Персональный сайт Кирилла

Discharge report

Milana — Thu, 20 Feb 2014 19:26:31 GMT

Hospital discharge report No. 28788

Kirill Ilyich Batishchev

Date of birth: 04/30/2013

The child was cured in Department of psychoneurology for infants in State institution "Voronezh Regional Children’s Hospital No. 1” from 10/07/2013 till 11/03/2013.

Main diagnosis: Infantile cerebral paralysis, spastic tetraplegia (G 80.8),

disorder of psychomotor development (F83) due to severe organic lesion of Central Nervous System. Symptomatic epilepsy (West syndrome) (G 40.6).

Secondary diagnosis: Mild iron-deficient anemia (D 50). Long-lasting conjugated hyper-bilirubinemia (Р 59.8). Patent foramen ovale (Q 21.8). Cholestasis (K 82.4). Carrier state of HCVAb (P96).

Life history:

The child is from second pregnancy. Recent toxicosis (7-10 weeks). Midpregnancy ARVI (27-28 weeks).The mother was on L-thyroxine during pregnancy. Vaginal birth (oxytocia – 3 hours). Premature delivery - 32 weeks due to early discharge of amniotic fluid. Birth weight – 2030g. Length of the newborn - 45 cm. Head circumference – 31cm. Apgar score – 6/7.

At the present time the baby cannot hold his head up, fixes his eyes on a subject for a short time, slowly forms orientating response to sounds.

The child has vaccination exemption.

Medical history:

The baby was born in spontaneous premature vaginal delivery on the 32nd week. He was taken immediately to neonatal intensive care unit straight from the delivery room. Due to respiratory distress syndrome (congenital pneumonia) the baby was put on artificial lung ventilation apparatus.

After 7 days he was allowed to breathe independently and was moved to premature baby pathology department. On the 14th day he started to suckle. Since the 24^th day he is on exclusive breastfeeding.

During 6 months the child has been under 4 courses of medical treatment in Voronezh Regional Children’s Hospital.

07/05/2013 - 05/24/2013 Premature baby pathology department №3

Diagnosis:

Cerebral Ischaemia of 3rd degree, Bilateral Intraventricular hamorrhagge of 3rd degree, periventricular leucomalacia, syndrome of pyramid insufficiency. Birth trauma of cervical spine (dislocation of vertebra C1-C2).

06/26/2013 – 07/09/2013 Premature baby pathology department №1

Diagnosis:

Motor skills disorder. Multicystic encephalomalacia. Epileptiform activity on EEG.

08/05/2013 – 08/12/2013 Department of psychoneurology for infants

Diagnosis:

Syndrome of severe bilateral pyramid insufficiency. Slowing of psychomotor development. Periventricular leucomalacia. Communicating vicar hydrocephalus.

10/07/2013 – 11/03/2013 Department of psychoneurology for infants

Diagnosis:

Infantile cerebral paralysis. Disorder of psychomotor development . Symptomatic epilepsy (West syndrome).

The child was taken to hospital to conduct anticonvulsant therapy.

Physical examination:

Weight -7400g. Length -68cm. Head circumference – 42cm. Mesosomia. Smooth skin cover. Respiratory rate 28per min. Doughy stool.

Neurological status:

Titubation. Disorder of psychomotor development: the baby cannot hold his head up, fixes his eyes on a subject for a short time, slowly forms orientating response to sounds.

Reinforced tendon reflexes. D=S. Hyper muscle tone. Feet clonus. Disorder of development of righting reflexes.

Examination data:

Ophthalmologist

10/20/2013:

Optic nerve partial atrophy. Concomitant intermittent exotropia

Speech and language pathologist

10/11/2013:

Spasmodic dysarthria

Orthopedist

10/11/2013:

Hip dysplasia

Electroencephalography (real time video)

10/03/2013:

Background activity of wakefulness is presented by a hypsarhythmia in which structure the discharges of multiregional epileptiform activity, such as spike - slow wave, sharp - slow wave are registered. Against mild diffuse changes of brain biorhythmic there can be registered local epileptiform activity, such as sharp waves, sharp – slow wave complex in occipital region of the head, dominating in left or right hemisphere and bilateral extension on both left and right parietal-central region, frontal region. Sleep study showed multiregional epileptiform activity with deceleration and dominating in back parts of brain hemispheres.

