Catégorie : stem cells

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Here’s the video of Dr. Kurtzberg speaking at the New Horizon Arizona Stem Cells conference -April 2019

Here’s the video of Dr. Kurtzberg speaking at the New Horizon Arizona Stem Cells conference :

(April 2019)

https://www.facebook.com/1115496706/posts/10218506814957717?s=1115496706&v=i&sfns=mo

7:30mins discuss male cells getting into brain of CP

Hydrocortisone reduces fevers

12mins starts to talk about autism

19mins only male donors for the cord tissue trial are being used but doesn’t mention if male are better than female. Taken from c-section babies (interesting as c-section implies potential complications). They expand the cells to passage 2. Each cord produces about 60billion expanded cells, amounting to 60 to 100 doses (@ 2million cells per kilo).

23mins one child didn’t use Benadryl and started coughing from transfusion, resolved with the use of Benadryl.

25:40mins hypoxic brain injury helped with cord blood. But beneficial effects stopped when CD14 cells are removed!

33mins slide with cell characteristics for CP trial.

36mins gross motor improvements seen in CP study. Higher doses showed better results. Would love to know what the higher dose is versus the smaller dose.

40:40mins suggesting a cord blood transfusion followed by an MSC booster.

47mins they have over 2000 families on their wait list which is over a years work for them.

If you can’t see hole video on my Facebook please try on YouTube ( I separated in 3 parts):

Part 1:

https://youtu.be/OVAaUpNzCEY

Part 2:

https://youtu.be/RUaxU4Hga_w

Part 3:

https://youtu.be/pmJ6dVlgK3s

And I will put all power points Photos ( sorry not in in order of presentation):

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CD14 cells in cord blood that is special and helps repair brain cells from low oxygen in brain or hypoxic injury

About stem cells :

Watch this dr Kurtzberg presentation ( in English from 12 minutes)

https://m.youtube.com/watch?feature=youtu.be&v=IZ7GeQ3mM7M

From the 20:54, Dr Joanne Kurtzberg says It’s the CD14 cells in cord blood that is special and helps repair brain cells from low oxygen in brain or hypoxic injury

And as I know nobody doing yet hole donor cord blood HLA matched exept Duke ( and yet in clinical trails)….

More on Dr Kurtzberg’s presentation of the good monocytes in cord blood cells:

10:38 [Referring to cord blood cells]…and about 10% are a kind of cells called the monocyte. Monocyte in cord blood is unique and it’s the cell that we think is helping patients with cp and autism. And we don’t think it’s helping because it’s engrafting in the brain or turning into neurons or turning into brain cells. We think it’s helping because it puts out chemicals that signal cells that’s already in the brain to repair damage.

human UCB (hUCB) is a complex internal environment rich in a variety of stem/progenitor cell populations, such as hematopoietic stem cells (HSCs), endothelial progenitor cells (EPCs), UCB monocytes (including T regulatory cells (Tregs) and monocyte-derived suppressor cells (MDSCs)) and MSCs…etc….

UCB mononuclear/ whole blood cells in the perinatal ischemic and hypoxic brain model can reduce the inflammatory response to treat injury. To evaluate whether transplanted cells relieve neuroinflammation, there are two indicators:

(1) reduce the infiltration of CD4 þ T cells into the brain; and (2) reduce microglial activation.

all UCB cell types except EPCs have CNS immunoregulatory capacity.

Tregs and monocytes are present in the normal body at a considerable level, and are indispensable in the regulation of peripheral and central immune responses.

« Currently, the use of UCB-based interventions for CP is limited as the components of UCB are complex and possess different therapeutic mechanisms. These can be categorized by three aspects: homing and neuroregeneration, trophic factor secretion, and neuroprotective effects. »

https://www.researchgate.net/publication/328690064_A_New_Approach_to_Cerebral_Palsy_Treatment_Discussion_of_the_Effective_Components_of_Umbilical_Cord_Blood_and_its_Mechanisms_of_Action

There are several paper about cord blood CD14+ cells neuroprotective action ( CB Monocytes – CD14+ cells protect brain cells from Oxygen and Glucose Deprivation in Cortex). Even more: cord blood cells contain many neurotrophic factors, which are very important for brain regeneration.

