arenal Volcano. We found a much better route there than to Quepos. We also found a policia (police) yes we were pulled over for speeding in a foreign country. Well we didn't get a ticket because we explained in very broken Spanish to the cop who only spoke very broken English that we were here visiting for medical treatment for Jonathan. He very nicely warned us to slow down and we did. we arrived at the volcano about 3pm and got settled in. There were clouds covering the top of it so we couldn't see much. But just after sunset the clouds cleared the volcano rumbled and proceeded to erupt for several hours. Our youngest son said it was "God's fireworks". The next morning we went for another nature walk this time with a guide to look for wildlife and at a waterfall. This was not as dangerous as the day before but proved to be difficult for Jonathan. We all finished safely and took the ride back to the hotel. We had not seen much wild life but our guide spotted a howler monkey so we stopped to take pictures. The next morning the volcano was erupting again and the clouds were letting us see the top and the hot rocks rolling down the side. We then left for San Jose. We arrived around noon. We got settled in and went to a Rosti Pollos (roasted chicken chain here) for lunch. After lunch we thought we would be a bit adventurous and check out the local shopping areas. We drove to them but there was no place to park (think downtown in a big city with roads only wide enough for 1 car) so we went back to the hotel.

December 3 we went for our first appointment at ICM. They put Jonathan to sleep and proceeded to put in an IV line in and take blood. It took 4 tries before they got the IV line in. they then drew blood from it and it blew the vessel before they got all the blood they needed. 2 sticks later they got another line in. They then got blood from his other hand which they had to stick several times to get any. After waking up we left the clinic and went back to our hotel to get Jonathan his breakfast. We then left for Volcano Poas. We arrived there around noon and ate lunch. We walked to the top of the crater only to see clouds. We decided to go to the Botos lagoon (used to be where the volcano erupted). We were able to see that and proceeded to walk back to the crater. When we got there the clouds had cleared and we were able to see the mud bubble and even spout like a geyser.
Tomorrow we go back to the clinic at 6:30 pm to get our first stem cell infusion.

Stem Cell and our Texas Doctor

2007-10-17T17:26:00.000-04:00

Well we had an appointment with Dr. Kendall Stewart (http://www.neurosensorycenters.com/). He is in Austin Texas. We trust and value his opinion very much. He is very cutting edge when it comes to Neurological issues. We told him we were planning to take Jonathan for the Stem Cell Therapy and he was very supportive and helped us with Jonathan's supplements so that our Stem cells have the best environment in his body to thrive. We were very happy that he was all for this. If there was one Doctor I would want to approve of this it would be Dr. Stewart. He said we had done everything in the right order to prepare Jonathan for this. So I am Super Jazzed!!!! Boy if I couldn't wait before for our visit now I really can't wait!

Now some of the things Dr. Stewart told us. First it was good to Chelate before getting the stems cells. Heavy metals are toxic to stem cells so they will die if you have heavy metals circulating in the blood. So we will not be doing anymore chelation for a while. We have addressed Viral issues and bowel issues which will help his immune system. We also will be taking 10 mg 2 x a day of cortef for a week before through a week after receiving the stem cells to help the immune system not be over active.

Stem Cell therapy trip Plans Part two

2007-10-10T21:30:00.000-04:00

We I believe we have done everything we need to for our trip. We have booked a flight, hotels and rental car(for sight seeing outside of San Jose). We have secured a loan from our credit union to finance our trip. We plan to arrive a few days early and see a volcano, rain forest, and the pacific ocean. Now we are waiting for our passports to come. We expedited them so they should be here in 3-4 weeks instead of the usual 8 weeks. We will start checking on them on the 23rd. We are eagerly awaiting our trip and hoping it helps our son.

Stem Cell Therapy Trip plans

2007-10-04T16:39:00.000-04:00

Well we are busy making travel plans for our trip to Costa Rica. We have applied for passports, gotten plane reservations, a hotel (the Cristina http://www.apartotelcristina.com/english.html ). We are working on a car so that we can do some sight seeing while we are there. This Website has been a great help in planning our trip: https://www.centralamerica.com/cr/ Also the People connected with The Instutute for Cellular Medicine have be very helpful. I wish we had passports already if we did we could have gone in October. Instead we will be going in December. We are still waiting on getting the information for financing the trip. I hope we get that information soon. Well that's all that's new for now.

Autism and Stem Cell Therapy the Final Frontier?

