10 Kasım 2015 Salı
3 Haziran 2015 Çarşamba
FOR OUR ANGEL ESIN& FOR ALL AICARDI ANGELS
THIS BLOG IS ESPECIALLY FOR MEMORY OF OUR ANGEL
&
FOR ALL AICARDI ANGELS’ FAMILIES
(Unfortunately www.aicardisyndrome.org can not be used any more and new site is not user friendly; most of our story for guidance to other families has also lost.You may find all details about our journey,below)
Esin Kocer
7 April 1997 - ∞
Istanbul/Turkey
Esin
Kocer- 13 years old
ISTANBUL-TURKEY
akocer33@gmail.com
Unfortunately
our angel passed away peacefully in 7 September 2010
because of a lung infection and which returned to sepsis because of
pseudomonas(a fatal bacteria) which was latent in her body (around trakeaostomy
and peg area).Thanks god, our angel didn't feel any pain and anything during
this 1 week ICU(Incentive care unit) term and at the pass away moment…..like an
angel.
Our
feelings and the details of our journey till 4 September 2010, Saturday (3 days
before her pass away),with our angel is below. You may also find our last words
for Esin "in loving memory" area.
OUR LAST WORDS FOR OUR ANGEL,ESIN
(4 Sep 2010-
3 Days Before our angel’s passed away)
For
our Angel, beautiful princess, our silent world Esin...
Dear
Esin,
Our
lovely daughter...From your birth to now on, we tried to do the best for you
and give all our love to you. Your understanding the love and showing your love
with your screams which are impossible now, or your little smile that we can’t
see any more were great. Now your eyes and sometimes waving your hands or your
reactions are enough my beautiful angel. I can’t tell the greatness of my love,
you made us special, feel to live and look at the life from a very different
view, you gave us happiness of living with the virtue of a very different
goodness. Thank you for everything my lovely baby.
My
beauty Esin the only thing we can’t and couldn’t bear was your suffering. We
can’t tell our sadness and feelings when you have difficulty in
breathing-dispne&apne-, suffer from the infections, helpless and full of
pain lookings during invasive operations such as catheter implantation, your
trouble moments while being taken blood.
We
just try not to think what’s gonna happen but live just for your happiness and
quality of your life.
My
beautiful angel;
Your
brother Akin, your perfect mother and I love you very much.
God
bless you and may the best be all with you...
ESIN’S
FATHER
Alper
Kocer
4
September 2010 (3 Days Before our angel’s passed away)
OUR STORY WITH OUR LOVELY ANGEL
FOR US AICARDI SYNDROME WAS BORN ON 7
APRIL 1997!...
Our
daughter Esin was born on 7th of April in 1997, is our first child. My wife and
I are healthy people and have no relation between each other. My wife's
pregnancy was so normal. (She only had a genital infection and seen staph at
the 7th month of her pregnancy. We didn't use any systemic antibiotics.) She
didn't use any drugs except for antacids, a local antifungal agent and
paracetamol between the 6th-8th month. Esin was delivered by caesarean section
at 36,5 weeks of gestation because hydrocephalus was suspected from the results
of ultrasonography. Her birth weight was 2.650 kg. and head circumference 33.6
cm. After birth in Hacettepe University Hospital,MRI revealed mostly agenesis
of the corpus callosum, heterotopic gray matter, dilatation of the occipital
horns of the lateral ventricles, some cystic formations that probably
corresponded to arachnoid cysts in interhemispheric fissure. Abnormal
ophthalmological findings included chorioretinal lacunae. At first her EEG was
good but after 3 months it had got worse.
Unfortunately
year by year we had different difficulties such as lung infections, missing
physical abilities because of seizures, respiratory problems,disformation of
chain and palate, terrible teeth pains and problems, hospitilizations,
swallowing problems AND PEG operation, terrible Intensive Care Unit(ICU)terms,
scoliosis,terrible side affects of Amicasin and at last Trakeostomy!
My
wife Elif, and I completely share(d) all the other families’ feelings. We(have)
aimed to have Esin feel as happy and comfortable as possible whole her life.