•Brain-derived neurotrophic factor,

Nerve growth factor-

•Neurotrophin-3 –

•Neurotrophin-4 –

•Glial cell-derived neurotrophic factor –

•Cerebral dopamine neurotrophic factor –

•Mesencephalic astrocyte-derived neurotrophic factor

•Pigment epithelium-derived factor.

https://www.researchgate.net/publication/289510468_CD14_human_umbilical_cord_blood_cells_are_essential_for_neurological_recovery_following_MCAO

Latest Duke publication about CD14:

https://cdn.fbsbx.com/v/t59.2708-21/61565783_397700577506188_2233617151242010624_n.pdf/670794.full.pdf?_nc_cat=105&_nc_oc=AQm-qC11yqS79HyUmrkqnToptSZJxSHk4ULPH1L2INIazkDe9vro0UHWF1fubLjHPxE&_nc_ht=cdn.fbsbx.com&oh=094475c2789b013855fecdc8d8bdda6d&oe=5D1B23DB&dl=1

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intravenous autologous cord blood therapy for infantile cerebral palsy

I am not sure if you will be interested in this study( the doctor (Arne Jensen )who wrote this first case treatment for boy in Germany after cardiac arrest with autologous cord blood after global hypoxic-ischemic brain damage caused by cardiac arrest followed by a quadriplegic persistent vegetative state.

But still I will post it in case if sombody will need it:

https://www.researchgate.net/profile/Arne_Jensen/publication/259672653_Autologous_Cord_Blood_Therapy_for_Infantile_Cerebral_Palsy_From_Bench_to_Bedside/links/0f31753295ef18d26d000000/Autologous-Cord-Blood-Therapy-for-Infantile-Cerebral-Palsy-From-Bench-to-Bedside.pdf?origin=publication_detail

Conclusions

From an experimental point of view, treatment for acute hypoxic-ischemic brain damage using mononuclear cells

from human umbilical cord blood was shown to be effective, at least in the model that we and others employed. Also, insights in some important aspects regarding potential mechanisms and modes of action involved have been gathered. However, since there is virtually no information neither on the optimum amount of cells needed nor on the ideal timing of transplantation after the insult to be effective, future work should also focus on these clinically important questions.

From a clinical point of view, intravenous autologous cord blood therapy for infantile cerebral palsy is safe, however, based on the preliminary uncontrolled clinical data available, it appears only to be effective in certain cases. It is important to notice that in the majority of uncontrolled cases it was not effective. Future work and ongoing clinical trials primarily must define both the groups of brain disorders responding and the therapeutic window, in which autologous cord blood therapy may be effective, in order to avoid giving false hopes to the patients and their families. Time matters—in several respects.

The Future State of Newborn Stem Cell Banking:

https://www.researchgate.net/publication/330484459_The_Future_State_of_Newborn_Stem_Cell_Banking/fulltext/5c420bf4458515a4c72f8d18/330484459_The_Future_State_of_Newborn_Stem_Cell_Banking.pdf?origin=publication_detail

Ps:

Cp study 2017 ( Duke)

https://lookaside.fbsbx.com/file/CP%20study.pdf?token=AWzYAXfE0seVXuFwhWBr81Gm3CwpcxnuKfrd_BMMwlsq-3o2ZPHWwbvZc97YU-LH5_3iq7XkENHWq2DI-pdY-ccpChLys-i1zx_4-RB4frx6YaZBcF_kmoybNfTcIiXyZbrH-GmNl5RZ1GXrZRFRm3j9YLtyP8YIemNsyr0jBCqbzc__FmWFw2t5JHO0inJfBGA

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stem cell and cerebral palsy & autism Duke

You will be very surprised why I put CP and autism together in this article but in fact by reading all clinical researches I found that for stem cells therapy protocols for autism studies they are practically same as for CP studies…..

