Researching for my 6 year old with spastic athetoid cp

[Erin]

I am Erin, my sons name is Keith. I have been spending the last week staying up until the wee hours of the night researching. Stopped by this forum time and time again and decided it was time to become a part of this group. I hope to learn a lot and keep inspired by you who have been through stem cell therapy. My husband and I are committed to making this happen for our son and are looking for the right place for him. The rest is out of our hands!

To fill you in on Keith. He was born at 41 weeks by emergency c-section after a typical pregnancy. Obviously there were complications in labor and the medical staff was less than swift on their feet. Keith had given up by the time they got to him, they resuscitated him for five minutes and took him to the nicu and put him on phenobarbital for a week. Prognosis was not good for him, but he has already conquered so much in his short life, including changing mine! At this time in life, Keith is not able to sit up unassisted, walk without the full support of a gait trainer, feed himself, or speak. He vocalizes a lot, but uses an eye gaze computer to communicate, which is absolutely amazing technology. It has helped us get to know our sons heart and mind! What a blessing! Cognitively he is functioning at age level. We have been committed to PT, OT, Speech therapy since birth, hippotherapy for 2 years, which has definitely helped to get Keith where he is now. We have been adhering to a strict schedule of Botox injections by the best doctor in this part of the US as far as I am concerned. We have seen improvements, but are looking for more, and Keith is up for the challenge. We feel that stem cell therapy is the next step for us to have the right of mind that we are doing everything possible to improve his quality of life. Yet, we are not willing for the FDA to get with the program and make it legal in the US.

I have personally been led to SRI and DR Ramirez del rio and see w
that there are several people who are proponents of him.

 

[Kaci's Mom]

Hello. Welcome!! Your child sounds like a (almost) mirror image of mine (Kaci's 8 in 2 days) - from the birth, to the diagnosis. Their therapies are similar except for Kaci and I went to Ontario, Canada for 10 weeks when she was 2 1/2 years old to a place called Ability Camp (you may have heard of it?). It's all about Conductive Education and Hyperbaric Oxygen. If I were to make a recommendation, I would really give HBOT a try! It made a HUGE difference in spasticity for Kaci in her arms and legs. I also have to say I would have to recommend the Conductive Ed as well. They taught Kaci to feed herself. She actually made really big gains her first 5 weeks there! We haven't used Botox, but she gets an hour massage twice a week, which seems to keep her looser.

As far as stem cells, I would definitely have to recommend that!! We really like Dr. Ramirez- but we've also ONLY been to him. I am VERY interested in using Kaci's own stem cells the next time. The problem is finding where!

Good luck! Let me know if I can be of any help.
Kristin

 

[michaelsdad00]

Welcome Erin!

Update: In 2011, X-Cell was thankfully shut down by the German government.






Where is the big question at the moment. We are in a holding pattern at this time, waiting for a good facility to take our son to. Dr. Ramirez is wonderful. After 5 visits there we also are looking for autologous stem cells for Michael. Regenerative Medicine Institute wants $25,000 to take his adipose stem cells and give them backto him in two treatments. We are leaning towards Germany and X-cell at this moment, no decisions yet.
Dave Snow

 

[Erin]

Thank you for the warm welcome!

Kristen-

I have read about Kaci and the progress she has made, what an inspiring story! I will definitely look into HBOT more with a different frame of mind. I did a small amount of research a few years ago and was scared away by the risks that are associated with it, like blindness and hearing loss.....I am sure that those risks are mostly when the chamber is not used correctly. As far as Conductive Learning, I wish that there was somewhere closer to Oklahoma that provided that type of intense therapy, I have heard some really great things come from the time spent there. In fact, there was a little boy at Keiths school that moved to be close to a center because it had helped so much, he was a lot more functional than Keith. That is wonderful that Kaci was taught to feed herself. Did she have any swallowing issues to overcome before reaching that point?

What was the biggest change you saw in Kaci after stem cell therapy? Less spasticity? Better function?

How long did you have to stay in California to meet with Dr Steenblock before having the therapy done? From what I understand it could be several days for testing and such. The reason that I am looking into Dr. Ramirez is because it seems as though they have had the most success with CP kids. Also, because they use the donor stem cells, which are said to be more effective than that from the bone marrow. I see you are wanting to try again with Kaci's own cells, is there any information that persuaded you? Would you like to share?

