Our medical experience
after my son anoxic injury:
( so you can understand why) and videos posted in order that you to see he is doing good comparing predictions of doctors )…
I am Svetlana : mother of Marc 11 years now ….. (acsident anoxic cardiac arrest at the age of 4 years and 2 months) 9 January 2016
I had not much experience in 2016 with handicap in France before but I studied a lot before any medical decision for alternatives treatments I did for my son( not all people can do it for them it’s even more complicated) I can read and speak in 3 languages ( English /French and Russian).
Before you judge me please : read My experience and then we will speak about place of mother or doctor in treatments of OUR son and all that he has caused us his WPW.
For all our experience:
Our son Marc had cardiac arrest January 9, 2016 (WPW asymptomatic cause) … Before his accident, he developed normally without any problems. A simple cardiogram could show his WPW But he made 2% of the population « asymptomatic », but one could not even suspect that he had heart problems … why? But why ? We do not do cardiograms for all children at birth in France? It costs almost nothing for insurance, it’s simple and it can save lives!
After 4 months hospitalization and standard rehheducations in hospital … (and liberal orthoptist and Psycomotricen secretly … well yes it is supposed that he had enough in hospital care BUT : it is a shame he does not have any consultation of Ophtalmologiste in hospital in Grenoble After his acsident and even knowing that after waking up from his coma he didn’t saw during 3 days …. they didn’t do any vision tests!!!!! he didn’t speak during 2 weeks …. (no speech therapist available in French hospital during 1month ….either….) (*you have film in your files haw he was before we started Hbot)
I did a mistake as well: I agreed to botox ( I didn’t know much back in February 2016 so I agreed to Dr experience…. what a fool I was….) ….so 1 time Botox experience horrible … painful without visible results on
2 months! After …. all that ….. you must understand why I took my son’s reheducations in « my hands » … it’s not me who doing reheducations But it’s me who Decide which doctor we will consult and what therapy we will apply ….. (I also have some bad surprises of cause… it’s took all my nights to read : studies and find groups on interesting me questions : Hbot and stem cells/ Sdr/ pons / Gyrostim etc….find all other alternatives Médecine)….
Not satisfied not even a word strong enough to describe feeling that i have for our experience with French hospital care….
April 2016 we were sent back home from hospital : in wheelchair badly adapted to Marc and parents (yes yes we bend to 2 to push My husband is 1m93 and I am 1 m70 cuffs been too low Even for me) …..
Budget for hospital : 0 € (except presents to doctors)😉
Liberal budget (in addition to Hospital : first 2 months 120 € per month …. not much 4 visits ….we set up regularly from mid February) …. so March / April 500 -600 € For liberals per month
So what we done after hospital:
1) For reheducation we started with intensive rehabilitation private center in Spain….2 weeks at the end of May 2016 in Essantis – nothing good for him (framework i did not like and especially rejection of my part to make the screaming children work …) so big NO 👎 for me….
We tried Thomatis therapy their and even I did 1 month more after 2 weeks in Spain….but honestly I wasn’t convinced by this therapy it was difficult very time and money consuming and afterwards I hate Mozart’s music 😂
2) At the end of June I was overwhelmed I recognize …. reheducations day in hospital was a torture for Marc ….. he was crying with reheducation dr in hospital … (but not with liberale reheducation Dr that he saw in parallel …she was no problem …. strange no?) So at the end of June I went to Israel it was very sudden decision …. very quick…I found Hyperbaric only some weeks before my departure to Israel and by chance my sister live in Israel….and her husband who is Medecin in Israel already discussed the case of Marc with Dr. Efrati in Israel …. (So he agreed to help him …..dr Efrati is one of the most recognized Hyperbaric Medicine in the world … with scientific studies published and recognized ….) when I talked about him and hyperbaric our Dr in hospital in Grenoble …. she told me: « you are going in addition to the neurological problems of your son damage your son’s ears and his eyes » …. so with « advice” like this I left …. French medical care to Israel ….. honestly I thank god for my stubbornness and for this decision !!!!!!!
