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Book /Livre

Voilà mon livre « Marc L’invincible » est désormais en ligne et disponible* à l’achat dans la boutique Kindle: ( en français)

https://www.amazon.fr/dp/B07Y34WPXQ

« Marc L’invincible: L’histoire vraie d’une récupération remarquable, après arrêt cardiaque et lésions cérébrales anoxiques », est désormais disponible en livre broché dans la boutique Amazon. Les lecteurs peuvent l’acheter:

https://www.amazon.fr/dp/B07Y4KC5S1

Here is my book « Marc L’invincible » is now online and available * for purchase in the Kindle store: (in French)

I will do English translation ( just give me some time)

Ici lien vers page de Écrivain-biographe basée à Grenoble -Membre des Compagnons Biographes – Julie Lucquet qui à prêter son plume pour raconter notre histoire :

https://www.facebook.com/298833463857319/posts/670782633329065?sfns=mo

So why Hbot works not always same way in brain injury?

So why Hbot works not always same way in children’s? I am not a doctor I am just a mum like you so please I do analyze my son injury I read a lot but I am not a doctor ( take it just only mum reflection on subject) ok?

It’s very difficult question and I think even best Hbot doctors don’t know exact answer honestly

Let’s say : first of all each brain injury is unique and diferent.

I am trying just analyzing what I can as dates but as I said with anoxic brain injuries we don’t have any studies with spect scans so all this discussion just my personal suppositions ok ?

Ok i post mri of Marc before Hbot and after 80h

We have MRI in January 2016 just some days after anoxic injury

And we have MRI June 2017 after 80h Hbot … but without general anesthesia ( so some artifacts)

Be my guest if any radiology specialist want to make professional hole comparison

1. I think Age of child in the moment of injury play very big role : of child very small ( new born or HIE child for example) smaller is a child at brain injury more fragile his brain ( so same 25 minutes without oxygen will be more devastating on smallest child brain at birth or 1 month age than at 4 years old)

Second why age is important – because if child was already walking / full functioning child before brain injury -so after it will be retraining of his lost functions wile in new born it will be just training ( with less neurons in brain) I think it’s more difficult. But it’s just my opinion.

2. Of cause most important factor : it’s volume of Brain which was damaged!!!!

While there is no way of knowing how much recoverable tissue exists in the days, weeks, and years following brain injury , HBOT can increase cell reproduction and administer oxygen to tissue that was previously cut off from blood flow. The dormant cells surrounding the damaged tissue area, also known as ischemic penumbra, are responsible for much of post-stroke dysfunction. If oxygen therapy can revive these cells, lost functionality may return to the individual.

And this you can say only by MRI and Spect. But again for small children’s I am sorry but MRI don’t give exact informations ( that’s why neurologists don’t like to do MRI for cp children’s too early age …. we can really see at age 4-5 years but before it’s very difficult).

But still : Qualitative assessment of brainstem injury on T1 and T2 images in neonates with HIE may provide information on injury severity and risk of death, but objective quantitative data such as ADC values are lacking. ( if you want to read about read this study:

https://www.ncbi.nlm.nih.gov/m/pubmed/28686592/

These infratentorial areas have high concentrations of excitatory neurotransmitters (e.g., glutamate) and are especially vulnerable to the profound hypoxia-ischemia that is typical in HIE. The cerebellum acts as a satellite system of established cortico-basal ganglia networks in neonates.

If we talk about MRI of my child ( he had basal ganglia

and thalamus damages) …

In one large study cohort, 60% to 70% of infants who sustained moderate basal ganglia/thalamic injury had cerebral palsy and 35% had developmental quotient less than 70 (40). Cerebral palsy was identified in 98% of infants with severe basal ganglia/thalamic injury 

Before Hbot:

I will post his MRI ( after Hbot a bit father in this article ok?)

3. So here we come fore 3d factor : did child was cooled after brain injury???? I believe that it’s helped to my child ( yes his body temperature was cooled it’s protocol for cardiac arrest but not always for HIE ).

4. Did child had 100% oxygen or just 30% oxygen delivery as Normobaric ? It’s may be has also role to play i think.

( it’s after reading this book I think about )

This lecture is also really good explanation why Hbot is better ( than Normobaric oxygen) we get oxygen in plasma! Lisen at 44minutes :

https://youtu.be/z6qy1hq2zqM

( and by the way I agree about multiple approach with Sherr – before starting Hbot in Israel’s for my son – we did batteries of blood tests and also tubes in ears – in order to protect them against barotraumatisme).

5. And you see naw what I think about Hbot ( we don’t have real agreement between doctors what is the best protocol for brain injury – and what kind brain injury ? By the way ?) TBI or anoxic? ). Parents has some possibilities: 1,5ata 100% oxygen is most used in hard chambers by centers ( sometimes is more pressure but honestly it’s the mostly use regiment for nerology in hard chambers) and I believe that in case of my son really oxygen in Hbot made biggest changes but as I posted before in Hbot conditions contrary to Normobaric 100% oxygen…

« We found that HBO, but not NBO, reduced oxygen and glucose deprivation-induced cell injury, indicating that passive tissue oxygenation (i.e. without vascular support) of the brain parenchyma requires oxygen partial pressure higher than 1 ATA. »

More about read my post in blog:

http://brain-injury-hope.com/2019/04/normobaric-or-hyperbaric/

About other possibilitiy: 1,3ata without oxygen

Of cause first of all it’s the most “ not risky “ protocol for very injured children’s so may be also that’s why a lot doctors prefer start really very-law presssure ( case child brain really very damaged) and if child very small -very fragile.