MRT

07/01/2013:

Periventricular leucomalacia. Communicating internal vicar hydrocephalus. Atrophic changes of parietal, temporal and occipital lobes of alba.

Cerebellar vermian hypoplasia .

Enlargement of cerebellomedullary cistern.

Blood test of metabolic disorders

10/11/2013:

None of congenital aminoacidopathy, organic aciduria, or mitochondrial beta-oxidation defects have been found.

Treatment provided:

1. Convulex (code ATX N03AG01 (Valproic acid))

2. Magnesia

3. Pyridoxin

4. Mexidol

5. Dexamethasone

Treatment recommended:

1. Convulex

2. Topamax

Bill

Milana — Sun, 09 Feb 2014 18:22:15 GMT

Our Plans for the Future

KateBatisheva — Tue, 04 Feb 2014 20:01:35 GMT

1. A trip to France to see Dr. Dulac would cost us from $2500 to $2900 and would include visa fees, plane tickets, accommodation, clinic examinations, and the consultation with the doctor.

2. We received an invitation for a prompt treatment in the Center for Neurosurgery, Neuropediatrics and Junior Epilepsy, known as the Schon Clinic in the town of Vogtareuth (http://www.schoen-kliniken.com/ptp/kkh/bhz/). This clinic is recognized as one of the leading centers in the field of neurosurgery in the world. It specializes on resistant forms of epilepsy and has all necessary diagnostic and therapeutic capabilities. Additionaly, the course of treatment includes neurorehabilitation (Reflexlocomotion, or the Vojta Method, Bobath therapy and other treatments, which are particularly effective in infancy. The clinic has prepared for us an advance invoice for 31 330 Euro, not including plane tickets, ground transportation and other possible expenses.

3. Kirill constantly needs to take foreign-made antiepileptic drugs that cost us from 50 up to 200 Euro per box. Namely, Sabril - 53 Euro for 50 tablets, Synacthen depot - 1 vial (1 ml) - 43 Euro.

About us

KateBatisheva — Mon, 27 Jan 2014 18:36:16 GMT

"Healing is a matter of time, but sometimes it's also a matter of opportunity"

Hippocrates

Hello dear friends!

My name is Ekaterina. I'm the mother of a wonderful boy, Kirill, who suffers from a severy disease. On our web site you will learn the life story of my son, how he grows and develops, and about our plans for the future.

Kirill suffers from symptomatic epilepsy (West syndrome), cerebral palsy (spastic quadriplegia), impaired psychomotor development, partial atrophy of the optic nerve.

He's got an older brother - Andrew, 2.5 years old. My sons are the meaning of my life, my joy and hope! Their father works very hard and does his best to provide the living of our family.

We strongly believe that our beloved Kirill will some day become healthy and happy, will be able to walk, run, read books, play sports and just live like other healthy children!

Our first priority now is to stop seizures, to find the right therapy that will be effective and will give the kid a chance to develop. He has to take expencive midicine and go through medical investigation and therapy correction abroad. Afterwards, he will need intensive rehabilitation (massage, exercise therapy, Vojta therapy, Bobath therapy, and so on). All this is very expencive and, unfortunately, we cannot afford it. But this is Kirill's only hope. So we kindly ask you to help our family and give our son the slightest chance to recover!

We appeal to you to support us in this difficult situation!

Together we will help Kirill survive!

Thank you very much in advance!

Benefection Details

KateBatisheva — Mon, 27 Jan 2014 18:15:50 GMT

If you wish to help us, please see the following details:

PayPal

e-mail: KateBatisheva@yandex.ru

Western Union/ MoneyGram

BATISHCHEVA EKATERINA, Voronezh, Russia

Cell phone:

+7 (952) 100 50 90

E-mail:

laqueen.2003@mail.ru

Kindly send the following information to the e-mail or phone number above:

Amount, currency, Your name, city, country and the code

Foreign Currency Bank Transfers:

US Dollars

Receiver’s correspondent:

IRVTUS3N

BANK OF NEW YORK

NEW YORK NY USA

Intermediary institution:

SABRRUMM

SBERBANK

MOSCOW

Account with institution:

SWIFT-code: SABRRUMMVH1

SBERBANK

(TSENTRALNO-CHERNOZEMNY HEAD OFFICE)

VORONEZH

Beneficiary customer:

4081 7840 6130 0000 1204

EKATERINA BATISHCHEVA

Purpose:

