Non-Lissenphalic Cortical Dysplasia

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usmaggu

New member
Hello.

This is regarding my 20 months old son, Praneit Singh. Praneit was born with multiple disorders- Congential bilateral cataract, undescended testicles and slow motor development. We got all his tests done, and all his tests came normal. Recently when we consulted a very senior doctor in India, she reviewed his reports and told us that although his CT report is normal, but the scans doesnt seem normal to her. She advised us to get his Cranial MRI done. When the report came, it stated that he has a rare condition Non-Lissencephalic Cortical Dysplasia.

After reviewing the MRI scans, doctor has told me that his condition is more likely Cerebral Palsy, and it can be treated with Stem Cell Therapy, just like Cerebral Palsy.

I have searched the internet and have got very less information about this problem. If anybody knows about this condition, or could advise me whether we have some hope with Stem cells Therapy, i will be very grateful.

From all my research over the internet, i have found few reputed doctors, Dr. Steenblock, Dr. Ramirez, and Dr. Joanne Kurtzberg. I do not have their contact information. Please help with the same also. I am also in contact with Beike, and waiting for their reply. I want to give my son to the best hands and get his best treatment available. Please help me and guide me what to do and where to go.
 
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barbara

Pioneer Founding member
I will send you a list of resources via your e-mail. Have you been in contact with Dr. Geeta Shroff? She treats in India and has had some excellent results I am told with CP. Since your child's condition is similar, I would definitely include her in your search.
 
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usmaggu

New member
About Dr. Geeta Shroff

I have heard about Dr. Geeta Shroff, and have got a mixed opinion about her, majority of which is negative. I do not know how correct is this information, but even the doctor, whom i am consulting, have given a shady picture of Dr. Shroff. Even i have read some not so good stuff about Dr. Shroff over the internet. So, i am confused.
 
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barbara

Pioneer Founding member
Yes, it is hard to distinguish what is bad press, sour grapes and reality. My suggestion would be to talk to her directly rather than forming an opinion from what others have written or said.

http://www.stemcellpioneers.com/showthread.php?t=2837

Danny posted this information. It sometimes is beneficial to contact research companies and doctors to see if they know of anything in your area as well. It would be worth a few inquiries in my opinion. Even if they are not treating the condition your child has, one inquiry can lead to more information that might get you to where you want to be. For the most part, I have found researchers, doctors, CEO's, etc. to be very willing to help. There is a lot going on in your part of the world right now. India is serious about its role in biotechnology.
 
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usmaggu

New member
Thank you so much for the information about the various doctors. Now even i realize that there is huge opinion difference. I do not know why its so, maybe competition or ego clashes. I have taken appointment with Dr. Shroff for Wednesday, 10th march. I feel it is better to see myself and then make some opinion. I will update my meeting with Dr. Shroff, that what she says about the condition, whether Stem Cells Therapy can heal or not.
 
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barbara

Pioneer Founding member
Good for you for taking the bull by the horns and getting the information first hand. I look forward to hearing how the meeting goes. We do not endorse any doctor or clinic, but do pass on information for clinics where patients have had some success and there is good customer service and few, if any complaints about treatments. It is still up to individuals to do their own research however and to rely on what they find out on their own. There are no guarantees with stem cell therapy just as there are no guarantees with any type of medical treatment. Personally, I think stem cell therapy has saved my life. It's still in its infancy, so we can expect to see better therapies evolve on a continual basis.

Another thing that you need to consider is that it would be so much easier for you to get your child treated close to home. It's tough enough on adults to have to fly all over the world, but for little ones, I think it is all the harder. There may be multiple treatments and follow ups involved if you decide on therapy, so if you are happy with the results of your meeting, this is another consideration.

Make sure you are writing questions down now before your appointment. That way you will be more prepared. Also, take notes at the meeting. You may think you might remember everything, but most people would agree that note taking is a good idea and has helped them in their decision making process.
 
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usmaggu

New member
Beike's response

I have just received the reply from Beike, China. Based on Praneit's reports, they have concluded that he can be treated with Stem cells Therapy. I am very happy to know it.

