Anyone else failing to get a response from XCell to treatment request?

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Azriel

New member
Hi

After David's (username: dlbelbin) posting on his trip for treatment for CP for his son and also treatment for his wife I decided that X-Cell looked like the option for us as well. As my son is just about to turn three my husband and I feel there is less risk in the autologous bone marrow approach rather than the donated UC option - especially without being able to select sex of donated cord blood.

However, I registered on 9th March, completed Oscar's application on 12th March the email of registration says:
I will call you within 3 working days of receiving your completed online Medical Information Form.

Still no contact despite a followup email to them.

This to me is really, really, really disappointing and if a centre goes to the trouble of encouraging you to apply and then leaves you in limbo that is unacceptable. If there response time is actually going to be six weeks, well I can live with that if the expectation is set to that level.

I have a contact of Mr. Issam Errahmaoui who is down for the Australia/New Zealand contact. I do not think I should need to ring him, after all it is my money they are after and I'm after what they say they will do.

Disappointingly there is no general contact email for the centre on the site, you only get a contact email on registration.

Anyone else had issues or do I just have a dud regional co-ordinator?

Cheers

Merryn
 
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barbara

Pioneer Founding member
Personally, I think you would be very wise to wait for David to post an update about any change in the conditions of his wife or son. His initial updates included the treatment information, but we haven't heard any more from him on the open forum.
I also would be questioning how any follow up would go with a company that hasn't responded in a timely fashion to your initial request. There are other clinics doing autologous treatments. I would urge you to find one that is more responsive.
 
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Azriel

New member
Hi Barbara

I appreciate your input. However, my main aim of contact is to get hold of some references who I can talk to. I'm not off to them tomorrow but I do want to have done thorough research before we head off.

They have recently published a summary report of their findings of improvement of 100 cerebral palsy clients they have treated. I find the results interesting BUT I do want to validate with actual patients. There is sufficient improvement for us to want to give it a try. Many of the patients listed in their testimonials are lot more severe in symptoms than Oscar so I want to see what the moderately impact patients are like. For example, Oscar can feed himself, sit unassisted, crawl and can take 6 or so steps unaided in support boots so we know he will walk. Speech is a gain that seems to be something that comes through and that alone would be of huge benefit to Oscar.

I trust no provider explicitly in this space.

However, these are one of the few centres offering autologous treatment and at what I think is a price that we can live with. So I'm just keen to get on with the assessment phase.

Cheers

Merryn
 
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barbara

Pioneer Founding member
Hi Azriel - I can appreciate where you are coming from, however, if the summary was something that this company put out and not peer reviewed, there is little validity in it unfortunately. Be especially careful if you are given a few parents to contact and they are all the same parents that others are allowed to contact. Out of 100 studies, they should be able to provide a lot of contacts for you.
If you cannot get good customer service and you cannot validate their claims, it really doesn't matter what the treatment costs, in my opinion. For your sake and your child's I hope that you are able to find that the 100 patient study was legitimate and that patients really did see improvement. We just haven't had any good reports about X-Cell's treatments on this forum so I have to tell you, I am skeptical.
 
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Azriel

New member
Hi David

I got your message with contacts, that great, also saw your post of changes which also fantastic.

Thanks so much for your help.

Cheers

Merryn
 
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Azriel

New member
Yes, got a reply

Finally last week and they are willing to treat Oscar, I have asked for some references and they have also given me an NZ family to talk to. I think they are overrun with people wanting treatment and to be fair I had not chased them again as I thought I'd leave it to see when they did finally get back to me.

It took 6 months for Dr Steenblock to respond to our application so perhaps 3 is quick!!
 
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Azriel

New member
I would agree Barbara but I think it could be tempered with more than the automated response by a simple update, sorry for the delay we are reviewing currently. To be fair I would like to think that they do read it in detail and consider the merits of treatment for the case presented.

With Steenblock/Ramirez it took so long that I thought that my application had got lost but I did get a personal call directly.
 
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barbara

Pioneer Founding member
They should hire someone if they are so far behind in their work to make a simple call to potential clients explaining that it will take XX months to review, etc. They could also state this clearly on their websites. We are asked to fork over thousands of dollars and quite frankly I just don't buy any excuse for such delays. You sound far more patient than me. Companies need to get back to giving good customer service. Not just these two companies, but any company that is expecting customers to pay for its services. This is really appalling to me.
 
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Azriel

New member
I'm not actually the worlds most patient person normally but with the five or so different agencies I have to deal with for Oscar in the NZ medical service and the fairly regular inefficient and ineffective response we get I'm becoming accustomed to constantly fighting and waiting. However, if you want autologous for CP we have little option other than X-Cell.
 
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barbara

Pioneer Founding member
That's unfortunate. I wonder if other companies would give autologous treatment if you asked for it. I do know that some companies will customize treatments. It sounds like some competition is needed to get better service.
 
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barbara

Pioneer Founding member
Being appalled by the conversation on this thread, I sent inquiries to a few reputable companies using autologous cells. Dr. Lopez from Regenerative Medicine Institute, Mexico responded to me immediately with the post below. This is fantastic news in my opinion because not only does he have a group of doctors that is impressive, he also participates with ICMS and currently has two patients in the clinical registry. I think you will also find that you will not wait months for a reply from his clinic. You can click through to his site at Regenerative Medicine Institute, Mexico at the top of the Home Page on this forum. They are accepting applications for CP treatment now.



Subject: Re: Question for you

Good morning Barbara, as a matter of fact we have been approached by a group from NY that is looking for a center that treats CP.

I have been meeting with our Neuro group and we have agreed to proceed with CP treatment effective immediately.

Thank you.

Dr. Javier Lopez
 
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Azriel

New member
Thanks for that Barbara. I do have an issue in the fact that when you look at their team they have paediatrician but no nuerologist on their staff. I will apply and see what happens from there.
 
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barbara

Pioneer Founding member
Reply from Dr. Lopez

We have 4 Neurology Team members, 1 is a Neurosurgeon/Neurologist, the other three are Neurosurgeons.

All of them have worked with CP before.

Thanks, Dr. Javier Lopez
 
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StemCellsForHope.com

New member
Stem Cells for Hope Treatment Options

Stem Cells for Hope, Inc.


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barbara

Pioneer Founding member
Peter - I would very much enjoy speaking with you. Please feel free to contact me by private message or e-mail so we can set up a time to talk. Our forum rules do not allow the posting of website or e-mail addresses or phone numbers with the exception of promotional materials such as press releases or new information that clinics would like readers to have that are posted in the promotional forum.
 
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