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Just for anybody’s who wants to comment on my blog : I am not confirming ANY comments on it I had too much spam messages and I don’t have time to see all comments which is good or spam … so I delate every day ALL COMMENTS send me

Sorry for your inconvenience but it’s like this

If you want to contact me ( not spam) send me mail:

svetpanuta@gmail.com

And I will see if it’s really professional mail or just a spam ( haw to create my blog and not about nerologie – all spam I put in garbage !!!)

My blog is free I am not gaining money from it I don’t have time for useless comments.

Thanks for understanding

Pons clinics :

Answering on many requests:

Working clinics using PoNS technology in Russia and Canada:

RUSSIA

Moscow

“Rehaline” – Rehabilitation Center- Director Dr. Evgeny Bugorsky,

rehaline.ru

+1 495 763 0734,

medsyst@hotmail.com

Topics: Multiple sclerosis, Traumatic Brain Injury, Stroke, Parkinson’s disease and etc

Sankt Petersburg,

Odoevskogo str., 28

Dr. Lavrentiy Tsoj

phone: +7 (812) 603-70-10

admin@newday-clinic.ru

Topics: Multiple sclerosis, Traumatic Brain Injury, Stroke, Parkinson’s disease and etc.

Stavropol

Shapkovskaya St., 100

Drs. Pavel & YuliaTimchenko

email: tp@neuro-clinic.life

WhatsUp: +7 961-452-1800

https://neuro-clinic.life/

Topics: Pediatric neurology, Autism, Crebral Palsy, ADD/ADHD

CANADA

Montreal, QC

Mazaltarim Marcel, MSc, Director

1140 Beaumont,

T.M.R., Montreal, QC H3P 3E5

514-481-7867

info@neuromtl.com

neuromtl.com

Topics: Multiple sclerosis, Traumatic Brain Injury, Stroke, Parkinson’s disease

Surrey, BC

Surrey Neuroplasticity Clinic

Suite 204, 13737 96 Ave.

Surrey, BC, V3V 0C6

P: 1-604-424-8280

F: 1-888-597-8564

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

Pons and Cp

Pons:

“It is traditionally considered that a child with cerebral palsy reaches half of its potential to develop motor skills by the age of 5 years and the maximum possible development by 7 years. The potential achieved remains at the same level or may even worsen with age. In our experiments, all children were over the age of 7 years. These results can significantly expand both the scope of this technology in the rehabilitation of children with cerebral palsy and improve the prediction of the effectiveness of the therapy used for older children.

Brain TLNS enhances the effect of physical rehabilitation, activating vast areas of the brain, increases the efficiency of existing neural networks, increases the likelihood of new synaptic contacts (synaptogenesis), enhances the brain’s innate ability to improve motor function. The fMRI data alone confirms that the human brain is plastic at any age and is capable of an amazing reorganization, the mechanisms of which we are just beginning to explore. The dynamics of changes in DMN and functional connections between the first and second timepoints turned out to be more vivid than between the first and third timepoints. That probably indicates a delayed rehabilitation effect.”

https://www.researchgate.net/profile/Yuri_Danilov/publication/334400894_Translingual_Neurostimulation_in_Late_Residual_Stage_Cerebral_Palsy_Children_Treatment_Affects_Functional_Brain_Networks/links/5d278d21299bf1547cad2e17/Translingual-Neurostimulation-in-Late-Residual-Stage-Cerebral-Palsy-Children-Treatment-Affects-Functional-Brain-Networks.pdf

Latest publication 2019 with Pons mesures brain activity in high-density EEG

“Microstate effects suggest that even during rest, the PoNS® may elicit functional changes in the brain that are associated with evidence of increased neuroplasticity-related improvements.

Neuromodulation, such as through the PoNS®, has been linked to improved functional outcome in brain injury and disease, but the underlying neural mechanisms remain elusive. We report the initial findings of EEG changes in resting brain activity after a single 20-min session of PoNS®. While both HF and LF PoNS® dosage levels produced significant changes in alpha and theta wave activity, HF stimulation showed differential dosage effects. HF PoNS® also significantly increased attentional microstates suggesting a possible functional mechanism associated with evidence of neuroplasticity improvements. Overall, these findings support continued characterization of the underlying neural mechanisms related to the use of neuromodulation to drive recovery of function through neuroplasticity.”

