Xcell Center Germany Journey

[dlbelbin]

Update from Barbara: X-Cell Center, the subject of much heated debate on this forum and other forums, was closed down by the German government. Thank you Germany!! This clinic was as bogus as they get.



My wife with TBI and son of 5 years old with CP have arrived in Germany. We are performing ASCT, bone marrow and return via LP. This is our third day here in Dusseldorf. As promised, I have documented our journey in detail at our blog http://www.belbinblessings.blogspot.com

We have arrived and did our first day consultation, second day we did their bone marrow extraction for both my son and and wife. Today is rest as the cells do their thing and multiply. Tomorrow, Thursday will be the return via Lumbar Puncture.

So far we are very impressed. The professionalism, efficiency, and cleanliness exceed most clinics and hospitals in the states. I can not compare stem cell clinics as we have only been to Xcell, but I can compare a clinic/hospital to a clinic/hospital.

One thing for sure, we need to do what ever it takes to get the US to approve these procedures.

I have had several conversations with Americans that have traveled here. We all have agreed that as we have these procedures done, that we must maintain communication and updates on patient progress. As we all have witnessed in our research, treatment results and progress drop off. I.e. no current updates 4-8-12 months after a treatment. I have spoken to Harrison?s mother, a boy in Denver that has gone to Xcell and she told me that they were very pleased with Harrison?s results and would recommend treatment. If I did not know her, I would have been lost with the rest of the folks looking into treatments. Understanding that we are human and more apt to report negatives than positives, we must continue to update either.

More later as we wrap up treatment.
David

 

[barbara]

Thanks David. I wish that clinics would do a better job of follow-up as well, but unless they are working towards clinicals or approval, they really have no incentive except for the fact it would help with future treatments of other patients. Personally, that would be enough for me if I were giving treatments. ICMS has a registry for patients and it has met with resistance from some doctors who really don't want to let others have access to treatment protocols that might help others. Doctors can license their technology, so it isn't as if they would be giving up proprietary knowledge as that would not be available in the registry. They undoubtedly also fear the registry would document therapy failures and heaven forbid if we don't all think that they have a 100% success rate.There is too much money to be made off of desperately ill people at this point to hope for the follow through that patients would like.

In the meantime, best wishes to you and your family and keep us informed.

 

[dlbelbin]

Xcell Center Germany Journey day 4

Well, it's complete. Both wife and son are asleep tonight after LP implantation this afternoon. The details are:
Wife had 20 vials of bone marrow removed. Then implanted 5.5 ml BMC solution containing 8,167,500 CD 34 cells with a Vitality of 80%.
Son Had 7 vials of bone marrow removed. Then implanted 4.0 ml BMC solution (high concentration) containing 7,180,000 CD 34 cells with a vitality of 71.6%.

Ideal Vitality that the center shoots for is 80% +. Minimum cells that they will put back is close to 2 million.

Wife had some discomfort of back pain this evening, but now is ok. Son acted as if nothing happened till the evening with very little discomfort. Other than that, a few days of relaxation with hopes they feel good in the morning, then off to the airport for our return home to Colorado.

Still very pleased and impressed with Xcell. Earlier concern we had was that Xcell did not return as much cells. Not the case. They put in what they get from the bone marrow..

The whole process from start (application) to finish (implanted cells) was great. Last step is for the driver to pick us up and take us to the airport.

Now its up to therapies and the ol' mighty. And the Cells to do their magic of course..

David

 

[Azriel]

Watching with interest

Hi David

I'm watching your posts with interest, our son Oscar (three in April) also suffers from CP and the problem we have is that he will walk (walks with walking frame and trolley) and we expect will talk as says some words. Cognitively Oscar appears to be functioning as expected and the concern that we have is that with umbilical cord transfusion we are in for the unknown - unknown sources, unknown sex components - and we have a son that has a lot more to loose than some of the other families who have much more severely disabled children that we have met who have taken the treatment. Life expectancy for some of the other New Zealand based children has been early teens whereas Oscar does not have that as an issue and we fully expect him to have a normal length of life.

It is a shame as I have literally returned yesterday from Europe and flew in and out via Frankfurt and was in Brusells and Bern so not all that far given we are the far flung reaches of New Zealand! Had the dates been a little different I would have been stopping to see Xcell. However, I really do wtch this with interest as if you get improvements from the bone marrow treatment we will be off to do the same.