I will start with this powerful video ( Duke):

https://youtu.be/IZ7GeQ3mM7M

So I went through the attached Dr K lecture on link (in Israel) and its great. Final found evidence that sex of the donor does not impact success. Some key points:

19:32 mins – starts to talk about autism

21:00 mins – when brain cells are shocked, neurons die unless cord blood is added.

22:07 mins – they took out different cells from the cord blood until they identified CD14 as the only one that stopped the cell death.

27:00 mins – dose is important – high dose showed positive effects.

32:20 mins – 25 million/kg is the higher dose (same dose for the leukemia and CP study).

37:50 mins – With the high dose, MRIs showed improved connections in the brain.

41:00 mins – for genetic conditions, need to do chemo to get the new cells to stay in the brain, this is a serious risk. If genetic issue, use someone else’s cells.

45:00 mins – babies born with autism don’t control which pathways turn on and off, some pathways that are supposed to shut down in early infancy, don’t. This includes microglial activation, which causes sensory issues. (this actually matches Nemechek protocol).

46:30 mins – Vineland would usually go backwards over time as severe kids get older, but during the trial, their scores stayed stable.

51:55 mins – trial due to finish in August, with answers released next fall.

1:09 mins – CD14 cells can’t be expanded. Epilepsy shown no improvement in seizures.

1:12 mins – not know yet whether age impacts success.

1:15mins – the 30% of kids that didn’t show vineland improvement, tended to have lower IQs.

1:17mins – no preference seen whether male or female donors are better.

Cp study 2017 ( Duke)

https://lookaside.fbsbx.com/file/CP%20study.pdf?token=AWzYAXfE0seVXuFwhWBr81Gm3CwpcxnuKfrd_BMMwlsq-3o2ZPHWwbvZc97YU-LH5_3iq7XkENHWq2DI-pdY-ccpChLys-i1zx_4-RB4frx6YaZBcF_kmoybNfTcIiXyZbrH-GmNl5RZ1GXrZRFRm3j9YLtyP8YIemNsyr0jBCqbzc__FmWFw2t5JHO0inJfBGA

One more interesting ( but more old video):

https://youtu.be/d4TD2eJV8bA

donor cord blood from a donor cord blood bank ( only Duke in USA :they just starting first trail with donor cord blood with hla matching….there are some others clinics doing donors cord blood but nobody doing hla matching exept Duke) as well they are doing donors MSC first trail for autism in Duke: This is duke trail autism :

https://clinicaltrials.gov/show/NCT03099239

• Donors MSC from cord tissue ( HLA matching no needed) Duke is doing naw MSC expanded from cord tissue as part of ongoing donor trail for CP : Duke donor trail CP: (cord blood and cord tissue expanded MSC):

https://clinicaltrials.gov/ct2/show/NCT03473301?term=Stem+cells&cond=Cp+AND+%22Brain+Injuries%22&rank=4

So for Duke donor trail CP: (cord blood and cord tissue expanded MSC):

https://clinicaltrials.gov/ct2/show/NCT03473301?term=Stem+cells&cond=Cp+AND+%22Brain+Injuries%22&rank=4

So in this CP trail Duke will decide children’s into 3 groups:

Cord blood group

MSc tissue group here what they will recive:

“the « MSC » arm will receive three hCT-MSC infusions, one each at baseline, three months, and six months” and “Cord Tissue Mesenchymal Stromal Cells

Subjects will receive three intravenous infusions of 2×106/kg human umbilical cord tissue cells (hCT-MSC), manufactured from allogeneic umbilical cord donors”

And Placebo group ( nothing during first year of trail just at the baseline they will recive stem cells treatment )

Contact for Duke :

Duke will do it outside of trials : expanded access or compassionate care.