So for Marc we did hyperbaric care, HBOT in Israel: we went to Israel June 26 …. started Hbot July 17, 2016: ( before we did all tests/ x -rays of lungs and yoyos operation to protect his ears) http://www.assafh.org/sites/en/clinic/Hifrbaric/Pages/default.aspx
(60h) July-October 2016 ( hbot 2016 3 months Hbot rehab 30 minutes per week only….)
And February 12-March 10, 2017.
Budget: 60h: 7140 € / therapy + tests before and operation ears (tubes) 3000 €
= 10140 €
Plus you have to get housing / car for 3 months ….
Very important results (possible because of small delays that 6 months after an accident that we made hyperbaric chamber …)
Marc was recognized as 80% disabled by in June 2016 after his cardiac arrest accident on January 9th of year 2016 because of the WPW (Wolf Parkinson Wight Syndrome…..
Now and already after hyperbaric chamber it does not have this percentage for sure may be 20%????😉 thanks My god …..
Marc became much more resistant after HBOT in Israel and less tired he could make 600-700 meters of continuous walking even after 6 months intensive rehab in hospital in France, he could a bit « walk » (if we can apply it to walk ….for 50 meters, held by the hand, and after a daily rehabilitation of 4-5 hours / day for 4 months.)
It has practically stopped using the stroller (special for disabled) …. After Hbot …. It may be necessary for long trips: at the airport to travel or for very long walks … because he can not walk for miles …. he can run (not stably, of course, but run), he can climb a staircase to ride a toboggan (with handles) and he rides a bike with 3 wheels.
And his mood has changed too:
He no longer has a problem with « nervous attacks » as before. We do not need a psychologist anymore; in my opinion, I’m sure it was linked with some areas of the brain affected …
Marc become very nice and cooperative as before. He is very committed. He understands everything. He made very great progress of speech and this without orthophonist to Israel for the first time, he was able to talk to me on the phone down ….. He makes jokes, eats better and has a big appetite, he has gained weight. All this in 3 months of HBOT!
My whole family is aware of the progress. (In Marc’s case, the oxygen deprivation lasted 5 minutes while his heart was stopped ….)
3) we did chock waves in Germany
Here clinique Bad Krozingen: ( on their site you have studies published)
(2 weeks) from 12 to 23 December 2016 and also the orthopedic sowing
Budget: 3500 € therapies + 1000 € accommodation
results:
For example, when he walks his left feet he does not turn at all in equine …. but equine is still present when he sits and is elsewhere …
He wrote his name first time all alone in Almagne and he was not helped at all …. (before he can not do the straight line …) and After Almagne I find his approach a bit better .. more stable less swaying … and he puts his feet closer …. (less equartee) … But results were much less obvious than after Hbot ….
4) we did Gyrostim and neurofeedback end of April 5 days 2017 in France
http://www.brainmoove.com/en/infrastructures-high-technology-equipment/
I found this center like in Orlando ( but cheaper and in France)😉
1000 € therapy 5 days
And 2 weeks from August 20 to September 2 2017 … (results: I think Marc has become more « stable » in His walking…. But it’s not miraculous .. Just good method reheducation to me ….I already did reservation for this summer 2018 so yes it’s one of my favorite programs after Hbot 😉
2 weeks: 1700 € therapies You need housing (2 weeks in August for example we have to pay 1450 €)
5) we consulted
June 6, 2017 With Dr. Cacabelos in Spain
Budget 5000 € (good tests / and MRI / but I am not convinced with supliments he prescribed to Marc ….after 6 months I didn’t saw much results for his secondary Dystonia (Atremorine was the reason I consulted it’s the natural dopamine from plant this Dr made…but I don’t think it works for Marc ) For Dystonia I see nothing honestly After 6 months …) …..I stoped his suppléments from end October 2017)…I still do just omega3 natural fish oil but theses supliment I did by myself without Dr consultation…)
6) Operations (3em ablation WPW) 5 October 2017 With Dr. Maltret in Paris hospital Massy in France didn’t worked ….
