Another CP/Stroke kid in New Zealand

Azriel

New member
Hi

I'm another New Zealander and am Mum to Oscar who is nearly 17 months old. We are currently awaiting an MRI for Oscar on 11th September but the most likely prognosis we have to date is a paediatric stroke or possibly CP. However, given a stroke can cause CP basically we have damage to his brain on one level or another.

Oscar does sit unaided but cannot transition to the floor from sitting or from the floor to sitting. He cannot crawl but he does roll everywhere. He can stand if you are there to watch him but uses his tummy to balance not his hands. His speech is also affected with not one word from him as yet. The day he says Mum will be a very exciting day for me as all the things I took for granted with our first son are such important milestones for Oscar. Additionally, he does not do the normal things you'd expect - waiving (well he did but stopped), clapping, reaching to be picked up etc. Intellectually all seems to be fine.

We have found this site exceptionally valuable and are kicking ourselves for not banking the cord blood of both our sons. However, I have contacts at the Leukaemia and Blood Foundation and in NZ if you bank the cord blood you cannot use it for fringe treatments such as CP or stroke here. Even if we had banked it I'm not sure if we could have got it out and would have had to transport out of NZ for use and not sure if it would have been achievable to do that and preserve it.

From what we have researched we think we will likely opt for Stem Cell Therapies in US or Regenecell. However, I would like to get a good understanding of how many they have done in this area with small children and the results.

Currently we have Oscar in Conductive Education a Hungarian based therapy for CP children five days a week which is pretty trying and tiring for the wee lad. We hope that for Oscar we can get him progressing with this treatment but like many others are hoping that Stem Cell treatment can really help him.

Kind regards

Merryn
 

barbara

Pioneer Founding member
Caution

Hi and welcome to the forum. I was concerned when I read that you might go to Regenecell. Unfortunately, Stem Cell Biotherapy (SCB) contacted Dr. Peimer and was trying to set up some type of referral system which in reality would have just been SCB using the Regenecell name to continue doing business in Tijuana. I contacted Dr. Peimer to see if he truly was setting up an operation in Mexico. I personally did not receive an answer other than they were dismayed to learn that SCB had been redflagged on this forum and they would look into it. I have since heard from a very reliable source that Regenecell was not planning to have its own staff and doctors on site in Tijuana and that it was nothing more than SCB doing the same old, same old using the Regenecell name. I am going to contact Dr. Peimer again and ask just what the status is because his site still mentions treatment in Mexico at the IBC Hospital with Dr. Romero. This is SCB! If you were going somewhere to have treatment with Dr. Peimer being there, I would say go ahead, but since this is not the case as I understand it, BEWARE!!!!!!!!! SCB is not the place to take a child in my opinion and the opinion of many caring parents on this forum who had protocols switched on them at SCB as well as other problems. I personally went there and became very ill afterwards. I shudder to think about a small child getting ill. I would implore you to broaden your search and seek consultations with other doctors or get an affirmation that Dr. Peimer will be the one to treat your child and no one else.
 

Azriel

New member
Regenecell

Hi Barbara

Thanks for the warning. We haven't made any firm decisions and I would only agree to Regenecell if Dr Peimer was the one to do the treatment. This is a fringe area to a certain extent while some exceptional results have been had I am obviously concerned first and foremost for the welfare of Oscar.

I will go into more detailed analysis with both organisations once we have the firm diagnosis for Oscar.

Initially I was thinking Mumbai with Regenecell not Tijuana anyway as we have good contacts there who can check out the facilities for us. A staff members family live there. Obviously from NZ we are a long way from treatment anyway.

I think I need validation around how many and what ages of toddlers they have treated.

The area that worries me most I think is the Chinese facilities as I'm a bit worried that they are smoke and mirrors and I'm not sure how accurate their info is. That may just be a bias against a non democratic country and how they control their people but I can't shake that feeling.

Cheers

Merryn
 

barbara

Pioneer Founding member
Kaci's mom made some excellent points about the quality of the cells. This is so important. If you are not considering the Tijuana location for Regenecell, you should be okay as far as avoiding SCB. It is difficult to know what is hype and what isn't at times and that's why we have this forum. Real life experiences from patients and caregivers is what we want and not solicited testimonials (have you ever read a bad one on any site?) and press releases. There are some good success stories coming out of China also, but again, you have to be very careful to really do your research. I wish you all the best.
 
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