2007-10-03T10:41:00.000-04:00

Our newest adventure is beginning and I want to share what we have learned about the Stem Cell therapy and why we feel we must do this. I have been watching the progress with stem cells for a very long time. It all started when Jonathan was diagnosed with lack of myelin. At this time the Internet was new (1994) but thanks to my brother I had Internet access starting in 1992. I searched and searched for information. Finally I came across a group doing research on ways to remyelinate the brain. That group the Myelin Project was founded by Augusto Odone who has a son with ALD who was trying to find a cure for adrenoleukodystrophy. There is a great movie called Lorenzo's Oil about their son and their fight to help him.

The Myelin Project has been doing stem cell research for many years. They are a consortium of doctors from all over the world doing research and sharing their finds with the group to better facilitate progress. There website is http://www.myelin.org/ They have done some clinic trials with varying results.

It was only recently while surfing the web for new information to help Jonathan that I discovered that several places were doing Stem Cell therapy now! Wow I thought. So I researched several of the places. (The Institute for Cellular Medicine, Stem Cell Biotherapy, Medra inc.)

We decide on the Institute for Cellular Medicine For Several Reasons. First they don't use Embryonic or fetal stem cells. They only use cord and placenta cells. They seemed to have the most information on their website not just about them but also with information from outside sources. They were able to explain everything to use very well. They have addressed compatibility issues. They have treated a few children with Autism and many adults with neurological issues.

Since we have tried everyting else that is out there we feel like this is our final frontier for Jonathan. There is nothing else new at this point that we haven't already done. So we feel this is our only choice to help Jonathan.

I will be adding website links to my site as I have time. I will also be adding some video links. And eventually some video of Jonathan now and as we get the treatment and any results

A Brief History

2007-10-02T20:28:00.000-04:00

Well as the title of this blog says this is an adventure. It all began the last day of December 1992. Jonathan was born a happy healthy baby, with good apgar scores. We spent about a hour with him and then they took him to the nursery for his "newborn checkup". When they brought him to my room a little while later he was sleeping. Being first time parents we had signed all the consent forms that were handed our way. Little did we know this would change Jonathans life for ever.

He got the Hep B Vaccine before he was 2 hours old. The 2 days in the hospital we had feeding issues. Jonathan didn't nurse well. He seemed to tired to care about eating. They sent us home and he still wasn't eating well. We took him to the Doctor at a week old. He had lost almost 2 pounds. The doctor said we should try formula and he sent us home with some. We proceeded to try to get him to eat but he didn't eat much. A few hours later he threw up everything he had eaten and became even more lethargic. We ended up meeting his doctor at the emergency room. They immediately admitted him.

They had a very hard time getting an IV started but finally did. They ran every test they could think of and started him on Gentamycin until the results came back. We started the next day to feed him water. Then we worked up to diluted formula and some breast milk. The test revealed "nothing was wrong". After a 5 day stay we were sent home again. (we found out when we left that they were not sure Jonathan would make it through that first night)

Jonathan appeared to be doing fine. At his 9 month check we were concerned as he was not doing things a 9 month old should do. His doctor suspected he had Cerebral Palsy and referred us to a neurologist. The neurologist didn't think so and ran some genetic and metabolic blood tests. We were scheduled to come back in 4 months. All the blood test came back normal so we were scheduled for an MRI.

The MRI showed a lack of myelin in the frontal and occipital lobes. We were referred to other specialists for poking prodding and more tests that came back normal. Another MRI after 9 months. We had some improvement in the myelin but still not normal. So now we embark on therapy, and more therapy. At 2 1/2 we have our first seizure and at 3 we are told he has autism.

Fast forward to age 5. We get booster shots all except DTP. That we need the neurologist to approve. At 5 1/2 we get the new DTaP. 2 days later we have a seizure nothing like the previous ones which had only occurred before if we were sick. Over the next few months the seizures continue to worsen and get more frequent. By six months post vaccine we have more seizures in a day than we can count. We have tried every available seizure med and nothing has helped. We do some research and bring 2 possibilities to the doctors attention. They are IVIG and Oral Prednisone. We try IVIG first with very little improvement. So we Start Prednisone. With in 3 days we are not having many seizures! EEG's are still very abnormal but at least we are not a vegetable.

We remain on the Prednisone for a little over 3 years. We get a Vagal nerve stimulator and start a new seizure med Keppra. Seizures are better EEG still a mess. 2 years after the VNS it is removed. Seizures still pretty good EEG still a mess.

Since the DTaP booster we have had little developmental progress. We have tried every biomedical intervention and dietary intervention, Chelation, HBOT, antiviral protocols. You name it we have tried it!

Now we are about to embark on Stem Cell Therapy in Costa Rica.