For treatment of Batishchev Kirill

EURO

Receiver’s correspondent:

DEUTDEFF

DEUTSCHE BANK AG

FRANKFURT AM MAIN

Intermediary institution:

SABRRUMM

SBERBANK

MOSCOW

Account with institution:

SWIFT-code: SABRRUMMVH1

SBERBANK

(TSENTRALNO-CHERNOZEMNY HEAD OFFICE)

VORONEZH

Beneficiary customer:

4081 7978 2130 0000 1026

EKATERINA BATISHCHEVA

Purpose:

For treatment of Batishchev Kirill

THANK YOU VERY MUCH!

You are welcome to contact us

KateBatisheva — Mon, 27 Jan 2014 18:01:48 GMT

Ekaterina (Kirill's mother)

Cell phone: +7(952)100 50 90

E-mail: laqueen.2003@mail.ru

Skype: katusha_mea

Facebook https://www.facebook.com/

https://www.facebook.com/groups/191387877735372/ - Kirill's group

Our story

Milana — Sun, 26 Jan 2014 18:54:15 GMT

Our story began in April 2013, when our youngest son Kirill was born into the world. My pregnancy went very well, with only one exception. My older son got sick, and after we visited the children’s clinic, everybody in our family caught a very bad virus - including myself. For two weeks I had an extremely high fever and was generally feeling unwell for more than a month. At my final ultrasound, the doctors detected some placental insufficiency, but at that time they felt it was nothing to worry about. At my regular OB/GYN examination on April 29th, I was told that my baby was doing very well. My doctor suggested that I visit the day hospital for an additional check-up. But, due to a national holiday, the hospital moved the scheduled appointment to May 13! The next day I was scheduled for a routine blood test, fetal monitoring and a check-up at the day hospital. But unfortunately, fate had other plans for us!

On April 30 at six in the morning, my water broke and 3 hours later our tiny little Kirill took his first breath. His arrival came so fast - we didn’t fully comprehend what had happened. Kirill was born at 32 weeks- he was 8 weeks premature and weighed only 4.5 lbs. And he started to cry. His Apgar rating at birth was 6/7 points. But due to his lungs being under developed, his condition deteriorated and he was taken straight from the delivery room to intensive care. At that point, an infinitely long 7 days commenced, when my unconscious beautiful little boy underwent artificial lung ventilation and tube feeding. Every day I was told that his condition was extremely serious. Each day the hospital offered to baptize him right there, in the incubator. Every day I would visit him in the intensive care unit and my heart would jump out of my chest as I would look upon him and say: "My sweet, sweet baby boy, just live! Together we can fight anything!” And thankfully my prayers were answered! Kirill lived. However, this ordeal did not leave him unharmed. The doctors diagnosis was: "Your son has suffered brain damage. We cannot make any predictions." They explained the diagnosis: periventricular leukomalacia, grade 3 ischemia, grade 3 intraventricular hemorrhage, hydrocephalus and microcephaly.

My world turned upside down. This was the most frightening thing that had ever happened in my life. I could never imagine that this would happen to with us, and we didn’t know how we were supposed to live our daily lives. How could I help my little bundle of joy? What would we say to our family and friends? The sense of hopelessness, despair and fear of the future was beyond words.

But as I watched my son struggle for life, I realized that I too, had to be strong and do everything I could to help him!

Even though the doctors didn’t have much hope, Kirill seemed to be recovering very well. He was gaining over 2 lbs a month, his head was growing, and that meant that his brain was developing. He learned to hold his head, make baby sounds, and smile. He was even trying to roll over. Considering the initial prognosis, we could not have possibly been happier!

When suddenly we were struck again with another terrible diagnosis - Kirill had developed the worst manifestation of epilepsy - West Syndrome! At 4 months of age, Kirill experienced severe seizures and his improving condition started to deteriorate. His development came to a complete stop. He has now even forgotten how to do the things that he was already capable of doing.

Now our baby is 8 months old, and he cannot sit up or roll over; he is not reaching for toys. He started smiling less, he cannot keep his head up as well as he did previously, and he doesn’t react to sounds. We then received even more troubling diagnoses - optic nerve atrophy and partial hip joint dysplasia.