So do the 1,3ata without oxygen will give same results for anoxic injury as 1,5ata 100% oxygen??? I don’t know 🤷‍♀️

I believe that in acute period use oxygen after anoxic injury just after it is more beneficial than without oxygen….. but it’s consern acute period 2-6-8 months after injury!!!!)

( I am not talking about CP-ok it’s chronic condition already) this we was discussed in study which compared pressures for cp.

http://brain-injury-hope.com/2019/01/study-which-compares-different-pressures-for-cp-in-hbot/

So hope my reflections helps….

So for Marc Sudden cardiac arrest happens to my baby at 4 years old. Because of not diagnosed WPW.

He has cardiac arrest for 25 minutes

I did cpr with fiend ambulance was only after 20 minutes and his heart restarted only after 25 minutes…

He was on the hyperthermic protocol ( cooled)

His child body went through so much:

5 days comas

Blindness for 3 days after coma

He couldn’t talk at all for 2 weeks after ( and restarted very slowly to talk some words)

Wasn’t sitting for 1 month and we was 1 month in Intensive care unit and 4 months in hospital

He had 5 ablations ( for his heart syndrome in 3 years)

He was obliged to learn to do everything again… ( he was just 4 years boy when he has to pass through all this: When My son woke from life support after rewarming his body He had regular heard surveys 24h/24 because of regular SVT , kidney failure, respiratory failure & and he was on a feeding tube as well…. and he was blind and can’t talk….. but constantly crying…..only thing which calm his down a bit was my voice …

He has no memory of what happened but he has PTSD

He couldn’t feed himself

couldn’t stand

couldn’t walk

couldn’t do anything

We passed by phases : wheelchair and walker and he hate both of them….

But yes I am blessed that he is alive.

MRI’s after 80 hours Hbot in Israel:

Videos

M’y son Marc avant hbot juin 2016( main gauche)

https://drive.google.com/file/d/1xI4eNE6pSWY_pgeUgwJ1jXN-W59n-CDB/view?usp=drivesdk

Après 50 hbot: (septembre 2016)

https://drive.google.com/file/d/1yqiFsZ8pGkyapTPBY3qJ4bjUA9D7pOr7/view?usp=drivesdk

Hbot

right – before hbot 1 July 2016

Left – after 15 hours hbot -5 August 2016

https://drive.google.com/file/d/1MX_yGrATtTkk6_fxWmp4q-ARvPqNQXv5/view?usp=drivesdk

PoNS: (started 29 March 2018)

Stairs before Pons (right vidéo septembre 2017)

After 6 months pons (left -September 2018)

https://drive.google.com/file/d/1HBrzFIQ1TA35lQVTAKlux2hz0sxiplZP/view?usp=drivesdk

Pons 6 mois ( left -June 2018/ right – September 2018)

https://drive.google.com/file/d/1Ut7jH8NyZFKG4Dv-4HV96qqBJoVGP1W6/view?usp=drivesdk

pons

https://drive.google.com/file/d/1lvvXrBIKLPVdt76JGljWe3Vr46sm8mWp/view?usp=drivesdk

Stoped using pons from 30 December 2018

So 2 AQM without pons:

AQM 1:(11 January 2019)

Aqm2( 28 January 2019)

Restarted using pons in Russia clinic : 11 February (2 weeks intensive in Moscow clinic with pons): http://brain-injury-hope.com/2019/02/pons-2-clinic-near-moscow/

Aqm 3 (25 February )

I will do 4th AQM in September -October 2019 so hopefully I will get scientific datas for PoNS long therm use ….

If you want more read:

http://brain-injury-hope.com/my-sudden-cardiac-arrest-survivor/

PoNS and SYMPATHOCOR and BrainPort Balance device

PoNS
What is Pons?
It’s a Device to help Cranial Nerve Non-Invasive NeuroModulation (CN-NINM) via the tongue:

The CN-NINM intervention is an experimental regimen. It has been developed over the last 12 years at Tactile Communication and Neurorehabilitation Laboratory (TCNL) at the University of Wisconsin – Madison. The PoNS™ is an experimental device that has been evolved over this same period at TCNL, PoNS receive 22 October 2018 Medical Device License Clearance from Health Canada but PoNS is not yet FDA approved.

NEWTOWN, Pa., Dec. 12, 2018 (GLOBE NEWSWIRE) — Helius Medical Technologies, Inc. (NASDAQ:HSDT) (TSX:HSM) (“Helius” or the “Company”), a neurotech company focused on neurological wellness, today announced that its wholly owned subsidiary, NeuroHabilitation Corporation, has submitted an application for a CE Mark, the receipt of which will allow the Company to market its Portable Neuromodulation Stimulator (PoNS™) in the European Union.