( but you need to pay for it… Oh and the fee is 15000$) some USA parents got it covered by insurance but not all of them ( diferent insurances may be -don’t know)

Requires :

1) you have cells banked ( own child stem cells from his birth )

2)you have sibling cells banked that HLA matches your child

3) no prior stem cell treatment

4) no ventilator

5) no trach

6)Based on childs weight- Must have a minimum of 25 million cells per Kilogram stored.

7)Duke also turns down if child had immunosuppressive drugs at all.

Process takes anywhere from 6 months to 1 year to get approved. Must turn in a ton of paperwork, records, scans.

3-4 day process ( presence in Duke) 45min IV in arm one injection.

Duke Stem cells contacts:

https://www.dukehealth.org/treatments/cord-blood-transplant

The objective of the study is to enable access to sibling or autologous umbilical cord blood (UCB) infusions for children with various brain disorders.

The use of UCB in this fashion is based on safety and efficacy data from prior and ongoing clinical trials at Duke University Medical Center in over 700 patients with these diagnoses infused with autologous or sibling UCB over the past decade.

Autism Spectrum Disorder

Autism

Cerebral Palsy

Hydrocephalus

Apraxia of Speech

Hypoxia Ischemia, Cerebral

Drowning; Anoxi

Duke:

Adress:

Pediatric Bone and Marrow Transplant Program at Duke

Joanne Kurtzberg , MD

Durham, NC 27710

401-8002

Duke Linet: 919-668-1119

cordbloodtherapyinfo@dm.duke.edu

Bethany Kister RN

Joanne Kurtzberg, MD

Director, Carolinas Cord Blood Bank

Chief Scientific Officer, Robertson Clinical and Translational Cell Therapy Program

Director, Pediatric Blood and Marrow Transplant Program

DUMC Box 3350

2400 Pratt Street Room #9026

Durham, NC 27705

919-668-1119 (phone)

919-668-7161 (fax)

kurtz001@mc.duke.edu

Dr Kurtzberg in Duke university doing just exceptional research for stem cells forCP children’s and for autism ( and if one day it will be recognized by fda it’s because if duke efforts)

Next to watch I will advice you:

Dr. Kurtzberg’s virtual conference at the World Cord-Blood Day 2018:

Extending Cord Blood to Regenerative Therapies for the Brain: Autism, Cerebral Palsy & Stroke: Dr. Joanne Kurtzberg (Duke Department of Pediatrics)

Dr. Kurtzberg’s research has focused on children with selective inborn errors of metabolism. Her work has shown that cord blood cells, administered intravenously after myeloablative therapy engraft in the brain. In addition, DUOC-01, a cord blood derived cellular therapy that promotes myelination, is undergoing testing to augment standard umbilical cord blood treatment in children with leukodystrophies.  In this presentation, Dr. Kurtzberg will discuss her on-going research using cord blood to potentially treat autism, cerebral palsy and stroke.  She also will explore the potential use of DUOC-1 and highlight the importance of quality control considering the numerous new potential clinical applications of cord blood.

For those that didn’t get the chance to watch it, here’s Dr. Kurtzberg’s virtual conference at the World Cord-Blood Day 2018 that took place on November 15. This link will allow you to bypass the registration process and go directly to the presentation. Once you start watching it, don’t pause or switch apps as you won’t be able to go back (you’ll need to watch the video all over again if you happen to pause.) It takes about 35 minutes to watch the entire presentation. — AND here’s also a link to a separate interview they had with Dr. K :

Interview: https://app.gotowebinar.com/sl/index.html?fbclid=IwAR0igudPXP0xZ2gq-MS9yyaMX-PIlgxBd8Rv2XZNdUOt1ytvpS5EtyZjgv0#/4138639127435702018/387074667558437643