And one last question on todays game of "newbie asking a million questions"
Did you ever inquire as to the difference between the 8 treatments you get in China versus the 1 you get with Dr. Ramirez. Although I know you can go back for more treatments at a later date.

Thanks so much for your time, I really appreciate it and believe that you are such a valuable resource.

 

[Erin]

Thank you Dave

Obviously you were seeing improvements if you did 5 treatments. What kinds of improvements are you seeing? What method of application do you think worked the best for your son so far? SubQ, IV, with mannitol, or any other combo? Is there a reason you are trying autologous stem this go round, were you getting maxed out with results from donor cells or another reason?

Thanks for your time! Call me sappy, but it's really nice to not feel alone, to know that there is a community!

 

[barbara]

Has anyone tried adipose derived stem cell treatments that you know of? I would think the lipo would be tough on children. Also, has anyone gotten any updates about X-Cell? I know I haven't. My impression of them remains the same, they are like a factory - treating any and all diseases, however, they have an excellent PR and sales team.

 

[Kaci's Mom]

I chose Dr. Ramirez and SRI for many different reasons. My main reason was the experience they have with kids with CP. I considered China for a few minutes and decided their whole program was too invasive and long- plus I tend to wonder about the "quality control" there- can't forget about the tainted baby formula or the lead we still get in our toys... Mexico is basically an in and out procedure. For Kaci there is no prep time days before, in fact I have actually never met Dr. Steenblock in person (however that's just us- I know he does meet with kids who are more severe). The cost too is VERY reasonable. And we are also lucky to live fairly close to San Diego (2 1/2 hour flight). For us we go down for about 6 days and vacation. She does the stem cells on the last day, then we leave the next day.

The biggest changes I've seen over the last 3 treatments is a major improvement in her fine motor. Also she has continuous steady improvement with her gross motor. Yes the spasticity has further decrased with the stem cells too! Chewing and swallowing were issues early on but the HBOT and and now the stem cells have for the most part fixed that. A lot of the improvements she got when we were at Ability Camp with the HBOT (that's a good combination!) The improvements did slow down after about 200 hyperbaric hours though.

The reason I would like to try autologous stem cells next time is because they are hers. I have noticed each time Kaci has a treatment she gets a low grade fever for a few days after. I think that's her immune system saying that those stem cells are a foreign body. I could be wrong. Anyway, I think it's time to try something new, just waiting for Dave to find the place (ha ha, just kidding).

Kristin

 

[Erin]

Those are basically the same concerns I had about China, but I hadn't really thought about the tainted formula and lead paint toys. Not a good reflection on their standards. The travel expenses and time have played a big part of our decision making too.
It is encoraging to hear that you have seen good results across the board. We can only hope that Keith will respond well. As far as HBOT I think I read that SRI does HBOT is this true that you know of? I was wondering if we may be able to fit some time in while we are there. I understand they like you to not do HBOT after stem cell therapy, but what about before? How long between chamber sessions do you have to go and how long can you go in one session?
As far as her fever is concerned is it anything that disturbs travel? Is she normally tired or overly excited afterwards? Any other side effects you've experienced?

What do you guys enjoy doing while your down there vacationing. I know Sea World is there, Keith would love that! We've taken him to Disney world twice and have wanted to go to the Sea World there, but get so busy on the Disney resort that we never get a chance to leave.

I am in the process of getting keiths passport and have contacted SRI with no response. Can you suggest any way to get in contact with someone there or do you go directly to Dr Ramirez?

 

[Kaci's Mom]

Dr. Steenblock does do HBOT at his clinic in California. But the way HBOT works is on a cumulative level. Usually you start with 40 hours- either 1 hour each day, although some places you may stay in the chamber for 1 1/2 hours. This takes several weeks, which is why it is best to be close to a facility where you can do that. From what I've read, it's not recommended to use HBOT too soon prior to a stem cell treatment because the stem cells hone in on the injured places in the body. And since oxygen helps wake up the dormant neurons there is less of a chance they will migrate there- someone correct me if I'm wrong. HBOT after a stem cell treatment also needs to wait until at least 2 months post.

