Chaitrali Gore

Chaitrali Gore

Cerebral Palsy Children

MRI brain in this child with spastic cerebral palsy showed gross hypoplasia of the body and genu of the corpus callosum; generalized atrophy of the left cerebral hemisphere; ventriculomegaly.  An EEG done showed West Syndrome.  Chaitrali could not hold head or creep or sit at 2 ½ years when she came to Dr. Vasa.

Following is an account of observation made by Chaitrali’s parents over the years while being treated with VASA CONCEPT

Chaitrali Gore before Vasa Concept

Videos

Before - After Video

Videos - After Vasa Concept (playlist)

Photos

With Vasa Concept

Progress Timeline

2010 Nov - Dec

Visible Progress

  • She has started responding very well socially. If someone is trying to play with her, she smiles. She also smiles when her mother enters the room and she notices that.
  • She gets scared by loud noise. Earlier she used to fear too much and immediately started crying while now the intensity has reduced. Now she still gets scared, but doesn’t cry immediately. She was also getting scared of darkness earlier which she has slightly got used to now.
  • She gets excited by her favorite toys or her favorite sounds. She shows her excitement by fast kicking of legs and sometimes making sounds orally.
  • She has started making lot of sounds when there are people around her. The sounds can be called as babbles like ‘boo’, ‘ooh’, ‘aga’, etc.
  • She tries to lift her head when kept on paatala and most of the times is successful in doing so, however she can’t hold it for long. She tries to follow rattles when kept on paatlaa by lifting her head and turning head as the rattle moves.
  • Her urination frequency has increased and stools are regular.
  • Chaitrali has now got used to sounds. Earlier she used to get startled and scared after hearing a loud noise. Some times she used to cry also. Now she doesn’t cry. For some sounds she doesn’t get scared also.
  • Her eating is slowly improving. Earlier she used to spill over lot of food and her bib used to get dirty. Now she doesn’t spit much, and eats her food well.
  • We can feel formation of muscles at some places. Earlier it used to be soft part where now we can feel muscles (chest, biceps, etc.).
  • Sometimes she seems to follow what we are telling her. Like a few times she lifts her hands when we tell her to do so, or she opens her fist when we tell her to do that. Though this is very rare and not every time, it may be that it is happening by fluke; but she has done this 2-3 times in these 10 ten days.
  • Chaitrali tries a lot to sit by her own and hold her head. Even when we are holding her or when she is sitting in bean bag, she tries to do this.
  • She now doesn’t like to be alone or neglected. If we are not playing attention to her, she attracts our attention by making sounds.
  • She has started watching TV, though it is only for few minutes that she looks at the screen, but it is as if she is following what is happening there.
  • She enjoys going out, so she smiles when we put on the diapers and change her clothes for taking her out.
  • She responds to calling her name by immediately looking in that direction.
  • Her eating has improved a lot. She now takes 15-25 min to eat as compared to 45-75 min taken earlier (before starting treatment).
  • When we keep her in prone position, she herself tries to take her feet forward in crawling position. This I felt is a great improvement because till now she has not done any movements by herself.
  • While eating, she opens mouth by herself when I take the spoon near her mouth. Earlier I had to force it open by stimulating it many times.  She knows when I take her for feeding and wants her food immediately. Keeps opening her mouth till the time I feed her.
  • She has started lifting her hand to say bye to some people, though this is very rare.
2011 Jan - June

Visible Progress

  • She has started sitting in both namaaz position and normally with hand support for 5-7 min.
  • Her visual focusing has improved a lot. Earlier she wouldn’t look at the camera ever while clicking photo. Now every time we take camera in front of her, she looks at the camera. We can see this in the video also.
  • She has started holding objects in her hand if we give it in her hands. This is for a small duration (10-15 sec). After that she opens her fingers.
  • She has started making lots of variety of sounds. Also she can now differentiate between hunger and thirst. If she is hungry, she makes chewing noise and if she is thirsty, she keeps taking out her tongue.
  • She has started to show what all she can remember. She knows there is a fly toy on the fridge so she keeps looking there while doing exercise. She can look at her grand-mother, mother if asked where they are.
  • She has started doing doggy to cobra exercise by herself. It is very pleasing as this is the first time she is doing an activity by herself.
  • Her communication has improved a lot. She smiles when she likes something, can express when she is hungry or thirsty and she can also express when she is going to pass motions.
  • She has started holding objects by herself quite a few times. We have hung rattle in front of her bean bag. She catches it sometimes, sometimes my specs/clothes, etc.
  • She can now laugh with small sound and also tries to express by smiling. She can understand when we appreciate her and smiles when we clap for her.
2011 Jul - Dec