PoNS is a licensed class II medical device in Canada and an investigational medical device in the U.S. and the European Union.

https://heliusmedical.com/index.php/newsroom/news-release/2018/246-?utm_source=dlvr.it&utm_medium=facebook

About:
Waiting FDA clearance :
So:

The PoNS (portable neurostimulator) device was designed for rehabilitation of full spectrum other neurological symptoms in the most difficult conditions – chronic stages of TBI and Stroke. There is no feedback and no microcomputers inside. It is a device for brain stimulation. You can find more informations in the second Norman Doidge book, « The brain’s way of healing », chapter 7.

And at site Helius Medical Technologies:

http://www.heliusmedical.com/

PoNS is certified in Canada but not yet in USA – hopefully – end 2018. Before that – no one can buy or use it besides TBI patients, adults, in official clinical trials.
For example :

I think they will do study for mild TBI ( 20 participants)?

Kessler Institute for Rehabilitation?

I think they will start 30 November ?

https://clinicaltrials.gov/ct2/show/NCT03732755?term=PoNS&rank=1

The only chance to try it, and to test – is to travel to Moscow.
PoNS and CP was studed in Russia :
Here is information about CP clinic where they did clinical trail with Pons in Russia, Sankt Petersburg:
website – www.gb40.ru
Contact:
Vestnik:
Publication in Russian:
(So just 1-2 November 2018 this cp study was presented to international Congress in Moscow ) hire translation and photos in Russian 🙂
« Materials and methods. Standard scales GMFSC, FMS, Ashvotr Scale, Berg Scale were used for the evaluation, and an EEG study was also conducted. The study involved 134 patients, aged 2 to 6 years with a diagnosis of cerebral palsy. Spastic diplegia. All patients had intact intelligence, did not have convulsive seizures. The test group of children was 96 people. All children in this group received standard treatment and additionally translingual neurostimulation of the brain. The control group consisted of 40 people who received only standard therapy.

Results. The results obtained proved the safety and efficacy of this method in patients with cerebral palsy. A positive result was observed in reducing spasticity and improving balance and balance control in both groups, but was most pronounced in the group of subjects, as evidenced by statistically significant results. Also in the group of subjects, the cumulative nature of the results of therapy was noted, which indicates that the results achieved as a result of the combination therapy remain in the intervals between the courses. This study supports our hypothesis that non-invasive translingual neurostimulation is, indeed, facilitates and increases the effectiveness of standard physical therapy. This method of neurostimulation effectively activates the brain structures involved in the mechanisms of sensorimotor integration. Findings. The use of neurostimulation with the help of the PONS device, in combination with therapeutic gymnastics (targeted exercises), can improve the efficiency of the restoration of motor functions and the development of motor skills. This study opens up broad prospects for the use and development of this method in children with cerebral palsy. »

Source: http://association-dcp.ru/wp-content/uploads/2018/11/tezis_2018.pdf

Lecture Danilov nerorehabilitation:
PoNS in France:
Helius Medical Technologies, Inc. Announces MRI Confirmatory Evidence of Neuroplastic Change after Investigational PoNS™ Treatment Presented at the 2018 Joint Annual Meeting ISMRM – ESMRMB in Paris, France:

« The main conventional approach for treating traumatic brain injury related gait and balance deficits has been through physical therapy, but few approaches have focused on brain based rehabilitation efforts that create direct neuroplastic changes. There remains a need for such an approach. Therefore, the goal of this study was: 1) to apply Cranial Nerve Non-Invasive NeuroModulation (CN-NINM) via the tongue in combination with multiple symptom-specific physical therapy exercises in patients with mild to moderate TBI, and 2) to investigate and quantify gray matter volume changes prior to and after intervention as well as their correlation with behavior. »

The PoNS™ device uses electrotactile waveform in conjunction with the Cranial Nerve – Non-Invasive NeuroModulation (CN-NINM) intervention. This involves using both balance and gait training methods to stabilize symptoms, regain balance & gait, and affect the functional transfer of improved stability and mobility to activities of daily living. It is based on a body of work focused on developing the tongue-based human-machine interface and application of this technology for balance, vision, and auditory substitution and more recently as neuromodulation for brain rehabilitation after injury and disease.
“143 electrodes and fits on the anterior portion of the tongue, to be held securely in place by the lips. The PoNS device uses an unbalanced biphasic waveform designed to ensure net zero current to reduce chance of tissue irritation, and has 19 V max and 6mA operational limits. Pulses are delivered to the tongue in triplets of pulses at 5 ms intervals every 20 ms. The subject can control the pulse-width (0.4-0.6 s) by adjusting the intensity buttons on the device.”
Read This study: for stroke patient:
More to read and watch about pons:
Danilov : cranial nerve non invasive neuromodulation: https://www.ncbi.nlm.nih.gov/books/NBK299239/#!po=3.06122
Fille cp
Premieres 10 minutes
De minute 26 (autres conditions neurologiques que MS)
Russian PhD dissertation written by Vadim Vladislavovich Deineko about the study: 

Pons Canada :

info@neuromtl.com

Contact Mr Mazaltarim (Mazaltarim Marcel) at 514-481-7867

https://heuro.ca/

Heuro Canada, #201- 13737 96 Ave., Surrey, BC, V3V 0C6

(778) 819-1484

Maureen@heuro.ca

Or

https://neuromtl.com/

(Mazaltarim Marcel )

will have this soon. Stay tuned.