Conference: https://app.gotowebinar.com/sl/index.html?fbclid=IwAR1U_R3OvgNnYgLM6fuL58InfAzp_c7gAAk2a-jGRBP-AC4ZQgqnpeqUqAY#/8722573472398615298/2096575555213456652

you can watch other world renowned experts in the field in this link

https://www.worldcordbloodday.org/video-recordings-world-cord-blood-day-2018.html

Very interesting presentation: ( need to register in order to see and listen):

« “Cord Blood for Traumatic Brain Injury / Neurological Injuries” – Dr. Charles Cox : « Neurological injuries have both a primary and secondary component. The secondary component is mediated, in part, by pro-inflammatory cells from the monocyte/macrophage and microglial lineages. Many cellular therapeutics, cord blood in particular can dampen the hyper-inflammatory response to injury that can be deleterious to ultimate repair and recovery. This presentation will highlight some of the potential mechanisms of action that serve as the background for the use of cord blood for these indications. «

French:

Pour ceux qui n’ont pas eu la chance de le voir, voici la conférence virtuelle du Dr. Kurtzberg à la Journée mondiale du selules souches du cordon umbilical 2018, de 15 novembre. Ce lien vous permettra de contourner le processus d’inscription et d’accéder directement à la présentation . Une fois que vous avez commencé à regarder la vidéo, ne mettez pas les applications en pause ni changez d’application, car vous ne pourrez pas revenir en arrière (vous devrez regarder la vidéo à nouveau si vous faites une pause interview commence dans 2-3 minutes de début) Il faut environ 35 minutes pour regarder la présentation entière. Et voici également un lien vers une interview séparée qu’ils ont eue avec le Dr K:

Interview: https://app.gotowebinar.com/sl/index.html?fbclid=IwAR0igudPXP0xZ2gq-MS9yyaMX-PIlgxBd8Rv2XZNdUOt1ytvpS5EtyZjgv0#/4138639127435702018/387074667558437643

Conference: https://app.gotowebinar.com/sl/index.html?fbclid=IwAR1U_R3OvgNnYgLM6fuL58InfAzp_c7gAAk2a-jGRBP-AC4ZQgqnpeqUqAY#/8722573472398615298/2096575555213456652

« “Extending Cord Blood to Regenerative Therapies for the Brain: Autism, Cerebral Palsy & Stroke” – Dr. Joanne Kurtzberg (Duke Department of Pediatrics, Marcus Center for Cellular Cures): Dr. Kurtzberg’s research has focused on children with selective inborn errors of metabolism. Her work has shown that cord blood cells, administered intravenously after myeloablative therapy engraft in the brain. In addition, DUOC-01, a cord blood derived cellular therapy that promotes myelination, is undergoing testing to augment standard umbilical cord blood treatment in children with leukodystrophies. In this presentation, Dr. Kurtzberg will discuss her on-going research using cord blood to potentially treat autism, cerebral palsy and stroke. She also will explore the potential use of DUOC-1 and highlight the importance of quality control considering the numerous new potential clinical applications of cord blood.« 

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Stem cells stroke study ( surgical transplantation)

Stroke victims in the Bay Area are seeing incredible recoveries, some literally overnight, thanks to a new kind of stem cell treatment at Stanford University.

Vidéo:

https://youtu.be/VGuBMroX7c8

Study :

https://clinicaltrials.gov/ct2/show/NCT01287936?term=Stanford+University&cond=Stem+cells+stroke&rank=1

https://med.stanford.edu/news/all-news/2016/06/stem-cells-shown-safe-beneficial-for-chronic-stroke-patients.html

Results:

https://www.ncbi.nlm.nih.gov/m/pubmed/27256670/

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Hbot +stem cells together what do we know about ?