As for the fever I'm talking about, it is very mild- I'm talking maybe a degree and a half higher than normal- I'm just really in tune with Kaci's body temp. because she runs a degree low, so I can tell pretty easy when she's warmer than normal. She feels great the next day after the treatment although she gets tired a lot easier for about 2 weeks after.

Yes Sea World is there, along with Legoland and the San Diego Zoo. Plus lots of beaches!

I will private message you with contact numbers to SRI and Dr. Steenblock's Clinic. I might even if I were you send Dr. Steenblock a private message (he's a member here) with your questions concerning HBOT and what you have in mind.

 

[michaelsdad00]

Erin - reply

Erin,
I am looking for a bigger jump in improvements if possible than what we received. The volume of autologous stem cells taken from fat(adipose) or bone marrow is much more than what we could get from umbilical cord blood derived stem cells. In my opinion time is the enemy. A younger brain probably has more plasticity and improvement possibilities than later on is what I am thinking. Michael is 10 now. I just received news that a child who received therapy from XCell in Germany this past summer continues to show improvements. Currently Xcell seems like a good option. After my recent conversations with Biogenesis Institure, I am no longer looking into receiving stem cells through them and my recent conversations with Regenerative Medicine Institute leads me to say that they also not what we are looking for at this time for Michael.

Prior Stem Cell Therapies...
The last therapy session in 2009 was good. It was an arterial catheterilzation into the femoral artery to the carotid artery to just below the brain. They didn't use Mannitol. The treatment before that was intravenous with Mannitol. Michael was dehydrated then and his myoclonic jumps were out of control. He was listless and not in good shape. After the therapy he was calm and peaceful and we knew he was going to make it. It is hard to determine causality but I believe this 4th treatment helped save his life. The transplant probably works best via an arterial catheter but we have heard good things about a lumbar puncture as well.

3/22/09 through 3/24/09 Michael received a transplant of 7.5 Million stem cells derived from human umbilical cord blood tailored to neuron development via a catheter inserted into his femoral artery and ending at the the carotid artery. No problems encountered. We went for a week of Hyperbaric Oxygen Therapy at his Neurologist's office 5 weeks post SCT and a SPECT Scan showed that 6 plus years of Hyperbaric Oxygen and Stem cells along with everything else had resulted in activity in his visual cortex and other cortical lobes where there was no activity before. So my wife and I are pleased.

March 17, 2006: IV drip in Mission Viejo, California to treat dehydration which was exacerbated by cross country flight. 4th treatment of Purified Stem Cells derived from Human Umbilical Cord Blood Stem Cells, Tijuana, Mexico, 12 million stem cells intravenous following Mannitol to open up blood brain barrier.

October 2005: 3rd treatment, 4 million Purified Stem Cells, derived from Human Umbilical Cord Blood, Tijuana, Mexico

March 2005: 2nd treatment of 2 million Purified Stem Cells derived from Human Umbilical Cord Blood, subcutaneous injection, Tijuana, Mexico.

November 2003: 1st treatment of 2 million Stem Cells derived from Human Umbilical Cord Blood. Subcutaneous injection, Tijuana, Mexico.

 

[barbara]

Has anyone spoken to Stem Cells for Hope? I believe that they only use marrow derived stem cell treatments. Several members have had treatment through them and seem to be happy with their services.

Dave - If you go to X-Cell maybe you can provide us with a report. Patients that go there either come back and report no improvement or seem to fall off the face of the earth and we never hear from them again. It makes it difficult to assess if anyone is happy or unhappy that goes there. I don't believe they are members of ICMS which for me is of some concern. The patient registry would be such a valuable tool for them to use if their treatments are as good as their press releases say they are. If they have hundreds of patients, I would like to know why there isn't more information available. I have even done an internet search and came up with very little.

 

[Erin]

Barbara-
I just emailed through the web site, but Kristen has given me phone numbers to contact them, so I will be working that route! I will definitely let you know if i have problems contacting him. Thanks so much!