But Montreal indicated they will not be able treat patients with CP

Besides, even for diagnosis where they do offer treatment, minimum age is 18

Very disappointing indeed

Moscow pons: clinic is located 25 km from Moscow,

MOSCOW REGION, ISTRINSKY AREA, PAVLOVSKAYA SLOBODA, Lesnaya STR, 8

Bugorskiy Evgeny M

+7(495)2115170

medsyst@hotmail.com

Rehaline clinic,

25 km from Moscow, email above.

 +7 (495) 211-51-70
 rehaline@yandex.ru
 ПН – ПТ с 9 до 18

Just some part for you from photo translation :

« Portable neurostimulator poNS allows you to restore the brain after diseases and injuries, as well as improve skills in a healthy person. The effectiveness of the technique has been proven in more than 5,000 patients with various neurological diseases of the last 10 years. Advantages of the method: non-invasive stimulation, no surgical insertion of electrodes, effects on the brain stem along natural pathways, restoration of function regardless of the initial cause of deterioration, a small number of relative contraindications, the effect of use in a wide age range. »

For contact and coordination, please send a letter to:

medsyst@hotmail.com,

Dr. Evgeny Bugorsky

Others devices :

About SYMPATHOCOR:
It’s an other device ( studed and invented in Russia): I honestly don’t know enoth about just wanted to mention it and so you can study yourself :
« The Simpatokor 01 apparatus, which puts these principles into practice, is included in the Russian StateRegister of Medical Devices (registration certificateNo. FSR 2007/00757 of September 28, 2007). Medicalmethods used in treatment with the Simpatokor 01 support stimulation of the cervical ganglia of the sympathetic trunk with the fields described above. The efficacy ofthis approach has been confirmed by results from theclinical use of the apparatus both at the prenosologicalstage and in the treatment of patients with migraine,autonomic vascular dystonia, hypertension (includingstable arterial hypertension resistant to standard therapy),the sequelae of closed craniocerebral traumas and cerebral concussion, hyperhidrosis syndrome, orthostatichypotension syndrome, and postural tachycardia,vestibulopathy syndrome, drug resistant epilepsy, neurosis syndromes, depression anxiety spectrum disorders, and attention deficit hyperactivity disorder, and alsofor the effective elimination of invasive units, recoveryfrom the state of alcohol and drug withdrawal, and forrestoration of auditory and visual functions ».
(PDF) New Principles for the Organization of Neurorehabilitation.
Hire study pons and SYMPATHOCOR together :
More:
Study in Russian about sympatocor :
BrainPort Balance device
« BrainPort Balance device is the sensory substitution device, using electrotactile neurofeedback to stabilize the subject head and it was originally designed to help people with peripheral vestibular disorders – to fix posture, body alignment and static balance control. See the Norman Doidge book –  » Brain that change itself », chapter 1. It is still the best device for the purpose. « 
Study with BrainPort :
Improving the Motor Skill
of Children With Posterior Fossa
Syndrome: A Case Series
Manufacturer Wicab, Inc, www.wicab.com
The brainport was approved in Canada only. Not the USA 
Pons ( немного информации по русски):

Разработан нейростимулятор языка для пациентов с двигательными нарушениями: Понс

Устройство стимулирует создание новых нервных путей в головном мозге, необходимых для восстановления двигательных функций при ДЦП, травмах, рассеянном склерозе и других заболеваниях. 

Ученые из университета Висконсин-Мэдисон создали портативный нейромодуляционный стимулятор (Portable Neuromodulation Stimulator, PoNS), который позволяет воздействовать на головной мозг через язык человека. 

При работе PoNS на протяжении 20-30 минут происходит неинвазивное нейромодуляционное воздействие на черепные нервы (cranial nerve non-invasive neuromodulation, CN-NiNM). Как показали эксперименты, при этом в мозге пациента образуются новые нервные связи. Это улучшает организационные способности мозга и запускает процессы восстановления контроля над нервной системой. 

PoNS будет эффективным дополнением к основному курсу реабилитации людей, получивших черепно-мозговую травму, переживших инсульт, а также страдающих от детского церебрального паралича (ДЦП), болезни Паркинсона или множественного рассеянного склероза. ( почитайте книгу Нормана доджа).

Исследование сделанное в Питере для детей с дцп:

ВЛИЯНИЕ ТРАНСЛИНГВАЛЬНОЙ НЕЙРОСТИМУЛЯЦИИ ГОЛОВНОГО МОЗГА НА ФОРМИРОВАНИЕ МОТОРНЫХ НАВЫКОВ У ДЕТЕЙ
С ЦЕРЕБРАЛЬНЫМ ПАРАЛИЧОМ
Игнатова Т.С.1, Скоромец А.П.2, Колбин В.Е.1,Сарана А.М.1,3, Щербак С.Г.1,3, Данилов Ю.П.4
:

