Well, that sucks.
John in NJ
Little things add up
- Thread starter barbara
- Start date
John in NJ
amanda has done stem cells with dr.rader
My journey began on June 19, 1998, when my daughter Amanda was born. The doctors told me that Amanda had Cerebral Palsy. They said that she was very severe and had very extensive brain damage. Her brain scan showed that she had virtually no cortex left on the SPECT scan showed a devastating loss of the cortex. It also appeared that a large segment of the brain was missing due to brain edema. Like any parent I was in shock. I did not know what to do or where to turn.
As the days and months passed by we noticed she was not doing anything that she should be doing developmentally for the age of 9 months. Her head and spine arched back and always stayed on the left side with her head, and her eyes were always rolled up.
At the age of 9 months Amanda started doing Hyperbaric Oxygen. We noticed that her spascity was reduced, she was sleeping better, her nystagma was less and her vision improved. The next brain scan showed that there was more blood flow to her brain. We did Hyperbaric Oxygen for 1 year.
Amanda had turned 2 years old and she was better since the Hyperbaric Oxygen. She still had her head arched back but it was less. Her eyes would roll up less and her spasticity was less also. However, she was still not able to walk, talk, smile, or suck her bottle or look at us.
We heard about Fetal Stem Cell Therapy and I was very excited. I gave it a lot of thought about whether I should take Amanda or not, and I decided I would give it a try since I had nothing to loose because Amanda was already brain damaged enough. I followed my instinct and my heart.
We started to do Stem Cell Therapy when Amanda was 2 years old. Today Amanda is 9 years old and here are the changes we saw in the last 7 years with doing Fetal Stem Cells.
Amanda was not able to suck her bottle at the age of 2 but she now is able to suck her bottle and her sucking coordination came back.
Her eyes are more alive, alert and expressive. She now turns her head and eyes to look at me when I call her but before there was no response. Her hands are now more opened up too. The best thing that I love now is she is able to give me a huge smile. For me that smile means one million words! She is a lot more active and pays attention to what is going on around her and she understands a lot more too.
Amanda is now learning how to crawl, which is so amazing! She is able to stand up by herself for a few seconds. She wants to achieve it so badly that she puts all her energy into trying. We have done EEG?S and it has shown that her readings are much better. She is able to express herself with a sad face and she babbles more. I noticed she understand a lot more now they are periods that she does not eat breakfast and when I tell her if you eat daddy will play with you, within 10 minutes she is done her breakfast. At night she will call me and let me know she wants to drink, and goes back to sleep after her drinking this is a big step for her to call me, she is understanding more and more. Her brain scan showed an increase in the size of the cortex too. And now the best for last she mumbles ?MAMA? which is the best gift she could give me. We have gone for more stem cells and Amanda is improving a lot on her babbling more new sounds are coming out, she could go on for hours now and babble this is new for us. My husband also noticed when we ignore her now she will just look and say out loud HEY, she also is learning how to sit on her own when doing therapy, the therapist holds only her hands and the rest Amanda tries to balance herself. The new thing Amanda has just done is learned how to roll over, just 3 weeks ago I put Amanda on my bed with pillows on each side, I was gone for just 1 minute and I hear a boom, it was Amanda that rolled off my bed and fell on the floor. My god thank god she did not get hurt she landed on her belly. Now I know that Amanda is able to do a full roll over before 3 weeks ago she was not able, she would only go halfway and get stuck, I guess now she figured it out, and I put her on the floor from now on. Now she will look straight at me and start to talk to me in her babbles language. It feels good to have some sounds in the house now. I thank god everyday for giving her a chance to doing Fetal Stem Cells it has changed my life amazing and full of happiness in my heart.
There is a video of Ricci Kilgore she had an accident and left her with a spinal cord injury ever since stem cells with Dr. Rader she is able to walk now. Below is the video just click on the link.
http://www.youtube.com/watch?v=kbozmOL1kSY
If you need any help please email me.