So my next step was to find best Wpw dr in the world 🙂
My son had 5 heart operations ( it’s ablation of his WPW) wolf Parkinson’s wight syndrome it’s mainstream operation but in France 2 docors can’t made this operation sucsessfuly they did 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 have other technic 5 cateters ablation ( his name « Pappone ablation technique ») so he did finally successfull!
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 in June it’s perfect … )
7. Next : I contacted Dr Park in USA I send his documents for SDR evaluation finally Dr Park confirm my thoughts that he is predominant dystonia and not much spasticity ( so at any case he is not candidate for SDR).
Dr Park ( in USA) doing revolutionary technique of SDR operation for CP it’s literally changes life’s if cp children’s… and he is mainstream but researcher doctor….BUT!!!!
I try to be objective SDR is very invasive operation on spine : it could give impressive results ( not in all cases)
Long term I honestly don’t know if we have clear picture what it do to spine of children’s ….
But yes it could have % of big risks
At the end of the day it’s parents who must decide if they want take this risk or not….
Here dr Park page: https://m.facebook.com/groups/161839724125
8)PoNS device we are doing naw only for 4 months ( from 20 March 2018) we started almost at the same time as our third session 30h of Hbot in Israel from 2d Aipril so for us it will be be mixture Hbot with pons results later but he progressed enormously from this period 😉
He has more energy and better prononsaition/ better balance and walking but don’t forget we was doing Pons at the same as Hbot so mixtures of 2 therapies hbot+pons….
cranial nerve non invasive neuromodulation. In Russia in st petesbourg they did clinical trail for CP children’s ….
https://www.ncbi.nlm.nih.gov/books/NBK299239/#!po=3.06122
So honestly :
Changements After Hbot : huge
After Pons: real big!
Almagne shock waves / Gyrostim / small changes compared to what I saw With Hbot and Pons.
And here some story about mainstream medical point of vue: ( just a part of my thinking)
…. mainstream medecin doctors….
They can change ! If they see results they do change not all the time but sometimes ( it depands of person …)
At the very beginning
In 2016 I started to work for Marc with PT doctor ( kine therapy in French I don’t know is PT in English?)
She is liberal on her own account but before she was in hospital working…
first yeas she was not very for all I was doing for Marc: Hbot and Gyrostim etc …. she always said « it’s too much ….live him to rest ….takes real vacations »
but I didn’t … all our vacations during last 2 and half years « not real vacations » or we are in Israel for Hbot vacations but there’s see side and we go every day on beach so it’s vacations….Or we are in st Malo ( Atlantic ) and doing Gyrostim and intensive PT 3 h every morning during 2 weeks….and searching crabs afternoons on the beach….it’s our “vacations “
So Mid June this year we had appointment with her ( she didn’t saw Marc for 3 weeks she was sick so no appointment every week as usually we have..) and she said me honestly that she is astonished with his progress : from end of March 2018
She never saw such progress in cp children’s in such short period of time…
(Ok we was doing Hbot and Pons therapy at home at the same time so yes it’s the mixture of results )….
But
What I want to say : she is changed! Mainstream doctor changed….
Naw she wants all informations from me ( she recognized that all these alternatives therapies will May be never be payed by insurance in France or may be a bit in 15 years she is ashamed as well as me…) she was exited that I said her about opening First Hbot private in france she wants contact to give her others parents … and talk to ostéopathe opens this center….
So you see somebody mainstream medecin could change if see results astonishing results never possible with only recognized method
( she recognized it!) she saw Marc at very beginning just after anoxic injury so she knows exactly from where we come from ….
And she has a lot of experience with others cases like him ( anoxic injury) but not only:strokes / cp etc….