Fig. 2

a Comparison of alpha EEG power before and after PoNS®, displaying statistically significant main effect of time; (b) Order by time interaction effect on alpha and theta power and Tukey pairwise post-hoc test statistical tests demonstrating a statistically significant increase alpha and theta power when exposed to HF stimulation in the first session; (c) Time-frequency spectral power for each exposure group (HF First and LF First) during each testing session:

Source:

https://jneuroengrehab.biomedcentral.com/articles/10.1186/s12984-019-0538-4

PoNS and CP was studed in Russia :

PoNS and CP was studed in Russia :

https://heliusmedical.com/index.php/newsroom/news-release/2016/34-helius-medical-technologies-announces-publication-of-positive-results-of-russian-pediatric-cerebral-palsy-pilot-study

the latest 2019 study of PoNS:

https://jneuroengrehab.biomedcentral.com/articles/10.1186/s12984-019-0538-4

Officially was published only this yet:

(So just 1-2 November 2018 this cp study was presented to international Congress in Moscow )

If you want to see more -what I posted before read my this article: http://brain-injury-hope.com/category/pons-and-device-to-help-cranial-nerve-non-invasive-neuromodulation-cn-ninm/

But not officially we can find more ( if we can read in Russian 😉 and here link:

http://www.vniifk.ru/content/files/dissovet/deineko/dissertaciya_deineko_vv.pdf

Ok this is not yet “official” publication from St Petersbourg where they did CP study for PoNS was done. According to the thesis the situation was not very good ( because author used datas of this study without permission).

Daineko Vadim, is not a doctor, during the practice an instructor without permission of the copyright holders he used the data for his scientific thesis.

Brainport is mentioned in his thesis because from the very beginning they started working with him, and then switched to PoNS. This is a typical mistake in Russia to confuse these devices; but on photos you can see they used PoNS for study. ( old version of PoNS)

But of cause I can’t guarantee that in this thesis will be not others “mistakes” as at any case it’s not official publication yet of this Russian Cp study with PoNS.

So this is not yet officially published data for this study.

Comparison of TR ( traditional rehabilitations) and VTR ( high-tech rehabilitation) groups has shown that VTR has a significantly more significant therapeutic effect in comparison with TR and contributes to a significant development of motor functions.

So it’s comparison of 2 groups:

1) The traditional program of rehabilitation TR group: of children with cerebral palsy (exercise therapy, physiotherapy, hydrokinesiotherapy, therapeutic massage)= all “standard therapies” but intensive for CP

2) VTR group : and the VTR program with the use of high-tech rehabilitation tools (so they also had exercise therapy, physiotherapy, hydrokinesiotherapy, therapeutic massage)= all “standard therapies” but intensive for CP and plus High -technology: Lokomat, Armeo, PoNS)

The obtained therapeutic effect is connected with the application of a complex of high-tech means of neurorehabilitation, providing stimulation of motor centers of the brain and contributing to the more intensive development of compensatory mechanisms.

The final step was a comparison of the therapeutic effects according to the classification scale of movement.

In both groups, the baseline values before treatment improved significantly after the rehabilitation course, but a more pronounced therapeutic effect occurred in the high-tech treatment group.

On the basis of their own observations, children undergoing high-tech treatment were more confident in traveling long distances, climbing independently after falls, overcoming obstacles.

This rehabilitative effect is obviously related to more deep impact of modern high-tech devices on the motor centers of the brain, skeletal muscles and proprioreceptors.

The results of comparing the therapeutic effects of TP and VTR showed that both treatments in children with cerebral palsy have a positive effect on motor function, muscle tone, and balance.

However, VTR has a more pronounced therapeutic effect, especially on the maintenance of vertical position, independent walking and fine motor skills of hands.