Thank you
Felicia Gallo
email: felicia_gallo@yahoo.com
My journey began on June 19, 1998, when my daughter Amanda was born. The doctors told me that Amanda had Cerebral Palsy. They said that she was very severe and had very extensive brain damage. Her brain scan showed that she had virtually no cortex left on the SPECT scan showed a devastating loss of the cortex. It also appeared that a large segment of the brain was missing due to brain edema. Like any parent I was in shock. I did not know what to do or where to turn.
As the days and months passed by we noticed she was not doing anything that she should be doing developmentally for the age of 9 months. Her head and spine arched back and always stayed on the left side with her head, and her eyes were always rolled up.
At the age of 9 months Amanda started doing Hyperbaric Oxygen. We noticed that her spascity was reduced, she was sleeping better, her nystagma was less and her vision improved. The next brain scan showed that there was more blood flow to her brain. We did Hyperbaric Oxygen for 1 year.
Amanda had turned 2 years old and she was better since the Hyperbaric Oxygen. She still had her head arched back but it was less. Her eyes would roll up less and her spasticity was less also. However, she was still not able to walk, talk, smile, or suck her bottle or look at us.
We heard about Fetal Stem Cell Therapy and I was very excited. I gave it a lot of thought about whether I should take Amanda or not, and I decided I would give it a try since I had nothing to loose because Amanda was already brain damaged enough. I followed my instinct and my heart.
We started to do Stem Cell Therapy when Amanda was 2 years old. Today Amanda is 9 years old and here are the changes we saw in the last 7 years with doing Fetal Stem Cells.
Amanda was not able to suck her bottle at the age of 2 but she now is able to suck her bottle and her sucking coordination came back.
Her eyes are more alive, alert and expressive. She now turns her head and eyes to look at me when I call her but before there was no response. Her hands are now more opened up too. The best thing that I love now is she is able to give me a huge smile. For me that smile means one million words! She is a lot more active and pays attention to what is going on around her and she understands a lot more too.
Amanda is now learning how to crawl, which is so amazing! She is able to stand up by herself for a few seconds. She wants to achieve it so badly that she puts all her energy into trying. We have done EEG?S and it has shown that her readings are much better. She is able to express herself with a sad face and she babbles more. I noticed she understand a lot more now they are periods that she does not eat breakfast and when I tell her if you eat daddy will play with you, within 10 minutes she is done her breakfast. At night she will call me and let me know she wants to drink, and goes back to sleep after her drinking this is a big step for her to call me, she is understanding more and more. Her brain scan showed an increase in the size of the cortex too. And now the best for last she mumbles ?MAMA? which is the best gift she could give me. We have gone for more stem cells and Amanda is improving a lot on her babbling more new sounds are coming out, she could go on for hours now and babble this is new for us. My husband also noticed when we ignore her now she will just look and say out loud HEY, she also is learning how to sit on her own when doing therapy, the therapist holds only her hands and the rest Amanda tries to balance herself. The new thing Amanda has just done is learned how to roll over, just 3 weeks ago I put Amanda on my bed with pillows on each side, I was gone for just 1 minute and I hear a boom, it was Amanda that rolled off my bed and fell on the floor. My god thank god she did not get hurt she landed on her belly. Now I know that Amanda is able to do a full roll over before 3 weeks ago she was not able, she would only go halfway and get stuck, I guess now she figured it out, and I put her on the floor from now on. Now she will look straight at me and start to talk to me in her babbles language. It feels good to have some sounds in the house now. I thank god everyday for giving her a chance to doing Fetal Stem Cells it has changed my life amazing and full of happiness in my heart.
There is a video of Ricci Kilgore she had an accident and left her with a spinal cord injury ever since stem cells with Dr. Rader she is able to walk now. Below is the video just click on the link.
http://www.youtube.com/watch?v=kbozmOL1kSY
If you need any help please email me.