Hi everybody I get permission to shere this informations from LEAH RODAS, Administrator and central coordinator for the Center of dr Dr. Richard Neubauer’s ( may be not everybody knows but he is one of first doctors who started to treat neurological conditions with Hbot.) Dr. Neubauer’s pioneering work with hyperbaric oxygen and the potentially recoverable brain led to the development of the first medical center in the world to focus on the role of HBOT in aiding the recovery of patients from stroke, coma, traumatic brain injury, cerebral palsy, and anoxic encephalopathy.

https://en.m.wikipedia.org/wiki/Richard_A_Neubauer?wprov=sfti1

http://www.oceanhbo.com/index.html

This one was one of reference dr Arun Mukherjee was using during his presentation at latest Denver Hbot conference 2018 :

But it was about this study as well: ( part of presentation)

case of study:

About stem cells and Hbot for congenital heart condition :

http://crimsonpublishers.com/didd/pdf/DIDD.000504.pdf

But it’s for carmiopathy case ( so stem cells injections was done near heart zone where located the problem of patient)….

Day 1 lecture 7 Arun Mukherjee:

Stem cells +Hbot ( sorry I can’t openly share this dr Arun Mukherjee PowerPoint presentation ) but you can contact me by my mail and ask privately send it to you.

So here on photos: presentation of : “Stem cells therapy and HBO for brain-injured children and cerebral palsy “ ; J L Diaz – Barbosa & F J Morales; Proc. 3d Int. symp. For CP and the brain-injured child, July 2003, Fort Lauderdale, fl,USA)

I think first : it’s old presentation 2003…. and they where using embryonic stem cells !!!! So honestly this kind of stem cells can grow to teratomas…

But in presentation of dr Arun Mukherjee he is talking about MSC ( if I understood well ? Allogenic Wharton Jelly)

So why he used such kind referral in his 2018 presentation ? With embryonic sheeps cells? For me it’s just incomprehensible….

….

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blog “Brain injury hope for parents”

My blog  » Brain injury hope for parents  »

My blog was created for parents who are searching for advice and testimonials about alternatives therapies for children’s with neurological conditions. I am absolutely for mainstream medicine I am using mainstream interventions for my son as well as alternatives therapies. Just here I am talking more about alternatives not yet recognized therapies.

I am :Svetlana

Mother of Marc

Anoxic brain injury January 2016 at age 4 years 2 months ( Before his accident, he developed normally without any problems. A simple cardiogram could show his WPW But he made 2% of the population « asymptomatic », not jugged enough % for medicine to check every child ekg at birth?)

Cause of injury: (sudden cardiac death -resuscitated- asymptomatic not diagnosed WPW Wolf Parkinson Wright syndrome before his heart stoped)

More than 5 years ago my friend from USA started an online closed support group on Facebook for HBOT called “HBOT for Pediatric Neurological Conditions ”.  She asked me to be admin of group it’s happened that she afterwards « gave » me the administration of this group. Naw group become big ( more than 1800 members) parents and professionals from hbot field.

https://m.facebook.com/groups/1834837990132052

For the first time since Marc Anoxic Brain Injury , I no longer felt alone.  I have other parents that can relate to how I feel, what is going on with my son Marc and they quite simply just “get it”.

So as well as on hbot fb page here on my blog I will welcome professionals to join my blog and share their knowledge. I will welcome parents testimonials for alternatives therapies they tried for their children’s .

And all my articles will be based on our personal experience ( for my son treatments we did) as well as on scientific studies I take in account in order to make a choice for therapies applied on rehabilitation program of my son.

So my blog is for parents with brain injured children’s.

I welcome professionals to join my blog and share their knowledge. But they have to be respectful with parents: I want you to know Doctors, that we: parents can’t just “get over brain injury”….and we just can’t accept that “nothing can be done to fix it ( the brain) especially when we see some promising researches in order to “ fix it” but not recognized and so not applied in mainstream medicine….We would love to move on in life as if our child didn’t have a brain injury.  We would love to go back to that carefree attitude, a life where this horrible nightmare never happened.  Unfortunately this is our reality.  Our entire world revolves around brain injury.  We talk about it in hopes that you or your families will never have to go through what we have.