Kind regards

Merryn

 

[dlbelbin]

Watching with interest reply

Good day to you Merryn.
We had the same concerns in regard to UCB cells. Duke University did a trial with kids using their own UCB cells and found great success. In conversation with Denise from New York who was at Xcell mentioned that they are looking into using sibling UCB cells. He had saved his latest child UCB and checked into using those cells for another child. At this point, that is a no. No doubt that UCB cells are the best if they are your own. In readings on donated UCB, they have narrowed the gender etc when choosing cells to use but still no guarantee and still in study. Rejection etc percent is higher when using any donated cells. In conversation with doctors here that will follow up with our sons treatment also had concerns with donated UCB cells. As you mentioned, depending on the level of symptom, one must measure the amount of risks/failures/possible success/monies in their individual equation of what, where and who.

With the monies and theories involved, we chose Xcell. In the beginning we looked and asked for results from families that have been to Xcell with little to no response. It was not until I started to direct emails straight to the source, calling families that we have meet here in Denver that have gone i.e. Harrison and Dominique and finding a lot more blogs of families, that we got what we were looking for as to results.

Looking at Kaci?s Mom posts, they have done well with good successes using UCB. You may want to take a read on her posts.

As to did I choose right and know everything that there is on the subject would be a no. I am confident that I smothered the subject pretty well in the past year. Did I choose right by seeking this treatment, absolutely yes. Do I feel comfortable with the treatment received, absolutely yes. Now, it is results time.. Can not wait to see how it comes out.

I?ll do a recap and finish off our visit and add some travel notes in the next day or two. My body and mind needs to catch up with time and space.

Good luck and let me know.

Have you started a blog? If so, let me know.
David

 

[dlbelbin]

For those that have interests in Xcell, these are my tid bits and process as to how we experienced them.
1. Apply on line. Fill in medical history.
2. A Xcell consultant assigned to your region will contact you. USA clients will have a USA consultant, Japan will have a Japan consultant. Makes sense as we all speak different languages around the world. The consultant will request copies of medical documents and a current MRI or other. The consultant communicates with the doctors in Germany. The consultant will come back with an approval or no approval for treatment. This process is the most time consuming. If you need to make MRI appointments, medical appointments etc.
3. Once approved, you tell the consultant what dates you want to start treatments. The consultant gets back to you on treatment dates and times. You will have a deadline to tell the consultant: Yes, these are my flight times and this is how I will pay for treatment. I recommend International Bank Draft. Our bank did not know what IBD was till I insisted that they need to figure it out. Which they did. Do not make flight and travel plans till they tell you to.
4. Ask your consultant your questions. The consultant will get you your answers. Communication with the doctors is ok as we witnessed with others.
5. The consultant will send emails with a bunch of attachments. The attachments are forms that you will be filling out once you arrive to the clinic. Do your homework and read them. While at the clinic, things go fast and you will be able to fill out the forms quickly and comfortably.
6. You will have the option to use Xcell transportation or your own. You will need to communicate to the consultant your transportation plans. They charged 150 Euros, which we thought was priced high at 220 US. After riding in a taxi to our hotel, the math turned out to favor the Xcell transportation.
7. The consultant emails dates, times, and a scenario of what to expect. Our consultant gave us a scenario from getting of the plane, airport checkpoints, looking for our driver, to the ?T?. He was precise.
8. Stick with the consultant! We had a change in our consultant mid way through the process and stayed in communication with the new consultant. They did a good job through the transition.
9. The consultant stays with you up to the day you leave and give?s you a farewell email with contact information and dates. Till that point, stay with the consultant.
10. Done with the consultant. The rest of the communication will be directly with the clinic in Germany.

Very simple and smooth. The longest time taken is making appointments and getting MRI?s completed, last minute follow up surgeries, etc. It took us about 3 months. Remembering that I have had 2 family members to get completed.

The next is all in Germany.
Day 1 for children is meeting with the anesthesiologist. Day 2 is the bone marrow extraction. Day 3 rest and wait anticipating outcome of cells. Day 3 you will have time to tour and play. Day 4 return of stem cells via LP. Day 5 and 6 rest and drink plenty of fluids. Kenneth and Reyna were not up to much but to hang around the hotel. Day 7 return home.