Never Marc could do such gains only with ordinary therapies …. she said ( she never thought it possible in the beginning ….she was helping me to find best trolley for children’s with disabilities and trying to enter in my head that it will be my new “normal “….) it was yet when Marc wasn’t walking at all ….long long time ago….more than 2 years ago….
Of cause every brain injury is different and we can’t predict the results but all what I think
Best possible results we can achieve only by doing a lot a lot of different therapies…
So our program for 2019:
20 August -2 September (2 weeks) Gyrostim and neroplasticity brain center training 3h per day again I think we will do it every year till neded.
Our 5th operation 21 May 2018 – ( is sucseful it was confirmed by ekg 14 September 2018 in Italy andby EKG in france February 2019).
PoNS i really believe it works greatly but it’s not possible for everybody ( we get it only because I am Russian origins… it’s the only way in Russia as I said they did clinical trail for CP children’s)….
So yes again Hbot : we do soft hbot at home this time.
And we started soft hbot ( june 2019 )
I honestly believe that soft chamber can also help in many ways but I think it’s not the best for a period of time right after his injury but on the other hand 100% oxygen has more potential right after an injury from my point of view.
I’ll be honest; I do understand that parents can’t always go to clinics every year, or twice a year for 2 months…. ( in order to do 40 dives).
Just to give you an exemple:
We did four months in Israel’s Hbot back in 2016 ( which was the best thing that could happened to Marc) so it was the period when oxygen 100% helped him mostly and it was more potential because more close to injury in time.
we also did one month in 2017 and then two months in 2018
So in total we did 110hours of hard chamber (1,5ata 100% oxygen) in 3 years.
Both of the two last times, we saw progress which was much less obvious than at his first time in 2016 and it’s totally normal.
So now we are sold on soft chamber: it’s obvious it still helps him but I really think that I would do it now at 1,3 ata without oxygen, not because it’s my favorite protocol, but because it’s safe for home use. In those circumstances it would give less results but everyone is able to do it at home which by the way makes it 50% more oxygen in his plasma that will help him.
So it’s just obvious, we can not escape school every year for 2 months. So I believe that a soft chamber can be THE solution for long term treatment (we are talking years after the acute injury).
And by the way we have some good canadien group testimonials from parents (in french only) who mostly used soft chamber treatments only.
Here’s our chamber installation :
http://brain-injury-hope.com/2019/05/we-are-starting-soft-hbot-for-marc/
10)
August 2018 2 weeks intensive Feldenkrais ( at home I found practitioner who comes to our home 10 days every day 1h).
11)20 August -2 September2018 (2 weeks) Gyrostim and neroplasticity brain center training 3h per day
12)HLA matched cord blood transfusion in Samara September 2019 ( very good progress)
Marc has made huge progress since our return from Samara
I can’t detail all of them, here is a few
Reading : he has more facilities. I was doubting he could read at all a few weeks ago and now I know he will and in a short notice
Speaking : more fluid, louder
Fine motor skills. He teaches me how to write now even if my writing is the one of a good doctor
Balance : can walk stairs almost without any help
Strength : he walks longer
Clinical trails I helped to open in Samara:
( with allogenic cord blood)
Cp
https://clinicaltrials.gov/ct2/show/NCT04098029
And ASD:
https://clinicaltrials.gov/ct2/show/NCT04099381
13)
In 2020 it was big pose ( because of Covid) and we decided as we can’t travel we bought Galileo plate…
In july 2021 I think somthing like that ( I don’t remember exactly date ) we didn’t use it a lot before our travel to center BrainMoove but we started to use. Every day Galileo end August and September….
And Marc did stoped walking in October! And he was complaining about pain at same time yes he fall at school ( but finally naw with time I know it was Galileo plate – not the fall responsible)….
also just to add about Galileo plate ( my son good walker was using about 1 month a bit more …may be but in beginning of October … he stoped Walking and complained about pain ! We did radios and a lot of consultations and foud that his legs become much more stiffer than before ( why ? What the reason of spasticity just augmented so quickly and enormously?)