About Dr. Geeta Shroff, she treats with Embryonic Stem cells, one of its kind treatment in the world (as she claims). How good and effective is this kind of treatment? Also, which is the best therapy- Umbilical Cord Blood, Bone marrow, or Embryonic Stem Cells?

I have got Praneit's stem cells preserved with a local cord blood bank in India. I have informed the same to Beike, but they insist on using their own sourced umbilical cord blood stem cells, as they say that Chinese government does not allow to import stem cells. Does it give us any advantage if we use our own umbilical cord cells, than using cells from some external source, in terms of quality, quantity or responsiveness of stem cells?
 
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barbara

Pioneer Founding member
usmaggu - Your child's condition must be thought to be treatable and that is why you are getting positive responses. There is absolutely no way that I could tell you which treatment would benefit your child most. I doubt if anyone else wants to make that decision either. I think you will find that whatever doctor you speak with will say that their treatment is going to benefit him the most or they would not have responded to you in the affirmative in the first place. I think you owe it to yourself to get many more details from the clinics you inquire at. If they are not willing to do any more than just tell you they treat it or where to send your money, then cross them off your list. Also, take your time. Do not be in such a rush that you don't give yourself some time to evaluate what you learn from your consultations. Ask what outcome can be expected and how long it would take and how many therapies would be needed to achieve it.

There is quite a lot of discussion concerning umbilical cord stem cell therapy throughout the Ask the Doctor forums. You might want to read through them.

As for cord banking, I have heard from many sources that it is simply not a good use of one's money. Many clinics will not accept what you have stored. Storage sounds like a great idea, but does not have a lot of practical use so far except to keep the storage companies in business. Just my two cents.
 
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usmaggu

New member
barbara said:
usmaggu - There is absolutely no way that I could tell you which treatment would benefit your child most.
Click to expand...
Which is the clinically most effective therapy- cord blood, embryonic stem cells or autologous therapy. I have read on internet that there could be chances of developing tumors as a side effect of embryonic stem cells therapy. I have located one clinic, NeuroGen in Mumbai, India which does Autologous Therapy. I am looking for the best treatment. If cord blood therapy has better results (as the quantity of stem cells are very large), i will start going in that direction, keeping all other options aside. Or, if the results are same, i will consider autologous therapy from India, even the cost is 1/8th the Beike.
 
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barbara

Pioneer Founding member
Some diseases and conditions and people for that matter respond differently to the different types of therapy you mention. I don't know if anyone has done any clinical trials for the condition your child has. Search the internet for peer reviewed published articles that might help you. If you find none, then I would say the jury is still out. The last treatment I had was a combination of bone marrow derived autologous stem cells, adipose stem cells, umbilical cord stem cells and placenta derived stem cells. The clinic where I went had a reason for giving me this type of treatment.
You have found several clinics, all using a different type of stem cell therapy. I seriously doubt that any of them have done extensive studies that would show that their therapy is going to work or be superior to another therapy that uses a different type of stem cell for your child's condition. Some day in the future, we will have this kind of information available to us, but not now.
The great fear with embryonic stem cells is that they can cause tumors, however, Geron will soon start its first esc clinical trial in the US. Dr. Shroff is using a method I am told that is working well. I have invited her to host Ask the Doctor in May and she has accepted. I would like to know more about what she is doing as well. You have the opportunity to interview her at length during your appointment. Only you are going to be able to decide what type of therapy you want for your child. Try to steer clear of sales talk and ask questions based on science and not emotion.
 
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barbara

Pioneer Founding member
This is a nice article. Keep in mind however, that these were her own cord blood stem cells that had been stored. There can always be a risk with donor uc stem cells if not processed correctly. That is where certification should be one of the questions that is asked of any potential doctor that would be doing the treatment.

Also, if it is possible, treatment closer to home makes a lot more sense. This isn't always feasible, but when there is a choice it only makes sense to stay close to home.

It will also be interesting to find out from usmaggu what the doctors tell him about their treatments for his child's condition. One doctor told him it would be treated like CP. Will the others say that?
 
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