I suggest that you request for extra Vomex. Vomex is the nausea vomiting medication. Take it prior to take off for the flight home. Critical?. We learned the hard way.

We enjoyed our hotel. Lots of space. If you like spending 3+days lying around a small hotel room, you will have lots of choices. We did struggle with finding a hotel that accepted 4 to a room. We meet a Mother with her daughter that stayed at Mercer and found the room very small and uncomfortable. We spent almost 2 weeks looking for a hotel. Google earth works well. We used Google earth so much that we felt like we knew where everything was when we arrived. DVD?s and more DVD?s. Hotel TV is like antenna channels all in German.

Meals. Germany is pretty much closed on Sundays. Sundays for the majority is arrival day. Shopping and grocery stores are closed. They do have gas stations with snack/sandwich items that are open. I would suggest packing up some of those add hot water meals. First day arrival supplements that will hold you over till you can get to a restaurant or the hotel opens its restaurant. Take it from grandma, pack up foods. After a 16 hour day flying, those little meals came in handy till we figured out what we were doing. When you?re exhausted, this can be challenging. The driver told us a story of a family that found them selves taking a taxi to McDonalds and back. It cost them well over 50 dollars. The hotel food is expensive. We did do some grocery shopping which was very economical. Our driver also stopped at the gas station for us so that we could pick up additional snacks, sodas etc.. Between the clinic and hotel. If you stay at a hotel with a continental breakfast, make sure there is a restaurant or store near by.

Take smaller bills like 20?s with you. Our hotel would not exchange 100?s to Euros. The banks will take 100?s to exchange.

The last and most important is my 6 P?s. Proper Planning Prevents Piss Poor Performance. Get ahead of your planning and arrangements prior to leaving. Last minute things could happen and make the leave a stressful one. I.e. I had a sinus infection that turned out to be a root canal and sinus infection the week before we left. On top of that, I do work as well as all of you. I think this made our departure pretty stress free with everything covered 2-3 weeks before leaving. As we all know traveling with special needs is and can be stressful. Better to be having a martini at midnight before the flight instead of running around trying to get things together.

I think that?s it. I hope this helps. I am sure all experiences will differ.

I invite any one and everyone to add to this. I know one thing for sure; I wish I had this kind of information prior to leaving. That is why I have written.

 

[barbara]

Thanks for the info. I got tired however, just reading it. Hopefully, you will get some results so as to have made all of this worthwhile. I have never had to go through all of what you described. Thank you for bringing us up to speed on the way things are done in Germany.

 

[michaelsdad00]

lumbar puncture vs. arterial catheterization

David,
I am astounded at the detail with which you have described the treatments. My son has received 5 sets of UCB stem cells over the last 6 years with mild improvements for his cerebral palsy. We are moving closer to having him receive autologous stem cells either through arterial catheterization or possibly a lumbar puncture. Thank you for posting all of this information.
David Snow

 

[PJeannine]

Grandma's "tidbits" on Germany trip

I am Grandma P. Jeannine Headrick who traveled to Germany with my son David Belbin and his family for adult stem cell therapy. I have been caregiver to Kenneth since his birth in Aug 2004. I would like to add to David?s ?tidbits? of the trip and what we learned from other families there.

Be sure to get baseline testing done. Children?s Hospital in Denver was very supportive in ordering Kenneth?s MRI, blood tests, CP clinic, Gait/motion Evaluation, neurological/psychological ?Mini-MORE? testing (Multi-disciplinary Outpatient Rehabilitation Evaluation), and also expedited his surgery for closure of his Gastrostomy opening. (He had been G-tube fed for over five years). Reyna?s doctors at Craig Rehab and her neurologist also expedited her MRI and testing.

Apply for passports well in advance. Even if you are unsure you will be traveling abroad. We became acquainted with two families that had to reschedule travel and clinic appointments due to delay in receiving their passports.