Esin
had an healthy brother,Akin. He was born 1st September 2000. Like all of our
family, he loves&used to love Esin very much, kiss her, give her toy to her
hand, talk, but, also he used to say when he was 8 “I wish Esin would be
healthy and be able to play with me” .
Esin
was our beautiful, lovely angel and will always like that. God bless all
Aicardi Angels
THE FIRST SEIZURES AND THE TREATMENT
ATTEMPTS
At
the beginning of our journey
• She had no problems till the 3,5
month except for rare deviation of the eyes.
• At the 3,5 month she had one seizure
in two hours ( 9 or 10 seizures in a day) They appeared as 2 minute seizures
and every seizure appeared nearly 20 convulsion which took 1 or 2 seconds.
• Her psychomotor functions were
completely normal, she has no vertebral malformations and was able to know her
mother.
• Her seizures type was not definite
but said to be partial and myoclonic seizures, but very proggressive.
• At the 3,5 month (20 JULY 1997-Her
weight was 6 kg.) we took her to the Clinic of Paediatric Neurology of
Hacettepe University Hospital because of the seizures. She stayed in the
hospital for 20 days.
• In Hacettepe University Hospital, day
by day number of seizures decreased ( 4 or 5 seizures in a day ) , but in each
seizure the number of the convulsions increased day by day ( 100-150
convulsions ) and naturally each seizure began to take 20-35 minutes.
• Vigabatrin (250mg in a day),
Clonazepam (Rivotril) (3*2 drops) didn’t work and doctors begun ACTH therapy
(0.5mg twice a week) and Vigabatrin was begun to be given 500mg in a day.
Valproic acid (100mg in a day) added on the therapy.
• Her seizures were interactable and
couldn't be controlled completely. We took her home on 9th of August.
• At the 5th month Esin’s treatment was
Valproic acid(Depakin) and Clobazam (Frisium).And then added Carbamazepin for a
short time, but it diddn’t work.(While leaving Clonazepam (Rivotril) and
Vigabatrin (Sabril) Esin had very bad seizures and psychology.)
- TODAY’S
- Treatment, Feeding,
- Seizures
- Respiratory problems, Lung Infections,
- Scoliosis, Teeth Problems,
- Esin’s Abilities and Esin’s Favorites :TODAY’S TREATMENT & FEEDING (..PEG!)---YEAR 2010 --- OUR ANGEL’S LAST YEAROVERVIEWEsin is 13 years old now, and 30 kg.• Since the 1997 September Esin’s treatment was Valproic acid(Depakin) and Clobazam 20mg(Frisium). Ofcourse year by year related to the weight we increased the dose.• Today Esin is taking Valproic acid(Depakin oral solution) 1100mg a day (350/350/400) and Clobazam 20mg(Frisium) 30 mg a day. (½ - ½ - ½)..We use Ventolin nebules (1 nebule a day, divided into 2) and Flixotide nebules 0,5 mg (1 nebule a day, divided into 2) for her bronchial hiperreactivity.• We have an aspirator for getting out her sputum, it was very useful to get the secretion from her mouth after having her coughed. It’s better to make it after the lung phsyotherapy. After trakeostomy operation in June 2009 we're doing it inside of the trakeaostomy canule.• Also we have an oxygen consantrator.Esin is breathing herselfnow(without a machine) but needs oxgyen support permenantly for all day and night from OXYGEN CONSANTRATOR which is connected to her trakeostomy tube by oxgyen canule.• Unfortunately after Esin had PEG(Percutan Endoscopic Gastrostomy) in 2005 and we began feeding her by tube. We had to change her peggie twice in 3 years.SEIZURESShe has 2 to 4 seizures in a day, but her seizures are mostly controlled. 2-3 of them are weak flexor spasms or myoclonic type, one of them is like tonic-clonic and strong. Seizures' time are usually 10 minutes especially at her left arm and left leg.Seizures' durations are usually 10 minutes. We pray God, for her having just one bad spasm in a day.
