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Third treatment in Egypt, 6/6/2011 – 21/6/2011

This year, for the third time we went to Hurghada to go through the special treatment of Dr. Eva Augustinova. Her treatment and the sea climate have positive impacts on daughter´s development and we believe that they could improve her health condition. This time Monika has managed the complete treatment without difficulties. Every day during the morning we went by foot to doctor’s ambulance, where injections in hip and/or ears were made. We were surprised that our daughter after such a long time recalls the environment and the ambulance.

Besides the beach and the Red Sea, where for couple of times the climate was quite windy, Monika got very much used to one of the hotel’s swimming pools with heated salt water. She liked it so much that we stayed in the water for almost 2 hours! In the water she was very pleased and made happy sounds and kicked with her legs. We noticed a quite positive change in her behaviour when through her different sounds and noises (she was whimpering, got enraged or was grumbling) she made us understand her wish to go to water.

In Monika’s case the medication seems to affect mainly her mental development. Nevertheless we believe that the psychomotor condition can be partially balanced by “swimming” and physiotherapy in the sea water. We have also noticed that the phytotherapeutic medication influences and reduces Monika´s seizures that we have described below. That is why we want to continue with the therapy for the future and we will try to ensure necessary funds for the treatment. This time however due to our financial situation we will probably live in a residence quarter, where the price for 3 weeks is only around 400 EUR compared to hotels.

Boskovice, 2/3/2011 – 29/3/2011

In March 2011 we have spent, for the 4th time, four weeks in Children Medical Centre for Motoric Disorders in Boskovice. Due to an intensive physiotherapy programme Monika has learnt new "stereotype" movements of her hands.

During this stay Monika has moved forward especially in relation to social contact. We find really beneficial the presence of other children – Monika is used to them thanks to regular nursery attendance. Twice a week, in addition to the physiotherapy programme, we have together with other parents and children organised stays in a special salt cave.Moreover, during the stay we have organised two celebrations in masks. All the children have really enjoyed those events with joy and enthusiasm. After almost 4 years we have noted another “significant” progress. In a special herbal shop in Boskovice we discovered a special herbal fruit tea which seems to be quite acceptable for our daughter :-). We struggle with this difficulty from Monika´s birth and in this case, for the first time, Monika did not refuse to drink.

Article in magazine Rytmus života, March 2011

At the end of the year 2010, the Early Intervention Service, Diaconia of ECCB has addressed us with request to participate in the interview for the magazine “Rytmus života”. The aim of this interview was to introduce the programme of the early intervention service and at the same time to describe the daily routine of a family with handicapped child. The article was published at the beginning of February 2011.

Special children nursery - Modrý klíč, January 2011

Complementary to "Filipovka" Monica has begun to attend a special nursery "Modrý klíč" as of January 2011. This facility includes a special nursery and school for older children. In a few years time Monika will reach the school age and in this situation she could smoothly move to higher grade within the educationnal system of Modrý klíč. During the first two visits she was crying and she had to get used to new "aunts" and children, but after a certain time, Monika began to like it there. In Modrý klíč there are many possibilities for children´s development including physiotherapy, balneotherapy (swimming pool, whirlpool), hipotherapy, etc..

Diagnosis specification, October 2010

In October 2010 unspecified seizures have appeared repeatedly and Monika was again hospitalised at the department of child neurology. The EEG examination has showed unspecified image that can indicate either some kind of behaviour disorder or specific symptoms of epilepsy. Due to the unspecified and atypical form of the seizures (mostly in the evening, intense crying together with screaming, narrow eye contact without any reaction to us) we have decided together with the doctors not to prescribe any specific medication. Currently we are monitoring the situation in order to specify the nature of the seizures.

Few days later during the regular medical review at the department of metabolic diseases and genetics the doctors have finally confirmed, after 3 years of various examinations and tests, the diagnosis i.e. mitochondrial encephalopathy. There are many types and symptoms of those diseases but all of them are degenerative and unfortunately there is currently worldwide no efficient treatment to this disorder. From the long term view the doctors are unable to set an exact prognosis but they predict slow worsening of Monika´s health condition. In the light of those findings our objective is to slow down prospective health complications as much as possible.

For the future we will continue in our efforts as to approach our daughter’s daily life to “standard routine” and we will deal with all the eventual health complications successively. Despite of the diagnosis we see that the psychomotor development moves forward in very slow pace and even the doctors have stated the progress especially in social interaction. Considering all the results and findings, where some of them were many times atypical and nonstandard, we hope that the course of this mitochondrial disease will also develop in its own way...

