back from stem cell treatment - full version

alex

New member
Well, we made it to Frank?s stem cell appointment and are now back home.

Our flight on Sunday, Aug. 10th, got delayed, due to bad weather. We were sitting on the runway for 4 hours at which point the batteries on the concentrator were running low. When the plane returned to the terminal to re-fuel, the captain told us, that he could not take the responsibility for Frank to continue with the flight, since he wouldn?t have had enough oxygen to get to San Diego. So, we had to de-plane. Very disappointed, we drove back home.

Next day, I rescheduled the appointment at the clinic, the flight, hotel, medical equipment (hospital bed, lift, etc.), and the portable concentrator rental.

We flew out on Wednesday, Aug 13th, without any delays. We arrived in San Diego in the evening after about 5 ? hours flying time. The hotel had sent a wheelchair accessible van to pick us up at the airport.

Next day, was the day ? Frank?s stem cell treatment. Dr. Steenblock?s driver picked us up at the hotel and drove us to Dr. Ramirez?s clinic in Mexico.

Frank was prepared for the catheter infusion. He was than carried on a stretcher into the ?operating room?. Dr. Ramirez, a neurologist, and an anesthesiologist were waiting. They inserted the catheter into a vein in his groin area and then snaked it up to the right side of his neck. At this point, Dr. Ramirez injected the stem cells into the catheter; first 4 vials of the CD34/133 , followed by the mesenchymals. The whole procedure took about 45 minutes. Afterwards, Frank was observed for about one hour to make sure that there wasn?t going to be any bleeding at the injection site.

We returned to San Diego. The wait at the border was about 20 minutes. Not bad according to our driver, who told us, that he had to wait already as long as 4 hours.

That evening and the next day we rested. It was a good thing that I didn?t get a return flight on Friday, because Frank was really tired and needed the rest. We returned to Philadelphia on Saturday.

We are glad to be back home. Frank seems to be more tired than usual. He had no side effects as of yet, such as headache, flue-like symptoms, etc. I am keeping my fingers crossed. What I did notice today, is a sort of ?storming?. This is a word, they used when he was in a coma 1 year ago, when his pulse rate shot up, his breathing sped up ? sort of like a fight-and-flight response. They told me then, that the neurons in the brain are trying to fire, but are not firing correctly. After many storming sessions back then, Frank emerged from the coma. We hope that this is a positive sign.

My problem right now, is trying to figure out what would be the best formula for his feeding tube. I was told to switch to a soy; also I guess we are to avoid sugar. I have been searching high and low, but can?t find anything suitable. I would like to have a natural formula for him, without any of the preservatives. If anybody has any knowledge in this area, I would be most grateful for any help.

So, now we wait ? I am sooo excited.

I will keep you updated on his progress.

alex
 

Kaci's Mom

New member
I was told by Dr. Ramirez to use "soy" too, but...

Hey Alex-
I read your post- sounds like you had an eventful trip!!!
I also see that you were told to
have Frank to switch to soy. I was also told that if I absolutely wanted to give Kaci ANY kind of milk it needed to be "soy". Then I decided to email Dr. Steenblock to ask him a second opinion about that and a few other things (because for one, I had read in his "Handbook" about NO SOYBEANS- which to me seems like soy milk would be made from that.). He said he would prefer that I actually gave Kaci cows milk because he said (I'm quoting this) that "soy milk might have a slight inhibitor activity". He also said to be "moderate with all food intake and exposures". You have a pretty tricky situation beacuse you are tube feeding. I would contact Dr. S. and see if he can suggest something. Good Luck!

Kristin
 
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barbara

Pioneer Founding member
Alex - I would also contact Dr. Steenblock and ask him if I were you. I will also ask Dr. Ghen if he has any suggestions. Your trip was a memorable one for sure. I can't believe how much you had to go through. What a Pioneer duo! It is so nice to hear that you are back. We look forward to hearing more from you.

As for milk, is it needed at all or is it just that Kaci likes to have it on cereal or something?
 

Kaci's Mom

New member
I would also contact Dr. Steenblock and ask him if I were you. I will also ask Dr. Ghen if he has any suggestions. Your trip was a memorable one for sure. I can't believe how much you had to go through. What a Pioneer duo! It is so nice to hear that you are back. We look forward to hearing more from you.

As for milk, is it needed at all or is it just that Kaci likes to have it on cereal or something?
Actually just on cereal. I supplement her calcium, but she likes to eat cheese too.
 

alex

New member
I just sent Dr. Steenblock an email. I can't wait to see what he is going to suggest. I will let you know what he recommends.
 

Mysty119

New member
alex

I am very excited for the both of you and wish you all the best. The problem with the weather was a setback, but at least you made it there!!!
 

alex

New member
Dr. Steenblock's response

I got an email back from Dr. Steenblock. He says that the formula we have been giving Frank is o.k. to continue.

I also asked him regarding turmeric and ginseng - No to turmeric, yes to ginseng.

I am also to hold of on any other type of supplements.

Regarding hyperbarics, Dr. Steenblock wants us to hold of for a minimum of at least 2 weeks, preferrably 3 month before resuming.

Barbara,

Did you get a hold of Dr. Ghen. I am interested in what his opinion is.
 

barbara

Pioneer Founding member
Dr.Ghen

I sent an e-mail to Dr. Ghen as this is how I communicate with him. As soon as he replies, I will post it as I am also curious as to what he will say.
 
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