Thank you
Felicia Gallo
email: felicia_gallo@yahoo.com
Thank you
Your stories are so encouraging to the rest of us. All the doctors that I have spoken to have downplayed the benefits of Stem Cell research probably so that it does not provide false hope. While none of you are running marathons, it is apparent that you are getting back a big part of your life again. That is truly great. I have Empty Nose Syndrome and while my illness is is not yet being treated with Stem Cells I hope that it will be soon. I am still very young and hope that a method of treatment using stem cells is around the corner. Thanks for your encouraging statements.
Your stories are so encouraging to the rest of us. All the doctors that I have spoken to have downplayed the benefits of Stem Cell research probably so that it does not provide false hope. While none of you are running marathons, it is apparent that you are getting back a big part of your life again. That is truly great. I have Empty Nose Syndrome and while my illness is is not yet being treated with Stem Cells I hope that it will be soon. I am still very young and hope that a method of treatment using stem cells is around the corner. Thanks for your encouraging statements.
Saturday June 23
Today would have been my grandmother's 128th birthday. I thought I would do an update to celebrate her memory. Last night after I went to bed, I forgot something. I got up, left the nose hose for the cat to play with and went to get what I forgot. Normally, this would cause my sats to drop to 85-88. I got back and I was at 92. Today, I have been the same way. I did a whole ton of stuff and was feeling a little tired because I was driving around in the heat in an old truck with no AC. Normally, when I exert myself this way I drop below 90 with my sats even using O2. I had my O2 turned down and was even up and down the stairs and had been going for several hours with no rest. I checked and I was at 90. In the car earlier, I was able to take the O2 off and maintain 91. My chest really ached all day yesterday. Not SOB or anything like that, an achy feeling like I had thoroughly exhausted myself or something. I think the little cells were working overtime because I certainly am seeing some progress along the lines of better sats with less O2 and no O2. This is just a little something, but I can't help but think it is the beginning of something big. Also, I am getting really good at driving down the road and using my Power Lung. I get a few stares, but who cares? Stay tuned for the next exciting update..................................Barb
Today would have been my grandmother's 128th birthday. I thought I would do an update to celebrate her memory. Last night after I went to bed, I forgot something. I got up, left the nose hose for the cat to play with and went to get what I forgot. Normally, this would cause my sats to drop to 85-88. I got back and I was at 92. Today, I have been the same way. I did a whole ton of stuff and was feeling a little tired because I was driving around in the heat in an old truck with no AC. Normally, when I exert myself this way I drop below 90 with my sats even using O2. I had my O2 turned down and was even up and down the stairs and had been going for several hours with no rest. I checked and I was at 90. In the car earlier, I was able to take the O2 off and maintain 91. My chest really ached all day yesterday. Not SOB or anything like that, an achy feeling like I had thoroughly exhausted myself or something. I think the little cells were working overtime because I certainly am seeing some progress along the lines of better sats with less O2 and no O2. This is just a little something, but I can't help but think it is the beginning of something big. Also, I am getting really good at driving down the road and using my Power Lung. I get a few stares, but who cares? Stay tuned for the next exciting update..................................Barb
Good driving record
I know what you're thinking Jeannine. Better get off the road - here comes that maniac that drives while using her Power Lung! It is no different than someone puffing on a huge, fat, blue cigar and I see people doing that all the time. I take mine to bed too, but sometimes in the morning, I am just too anxious to get going and that's when I end up doing my exercises in the car. It is better if one is not driving. At least I try not to use it while combing my hair, putting on make up, drinking and eating and using the phone and laptop when I'm driving. Oh and I almost forgot, it's a good time to brush the dogs too when they go in the car with me. You can really get lots of stuff done while driving. There really are no cars on the road in Denver, so I don't need to worry. Now, you know I have sucked in too hard on the Power Lung after saying something like that. I will try to do better and only use it in the car when I am a passenger. Is that okay, mom?