Dusseldorf is a trade center with many events all year. Our trip coincided with a trade fair which might possibly explain why our search for an appropriate location took longer. The Holiday Inn in Neuss (pronounced ?noose?) was an excellent choice. We had a moderately priced one bedroom suite with a kitchenette including a mircrowave and refrigerator. I found the sofa hide-a-bed in the living room quite comfortable. We had earlier decided against the added expense of the continental breakfast. At 17 Euros per person each day, a total of 496 Euros or $678 US, we felt that we couldn?t possibly eat that much breakfast. And, also our patients would not necessarily want to be up and about that early. Since we had the kitchenette, we came prepared with instant oatmeal, instant coffee tubes, instant juice flavored drink (especially useful during travel), small boxed cereals, EasyMac, and dry prepared meals to mention a few. And, yes, I still had room for my clothes. LOL

I had a solitary walk into Neuss on Day 3 while Reyna and Kenny were resting. I found a visit to the Cathedral very uplifting and my timing was perfect for an 11 AM view of the ?Glockenspeel? performance in the church square . Sadly, my later trip into the Marketplatz with the family did not coincide with the next performance for them to view. The Cathedral is the one shown in the Neuss.de webcam.

I was extremely impressed with the professionalism at Xcell Center. Also, with airport security, customs, immigration, passport control, and Delta personnel in expediting all processes for those with special needs.

I want to thank all of those who contributed to us - emotionally, mentally, and financially, and especially to those who have and continue to pray for our loved ones. God bless you.

 

[barbara]

Nice to hear from you Grandma. In the case of Germany, patients must spend extra time in the area due to their cell processing. I think it would do every patient good to slow down a bit and not rush home the very next morning after treatment as many do. Many offshore clinics are now incorporating stays of 2 weeks or more to their protocols in order for patients to get more R and R and I think it's an excellent idea. In Europe that might add too much to the cost, but in the Caribbean for instance or Central America, it would be quite affordable for patients.
It is an emotional experience for most (especially if it is the first treatment) and it can be stressful so being prepared is helpful as is taking it easy afterward. I have had smooth sailing with all of my treatments except for the first one and have always been treated in a professional, courteous and caring manner. Any clinic that does not provide that is certainly one to avoid.

 

[dlbelbin]

Xcell clients Dom and H, Denver News

Link to Denver 9 news article on the two Denver Boys that went to Xcell last year.

http://www.9news.com/news/article.aspx?storyid=134257&catid=188

 

[dlbelbin]

33 day update

Hard to believe that 33 days have past. We have been waiting to update after an appointment with Kenneth's doctor. We decided to postpone the appointment a few more weeks out from the treatment.
Kenneth has been a lot more talkative and focused. Perhaps one can call it cognitive improvements. Pre treatment he was on 1.5ml x3 daily of baclofen. We decided to take him off prior to treatment. As of today, we have not put him back on and his tone has reduced. Pre treatment he was ready for another surgery in his legs, now with the reduction of his tone while not on the baclofen, it will be interesting to hear what the rehab surgen has to say. His therapists agree that he is more cognitive and has a lot less tone than pre treatment while on the baclofen. He is also more willing to do tasks and therapy walks in his walker. His thumbs are less pronounced inward and while making fists. Less compulsive and involuntary movements.

My wife Reyna has shown changes. Pre treatment she had a "deer in the headlight" look and would say "what" as she first would not understand or unclear of what was said. Also, she would have multiple projects going on around the house half completed. I have not seen this since we have been back from treatment. She seems a lot more focused and on the ball. Just a lot sharper and on a mission around the house or while shopping. Her balance has improved as well. Also her texting has improved. In the past she would send me a text message that would be sum what garbled. I would have to call and do the yes no questions to get the answer. Now they have been precise, i.e. " buy tortillas yogart bread milk".

Strange how these things just can change in a short time. We still have a long way to go, but I am waiting to see what the next few months bring us.

I will update after a visit with the doctor. These doctors are the ones that have been following and tracking other ASCT kids.

Our improvements seem to be consistant with others. Here is a cut out of an email from a parents doctor out east. East from us that is..

" Thank you for all the useful information. We were at Childrens Hospital of Philadelphia on Thursday, our muscle skeleton doctor has had three kids go to Germany and three kids participate in the Duke program - what she stated is that the younger the child, the more results they are seeing in both cognitive and motor skills, the older children are seeing most improvement in cognitive areas. All good news to me- all of the kids had marked improvement."