Second treatment in Egypt, 13/9/2010 – 27/9/2010

In September 2010 Monika went through another treatment of Dr. Eva Augustinova in Hurghada, Egypt. It was our second stay and this year we spent in Hurghada 15 days. The first week has passed without major complications. We were staying at a hotel near the ambulace and thanks to this close distance we could go to the doctor’s every day by foot where injection in hip and/or ears was made. The second week, after the consultation with the doctor, we had to suspend the treatment for one day due to unspecified seizures, vomiting and fever. Fortunately during the short period of time the high temperatures have passed and we could complete the treatment. Compared with our previous stay in 2009, Monika has perceived the environment more intensively – as soon as we approached the ambulance she knew what will be ahead (injection medication) and started to cry. This behavior can be explained in a positive way while it proves an ascending mental development of our daughter.

In combination with the everyday stay in the Red sea we could see tense release in her hands and legs as well as strengthening of the muscles. Monika tried to touch all the objects around and her hand grasp became better too. After a few moments in the water she got more relaxed and briskly moved with her legs. We have also changed the special inflatable chair for less stable inflatable circle. Despite initial fear Monika got used to it, dipped her hands into the water and moved quickly with her legs with confidence.

The third day of the treatment during our return from the ambulance, we have experienced a surprising incident. While Monika was sleeping in her buggy she used her right hand to whip away small fly from her nose. Considering her motoric development of her right hand, which was always weaker compared to her left side, the above described event represents an important progress!

After our return from Egypt Monika has began to use more intensively the baby jargon like “papapa”, “hm” and “plapla” as well as started to differ the intonation and timbre of those “words”.

Now, she also knows how to refuse food and drink: –she turns her head aside, grasps the spoon and shifts it aside together with loud whimper. We hope that the treatment of Dr. Augustinova will continue to bring positive results both in the development and improvement of the immunity too. At the same time we believe that the medication will influence the described seizures in a positive way.

Monika´s third birthday, 29/7/2010

In July 2010, on the occasion of Monika´s third birthday, we have organized a celebration for her. Our daughter has examined all the gifts carefully and she has even tasted her birthday fruit cake.

Monika has enjoyed the event in a great mood and we were delighted that she perceived the festive atmosphere with pleasure and enthusiasm. This expressed joy approached her to all the other children who also savour fully their birthday festivities.

Second stay in ADELI Centre in Piešťany (19/4/2010 - 1/5/2010), 13/7/2010

By the end of April 2010 Monika has spent another 2 weeks in ADELI Centre. We have to admit that the progress occurs in small steps nevertheless due to the special scheme of physiotherapy Monika’s muscles have strengthened and the spastic tonus has lessened as well. In comparison with the first stay Monika went through the whole programme without any bigger difficulties and managed to “hold out” the daily 5-hour schedule. The physiotherapy programme has covered:

1) oxygen therapy - oxygen inhalation to stimulate brain activity (ca. 15 minutes per day)

2) laser, MRT - reflex stimulation on wrists, chin, ears and heels (ca. 15 minutes per day)

3) hot pack - muscle stimulation and warming up for physiotherapy (ca. 15 minutes per day)

4) physiotherapy in ADELI suit – the physiotherapy started with the stretching of all muscles in sequence (arms, legs, etc.), followed by special exercises on gym balls and exercises for balance development. After an hour, with the help of a special hanging standing device for walking, Monika continued to exercise in vertical position – the therapists helped to keep Monika’s feet in correct position and guided her legs to perform steps. This scheme was approximately 3 times during the stay performed in reversed order (ca. 2 hours per day).

5) massage - the whole-body massage was the following step after the intense physiotherapy (ca. 30 minutes per day). The second week Monika usually fell asleep after the exercising and when she woke up, massage took place.

6) mud pack – in many cases, due to Monika´s impatience, performed together with the whole-body massage (ca. 15 minutes per day)

7) manual therapy - joint stimulation carried out by a Russian-speaking orthopaedist (special Russian method) consisting of stretching and “shaking” the whole body’s muscles/joints. The doctor made the whole procedure either by aid of his hands or by aid of a special roller with soft spines (2 times per week, c. 30 minutes).