I want you to know that sometimes the things you say to make parents of injured child feel better only make them feel worse! Please don’t say “God only gives us what we can handle”, “I don’t know how you do it”, “I could never do that”, “pray harder”, “everything happens for a reason” or anything along those lines and please don’t juge parents fir whatever they doing to help their children’s.

I believe that it is not God’s will to allow my child to suffer from anoxic brain injury.  I have to believe that sometimes bad things just happen.  And I believe that for him it’s because mainstream medicine not doing cardiogramme (ECG) for all children’s at birth … doctors ask yourself haw many children’s per year injured in mainstream medical procedures and operations?

So at the same time, if you were in my shoes you would find a way to make it work too…..We have no choice and neither would you.  It’s ok if you don’t know what to say to parents. I appreciate the honesty.

Doctors I want you to know that parents refuse to settle for their brain injured children’s even when medical professionals are asking them to.  Doctors, nurses, therapists, surgeons and alike can offer their medical opinion here on my blog but that doesn’t mean that i and others parents have to agree.  Remember, at one point we ( parents of brain injured children’s) were told our child wouldn’t make it and they did.  We were told that our child would never walk, talk, eat etc and most of our children do.   So when we are being asking to settle for our child, we just won’t.  If i settled in the first place, my son most likely wouldn’t be here where he is today.  I want my child to have the best life possible! If I can help some parents on my way to helping him so they are welcome to my blog….

I want you to know all parents of brain injured children’s worry A LOT.  I am worry when my son sleeps ….Will he die overnight in his sleep from his heart syndrome ( even if we have confirmation from Rythmologue that his 5th ablation o WPW was sucsessful) during I was sleeping?

How do I prove and collaborate with the school system so my child gets the appropriate education with the right accommodations?  And if by administration this accommodations will be denied?

How to I protect my child from the cruel world who wants to judge him?

My son is a survivor of anoxic brain injury ( statistically 4% survival rate from out of hospital cardiac arrest and from all this survivals 12% only not in végétative state like my son). And I am convinced HBOT was for him a big help! Me and my husband we are a survivors as well….We have seen things that no parent should ever see.  We have heard things that haunt us daily from mainstream doctors !

I really hope that you never have to experience watching your child suffer from any type of brain injury but should it happen, know that there are other parents just like you. And that you are welcome on my blog.

Svetlana

Mother of Marc

En français:

En français:

Mon blog a été créé pour les parents qui recherchent des conseils et des témoignages sur les thérapies alternatives pour les enfants souffrant des troubles neurologiques.

Je suis: Svetlana

Mère de Marc

Anoxie cérébrale janvier 2016 à l’âge de 4 ans 2 mois son cœur c’est arrêtait ( Avant son accident, il développait normalement sans problème Un simple cardiogramme pouvait montrer son WPW Mais il fait 2% de la population « asymptomatique », c’est trop petit % pour que la médecine conventionnelle vérifie chaque enfant cardiogramme à la naissance?)

Cause de son anoxie: (mort subite cardiaque -réanimé – asymptomatique WPW-non diagnostiquée Syndrome de WPW Wolf Parkinson Wright avant que son cœur s’arrêt)

Il y a plus de 5 ans, mon ami des États-Unis a lancé un groupe de soutien fermé en ligne sur Facebook pour l’OHB appelé «HBOT for Pediatric Neurological Conditions». Elle m’a demandé d’être administrateur du groupe et au fil des années c’est arrivé qu’elle m’a «ensuite» donné l’administration de ce groupe complètement… oui group est en Anglais. Maintenant groupe est devenue assez grand (plus de 1800 membres) parents et professionnels de hbot ( thérapie Hyperbare).

https://m.facebook.com/groups/1834837990132052

Pour la première fois depuis acsident de Marc, je ne me suis sentais plus seul. J’ai d’autres parents qui peuvent témoigner même sentiment que je ressens, tout simplement on se «comprends » entres les parents comme ça….