During the past long 8 months we've undergone 6 courses of treatment in a local hospital, all with minimal positive results. We have applied for treatment for Kirill in Moscow, but at the time of this writing, it has been more than 3 months, and much to our dismay, we have not been invited by any federal hospital. Local doctors in Voronezh have already done as much as they can do to the best of their ability and we’re thankful for their kindness. However, the treatment that was prescribed to us, unfortunately has not helped, and our time is running out. Every day takes us further away from our dream of seeing Kirill walk, talk and lead a normal life! Time is the most precious thing with these types of serious conditions.

I found a few foreign specialists who can help us; Professor Olivier Dulac, President of the Scientific Council of the French Foundation for Research on Epilepsy - a neuropediatrician cares for patients in his neuropediatrical office in the Necker Hospital (Paris). His patients are epileptic children who are not only from France, but from all over the world. He has agreed to see Kirill for consultation and a detailed outpatient examination. In addition, I have sent out inquiries to several major German centers for the treatment of epilepsy and have received an invitation for a comprehensive review and individualized anticonvulsant therapy at one of the centers. However, the estimates of the cost of treatment from these clinics are impossibly high for our family. We are an ordinary Russian family who lives by very simple means and have no real savings. My husband works hard when work is available, but does not have a current place of regular employment, and my children’s allowance from the Russian government only pays for our most basic needs.

The first year of life is the most important and most promising in terms of recovery when dealing with these illnesses. We hold the belief that the ability for a child’s brain to recover and grow are as endless as the universe. If only the right methods are employed. Kirill’s brain continues to grow and develop even with the impairments he’s suffered. But we need to help him! We need the help of caring individuals around the world!

We love our baby and believe that there is still hope for him! And our older son Andrew loves him so much! He so eagerly waited for his brother! Now he will not leave Kirill, even for a minute. He kisses him, brings him his favorite toys, keeps holding his hand and waits for his brother to do the same in return. We very much hope that Andrew and all of us will soon see the first cognitive smile, hear the first word and witness the first steps of our beautiful baby Kirill!

We sincerely believe and hope that there will be people who will understand and help support us! Thank you very much for your help and donations, and for taking the time to read Kirill’s story....so far!

Please help our dreams come true!

How to help, details

Milana — Sat, 25 Jan 2014 18:55:48 GMT

If you wish to help Kirill, please see the requisites:

Western Union/ MoneyGram

BATISHCHEVA EKATERINA, Voronezh, Russia

Cell phone:

+7 (952) 100 50 90

E-mail: laqueen.2003@mail.ru

You can send the following information to the e-mail or as an SMS to the phone number:

Ammount, currency, your name, your address (city, country), code.

PayPal

e-mail: KateBatisheva@yandex.ru

Foreign Currency Transfers:

US Dollars

Receiver’s correspondent:

IRVTUS3N

BANK OF NEW YORK

NEW YORK NY USA

Intermediary institution:

SABRRUMM

SBERBANK

(HEAD OFFICE – ALL BRANCHES AND OFFICES IN RUSSIA)

MOSCOW

Account with institution:

SWIFT-code: SABRRUMMVH1

SBERBANK

(TSENTRALNO-CHERNOZEMNY HEAD OFFICE)

VORONEZH

Beneficiary customer:

4081 7840 6130 0000 1204

EKATERINA BATISHCHEVA

Purpose:

For treatment of Batishchev Kirill

EURO

Receiver’s correspondent:

DEUTDEFF

DEUTSCHE BANK AG

FRANKFURT AM MAIN

Intermediary institution:

SABRRUMM

SBERBANK

(HEAD OFFICE – ALL BRANCHES AND OFFICES IN RUSSIA)

MOSCOW

Account with institution:

SWIFT-code: SABRRUMMVH1

SBERBANK

(TSENTRALNO-CHERNOZEMNY HEAD OFFICE)

VORONEZH

Beneficiary customer:

4081 7978 2130 0000 1026

EKATERINA BATISHCHEVA

Purpose:

For treatment of Batishchev Kirill

Kirill in social networks

Milana — Wed, 01 Jan 2014 17:27:33 GMT

Kirill in social networks

Facebook: https://www.facebook.com/groups/191387877735372/

You Caring: http://www.youcaring.com/medical-fundraiser/let-s-give-kirill-a-happy-childhood/135183

VKontakte: http://vk.com/club64402535

Odnoklassniki: http://www.odnoklassniki.ru/kirjushabatishev