RESPIRATORY PROBLEMS/ LUNG INFECTIONS AND HOSPITALIZATIONSToday her scolosis prevents her breathing comfortably, but when we give the right position her breathing becomes better. Esin couldn’t breath from her nose (and also never could learn how to breath by nose) so she always takes breath from the mouth. Ofcourse to take the breath form mouth makes her hearth very tired, it makes her mouth very dry, we use creams for her lips.(I was trying to understand how she feels while breathing by trying to breath from my mouth for a while; really it’s very disturbing but once I had to breath only from my mouth all night because I was sick at that time I understood how terrible, terrible and terrible it is for our angel!)Esin has also a narrowed nasal pathway...Chronologicaly, you may find details of respiratory problems/ lung infections and hospitalizations below:1998 – 1,5 years old.Esin had her first pneumoniae in November and stayed in a hospital for a week.2000 – 3 years oldEsin had a respiratory infection again and hospitilized for a week, at the beginning of the year.2002 – 5 years oldEsin had a serious infection that had begun as flue and stayed in a hospital for a week. Her nose was congested and as she put her tongue to her palate(she always used to breath like this.) it became very difficult to breath. She had a crisis something like an asthma attack. She couldn’t breath well for a month. We continued the therapy including oxygen therapy at home.2003-2004 - 6 and 7 years oldEsin had at least one lung infection and hospitalized at least one week.2005 – 8 years old..THE TERRIBLE YEAR!2005 was a terrible year for us and also the miracle year. Esin had a very serious lung infection and her blood values are completely collapsed down, in January. We took her to the hospital but the second day she had taken to the intensive care unit.(ICU)The picture was very bad her respiratory system was being worse day by day and the doctors got her to the mechanical ventilation and entubed her. She stayed like that having the breath with the help of the machines, entubed,slept with anestesia drugs for 15 days.She also had pseudomonas(a fatal bacteria which is usually seen in hospital infections) and sepsis. We stayed totally 2 months in ICU and the miracle happened. God didn't let her go..But our angel wouldn't be able to feel her favorite thing:Having meal ! Because she had problems in her swallowing function doctors had PEG(percutan endoscopic gastrostomy)2006 Esin is 9 years oldIn January we again had a week in ICU. After coming back to home we used very strong injectable and oral antibiotics for 2 months
2007 Esin is 10 years oldWe always treat Esin in her hospitilized room even the pseudomonas infection by getting contact with our doctors. We never go to the hospital because of lung infection, Esin had lung infections twice at the first 6 months of the year and we treated with injectable antibiotics.2008- Esin is 11 years old(DEAR AICARDI FAMILIES BECAREFUL WITH AMICASIN AND PLEASE READ THIS PART CAREFULLY)2007-2008 WHAT A NEW YEAR!!!!At the and of the year Esin had a serious lung infection and we had to go to the hospital due to we couldn’t treat her at home.We used Fortum (seftazidim-very strong inj.antibiotic) and then added amicasin and increased amicasin dose up to 250 mg in a day. (It means almost max. dose) Although 13 days passed this time the combination therapy didn’t work exactly.And the most important thing Esin began to show different suffering reactions as if she was crazy. She was too nervous.(Her teeth are still very big problem because her mouth and chin’s shape was changed year by year, she was having new tooth on a tooth at that time so we thought she was suffering because of her tooth pain.We unfortunately gave also MORPHIN, but it didn’t stop Esin, digging her face and head,screaming, as if because of unbearable itching and pinning feelings.(We only could understand her “pinning feelings” when we read and found the side effect definings) we took her to the hospital and doctors changed her antibiotic but the added on antibiotic was amicasin again and it was used 10 days .)At the hospital our week was terrible again . The only USABLE vein way was become phlebitis( a very bad vein infection, her foot seemed to be burned ) at the first day. And in ICU she had skin scars because laying on “prima” . And she had never opened her eyes for 3 days.31, DECEMBER 2007,WE WERE IN Intensive Care Unit AT 24:00 WITH OUR ANGEL and AT THAT MOMENT SHE OPENED HER EYES FOR A WHILE. THIS WAS OUR “HAPPY NEW YEAR MOMENT”End of the week her infection was passed but the “craziness reactions” digging her face and head, screaming, as if because of unbearable itching and pinning feelings was back again at the 6th day of