8) logopaedia - orofacial stimulation of different face’s spots in order to activate the correct function of muscles necessary for chewing, swallowing and speaking. The therapist started the stimulation by a pressure on the different spots and after she continued by aid of a brush (circle movements). The whole facial massage was ended by aid of face lotion. During the therapy the logopedist tried several times to get into Monika’s mouth in order to massage the gums – sometimes with success sometimes with none...(2 times per week, c. 30 minutes).

Special medical aid for „walking“ training, 08/03/2010

Following the intense physiotherapy method in ADELI Center (Monika spent 14 days there in Autumn 2009) we have decided to install a special aid: „hanging standing device for walking“ training at home. At this vertical position we can practise another type of physiotherapy in order to stimulate our daughter. First of all she must get aware about her legs and consequently in the future, hopefully, this device will help Monika to learn the correct movements necessary for walking. We train „the walking“ with her twice a day approximately 15-20 minutes and she got used to it surprisingly really well. Monika realised that thanks to the vertical position she has a better overview and pays attention to all details around her. We are trying to approach the training to the ADELI method and Monika’s „walking“ is enriched by games such as „bubble-catching“, ball plays, singing, „dancing“… It has already happened that Monika succeeded to make a real turn around herself!

In this connection we really appreciate the helpful attitude of Portaflex s. r. o. company, which has provided the mechanical components for hanging device as a donation. We would therefore like to express, once again, our thanks for their initiative.

Feedback and summary of undergone therapies (period between July 2009 and January 2010), 12/02/2010

Seven months have gone since our return from the medical treatement in Egypt. During that time according to doctor Augustinova’s prescriptions we have regurarly applied all the medication. Along with this we made some changes in Monika’s alimentation and included new ingredients important to the body thanks to their substantial value. Those were all kind of pulses such as lentils, beans or peans that Monika really fell for. The intense taste of fish as salmon or of special „butters“ such as peanut, almond, sesame or hazel-nut did neither make any troubles.

This medical treatment is based on the overall body purification and stimulation with the main objective to „restart“ brain’s activity. In connection to the latter we can see that the therapy really helped especially in Monika’s mental development. She has become much more receptive, she reacts upon her name when we are addressing her, her hands are more relaxed and she is using them when playing with different toys or objects. Her interest has grown significantly – she „asks“ for contact and overall she seems to be more „hard-bitten“. She likes to be in company with her mom/dad and during the sleep time she requires their presence. She also started to connect different events in the everyday-life – if hears saying „vrrr“ she know that mom/dad will mix the food or as soon as we put on her glasses, she turns her head towards TV and expects to see her favorite cartoon. In addition to this Monika has not been ill since summer 2009 – she only had a mild 3-day cold without fever.

In September 2010 we are planning to return to Hurghada. The above mentionned cure is a long-process course and it may take several years before Monika’s condition will get better in a really significant measure. In spite of the latter her overall psychomotor progress is ongoing and that is the key factor for us – Monika is a real fighter and her efforts are great.

As we are seeing that dr. Agustinova’s therapy is bringing results in combination with physiotherapy, it was a quite natural decision from our part to visit the ADELI center and try its intense physiotherapeutic method. Immediately upon our return from Slovakia we fell that Monika got firmer and using her hands for discovering things around her became a quite natural reaction. Her muscles around the neck got also firmer and consequentls her head stopped falling. Unfortunately soon after Christmas Monika was hospitalised for planned intervention (muscle biopsy, dermal biopsy and spinal tap) and she had a two-week recovery regime during which physiotherapy was not recommended. Due to this she got used to the prescribed „idle-mode“ and currently it is very difficult to motivate her to any kind of exercise. Consequently our physiotherapy equals playing and we hope that soon she will accept it as something natural. At present we are working on the installation of a special „walking-system“ alike the one that was used in ADELI center in order to stimulate Monika in vertical position and „teach her how to walk“. We have addressed companies Maxim and Portaflex s.r.o. and they provided us with necessary components. Another physiotherapeutic stay in ADELI is planned for Spring 2010 and thanks to our „home-made“ walking system we hope that she will be well prepared for the „walking“ in the ADELI suit.

Canistherapy in Filipovka nursery, 04/02/2010

In the frame of canistherapy within Filipovka nursery Monika‘s first meeting with black labrador Bara took place. Monika was really enjoying it and this canistherapeutic session was very successful. According to the therapeutists dog Bara fell for Monika and gave her „kisses“. Together with labrador Bara the nursery will welcome another dog helper which will enable Monika and the other children to enjoy all the benefits of canistherapy twice a week. Given the fact that Monika got used to the dog, we are currently planning to address some associations specialised in cannistherapeutic training in order to get the necessary information about how to obtain such a dog friend.

