Diagnosis: cryptogenic epilepsy, dyspraxia, ataxia, coenzyme Q10 deficiency
Date of birth: 13.02.2020
м. Polonne, Khmelnytskyi region
We are publishing the story on behalf of Kostya’s mother, as it is told by her and best conveys the story of her life and struggle for her son.
“I am a single mother raising three children: a daughter and two sons. Kostya is the youngest in the family.
The pregnancy was going well: the tests were always normal, ultrasounds, screenings – everything was perfect. But I went through a lot during delivery. On the date appointed by the doctor, I arrived at the maternity hospital, where they began to stimulate labor, as I had a surgical intervention before this pregnancy (a scar after a cyst rupture) and the doctor did not allow me to carry on. After 13 hours of stimulation, labor began and lasted only 19 minutes.
I was glad to hear: “Congratulations! You have a boy weighing 3 kg 100 grams, 52 cm. Everything is fine. A little blue, but it will pass. This happens when you have quick labor.” In the very first days doctors used magnesia for my son to prevent a high probability of brain swelling. We were discharged from the hospital on the 3rd day.
At home, everything seemed to be quiet and calm, but I was concerned not to hear my son cry as a baby. In the hospital, the pediatrician reassured me: “All children are different. Yours is so calm.” But this answer did not satisfy me. That’s where it all started: the first neurosonography and the conclusion that the child was healthy, just calm. Kostya grew up, I tried to play with him, but there was no reaction… The pediatrician’s conclusion: deafness and blindness are possible. A new general health checkup in the region is the answer: “Everything is fine. Don’t worry.”
In June, Kostya has his first epileptic seizure and spends 3 days in the intensive care unit… Time passed – his first teeth… A febrile seizure occurs and the doctor says again: “It happens.” In July, the seizure happened again… September – regional intensive care for 3 days, neurology department, examination by all specialists, MRI – the conclusion: the brain is healthy. Then the first EEG (encephalogram of the brain). The diagnosis: severe epilepsy without specification. On the doctor’s recommendation, Kostya started taking Neuroxon (because he was already behind in development) and Depakine (in case of a second seizure). Unfortunately, only with time I learned that Neuroxone only stimulated latent epilepsy.
The seizures continued once a month. The body’s reaction to viruses – an attack, teeth – an attack… It seemed to me that there was no end to the seizures. In January, our family doctor called me to talk. I don’t remember how I left her office, I only remember her words: “Don’t cry and don’t be afraid, he should get a disability.” I categorically refused to accept this verdict, with hysteria, shouting “why?!” Then again, resuscitation and a trip to the region to establish the child’s disability. I repeated it to myself like a mantra: “This is to leave us alone. My son is not disabled. This is temporary. I will find a cure.” Next, a trip to Lviv for a geneticist’s examination and prescription of new medications. The doctor’s diagnosis is not genetically confirmed. The decision to try something, and maybe something will work! Then there was Zhytomyr, Vinnytsia and again a diagnosis of epilepsy for some unknown reason, changing medications and dosages over the phone, and resuscitation once a month and a half! An attempt to undergo rehabilitation ended in intensive care in the region. Conclusion: physical rehabilitation without remission of epilepsy is impossible. Then, on the advice of friends, we found an osteopath and after undergoing of 60 sessions (without PEP techniques, seizures invariably occurred) son has made progress in his development: Kostya began to hold his head, learned to chew, focus his eyes, play for a short time!
On February 24, 2022, the war broke out… I decided to go to Poland to protect my children. And also in the hope that Kostya would be helped there, because nothing can stop a mother when it comes to her children.
During the 7 months of my stay, I had a lot of examinations: EEG, geneticist, neurologists, change of medications and dosage, rehabilitation specialists. Constant hospitalization – no changes – the decision to return home. Upon arrival, a new consultation with a Ukrainian neurologist-epileptologist. The diagnosis is completely different: cryptogenic epilepsy, dyspraxia, ataxia, coenzyme Q10 deficiency. Again, the treatment was changed, plus every 2 hours he had a meal (only dairy and gluten-free products). A little time passed and Kostya sat up on his own. Epileptic seizures continue, but with a longer interval (once every 2 months).
Every day I continue to fight for better health of my son and turn to new specialists. In total, there were 7 epileptologists and 4 neurologists in 2 years.
Unfortunately, this is not all the trials that have befallen me and my children. Somewhere between worrying about the child, I lost understanding with my husband, he completely accepted that Kostya was special and did not want to change anything. As a result, we went our separate ways before Kostya’s first birthday. Sometimes we talked, he helped a little, but after I left for a foreign country, communication came to a standstill, because in his opinion, I stole the children and left for a better life.”
The Foundation provides monthly assistance: PEP and other medications with a medical certificate, diapers, pays for rehabilitation courses at the Step by Step Physical Rehabilitation Center, and psychological assistance, because even when they are far away from each other, the foundation’s team is in touch every day. Tetiana also knows that she has the support of a friendly circle of mothers whose children are participants in the “Happiness for Every Family” project!
By helping others, we become better ourselves, we change the world!
Please read more stories about other children on our website in the Stories section.
For more information, please call +38 0 66 7000 177 or e-mail web@kids2kids-fund.com.
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