Материалы и методы. 
Для оценки применялись стандартные шкалы GMFSC, FMS, Шкала Ашвотра, Шкала Берга, также проводилось ЭЭГ исследование. В исследовании приняло участие 134 пациента, в возрасте от 2 до 6 лет с диагнозом ДЦП. Спастическая диплегия. Все пациенты имели сохранный интеллект, не имели судорожных приступов. Испытуемая группа детей составила 96 человек. Все дети этой группы получали стандартное лечение и дополнительно транслингвальную нейростимуляцию головного мозга. Контрольная группа составила 40 человек, которые получали только стандартную терапию.
Результаты. Полученные результаты доказали безопасность и эффективность применения данного метода у пациентов с церебральным параличом. Положительный результат отмечался в снижении спастичности и улучшения контроля равновесия и баланса в обеих группах, но максимально выражены в группе испытуемых, что подтверждается статистически значимыми результатами. Также в группе испытуемых был отмечен кумулятивный характер результатов терапии, что свидетельствует о том, что результаты, достигнутые в результате комбинированной терапии, сохраняются в перерывах между курсами. Это исследование подтверждает нашу гипотезу, что неинвазивная транслингвальная нейростимуляция, действительно, облегчает и увеличивает эффективность стандартной физической терапии. Данный метод нейростимуляции позволяет эффективно активировать структуры мозга, вовлеченные в механизмы сенсомоторной интеграции.
Выводы. Использование нейростимуляции при помощи прибора ПоНС, в сочетании с лечебной гимнастикой (целенаправленных занятий), позволяет улучшить эффективность восстановления двигательных функций и развитие моторных навыков. Настоящее исследование открывает широкие перспективы применения и развития данного метода у детей с церебральным параличом.

http://association-dcp.ru/wp-content/uploads/2018/11/tezis_2018.pdf

( осторожно в России так же продают теперь подделку!!!!)

Нейропорт – криво сделанная самоделка имитирующая ПоНС, с неправильными сигналами, опасная в применении.

Не покупайте это!

Just thank you dr Pappone

My son has had 5 heart operations ( it’s ablation of his WPW) wolff Parkinson’s wight syndrome. It’s a mainstream operation but in France 2 doctors couldn’t do this operation successfully -they attempted 3 operations here in France.

I had to find best doctor in world ( in Italy) he is professor and researcher in this domain : Rythmologie and his heart hospital has other techniques- 5 catheters ablation, named

« Pappone ablation technique » so he was finally successful!

I am very grateful to dr Pappone ( Italy for sucsessful ablation of WPW)

http://www.af-ablation.org/uploads/CV-PAPPONE-May-26-2017.pdf

There isn’t a hospital in the world that doesn’t use technology designed by Dr. Carlo Pappone:

https://uchealth.com/articles/exploring-the-next-frontier-in-cardiovascular-disease/

I have to say by French mainstream doctors wasn’t very helpful in order to find him….

And Marc had 4th ablation with dr Pappone 14 March 2018. It was good ablation but still we foud he has some ( very small rest of wpw in May so dr Pappone made 21 May again ablation and this 5th ablation finally fucsessful … we checked his ekg 14 September 2018 it’s perfect … )

He is cured for life from his heat syndrome!!!!!

We are very happy 😃

Happpy ( it was very long battle and only because of my stubborn character we could find doctor who cure him for his heart syndrome).

Don’t be affraid to search always for doctors we need best in the world.

It must be said we had not very good doctors for his previous ablations….in France…..

1st dr who ablated 2 times my son in Grenoble said :that his Kent pathaways was so baldly located that he need to cut his heart in order to ablated him complitely ( Pappone didn’t cut his heart ❤️)

Second dr in paris said that radiofricwancy was not enoth profound ( his wpw was more profound) so that’s why his 3d ablation didin’t work ( Pappone use radiofricwancy also for his ablation ❤️ so it becomes less profound in 5 months or just doctors before wasn’t so good?)

Pappone said I will ablate Him successfully .

He did ! Ont one thing still make me angry against our French medical system : as dr Pappone said that his anoxic injury could be avoided …. absolutely…..if we had different system for cardiac tests for all children’s….. it’s making me said.

Just read this study for asymptomatic WPW:

https://www.nejm.org/doi/full/10.1056/NEJMoa035345

« Ablation groupe :

Ablation Group

The 37 patients who underwent ablation were followed for a median of 27 months (range, 9 to 60). Two patients had an arrhythmic event, one at 9 months and the other at 26 months. Repeated electrophysiological testing revealed an atrioventricular-node reentrant tachycardia in both patients, who underwent successful slow-pathway ablation. »

« Control group ( without ablation)

Control Group

The 35 controls were followed for a median of 21 months (range, 8 to 60). All patients continued to exhibit ventricular preexcitation during follow-up. After a median follow-up of 15 months (range, 8 to 53), 21 patients (60 percent) had had arrhythmic events. The arrhythmic event was supraventricular tachycardia in 15 patients (leading to severe presyncope in 1 patient), atrial fibrillation in 5 patients (1 with syncope and 3 with presyncope), and ventricular fibrillation as the presenting symptom in 1 patient (a 22-year-old man). This man became unconscious during jogging. In the emergency department, he was found to be in cardiac arrest due to ventricular fibrillation that was successfully cardioverted only after six shocks of up to 300 J. Base-line electrophysiological testing had induced an atrioventricular reciprocating tachycardia triggering atrial fibrillation; the shortest preexcited RR interval had been 200 msec. Multiple septal accessory pathways were found on both the right and the left sides. »

60% had arythmia events ! From control group

60%!!!!!

