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Post by vivereconlys on Mar 11, 2009 12:19:13 GMT
Hi, my name is Diego and I am Alex’s dad. Alex is an Italian child who is affected by lyssencephaly. I wrote in this forum to let you know Alex’s web site www.vivereconlys.it where we tell you his history and his rehabilitation. I write you today to have your opinion about his situation. I knew from some friends and from some tv programs that in Thailand there is an organization composed by 5 hospital that makes injection of cell stems with wonderful results (I mean with good progress, any miracle). I saw some reports about it on You Tube too. For that reason I started visiting the Beike Europe web site www.beike.ch/Beike-Italia (it is in 4 languages). It is and European Association who manage European people who has this injections. You can find there all the information and FAQ are interesting. I found out reading FAQ that this injection can treat lyssencepahly too. I inquired about this treatment and we got the negative opinion of the Italian doctors. We asked to families that tried the injections on their children and they talked us about the high specialization of this Organization and of the doctors. We have some doubts yet. Can you give me more information? Do you know some child who had this treatment? What do you think about it?
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Post by Kerri on Mar 12, 2009 11:01:06 GMT
My daughter is 16 months and has isolated liss. I went on your sons website some time ago and became interested in the doman programme you were doing. In fact you gave me hope -your son was the only liss child that i could fing doing an institutes programme. I too have and still am looking into stem cell treatments. I have spoken to someone that worked for beike. The problem i came across was finding children that had liss having the treatment. Any way i came across a lady who has a 10 year old daughter and she is an ABR trainer (we do this with Billee along with an institutes programme). Her daughter has had i think 3 stem cell treatments. You can contact her through the following website: www.miraclekidz.com her name is Jessie. Please visit my daughters website and keep me updated with your search and any progress. www.beautifulbillee.com.au Thanks and good luck
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Post by vivereconlys on Mar 12, 2009 12:59:45 GMT
Hi Kerri I visited the website of your child. Just put the link, the site of Alexander. For any news please contact me. This link talks about a child who has made six treatments with stem cells. stemcellschina.com/blog/chandlerbrandt/Thank You
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Post by vivereconlys on Mar 12, 2009 13:00:35 GMT
I forgot! Let me know what you think.
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Post by kiwimeg on Apr 8, 2009 4:28:38 GMT
we are looking into this as well, hopefully this year we get to go we are looking at thailand I dont really know where to start but I just get a good feeling about the person I am talking to about it, I know that is a really bad reason to choose a clinic but we dont want to have to fly to far and also as it so expensive the flights are a great price . Germany has xcell if we were over that side of the world I would consider them.
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Post by kiwimeg on Apr 8, 2009 4:31:17 GMT
yes we have doults too but we have spent four years following the drs way with no seizure control so at worse we would have used 35,000 usd and had visit to a different country and if it works we will have a child who will have better controled seizures and less autism traits.
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Post by vivereconlys on Apr 16, 2009 6:12:45 GMT
Hello Kiwimeg excuse the delay but now I read the message. I know the x-cell center in Germany. I sent the medical records of Alessandro, however, the therapy can not be done because the lissencephaly gene is damaged. This therapy can be applied only when the disease is not genetic. If You want to send you an email with the address of an American mother who has made the therapy Beike to the child. Of course the child has the lissencephaly
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Post by melissa on Apr 16, 2009 19:18:31 GMT
Hi, Just wondering if you can send me the e-mail of the American lady. I would like to chat with her. My email is melcle@nb.sympatico.ca Thank you.
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Post by vivereconlys on Apr 17, 2009 6:08:12 GMT
hello melissa. just ask this mother if I can. I believe that there will be problems
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Post by vivereconlys on Apr 17, 2009 18:28:28 GMT
this is the link on facebook of her mother whom you spoke. She called Kristin Street while his son Chandler. If you are registered on facebook you do a search on Kristin Street and ask for the friendship, so you can see photos of Chandler. If you are not registered on facebook, Kristin gave me permission to write your mail kristinstreet71885@hotmail.com Bye Diego
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Post by ckecarlton on Jun 8, 2009 15:45:25 GMT
My son, 10-weeks-old, was recently diagnosed with lissencephaly. He also is missing his corpus collosum.
We saved his cord blood.
Does anyone have suggestions on where to point me to see if he would benefit from his own cord blood?
Thank you, Catherine
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Post by vivereconlys on Jun 14, 2009 5:13:35 GMT
My son, 10-weeks-old, was recently diagnosed with lissencephaly. He also is missing his corpus collosum. We saved his cord blood. Does anyone have suggestions on where to point me to see if he would benefit from his own cord blood? Thank you, Catherine to use stem cells from your child you must do before the examinations of DNA, chromosome etc ... If the tests do not you see genetic defects Visit this site www.xcell-center.com/Bye Diego
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julia
New Member
Posts: 2
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Post by julia on Aug 13, 2009 18:17:58 GMT
My daughter’s age is 10 month .but she don’t have normal activities like normal childs .after that I refer neurologist for her & I got MRI, BERA TEST , BLOOD TEST , EYE TEST , Than doctor suggest she suffer from lissencephaly because of her small head size that is microcephaly. I also do accupressur and accupunture, .after all this my baby don’t have any activity.
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julia
New Member
Posts: 2
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Post by julia on Aug 19, 2009 14:18:04 GMT
• • Significant lack of sulcation in the temporo-parietal lobe bilaterally associated with a mildly thickend cortex and band heterotopia underneath it . Irregularity of the superior and middle temporal and posterior gyri is seen with mild irregularity of the same suggestive of polymicrogyria. • • These imaging findings are suggestive of lissencephaly with a paracentral predominence. • • Subtle T2 signal changes with extreme loss of the posterior paraventricular white matter is also noted. Thinning of the posterior body of corpus callosum is also seen. Possibility of periventricular leukomalacia in addition needs to be considered. • • DR.SMRUTI MULANI - MD , DNB • CONSULTANT RADIOLOGIST. this is the MRI report of my baby.Please give reply soon
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Post by Chandlers Inject on Jan 4, 2010 16:29:51 GMT
FYI: Just thought I would let you know that there has been a child with Lissencephally that has gotten stem cell injections in CHINA this past year you can find out more information at stemcellschina.com/blog/chandlerbrandt/His name is Chandler... Just thought everyone might be interested
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