Other than that, still looking forward to new things that will arise.

David

 

[michaelsdad00]

Wonderful News.

Thanks for posting your update...

 

[dlbelbin]

Doctor visit recap

Met with Kenneth's doctor today. It is noted that Kenneth's tone has decreased and we will not put him back on baclofen. Kenneth's tone is lesser than prior to ASCT while on baclofen. Range of motion has improved a lot. They do believe (although no scientific proof) that baclofen may interfere with the neuro development and process of ASCT. Also, we have decided to refit Kenneth with hinged AFO?s.

Spoke with Kenneth?s teachers and para today. All three have stated that Kenneth is more calm, relaxed, and starting to use his pincher fingers in doing tasks as trying to write and picking up small objects. They feel that Kenneth has made progress and improvements since ASCT.

Summing up an improvement cognitively and reduced tone and fine motor skill development.

I can?t wait to see what?s next and what time will bring us. I find this "scientifically not proven" procedure very interesting and very rewarding.

David

 

[michaelsdad00]

Continuation of improvements?

David,
It has been 7 or 8 weeks since we spoke and I am wondering if you have seen stability of any improvements or even an increase in improvements in your son, Kenneth?
Thanks,
David Snow

 

[barbara]

I would also like to know how your wife is doing. Thank you.

 

[dlbelbin]

3 months post ASCT

Update on progress. May 23rd. 3 months post ASCT.
Our son Kenneth continues to show progress. Nothing big at this point. Cognitive, fine motor and tone have shown the most improvement. Cognitively he just continues to amaze us with his skills. Although those skills could be acquired from learning in kindergarten but you never can tell. He always has done well with vocabulary and reading and is currently reading at a first grade level. He still has opportunities with a few letters like ?S? and ?Z?. He continues to talk, talk, and talk. Fine motor skills continue to improve. He uses his pinchers more and more when tasking with small objects instead of ?palming?. He is getting better control of bicycling with his legs. Tone, huge improvement. He has not been on baclofen since February. No sign of putting him back on it either. A few weeks ago his tone seemed tighter but then loosened up again. Therapists are all very happy with Kenneth?s improvements. All in all, very pleased thus far with what and where he is in his progress.

My wife Reyna continues to show some progress. Not as quick or as much as I would like, but some is better than none. I think her improvement is mostly cognitive. Focus, thought processing, organizational skills and balance have shown improvement. Nothing significant or perhaps very significant depending on how you look at it. From my readings, it looks like TBI patients will show slower progress if any. She believes that she has had no changes but I can see changes. She is like the energizer bunny; she just keeps going and going, from one project to the next. Pre ASCT she would not complete the projects. She would have 5 projects going on at the same time, not completing them and being frustrated. Post ASCT, she completes her projects then goes on to the next. We have seen very, very little physical improvement. I.e. use of her right hand and tone. Phone texting continues as earlier noted. Understanding that she had a great deal of damage and injury to her brain affecting those abilities, it may need more time. We are pleased with her progress thus far and hoping for continued improvement.

Like many situations, 5 steps forward ? 2 back then 5 forward. Post ASCT, the forward steps are just more significant. 10 forward, 3 back then 10 forward.

What we all do, what we all strive for, why we do all the things we do can be summed up in a story told by Zig Ziglar in ?How to Get What You Want?. Zig talks of a boy named David Latzy(spelling) who had CP. I find it an appropriate story for why we are all here. Finally found it?

David

 

[michaelsdad00]

Updates?

Hi David,
Last February, you expressed an interested in keeping the lines of communication open after the stem cell therapy. It has been awhile since I have heard from you. Any Positive, Neutral or Negative information you are interested in providing on your son's Post X-Cell Institute SCT treatment?
Thanks,
Dave Snow

 

[michaelsdad00]

Received patient acceptance from XCell Institute.

We received approval for my son's treatment from XCell Institute in Germany the other day. Not too long a wait for a reply. Probably a week or so. We are starting to make plans for next summer so we can take our other two children with us. Anyone else on this forum who has received a stem cell therapy from them please feel free to pass any information on to me if you wish. I'll have to re-read David Belbin's narrative again.
David Snow

 

[barbara]

Did you ever hear from David? I don't believe that anyone is turned down, so not exactly sure what "approval" means.