The traditional program of rehabilitation TR group: of children with cerebral palsy (exercise therapy, physiotherapy, hydrokinesiotherapy, therapeutic massage)

and the VTR program with the use of high-tech rehabilitation tools (same as TR + Lokomat, Armeo, PoNS)

But in VTR group they had significantly bigger effects in improving balance and walking, reducing spasticity of the upper and lower extremities.

The achieved rehabilitation effects are preserved for six months with continued rehabilitation on an outpatient basis in the variants of individual exercises, hippotherapy and Nordic walking.

The rehabilitation program with the use of high-tech tools (VTR) in comparison with the traditional program of rehabilitation of children with cerebral palsy, has significant advantages in rehabilitation effects that increase the child’s physical activity, as measured by the Berg scale (balance), Ashworth scales for upper and lower extremities (spasticity) , GMFCS scale (motor functions) and classification scale of movement.

http://www.vniifk.ru/content/files/dissovet/deineko/dissertaciya_deineko_vv.pdf

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 2 ( clinic near Moscow)

1)clinic clinic is located 25 km from Moscow,

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

Facebook in Russian:

https://m.facebook.com/CenterRehaline/

For contact and coordination, please send a letter to:

medsyst@hotmail.com,

Dr. Evgeny Bugorsky

https://youtu.be/OMnitcytVhE

2) they can take children’s with CP only from 6 years old ( child need to cooperate during pt therapies with using Pons) and it’s intense therapy program.

3) they can give Pons only for 3 months ( rent) it’s standardization of protocol as I understood …14 weeks….

So our experience in Moscow clinic is really good ( very professional aproach on my point of vue) and really good intensive therapies. And I was in a lot of intensive clinics already…. they really work well. If your child is not able to do 4 hours training per day please tell them that it’s too intense for him ( you think)…. I am sorry but with cp yes we have to work and train a lot children’s…..

My son definitely progressed with PoNS Device but it’s difficult to notice in 2 weeks

His balance improved

Coordination improved

His posture improved

His hip position improved

( so I can say that he definitely progressed because we started to use Pons in March 2018) and yes travel to Moscow was our second intensive for Pons treatment….

What I have to say : if you speaks only English it could be a bit difficult ( 99% of Russian population don’t speaks English ok?) and it’s normal 99% Usa populations speaks also only one native language 😉 so if Russian come to USA they have or to face this difficulty or to take personal guide….

So what I advice you – if you going to travel to clinic near Moscow -I advice – to take translater services ( ask this possibility in clinic may be) if you want to have somebody with you during time you are not in clinic ( lunches / evenings and Sunday so than you will have somebody who can help you to call taxi / do shopping etc…)

We stayed in Istra ( we took chamber in part of building where they have lift it’s important for parents with child on wheelchair… but it’s not standard rooms in this part of building) in standard rooms you will have stairs and you can’t take them with not walking child.

We had also possibility to go to swimming pool before 18h every evening in near building ( not same building about 100 meters walk) they have also jacuzzi and sauna their. ( you need to get medical certificat in order to be acsepted to swimming pool it’s easy check in nearest building where they have medical staff ( but for sure you need to understand haw to do this 10 minutes checking of your skin -so you need speak Russian or need somebody who will translate)…..

You can stay in the clinic appartement ( it’s the same building) it’s fully equipped appartement (yes they have handicap entrance) plese see on photos the degrees of angle to puch wheelchair and if it’s ok for you…

If you want photos of 3 chambers of appointment ( ask me in private).