Kristen-
Thanks for all of the info. I have looked to see if there are some options for HBOT close to home, and it looks like I might have a couple of options, even ones that will be willing to treat a child with CP. I didn't realize that it was so expensive, $400 per dive, and they do 40 hours to begin with. I think that if we decide to give it a try it won't be until after SCT. Food for thought for sure.

Dave-
Thank you so much for sharing your experiences with me. So glad that Michael made it through that rocky time. I was wondering if there are certain conditions under which method of application they use? I will be interested to hear from you as well if you do choose to go to X-cell.



I had this interesting question come to my attention today and was wondering if anyone else has heard of this, or had this experience. I was asked if Keith's insurance company would still cover him after choosing to have an "experimental treatment" done. Im not sure how they would even know really, it's not like I am asking them to pay. Just thought I'd ask.

Also, does anyone know about botox injections, how long is suggested for botox to be out of the body before SCT, and how long after, if necessary? If no one knows, I will most definitley be asking when I get to talk to the doc.

 

[barbara]

I will add your botox question to next month's Ask the Doctor. Dr. Braly will be the host next month. In the meantime, maybe someone else will provide an answer.

As for you insurance, I don't normally call mine in advance and give them details of my life if you know what I mean. Treatments are tax deductible by the way although it is wise to check with your CPA since tax laws can change with the weather.

 

[Erin]

Thank you Barbara for getting that question answered for me. Where would I go to see the answers to the questions that will be asked?

 

[barbara]

Ask the Doctor

The current month's Ask the Doctor session is always in the "In the Spotlight" section. All the others are archived in the Ask the Doctor section. You may ask any questions you want of the host by sending them to me by private message or e-mail. To do that , click on Community, then members, then B, then plain Barbara and e-mail me or private message me from there.

Next month's host will not receive the questions until the middle of the month. Once I send them to the host, I ask him or her to return them in a week. This is a locked thread so there is no on going dialog with the host. Also, questions are submitted anonymously with the exception of those that I pluck from the open forum that no one seems to have an answer for.

It's a great way to ask questions of a professional in the stem cell industry. Feel free to send something else if you'd like.

 

[Erin]

Excited!

Thought it was time for an update, Keith has started HBOT! Today was our third session and he is tollerating it well. I am hopeful for some good results for the spasticty and function. But, I am just as excited about the good results we will see for the non-healing chronic ulcer he has delt with in his mouth for 2 years now. He has it open about 75% of the time, it heals up, then breaks right through again. We are hoping for it to heal up for good over the next few weeks. That will give the boy some ever needed relief for sure! Poor kid is in pain most of the time, and it really affects his eating, can't say I blame him. Other than that we still plan to do stem cell therapy sometime late winter early spring. Hope that you all are doing well!

 

[michaelsdad00]

Hbot!

Erin, That is great news. The Hyperbaric Oxygen is very beneficial. My son Michael goes two or three times a week and we are happy with the results. Having a treatment location that is local makes alot of difference, it seems.
Dave

 

[Kaci's Mom]

Wow, I'm impressed how fast you got that going!!! Dave is so right about the "treatment location"! It used to take us at least 5 hours a day just to do travel and HBOT.

Speaking of, we're still using the mild pressure without the concentrated oxygen. Not sure if I see a difference, haven't gotten to spend as much time in there as I would have liked- Kaci got a cold, so there was about 5 days we stayed out. Also a mild ear infection set us back another 4 days.

I had Kaci hypnotized last week to boost her confidence. It actually worked very well! It's always been a major setback for her- being afraid of falling. Since the hypnosis, I am really able to see her actual progression- now that the "intimidation" factor of falling, which has been holding her back is gone. I wish I had done it sooner!

Kristin

 

[michaelsdad00]

Hbot

Kristin,
We've been trying to vary the pressure abit with Michael to avoid habituation to 1.5 ATA. Yesterday was Michael's first 'dive' at 1.75 ATA and he did very well.
Dave

 

[Kaci's Mom]

Dave,
So what depth does 1.75 ATA simulate? I can't believe we're having issues with 1.3 ATA right now. But she has some head congestion she just can't seem to shake. I've actually had to back off the pressure during the dive to regulate her ears. Anyway, let me know if you see a change! How's your quest to find a clinic?
Kristin