So why asymptomatic Wpw considered not dangerous ?

So why every child can’t have EKG test at birth ? In order to find out if child has asymptomatic Wpw ?

You know my son never used normal ways in his heart before operations ( he was using Only Kent ways) and it was visible on his first ekg…. so why his first ekg we had only AFTER his cardiac arrest ? Why not just routine check for just born child?

I can’t change the past all what I can: to tell others parents.

It’s not true that drugs against your tachycardia for Wpw without side effects :

They are! They makes your tired they kill your intestinal flora….

They are toxic….

So think 🤔

https://m.facebook.com/groups/333972306943984

http://brain-injury-hope.com/our-medical-experience/

https://wpwawarenessfoundation.com/

BrainMoove : Vibramoov and Gyrostim and all others neurological rehabilitation’s

We did Gyrostim and neurofeedback first time for Marc end of April 2017 in neuro plasticity brain center in France: ( one week) it’s like center in Orlando USA parents know what I talking about but in france and chiper (all therapies in USA I don’t know why but much more expensive in USA….)

BrainMoove:

So summer 2018 we tried new innovative reheducation system ( this time French) Vibramoov in center BrainMoove :

Film summer 2018 BrainMoove réhabilitations and Dinar and st Malo (great vacations at the same time

* read my previous article about summer 2017 in BrainMoove hire : http://brain-injury-hope.com/2018/08/gyrostim/

Contact of center: https://www.brainmoove.com/en/

In short : Vibramoov ™ uses Functional Proprioceptive Stimulations (SPF) to activate the nervous system with sensory information identical to that of natural walking.

These stimulations keep the sensory-motor interactions of anyone with locomotor disorders active and stimulate their neuroplasticity.

Experiments with vibramoov tests was developed by

Pr J-P Roll and now

by Prof. Frederic Albert, who was a student of Pr Roll

( theirs scientific profiles):

https://www.researchgate.net/profile/Jean-Pierre_Roll

https://www.researchgate.net/profile/Frederic_Albert

And naw studes published:

https://www.researchgate.net/publication/302825898_Apparatus_for_generating_sensations_of_movement_and_for_physical_rehabilitation

https://www.researchgate.net/publication/224957071_Illusory_movements_prevent_cortical_disruption_caused_by_immobilization

This time link in french:

http://www.technoconcept.fr/shop/lang-fr/48-vibramoov.html

It will be presented on European Neuro convention in April 2019 in London :

http://www.neuroconvention.com/news/blog.asp?blog_id=4526

« Neurorehabilitation through Functional Proprioceptive Stimulations:

The Vibramoov system applies Functional Proprioceptive Stimulation to preserve the sensory and motor functions of the patient even when movement is impossible.  A number of electromechanical actuators are placed as shown in the adjacent images.  Programmed sequences stimulate the nervous system with sensory information which is identical to that which occurs in normal movement.  This afferent information can induce motor responses corresponding to the sensation that the patient experiences.  The patient has the sensation and experience of movement even at the earliest stage of recovery.  It is safe and effective when applied early in rehabilitation.

Research findings suggest that the sensory feedback induced by Vibramoov and the associated perception of movement may counteract disuse-induced cortical plastic changes. This happens due to the recruitment of a large part of the cortical network which is normally used during the actual performance of a movement. This research supports the possibility of guiding cortical plasticity with proprioceptive augmented feedback.

Many acquired or congenital neurological impairments (such as stroke, incomplete spinal cord injury, traumatic brain injury, cerebral palsy, MS and Parkinson’s disease) can dramatically affect our ability to move at will and they disturb our sense of « connection » to and awareness of our limbs.  Awareness of limb position (proprioception) is impaired.

One of the main challenges of neurorehabilitation is to preserve or re-establish the coordination between motricity (active movement) and the related neurosensory information.

Vibramoov offers a unique neurorehabilitation therapy by maintaining the functional interaction between movement and proprioception throughout the recovery process.

Vibramoov enhances both the rate and potential for recovery as the system may be used safely at the earliest stages of recovery; even earlier than typical robotic interventions.

Early intervention is very important to maximise the rate and extent of recovery as prolonged immobility brings about secondary effects that can be very hard to overcome when therapy is delayed. »

https://healthdocbox.com/69413571-Physical_Therapy/Vibramoov-neurorehabilitation-of-the-locomotor-system-through-functional-proprioceptive-stimulation.html

French :

En août 2018 en plus des Gyrostim et autres programmes neroplasticity d’année dernière on a essayé nouvel système reheducation française Vibromoov!

Ce qui était intéressant, c’est que Marc faisant vibramoov aujourd’hui (sans bouger les jambes) avait des sentiments à marcher (je lui ai demandé ce qu’il ressentait et il a dit: je marche avec des petits pas) ….

Vibromoov est un nouveau système de rééducation innovant.

Centre que nous faisons Gyrostim est l’un des 4 centres en France à faire de la rééducation avec cet système.