the hospital. Doctors couldn’t say anything.Finally I found from the literatures and the detailed side effect knowledge only from one internet site that all these reactıons were BECAUSE OF AMICASIN. In its product knowledge these adverse reactions (side affects) are not written, but it writes do not use amicasin more than 5 days. If you have to use amicasin and see such reactions – or also can’t understand your angel’s reactions – think this side affect.We have a summer house in a forest. Esin is going there every summer for 12 years and feels better.Thanks God, she is well enough, but every year and each hospital journey make us look for the year before.2009 – Esin is 12 years old..We had upper respiratory infections which turned to lower respiratory infection 2 times in 2009. We had to have trakeaostomy because of narrowed nasal pathway and because of scoliosis.2010 - Esin is 13 years old4th September---I’m writing these sentences in the hospital..Esin has an infection and 1st of September she has been hospitalized. Unfortunately she is in ICU now,the doctors got her to the mechanical ventilation and she has sepsis.Our silent world, angel Esin is sleeping with a great tiredness and struggle against infection. We try to keep her not to feel any pain.Esin; our beautiful lovely angel, we love you very much. Feel good, live good, God bless you.
SCOLIOSIS• Unfortunately her scoliosis began to appear at 6 years old.• We tried her not to lie down or lean the same side, but everytime she turned her favorite side (right) again.• Last year it wasn’t needed any operation. This summer it seems proggressed.• We had a new chair specially designed for Esin which is seat is made of viscoelastic material.(A special material that weakens the pressure-The Nasa astronots’ beds are made of viscoelastic material)•Unfortunately today (2010-13 years old) Esin's scoliosis is 67 degree which needs to be operated but doctors are not sure that she can bear the operation.Please pray for Esin not to have any pain of scoliosis and prevent breathing a lot.
TEETH PROBLEMSMy wife Elif is really perfect protecting her teeth. Everyday Esin has teeth and beauty care. We have also a nurse-baby sitter for her.• Unfortunately last 3 years she really suffers from her teeth. Her new teeth try to go out by on the other teeth drilling her gingiva because of that her chin and mouth shape have not suitable area.• The dentists say that it’s very very hard and unbearable to solve it by operation, so tehy say she will have this problem 2 years.• We try to stop her pain with the analgezics, but sometimes really she suffers a lot although we use very strong anlgesics.
ABILITIESDuring 13 years we saw such good abilities but unfortunately the serious infections or the sufferings of Esin, prevented us going on the physiotherapy. Because of these heavy conditions her abilities got poor.We must say that 3 ICU (intensive care unit) terms in last 3 years, especially 2005 ICU term made everything worse.• Esin is 13 years old, now.• Her physical development is quite good. 30kg and 140cm tall, now.• Esin cannot sit on her own, but she can sit if she lies somewhere.• She plays with her voiced toys and try to reach out it when we show her toy. (She is able to catch it with her right hand.)• Her observing the objects around is good and meaningful. (These were much better before..)• She knows her mother,father and grandmother, even her brother Akin. When we call her she turns her head to our side.• Her eye contact was much better last year.(We can exactly say that Esin Knows and Feels Her Favorite Medicine: LOVE)• Her legs are not active and weak . She can use only her right arm since she was 1 year old due to the fact that the seizures effected her left arm . So she can’t use her left arm.• Esin hears, but cannot speak. She sees but we don’t know exactly how much she sees.• Esin used to want to dig her eye and head with her fingers when she was a baby.• She used to chew and swallow easily and very well till 8 years old and good enough 9 years old before the PEG which had to be done because of the loss of the swallowing function due to long term mechanical ventilation&entubation in ICU.• Till 4 years old she sometimes used to scream. Till 8 years old she used to smile, give responds especially at her meal times (when she feels the spoon at her lips).• Esin had begun to a special school for physiotherapy in 1999 but it after a while we had to give up physiotherapy for foot because in every attempt -especially for left foot tendon therapy- it caused a bad seizure. (Very difficult to make that choice but there were no way either.)• In 2000 when she was 3 years old, we totally had to leave physiotherapy beacuse her performance and the triggered seziures didn’t let.