ADELI Centre in Piešťany, 23/11/2009 - 05/12/200

By the end of November Monika has spent 2 weeks in ADELI Center in Piestany, Slovakia. In this specialized physiotherapy institute she had a very intense programme during the whole morning six days/week. Besides the everyday exercising in the special „cosmic“ ADELI suit Monika also had other therapies that were part of the stay. Those were massage of the whole body, logopaedia (stimulation of the vocal organs), manual therapy (joint stimulation), laser and oxygen therapy. It took a while before Monika got used to such a kind of regime but after few days some of the therapies became her favourite. The aim of this physiotherapy is the development of the overall psychomotor side. The neurologist at ADELI recommends to repeat the stay at least 3x/year. At the moment it is still to early to see any significant changes in our daughter’s condition, nevertheless we can see some strengthening of her muscles. The most touching experience was to see Monika’s „first steps“. Despite this very exhaustive physio-programme she managed it very well and we are so proud of her. With regard to the high-level care and the overall good impression that we had from the ADELI method we would like to repeat our stay throughout next spring.

Baby swimming club Kenny, 30/10/2009

At the end of October for the first time, Monika took part in a special physiotherapy swimming lesson. This first experience was very successful as our daughter enjoyed both exercises in water and company with other childern very much. Monika was really relaxed and therefore we will go to Kenny club on regular basis once a week.

FILIPOVKA special children „nursery“, 5/10/2009

We have decided to put Monika in Filipovka centre in order to enable her socializing with other children and adults as well as getting in contact with another kind of objects developing the general stimulation. Therefore she will be visiting the centre as of October 2009. From the beginning Monika will spend there only a few hours in week and if no major difficulties will occur the time will be prolonged.

The first visit went really well and Monika was very happy. Once a week in soon future a therapeutist will provide children with cannistherapy (alternative medical therapy aided by dogs) and everyday they get special massage. The centre admits maximum six children and there are three specially trained therapeutists. We therefore beleive that our daughter will be provided with an intense attention and care.

TV programme Klíč, Monika with other children in Filipovka Centre, TV channel CT2, 17/11/2009

Otto Bock, 23/9/2009

Mr Petr Kaufman from company Otto Bock ČR s.r.o., delivered to us rehab buggy Otto Bock Kimba Spring and a special seating system Otto Bock Leckey MyGo. Thanks to their very stable construction and special accessories Monika is fixed in a steady sitting position enabling her back being really firm without toppling down. Moreover all this perfectly develops the overall space perception. A specially designed big table enables Monika relaxing and intensively using her hands while playing and eating.

Hippotherapy Centre in Bohnice, 24/9/2009

After having passed the horse riding in Children Medical Centre for Motoric Disorders in Boskovice with success, Monika has started her new lessons in Prague – Bohnice on 24/09/2009. From the beginning she will go to the hippotherapy centre in Bohnice once a week. At first Monika was positionned on her belly but after a while she prefered to „sit“ in front of the therapeutist. This enabled her to have a much better view and also forced her to keep the balance.

Children Medical Centre for Motoric Disorders in Boskovice, 26/8/2009 – 22/9/2009

Monika has spent a 28th-day stay in Children Medical Centre for Motoric Disorders in Boskovice close to Brno. Besides the everyday physiotherapy on special exercise balls (shaped as peanut) of different sizes and rollers, Monika also had the possibility to experience the hippotherapy (alternative therapy aided by a horse). Given the fact that she supported this form of treatment rather well we have decided to continue with hippotherapy in Prague too. We will visit a specialized hippodrome in Prague – Bohnice (Hippotherapy Centre in Bohnice).

During the physiotherapy in Boskovice the main focus was directed towards the strengthening of Monika´s hands and back. In addition to the exercise balls we also trained her muscles through the Bobath technique.

Overall this physiotherapy stay helped Monika a lot even though we still have a very long way ahead. Her hands and back gained in force and she is now able to hold the balance while exercising on balls or rollers. We really hope that Monika´s condition will further improve. Moreover she improved mentally as well as she got used to other children which will be a great asset when visiting the Filipovka „nursery“.

Finally we would like to thank to the whole team of Boskovice centre and especially to Mrs. Jana Janásková for all the patience and advices in relation to exercises.