Chaitrali Gore
Chaitrali Gore

Chaitrali's History

Chaitrali was born on 18th Sep. 2008 in Kochi. This was the due date given, so she is a full term baby. When her mother was in labor, The umbilical cord got around the baby’s neck and her heart beats reduced. Doctors took decision of doing an emergency caesarian. After birth, she cried after a few seconds time. Her birth weight was 2.4kgs. She had a band on her scalp showing overlapping of bones, but doctors said that was normal.

However, after 20days of her birth, she was admitted in hospital for drastic loss of weight. Lots of improvements were suggested by doctors and nurses for feeding the baby. Since I was a first time mother, I did not know these things. But even after her feeding became normal, she failed to gain much weight. Her blood tests which included thyroid and other tests were undertaken, but everything was normal. So the doctors gave her nutritional supplement namely HMF sachets. After we started giving that, she started to gain weight. As her head circumference increased, the band also disappeared. So we assumed whatever the doctors said was correct. She started turning to her sides and smiling when she was 3 months old. She had also started holding her head slightly. Since she had a weight loss, doctors suggested us to get her eyes and ears checked just as a precaution. But both her VEP and BERA tests were normal.

When she was 5-6 months old, she started startling after getting up from sleep, especially in evening. We thought it was cos she is afraid of something so could not realize the severity. She was still not holding her head fully. Doctors said she is having developmental delay. We thought it will get corrected as she will grow up. But she started startling severely when she was 7 moths old and we thought it’s better to show her to a specialist. We took her to Amrita Institute of Medical Sciences (AIMS) in Kochi. The neonatologist saw her when she was getting startled and told us that these are a type of seizures in babies which is called “Infantile Spasms”. He also told us that her head circumference is very small as compared to normal babies.  This was a shock to us, as till that time we were thinking she is just slow. The neonatologist sent us to a neurologist who in turn asked us to get her MRI and EEG done. The EEG was grossly abnormal and MRI was showing degeneration of brain in some parts. The neurologist prescribed her Sodium Valporate. That was the first time we gave her any medication. After that the seizures reduced but she used to go in this abnormal posturing of turning her head to one side and making her body stiff. We again asked the doctors. The neurologist started one more drug Levetiracetam (Torleva). After that the seizures came down phenomenally and even the abnormal posturing reduced. The doctors suggested to go for physiotherapy after her seizures get reduced. The physiotherapist showed us few exercises of limbs n head which we were to be done at home. Then later on the occupational therapist in AIMS told us that the best treatment for such children is in Mumbai.

 

This all was going on and we kept thinking that may be after her seizures stop, she will be alright. I was still worried about the small head size, but doctors said that babies with small head are normal also. So we kept on thinking that she will improve. We used to search a lot on internet about infantile spasms and microcephaly. The information prepared us for accepting that she is never going to be normal. When she became one year old, she was still not holding her head. She had almost stopped smiling. Her front teeth had come. So I had started giving her semisolid food. She was eating well, but was not gaining much weight. When her father got his next leave in Nov-2009, we got her to Mumbai to Dr. Neeta Naik (Child Epileptologist and Developmental Neurologist). She told us for the first time that she is going to be an abnormal child and she is having West Syndrome. Her EEG was very abnormal and she needed very intensive physiotherapy. After that we decided that chaitrali will stay at Nasik with her mother and grand parents while her father will go alone back to Kochi. Dr. Neeta Naik also suggested that first line of treatment is ACTH, a course of injections for one month. We gave this course to chaitrali while in Nasik. We also searched for a physiotherapist. Though we couldn’t get a pediatric physiotherapist, we could find a neuro-physiotherapist who had given therapy to such children. So we started her therapy, the therapist used to come home every day and teach us different things about her therapy. She started to improve slowly. She also regained her social smile. During this period we had visited Dr. Neeta Naik twice when she had increased two more medicines Topiramate for seizures and Pacitane for the abnormal posturing. However, in Feb-2010, she had severe diarrhea for which she was admitted in hospital for 6 days. She had bed sores and her therapy had to be stopped for almost a month. She also lost ½ kg weight during that time. After that we decided that it will be best if we are staying in Mumbai and her father asked for a transfer to Mumbai. We consulted Dr. Neeta Naik, she said we should wait for two months for the seizures to stop and then start Lonazep. We also realized that her weight gain was still slow and she is an underweight baby. Till now her weight is only 8.35 kg at the age of 2 yrs.

As we shifted to Mumbai, we showed her to naval hospital INHS Ashvini. Again her all tests were done. The MRI was showing degeneration of left part of her brain, while right part was seemingly normal. Her EEG was still abnormal. Since she was getting more teeth, she was getting irritated and her abnormal posturing had increased. This was the first time the doctors told us she is having Cerebral Palsy (CP). We still couldn’t believe it since till that time we were referring her case as Global Developmental Delay. We asked Dr. Neeta Naik if this was correct. She said it is correct indeed. Any damage to the brain during childhood is called CP. After that we could imagine the severity of her problem. We started to search for her therapist when Dr. Neeta Naik suggested us about Spastic Society of India. We started her therapy in Colaba branch of spastic society of India. The therapist there had done a course in neurodevelopmental therapy (NDT). Chaitrali started improving a lot after that. We also tried to give her ayurvedic treatment, but that increased her seizures. We are however continuing with the massage with Ayurvedic oil.

Experience with NDT (Neuro Developmental Therapy):

      Chaitrali improved a lot after giving her NDT at spastic society of India (Colaba Branch). She started responding by smile occasionally, gained better head holding and started lifting her head by herself when in prone position. She also started to get support with hands when she falls forwards in sitting position.

      One very unusual response of her here was about going for therapy. She used to fake sleeping while entering to the school and smile as soon as we come out.

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