I know what you're thinking Jeannine. Better get off the road - here comes that maniac that drives while using her Power Lung! It is no different than someone puffing on a huge, fat, blue cigar and I see people doing that all the time. I take mine to bed too, but sometimes in the morning, I am just too anxious to get going and that's when I end up doing my exercises in the car. It is better if one is not driving. At least I try not to use it while combing my hair, putting on make up, drinking and eating and using the phone and laptop when I'm driving. Oh and I almost forgot, it's a good time to brush the dogs too when they go in the car with me. You can really get lots of stuff done while driving. There really are no cars on the road in Denver, so I don't need to worry. Now, you know I have sucked in too hard on the Power Lung after saying something like that. I will try to do better and only use it in the car when I am a passenger. Is that okay, mom?
The power lung does help you to strengthen your diaphram (sp). At least I have found that to be the case.
Here's the website
http://www.powerlung.com/us/en/
Here's the website
http://www.powerlung.com/us/en/
Lung Exercises
I can't say enough good things about my Power Lung. I got it several years ago and put it in the closet because I couldn't suck in or out even on the easiest setting. After my treatment, I got it back out and was able to use it on the lowest setting. Then the doctor where I got my treatment actually recommended using one, so I knew I was on the right track. I can't believe how much it has helped. It would even help if you hadn't had treatment and stuck to doing a couple of sets of lung exercises per day. It relieves SOB, strengthens your lungs and is an exercise that you can do almost anywhere except I guess not while driving. (Jeannine would it be okay on lonely country roads to drive and exercise?)
I can't say enough good things about my Power Lung. I got it several years ago and put it in the closet because I couldn't suck in or out even on the easiest setting. After my treatment, I got it back out and was able to use it on the lowest setting. Then the doctor where I got my treatment actually recommended using one, so I knew I was on the right track. I can't believe how much it has helped. It would even help if you hadn't had treatment and stuck to doing a couple of sets of lung exercises per day. It relieves SOB, strengthens your lungs and is an exercise that you can do almost anywhere except I guess not while driving. (Jeannine would it be okay on lonely country roads to drive and exercise?)
My little Spirit
Today I took my portable O2 Spirit unit and stayed out about 7 hours with it. I used to have to bring the little guy home and fill him up after only 2 hours. I actually took a back up unit with me because I haven't forgotten the old days I guess and old habits die hard. My sats were fine for the whole time period. It was so enjoyable to not worry and clockwatch the whole time. I kept it on 1 lpm and had it off for part of the time. Not bad for only a little over 90 days since my stem cell therapy.
Today I took my portable O2 Spirit unit and stayed out about 7 hours with it. I used to have to bring the little guy home and fill him up after only 2 hours. I actually took a back up unit with me because I haven't forgotten the old days I guess and old habits die hard. My sats were fine for the whole time period. It was so enjoyable to not worry and clockwatch the whole time. I kept it on 1 lpm and had it off for part of the time. Not bad for only a little over 90 days since my stem cell therapy.
It's been awhile!
Hello everyone! It's been awhile since I've posted in here, but here I am now! I finally had the follow-up appointment where they gave me another spirometry test -- the first since I was discharged from the hospital in August. My FEV1 has gone from 13% to 16% -- Woooooeeeeee!!!!
I told my pulmo that I was going to have stem cell treatment. While I was drawing breath to continue, he jumped right in and told me I should search the internet for clinical studies and also check with the Univ. of Chicago to see if they're doing any clinical studies. He did ask me who was going to do it. He hadn't heard of Dr. F, but I suspect he may know more about him now. Bottom line is, obviously he's in support of my decision. He told me to just let him know where to send my records and he'd take care of it. My PCP also is in support of this. Their support is important to me -- you know, just in case I need someone to take care of me upon my return, I know they will and I won't have to omit any information! Also, I figure I won't have any problem getting prescriptions recommended by Dr. F filled.
So, next step is to check out Matthew Lasko's books to see where I might get some government money to take care of this. Wouldn't that be a hoot -- get a government grant to take care of something our gov't won't approve yet! I could consider that paying bills, couldn't I???
Hello everyone! It's been awhile since I've posted in here, but here I am now! I finally had the follow-up appointment where they gave me another spirometry test -- the first since I was discharged from the hospital in August. My FEV1 has gone from 13% to 16% -- Woooooeeeeee!!!!