Visible Progress

  • She has started to enjoy reading her the story books/ any other type of books. She listens intently when we are reading her a book.
  • She is very attached to her father. When her father came home after long duration (20 days), she wanted all of his attention. When he talks to other people in front of her like his friends, she doesn’t like it and starts screaming. Even if he holds her, she wants him to talk to only her.
  • Chaitrali has tears now when she cries. Earlier she didn’t get tears every time when she cried. But now whenever she cries, she has tears rolling down from her eyes. I thought it is a good sign as this is also considered a developmental milestone.
  • She can now turn back and look at anyone standing behind her. Earlier she used to always get stiff when she tried doing this. Now she can look back without getting stiff.
  • She enjoys when we show her different pictures. She even smiles when we read her ABCD book.
  • Her head holding has improved a lot. Now her head doesn’t fall down so frequently as earlier.
  • She enjoys talking on telephone and makes sound while someone is talking to her. She laughs a lot that time.
  • She now makes sound while laughing. She enjoys her toys and playing now. She understands playing peek-a-boo and laughs.
  • Her eyes have become a lot more expressive. She listens intently when we talk to her and there is an expression of anger when we scold her.
  • The diameter of her neck has increased for the first time. I realized this while tying the bib to feed her.
  • She enjoys watching tv more now. She likes the songs and dances, but the moment the song is finished, and advertisement comes, she gets irritated.
  • Chaitrali has started recognizing people a lot now. She smiles immediately when a known person comes near her like her grandma, mother, my maid, etc. If someone is unknown she will keep looking curiously as to who is this new person.
  • Her gripping has increased. She continuously tries to hold something or the other n when she succeeds, she laughs by looking at the object.
  • Her skin color has slightly changed from yellowish to pinkish.
  • Her head circumference has increased from 38.5cm to 39.5cm.
  • While banging hands on floor on ball, she keeps her hands open mostly, but while touching down she can’t touch the palm of the hand to floor.
  • Chaitrali has started to show liking for taste, music and toys. Only for few songs only she listens carefully. Also when I give her taste of chocolate and then show it again, she smiles. For some toys, she smiles when we show her those toys.
  • She has started smiling when she sees that everyone around her is smiling. She has even started to show her dislike sometimes by pretending to cry / throwing herself back. 
2012 Jan - June

Visible Progress

  • She has started passing gases intermittently.
  • er eating has drastically improved and I have now stopped tying bib while feeding her.
  • Chaitrali can now sit by herself for 30 sec (max) without tying patti to her hands.
  • She now cries with lesser intensity for the fist opening exercise. So we have started doing it 2-3 times a day.
  • She now knows certain things by words like cards, book, food, etc.  She likes certain songs and laughs when that song is played on TV.
  • Her bonding with all of us (mother, father and grandmother) has grown thicker. She now smiles if she sees any of us after long duration. She wants us to give attention to her if this happens.
  • If someone is watching a tv program and not talking to her, she doesn’t like it. She always wants songs to be played on tv and keeps screaming till we put on the songs on tv. She doesn’t let us watch anything else on tv.
  • She now responds to some sounds made by us like when we tell her to look at us, she looks where we are. But this happens only with her mother or father calling, she doesn’t respond to anyone else.
  • She likes to see other cars moving when we take her out. She laughs out loud or makes sound when any car / bike / cycle pass us when we go out for a walk.
  • She likes water related things such as fountain or sprinklers. Earlier she used to not realize this. She also likes when we pour water from bottle to glass or from one glass to the other.
  • For the first time after starting the treatment, Chaitrali slept at someone else’s house when we had not slept. She would require us to sleep with her and lights off. Last Saturday was the first time when she slept at our friend’s home when we were still talking.
  • She has started to respond orally sometimes. When I am talking to her and ask some questions, she tries to respond to them orally by making some sounds.
  • When we ask her if she is feeling sleepy at night, she says yes by closing her eyes for short duration.  If she is not sleepy, she won’t close eyes and smiles instead.
  • She sits in namaj by taking support of her hands without any external support, but after sometime she tries to get up from namaj and go in horse so she falls.
  • Her hand opening has improved. She now keeps her left hand mostly open but right hand still closes at some times.
  • Her head holding has improved slightly. Now while doing most of the exercises, she looks up herself.
  • She can go to sleep alone now in afternoon, but requires we to be near her at night.

Chaitrali Gore 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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