TRAKEOSTOMYIn June 2009 we had to go on trakeostomy operation for Esin to have a better breathing. trakeostomy prevented the sufferings from the effort of breathing which is occured because of upper airways narrowing and problems such as flue but didn't work well on the oxygen parameters. Before it in pulse oxymeter screen we used to see averagely 93 with best position, but now even in best position without giving oxygen we just can see 85-86 which is a lower parameter. So Esin is breathing herself(without a machine) but needs oxgyen support permenantly for all day and night from OXGYEN CONSANTRATOR machine.
Esin Loves...• Esin loves being loved!• Esin loves her family.• Esin loves having bath.• Esin loves playing voiced toys.• Esin loves listening to music.• Esin loves watching T.V.• Esin loves(d) the tastes of her meals!ESIN; OUR LOVELY DAUGHTER, WE LOVE YOU VERY MUCH...GOD BLESS ALL AICARDI GIRLS AND GIVE STRENGTH TO ALL OF US....Praying for all of our angels...Lots of love….ESIN’S FATHER & MOTHERAlper and Elif KocerOur e-mail address is : akocer33@gmail.comA special thank to Prof.Aicardi :As an Aicardi Angels' name father, I met with professor Aicardi in a peadiatric neurology congress, in 2007 in Turkey. It was a very different feeling for me. Those moments were spiritualy very valuable for me so I want to thank professor Aicardi for his kindness and interests not only to Esin’s problems, but also to me as an Aicardi Angel Father...
THE DOCTORS WHO HAVE VERY DIFFERENT PLACE IN OUR LIFE AND TAKE CARE OF ESIN AS IF SHE WERE THEIR DAUGHTERMAY THE BEST WITH YOU, IN YOUR LIFE…WITH OUR GREAT APPRECIATION:❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️In chronological order
HACETTEPE UNIVERSITY HOSPITAL ANESTESIOLOGYPROF.ULKU AYPARPROF.OMUR ERCELENPEADIATRIC NEUROLOGISTS (HACETTEPE UNI.)PROF.EMIRE OZDIRIM (FIRST SEIZURES-FIRST TREATMENT)PROF.KALBIYE YALAZPROF.YAVUZ RENDAASS.MUJGAN SONMEZ(NOW PROF)PEADIATRIC NEUROLOGIST (ISTANBUL UNI.)PROF.MERAL OZMENMARMARA UNI. HOSPITAL PEADIATRIC PULMONOLOGISTSPROF.FAZILET KARAKOCPROF.REFIKA HAMUTCUPROF.BULENT KARADAGASS.PROF.SEDA UYANASISTANT OKAN...MARMARA UNI.HOSPITAL PEAD.SURGERYPROF.GURSU KIYANACIBADEM HOSPITAL ICUPROF.NAHIT ÇAKARMD.CEYHUN SOLAKOGLUand their teamMD.ERKAN KAYAMD.KORKUT.ACIBADEM ANESTESIAMD.ALI KIVANCKIZILAY HEALTH CENTER PULMONOLOGISTMD.AYLA CETINALL NURSES IN ICU & 3RD FLOOR & HEALTH EMPLOYEES OF ACIBADEM HOSPITAL,AND HER PRIVATE NURSE ENGIN.WE THANK YOU FOR ALL YOUR SUPPORTS FOR OUR LOVELY GIRL, OUR ANGEL ESIN:(SERPIL,SEMA,CIGDEM,NURDAN,HAYRI,AHMET,MUTTALIP,TUGBA,SEDAT,DERYA,KISMET,OZLEM,AYSUN,BERNA, MERYEM,SEPTIYE, AND ALL THE NAMES….)THANK YOU VERY MUCH...AND ESIN's BABYSITTERS MAYA & GULNAZ WE'RE APPRECIATED FOR YOU, FOR TAKING CARE OF ESIN AS IF SHE WERE YOUR DAUGHTER.❤️ESIN’S FATHER & MOTHERAlper and Elif Kocer
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