I was searching a lot it happened last year ) so I foud yes it could damage as well ( in standing position) he had pain in tibias posterior! – And guess what Dr Nuzzo will be operating him during splm? – on tibias posterior…. It’s augmented his stiffness enormously honestly – it took me 2 weeks intensive PT that he just restart to walking ( not as well as before) and about 3 months training that he approximately achieve his previous Level ( before starting Galileo) so it was our very bad experience – Galileo honestly…. He still didn’t achieve same level on stairs as before Galileo – so it’s one of mistakes I did and it was ours bad experience )….
“More significant adverse effects have also been reported including hip (Crewther et al., 2004) and knee pain Russo et al., 2003), and discomfort from the vibration induced head motion (Crewther et al., 2004). One study (Cronin, Oliver & McNair, 2004) reported participants to complain of pain in the jaw, neck, and the lower extremity (particularly in the tibialis posterior). The pain required physiotherapy treatment in some participants and took seven to ten days to subside.”
While it is known that Ia afferents inhibit motor neurons to the antagonistic muscle (Mester et al. 1999), vibration also induces a tonic vibration reflex (TVR) and increases muscle stiffness (Cronin et al. 2004;Mester et al. 1999).
14)July- August 2021 2 weeksGyrostim and neroplasticity brain center training 3h per day
15)April 2022 again – 1 week to center with Gyrostim and neroplasticity “ BrainMoove “
So honestly :
Changes After Hbot : huge
After Pons: real big!
Cord blood – good progress
Our Worst experience – Galileo plate
Almagne shock waves / Gyrostim / small changes compared to what I saw With Hbot and Pons.
16)4 August 2022 :
4 August 2022 SPLM operation with dr Nuzzo (USA) https://www.instagram.com/svetpanuta/guide/splm-usa-dr-nuzzo/18315606283075935/?igshid=YmMyMTA2M2Y=
and 15 August-30 August Feldenkrais intensif at our return to france / asap swimming training bike and walking training with personal coach:
https://www.instagram.com/reel/Coxo2wossFk/?igshid=YmMyMTA2M2Y=
17)February 2023 Intensive in Poland Olinek:
https://www.instagram.com/reel/Cogp1RsP7B7/?igshid=YmMyMTA2M2Y=
I also hope I will get nasal splay from allogenic cord blood with exosomes ( 1×10^12 exosomes in bottle) for Cp for naw new protocol it’s twice per day spray during 1 moth than : second month once per day….. in 2023
And we did restart Pons training January 2022( i got more mouthpices for pons device) Covid was really difficult for all travel and therapies…. For 2 years….
Thinking about exosomes because of this new study:
https://www.dailymail.co.uk/health/article-10869043/World-nasal-drops-reversed-little-Sennas-brain-damage.html?ITO=applenews&fs=e&s=cl&fbclid=IwAR0xdo2O2urROJmK4OxqHOXmag90reSKZGiw_XKS2E0AhRMjM8XVgU4GHNo&fs=e&s=cl#l3tfjs1rd2q2rq4gqmc
Ps:
Of cause we have standard reheducations in France every week :
kine PT 1h per week
/ Ortophonist speech thérapie 1h week
/ ergo fine motor functions and use computer to read/writing 1h week
/ Psycomotricen it’s like second type PT 1h week
French privat lessons teacher 3 h per week swimming lessons once a week 1h
Private trainer ( specialist in CP children’s 3h per week every wensday afternoon)
Exept that I am not working so I do 3x times per day EVERY DAY and Weekends: 20min Pons for him with stretching/ running machine and playing in order to develop his fine motor functions more…
That’s all for our experience …
Marc continues to progress and we thank God / our good star and our parents and family for any help …..
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.