Donc, ainsi que sur la page hbot de Facebook ici sur mon blog, je vais accueillir des professionnels pour rejoindre mon blog et partager leurs connaissances. J’accueillerai des témoignages de parents pour des thérapies alternatives qu’ils ont essayées pour leurs enfants.

Et tous mes articles seront basés sur notre expérience personnelle (pour les traitements alternatives non reconnus que nous avons faite notre fils) ainsi que sur des études scientifiques que je prends en compte afin de faire un choix de thérapies que j’ai appliquées au programme de réhabilitation de notre fils.

Donc, mon blog est pour les parents ayant des enfants avec les dommages au cerveau.

Je souhaite la bienvenue aux professionnels pour rejoindre mon blog et partager leurs connaissances. Mais ils doivent être respectueux avec les parents: je veux que les médecins saches que on peu pas simplement « accepter des lésions cérébrales » … et nous ne pouvons pas accepter que « rien ne peut être fait pour réparation le cerveau » surtout quand nous voyons des recherches prometteuses pour ca ….mais pas reconnues et donc pas appliquées dans la médecine traditionnelle …. Nous aimerions continuer dans la vie comme si notre enfant n’avait pas de lésion cérébrale. Nous aimerions revenir à cette attitude insouciante, une vie où cet horrible cauchemar n’est jamais arrivé. Malheureusement, c’est notre réalité. Notre monde entier tourne autour des lésions cérébrales. Nous en parlons dans l’espoir que vous ou vos familles n’auriez jamais à passer par ce que nous avons passé.

Je veux que vous -médecins -sachiez que parfois les choses que vous dites aux parents ne font que aggraver notre situation. Svpl : ne dites pas des banalités comme : « Dieu ne nous donne que ce que nous pouvons gérer », ou « Je ne sais pas comment vous faites », ou « Je ne pourrais jamais faire ça », « Priez plus fort », « Tout arrive pour une raison » ou quoi que ce soit, ne jugez pas les parents, quoi qu’ils fassent pour aider leurs enfants!

Je crois que ce n’est pas la volonté de Dieu de permettre à mon enfant de souffrir d’une lésion cérébrale anoxique. Je dois croire que parfois de mauvaises choses arrivent. Et je crois que pour lui c’est parce que la médecine conventionnelle ne fait pas de cardiogramme (ECG) pour tous les enfants à la naissance … son anoxie a pu être évité si on a fait ça !

Le médecins doit se poser le question : combien d’enfants par an ont un accident dans cadre d’un procédures et opérations médicales courantes et reconnu ?

Donc, si vous étiez à ma place, vous trouveriez que se limiter que au moyenne «  reconnus » mais qui donne aucune espoir c’est pas reasonable . Et que élargir ses recherches au sciences et pas juste expérience médicale @ reconnu » est reasonable et logic. Nous n’avons pas le choix. C’est bon si vous ne savez pas quoi dire aux parents. J’apprécie l’honnêteté des médecins.

Médecins Je veux que vous sachiez que les parents refusent de se contenter que leurs enfants avec dommages cérébraux doit être just maintenu « confortable » avec soins de confort, sans espoir de progrès : même lorsque les professionnels de la santé le leur demandent. Médecins, infirmières, thérapeutes, chirurgiens et autres peuvent offrir leur opinion médicale ici sur mon blog, mais cela ne signifie pas que moi et d’autres parents doivent être d’accord sur votre point de vue. Rappelez-vous, à un moment tout les parents d’enfants avec dommages cérébraux ont été dit QUE notre enfant ne le ferait jamais et ils l’ont fait! Contre toutes prédictions des médecins….

Donc, quand medecin nous demand de nous contenter contant avec niveau de notre enfant, nous ne le ferons pas….Si je acceptais en premier lieu en 2016 à l’hôpital les conseil pareils mon fils ne serait probablement pas là où il est aujourd’hui.

Je veux que mon enfant ait la meilleure vie possible! Si je peux aider certains parents sur le chemin, ils sont les bienvenus sur mon blog …

Svetlana

Maman de Marc