En bref: Vibramoov ™ utilise des stimulations proprioceptives fonctionnelles (FPS) pour activer le système nerveux avec des informations sensorielles identiques à celles de la marche naturelle.

Ces stimulations maintiennent actives les interactions sensori-motrices de toute personne présentant des troubles locomoteurs et stimulent leur neuroplasticité.

http://www.technoconcept.fr/shop/lang-fr/48-vibramoov.html

les documents du Vibramoove:

Les expérimentations ayant procédés aux tests du vibramoov sont celles développées par le Pr J-P Roll et maintenant par le Pr Frederic Albert, qui a été étudiant du Pr Roll

https://www.researchgate.net/profile/Jean-Pierre_Roll

https://www.researchgate.net/profile/Frederic_Albert

« Technoconcept, lauréat du trophée Innovation et médecine.

Technoconcept : la révolution médicale mondiale

L’histoire de Technoconcept, c’est l’histoire d’une révolution médicale, baptisée « Vibramoov ». Après 30 ans de recherches scientifiques et cliniques, la société installée à Mane est parvenue à mettre au point une technologie révolutionnaire dans le monde de la rééducation. Le « Vibramoov » permet en effet, à partir de séquences de vibrations, de stimuler le système nerveux. Il s’agit, ni plus ni moins, d’envoyer au cerveau des informations liées au mouvement alors que le corps n’est pas en capacité de bouger !

« Sans stimulation, le cerveau oublie très vite et se met à dérailler », expliquent Frédéric Albert et Nicolas Plumier, respectivement manager R&D et manager marketing. « Plus le corps reste immobile longtemps, plus la rééducation est longue et difficile. Alors imaginez une personne victime d’un AVC, avant qu’elle puisse se remettre debout, des mois se seront écoulés Avec le Vibramoov, son cerveau n’aura jamais cessé de monter des escaliers ou de courir. On maintient les activités cérébrales et on peut agir très tôt dans le parcours de soins ».

Officiellement présenté en décembre dernier, le Vibramoov de Technoconcept débute sa phase de commercialisation. Et, comme l’on pouvait s’y attendre, l’accueil est à l’image du produit : exceptionnel. Des premières commandes ont déjà été enregistrées en France et les premiers centres seront équipés dans le courant du mois de juillet ; mais l’intérêt médical dépasse largement nos frontières… De l’Italie à l’Allemagne en passant par la Pologne, la République Tchèque ou le Royaume Uni, tous les plus grands spécialistes sont unanimes, certains professeurs n’hésitant pas à parler du « meilleur dispositif qu’ils aient vu dans toute leur carrière » !

Il faut dire que Technoconcept a également mis à profit les six derniers mois pour améliorer et optimiser les capacités du Vibramoov. Initialement programmé pour la rééducation des membres inférieurs, il peut désormais appliquer le même procédé pour les membres supérieurs afin de proposer une méthode globale de traitement. Sachant que personne d’autre n’est capable de faire ça … dans le monde entier !

La société Technoconcept a été créée en septembre 1998 ; installée dans la zone d’activité Pitaugier, à Mane, elle emploie 16 personnes et est cogérée par Daniel Boschat, Frédéric Albert et Nicolas Plumier. »

Etudes publiées

https://www.researchgate.net/publication/302825898_Apparatus_for_generating_sensations_of_movement_and_for_physical_rehabilitation

https://www.researchgate.net/publication/224957071_Illusory_movements_prevent_cortical_disruption_caused_by_immobilization

I found this center like in Orlando USA ( but cheaper and in France)😉I honestly think they may be have more therapies also for neurological plasticity to chèque hire:

http://www.brainmoove.com/en/infrastructures-high-technology-equipment/

1000 € therapy 5 days

So second time we did 2 weeks from August 20 to September 2 in 2017 …

Marc results:

I think Marc has become more « stable » walking and more coordinated.

But it’s not miraculous .. Just good method reheducation for me in fact I prefer it than any intensive therapy program.

I already did reservation for summer 2018 so yes it’s one of my favorite programs after Hbot 😉

2 weeks: 1900€ therapies ( price will depands of programme and age of your child)

You will need housing (2 weeks in August for example we have to pay 1450 €)

Carrick uses something called the  » GyroStim, » essentially a mechanical chair that rotates slowly around in all directions:

https://www.google.fr/amp/s/abcnews.go.com/amp/Health/chiropractic-neurology-breakthrough-placebo/story%3fid=17027630

“The Evolution of GyroStim

The Inspiration

In 1997 GyroStim inventor Kevin Maher and his wife gave birth to a little girl. Unfortunately, she was born three months premature, resulting in a diagnosis of severe spastic quadriplegia cerebral palsy. When she reached age 4, her parents were told that her very poor balance might benefit from including vestibular stimulation in her daily home therapy program. She was prescribed a regimen of hundreds of chair spins, log rolls, and somersaults every day. This additional therapy was back-breaking work, balance, and there was no comfortable, practical, or easy method to provide it. There had to be a better way.