I told my pulmo that I was going to have stem cell treatment. While I was drawing breath to continue, he jumped right in and told me I should search the internet for clinical studies and also check with the Univ. of Chicago to see if they're doing any clinical studies. He did ask me who was going to do it. He hadn't heard of Dr. F, but I suspect he may know more about him now. Bottom line is, obviously he's in support of my decision. He told me to just let him know where to send my records and he'd take care of it. My PCP also is in support of this. Their support is important to me -- you know, just in case I need someone to take care of me upon my return, I know they will and I won't have to omit any information! Also, I figure I won't have any problem getting prescriptions recommended by Dr. F filled.
So, next step is to check out Matthew Lasko's books to see where I might get some government money to take care of this. Wouldn't that be a hoot -- get a government grant to take care of something our gov't won't approve yet! I could consider that paying bills, couldn't I???
Progressive doctors are the best
Pat - This is good news that you got support and not some head in the sand doc telling you that you were doing the wrong thing and scaring you half to death. I am seeing a difference in reactions just within the last month. There are more people (I do include most doctors in that category) who are actually beginning to sit up and listen to what some of us have to say about stem cell treatment. I think some of the doctors are also getting a dose of it in their medical journals and conferences they attend. There is discussion and that's a good start. It certainly will help to have them behind your decision as it will facilitate getting the meds you need after treatment. I am really excited for you. I know you will come up with a way to raise the needed funds.
Pat - This is good news that you got support and not some head in the sand doc telling you that you were doing the wrong thing and scaring you half to death. I am seeing a difference in reactions just within the last month. There are more people (I do include most doctors in that category) who are actually beginning to sit up and listen to what some of us have to say about stem cell treatment. I think some of the doctors are also getting a dose of it in their medical journals and conferences they attend. There is discussion and that's a good start. It certainly will help to have them behind your decision as it will facilitate getting the meds you need after treatment. I am really excited for you. I know you will come up with a way to raise the needed funds.
No longer on O2 24/7
I was up until 2:00 am this morning doing the final edit on the book that Jeannine and I wrote. I started around 10 PM. I didn't use any O2 and even though editing is far from a rigorous activity (except for the part where I pull my hair out), I was able to maintain a nice 91. I also am able to walk upstairs now with O2 and maintain a 90. I used to drop to the mid 80's when climbing stairs even with O2. I consider these little things that are adding up to more progress everyday. I also was at my office today and didn't use any O2. These periods where I can do this are getting more and more frequent.
I was up until 2:00 am this morning doing the final edit on the book that Jeannine and I wrote. I started around 10 PM. I didn't use any O2 and even though editing is far from a rigorous activity (except for the part where I pull my hair out), I was able to maintain a nice 91. I also am able to walk upstairs now with O2 and maintain a 90. I used to drop to the mid 80's when climbing stairs even with O2. I consider these little things that are adding up to more progress everyday. I also was at my office today and didn't use any O2. These periods where I can do this are getting more and more frequent.
To Pat
Hi Pat,
Congratulations on getting the support of your doctors! When do plan to try and get your treatment? And, just curious...what is this book my Matthew Lasko (is that right?) and finding funds. I've talked to my husband's doctor about what I've found out about stem cell therapy and he's looking at some of the links and articles I've given him. So, he's not against it....just said he didn't want us to wander down some garden path...
Anyway, I know we'll have to do some fundraising to get my husband treatment but I'm curious to know what you heard about this book.
Thanks,
Mary
Hi Pat,
Congratulations on getting the support of your doctors! When do plan to try and get your treatment? And, just curious...what is this book my Matthew Lasko (is that right?) and finding funds. I've talked to my husband's doctor about what I've found out about stem cell therapy and he's looking at some of the links and articles I've given him. So, he's not against it....just said he didn't want us to wander down some garden path...
Anyway, I know we'll have to do some fundraising to get my husband treatment but I'm curious to know what you heard about this book.
Thanks,
Mary