Cerebral palsy, now what?

Cerebral palsy (hereinafter - CP), a diagnosis that is incredibly difficult to hear. But life will not stop because of this, so you need to move forward!

On this website, I share all my experience and knowledge that I have gathered over time. After hearing the diagnosis, the first question is what next? Don't give up and move forward!

Unfortunately, our health care institutions do not have a common, centralized, concentrated center with advice on this topic. A family doctor, surgeons or other specialists will give excellent advice on their part, but is that enough, we boldly say no from our experience.

In Lithuania, help for those with paralysis has only just begun, then you need to collect it yourself from parents, social groups, medical institutions, specialists, lectures and other sources. The United States of America, England, Malta, Germany, Slovakia, Poland, the dissemination of information and specialized centers in this area are more advanced than Lithuania.

2018

Atas birth was long-awaited and a very painful diagnosis. Atas was born by extra Caesarean section at exactly 40 weeks, after missing fetal movements. After birth, nothing was suspected, like a normal newborn. After noticing the first signs (at about 5 months, he started crawling only on his right side), we had to visit the polyclinic that was caring for Atos several times and knock on the doors of doctors' offices. Attending exercises, which did not bring any results. While earlier, as his first birthday approached, we were referred to the Santariškės Child Development Center (hereinafter - CDC). There we made an interesting diagnosis - left-sided hemiplegic cerebral palsy. At that time, we knew nothing about this disease. We relied on the advice of CDC specialists, which were aimed at really effective exercises, and occupational therapy. At that time, Atos' disability was officially confirmed.

Alternately with the VRC, early development classes are assigned (40 days per year), we visited the Santariškės Children's Physical Medicine and Rehabilitation Center located at that address. We are grateful to the head of the Children's Outpatient Department of this center - Romualdas Sinkevičius. An attentive and kind rehabilitation specialist who gave Atus many professional insights and prescribed useful and necessary procedures for Atas to get stronger.

2021-2022

Covid period. Everything closed, rehabilitation became difficult to access, we tried to attend private classes with a physiotherapist for a while. During this period, the progression of Ato disease was very noticeable. My son began to no longer be able to put the heel of his left foot on the ground, the foot was turning more and more inward. His hand was also shrinking more and more. I had to try Botulinum injections into the calf at the Santariškės Children's Neurology Department, but they did not give results or they were very short-lived. Unfortunately, at that time, botulinum was not allowed in the hand, so we do not know what the effect would be.

The Covid period and rare Ato rehabilitations made us understand what kind of disease CP is, that relaxing and not working with a child is simply unacceptable. Every day that passes without exercise is painfully expensive, the growing organism does not have time to grow and stretch in its weak areas, but only shrinks. The work put in earlier no longer makes sense, so consistency and daily muscle stretching are very important.

After botulinum, we visited the Palangos Gintaro sanatorium. It left a very good impression, it's great that all the rooms are separate for families. Of course, there were also disappointing things, such as large flows of residents, lack of specialists, little time for exercise, running from one procedure to another, which was very tiring. However, here we learned about a spinal operation that removes spasticity in the legs - Selective Dorsal Rhizotomy (hereinafter - SDR). When we started to take a closer look, we learned that it can be done not only in the USA, but also in Santariškės. At that time, neurosurgeons Prof. Saulius Ročka and Ramūnas Raugalas began to perform SDR.

In May 2022, Atus underwent a 6-hour SDR operation. We thank the team of doctors for their professionalism. This operation helped Atus walk more or less equally with both legs. The heel dropped, the spasticity decreased or even disappeared altogether. SDR even minimally affected my left hand, my wrist became loose.

After SDR, intensive rehabilitation was required, which we continued not only in Santariškės, but also tried the WALK THIS WAY sports club for children with disabilities established in Malta. We liked the intensive 2-hour daily exercise there, as well as the good weather and warm sea, so we have visited and will visit there more than once. WTW centers are also located in London and the USA.

2019-2020

After a rather long crawl, Atas starts to walk independently at the age of 1.5 years. According to the current recommendations, he fits into the norm. Walking is not stable, he often falls, his left hand is bent and clenched into a fist. We continue to alternately attend procedures in Santariškės and Antakalnis polyclinics. This creates almost continuous daily rehabilitation.

Since, according to the child’s diagnosis, we are entitled to 2 times a year of sanatorium treatment, we choose Abromiškės children’s sanatorium for the first time. We are satisfied with the services provided.

2023

A year after the SDR, we noticed that the left leg started to turn inward again, the obvious limp returned, and the hand got much worse. We wanted to help Atus somehow help his muscles "survive" the growth spurts again. RC refused to accept Atus for rehabilitation, citing that they only accept children up to 5 years old. The aforementioned physiotherapists working in Malta suggested that we look into the SPML (Selective percuntaneous myofascial lentghening) operation. During it, the muscle coverings are punctured in a minimally invasive way, thus stretching the bound limbs.

Although another operation was not what we wanted for our child, we saw that there was no other option and began to wonder about its possibilities in Lithuania. A very similar operation is performed in Santariškės called Myofasciotomy. Unfortunately, it is a much more invasive operation, after which a long healing process awaits. Moreover, it is performed on the leg by an orthopedic traumatologist, Dr. Giedrius Bernotavičius. Unfortunately, for the hand, we received an answer at that time that there were no doctors who performed the operation. After looking abroad, we found the closest and cheapest offer in terms of price from Dr. Bernius, who works in Munich, Germany. We heard positive reviews about the work he has done in this area. So we decided to try to do SPML for both the hand and the leg under one anesthesia in Germany.

In August 2023, Ata underwent SPML surgery. We are currently happy with its results. His left hand is much freer, the lifting amplitude is greater, and the heel of his foot fully reaches the ground. We thank those who contributed to this surgery and donated.

Currently, Ata exercises every day, attends occupational therapy 2 times a week. We are trying to maintain the SPML effect as long as possible. Since this operation is repeated, we would like it to be needed soon :)

You can find more information about the coming year and all our activities in the articles!