Inspired by this problem, Kevin applied his 25 years of experience with robotics systems towards engineering a solution. He designed and built an easier, safer, and more efficient way to provide his daughter with vestibular stimulation, resulting in the first prototype of the GyroStim. Maher’s daughter, Mackenzie, made unexpected and rapid gains, not only in balance, but also in other gross and fine motor abilities, trunk control, energy level, speech, and overall abilities. It soon became apparent that the vestibular stimulation from his unique combination of pitch and yaw rotations had triggered a cascade of significant additional gains well beyond the goal of simply improving her balance.

The Launch

Kevin continued developing his unique rotating chair, and soon his work captured the attention and interest of therapists, doctors, and researchers. Their acknowledgment of the immense need for this innovative device and his desire to make it available to others who could benefit from it reinforced his decision for moving forward with development of the GyroStim and the launch of a new company, UltraThera Technologies.

Soon after the company was formed, the first GyroStim system sale was to the United States Air Force Academy. The second sale went to the Mayo Clinic Aerospace Medical Vestibular Laboratory, further validating the broader interest in his new technology, with additional sales soon to follow.

The Breakthrough

In January 2011, one of the NHL’s top athletes, Sidney Crosby, suffered back-to-back concussions that forced him out of the game for most of that year. As recovery continued to elude Crosby, many feared that the head injury would force him out of the game permanently just as his career was at its peak.

In August 2011, still suffering from debilitating post-concussion symptoms (PCS), it was recommended to Crosby that he try the GyroStim. Soon after, he was back on the ice and was eventually cleared for full contact practice. In November 2011, after nearly 11 months of being sidelined due to the concussions, Sidney Crosby returned to the ice in one of the most spectacular comeback games in history. In 2012, he went on to sign a 12-year $104.4M contract extension with the Pittsburg Penguins, and GyroStim went on to become widely recognized for being the breakthrough technology that helped Crosby overcome his concussions.

The Paradigm Shift: From Passive to Interactive

Through 2013, GyroStim was used to provide passive vestibular stimulation— meaning that the subject seated in the rotating chair received vestibular stimulation without challenges or interactions during rotation. While this simple application of GyroStim was beneficial in many cases, Maher believed passive stimulation was only the beginning of what could be accomplished using GyroStim.

Maher hypothesized that adding an interactive training element during the vestibular stimulation would engage, challenge, and improve the function of physical and cognitive systems (sensorimotor systems) activated during the exercise. Theoretically, this would improve not only balance but also improve the performance of the activated sensorimotor systems, resulting in improved cognition and overall human performance.

To explore this hypothesis, he developed an integrated laser targeting system to provide subjects with interactive challenge during rotation. The subject would use a laser pointer to hit as many targets as possible—while rotating in the GyroStim.  This interactive “perceive, process, and react » approach should present significantly greater challenge to the subject’s physical and cognitive abilities than simply receiving passive vestibular stimulation in the GyroStim.

Maher also developed a library of motion profiles, with each profile providing a specific level of intensity, ranging from Level 1 (lowest intensity) to Level 30 (highest intensity). This would allow the clinician to quickly select a level and present the subject with vestibular stimulation and sensorimotor exercises advancing at an appropriate pace for each individual as performance improved. In other words, the GyroStim system and method customize an optimized rate of advancement for each person based entirely on their own performance progress.

In 2014, Maher put his interactive approach to the test during training camps with NFL, NHL, professional boxing/MMA, and Olympic athletes. The positive outcomes achieved supported his hypothesis with nearly all athletes reporting significant improvements in the areas of balance, coordination, spatial and situational awareness, reaction time, hand-eye coordination, object tracking, reduced brain fog, improved sleep, and also better mood, faster reading speed and improved comprehension were reported.

From there, Maher surmised that this same interactive approach for improving athletic performance would also be beneficial when used at lower intensities to help individuals during the rehabilitation and recovery process. His theory was supported by the reports of clinicians and thousands of people from all walks of life who have benefitted from using GyroStim at lower levels of intensity.

This method of applying vestibular stimulation and sensorimotor exercises simultaneously while incrementally advancing the intensity of training has transformed and greatly expanded applications for GyroStim on both ends of the spectrum from injury and illness rehabilitation to athletic performance enhancement.” ( Source: http://www.gyrostim.com/evolution.html )

Resources:

https://goodmenproject.com/featured-content/mfnc-is-first-clinic-in-minnesota-to-add-gyrostim-lbkr/

http://www.delawareonline.com/story/news/health/2016/02/22/gyrostim-tech-stimulates-balance-controversy/80017032/

http://www.denverpost.com/2013/06/01/gyrostim-spinning-chair-may-help-concussion-recovery-no-fda-approval-yet/

http://blogs.denverpost.com/avs/2013/06/05/response-to-the-gyrostim-story-on-treatment-of-brain-injury-and-one-of-my-own/13764/

En français :

https://www.google.fr/amp/www.ladepeche.fr/article-amp/2015/01/16/2030202-neurologie-stimuler-le-cerveau-et-le-corps.html

Testimonials:

https://www.google.fr/amp/s/informationtips.wordpress.com/2013/10/14/gyrostim-spinning-chair-brain-injuries-autism-cerebral-palsy-aspergers-syndrome-motion-sickness-spatial-disorientation-chiropractic-neurology-functional-neurologists/amp/

Clinical trails Gyrostim:

http://www.gyrostim.com/library.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4316606/

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 2 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 2 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