We tried 3 different shopping areas (near by clinic) honestly we was happy to eat lunch in this area :

Pavlovo Podvorie ( in area they have a lot of restaurants -we loved « Chaihana ») as well as a lot of shops/ pharmacy / foods store etc…)

chaihana resto:

and we visited very interesting Biggest private museum in Europe for old mechanics ( cars/tanks/ motorcycles /planes etc…..) very very impressive 😉

It’s only 20 minutes taxi drive from clinic worth to visit ( they have possibility for wheelchairs entrance and lift in museum)

So if you have questions ( contact me)….I will answer when I have time 😉

see also this Great video:

Really good explanation about Pons by Yuri Danilov

And a lot of examples at the end of video so if you can’t read scientific studies lisen videos :

https://www.pbs.org/video/university-place-modern-neuroehabilitation-ep-440-1/

https://youtu.be/u68ZyMXI4n8

But for somebody who love read studies: here study which explains really good haw to use PonNS device:

https://www.ncbi.nlm.nih.gov/books/NBK299239/

« PoNS is an apparatus for translingual electrical stimulation of the brain that enhances the brain’s natural ability to repair damaged areas and form new functional pathways.

A new innovative method of using peripheral neurostimulation for neurorehabilitation was presented at the World Congress on Psychophysiology in St. Petersburg in 2010. This method was developed at the University of Wisconsin, USA, in a laboratory headed by renowned scientist Paul Bach-Rith, one of the founders of the modern concept of neuroplasticity. In the laboratory of tactile communication and neurorehabilitation, a device was developed for electro-tactile stimulation of the tongue, which made it possible to significantly increase the susceptibility of the human brain to the restoration of lost functions. At the moment, the device has the name portable neurostimulator (PoNS). This is a new generation device for peripheral neurostimulation, based on electro-tactile stimulation of human skin in the most densely innervated tactile region – the language. The language is technically preferable for electrical stimulation, since the oral cavity provides more favorable conditions, such as a constant level of acidity, a constant temperature, conductivity and humidity, as well as lower thresholds of excitability compared to other skin areas » – (Kaczmarek, KA) spatiotemporal pattern presentation // Scientia Iranica D. 2011. Vol. 18. P. 1476-1485; Tyler ME, Kaczmarek KA, Rust KL, Subbotin A. M., Skinn KL, Danilov YP Non-invasive neuromodulation to improve gait in chronic multiple sclerosis: a randomized double blind controlled pilot trial // Journal of NeuroEngineering and Rehabilitation. 2014. P. 11-79).

« The method of neurorehabilitation is based on the activation, first of all, of the structures of the brain stem and cerebellum, by means of electrical stimulation of the anterior surface of the tongue. According to literary data, about 20–25 thousand neural fibers deliver nerve impulses from the anterior surface of the tongue (stimulation area about 7.5 cm) to the brain stem.

The principle of the device is based on brain neuroplasticity. The front surface of the tongue is unique. It contains the epithelium, relatively thin in comparison with the skin, 300–400 microns thick, saturated with various types of receptors, as well as a zone with free nerve endings located in the depths. This zone with the maximum density of mechanoreceptors has a minimum two-point discrimination threshold: 0.5 – 1 mm for mechanical stimulation and 0.25 – 0.5 mm for electrical stimulation. The two main nerves from the tip of the tongue provide information flows directly into the brain stem, activating the complex of nuclei of the trigeminal nerve, which travel from the spinal cord to the middle. Nearby is the solitary nucleus, here the reticular formation of the brain stem and 3 pairs of legs of the cerebellum.

As is known, this zone of the brain stem has a large accumulation of nuclei, half of which are responsible for the autonomous regulation of blood circulation and respiration, and the second half – for sensorimotor regulation. Intensive rhythmic stimulation of neurons leads to a corresponding activation of synaptic contacts and axons, including the entire complex of pre- and postsynaptic neurochemical mechanisms. Stimulation from the Pons device enhances the brain’s innate ability to enhance its function.

The purpose of stimulation: to restore motor function or to teach new motor skills.

Combining brain activation with targeted physical training aimed at restoring a lost function or teaching new skills, like cerebral palsy in children who cannot sit, stand, walk, may activate the nerve pathways directly associated with locomotor function

(Kaczmarek, KA The tongue display unit for electrotactile spatiotemporal pattern presentation // Scientia Iranica D. 2011. Vol. 18. P. 1476-1485).

https://www.sciencedirect.com/science/article/pii/S1026309811001702

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