Child with Epileptic Encelophalopathy

[J tikari]

I am enclosing a mail re. a 3yrs old girl.
This is possibly vaccine damage as the child was born healthy.
Has anybody any ideas re the case?
Jeff

[J tikari]

Herewith, Soroush.

I am considering Sil
Jeff
-------------------------------------------------------------------------------------------------------------------

Parents:
Prasad (29.04.1967) and Banumathy Prasad (11.12.1972) married in Sep 1997. Age during first child 40 and 36 respectively.
Pregnancy:
1st Ectopic pregnancy - March 1998, within 6 months of marriage. 45 to 50 days of pregnancy. Left tube got ruptured and got operated.
2nd Spontaneous abortion - April 2000. 45 - 50 days of pregnancy. Intercourse before the day of abortion.
3rd IVF (ICSI) - Nov 2007. Very stressed about the procedure. Work pressure also added to it. Became very sentimental. Started taking Sugar free diet. On 4th month got hospitalized for dehydration. Excessive vomit and little blood in the vomit. After a day of taking saline got discharged.
During the first test of GTT test (6th month), got to know that I have developed gestational diabetes. Sugar level were little high, initially tried to control with diet and since it did not come down, was asked to take insulin.
On the 8th month given a steroid shot to prevent premature delivery. But this increased sugar levels (230). After a day of monitoring in the hospital got discharged after the sugar level came down.
Looked forward for a boy baby. Read, listened to boy baby related things. The whole of pregnancy baby was kicking rapidly especially when hearing music or any conversation. Felt the baby kicking in the 4th month itself.
Delivery:
C Section at 34th week. Gynec felt that with insulin not advisable to continue the pregnancy. Very stressed out about getting operated. Didn't wanted it at all. Cried from the day before and until the operation. Injection in the spinal cord for sedation.
First 3 months:
Very unhappy about the girl baby.
After birth, baby cried and she weighed 3.2kgs. Clear eyes. Baby could not feed well. Slight yellowness in the eyes. After a day of showing in the sun, eyes became normal. On the third day, we noticed few very little jerky movements like shivering on the left leg and right hand, on and off. Pediatrician said these were normal and will go away after sometime. This shivering action continued for sometime (may be 15 to 20 days?)
Vaginal bleeding for 2, 3 days and then stopped.
Turned on the 33rd day.
Achieved all her mile stones for her age i.e. tracking, clubbing of hands, little smile, turning over. But she did not get full head control even at 5 months. My mother in law used to comment about her loose muscle tone. Rapid kicking.
Always had constipation. We need assist her to pass motion. Very hard & rounded stools - like goat's. Sometimes with bleeding.
Does not cry much. Breast fed for only 3.5 months. Started on cow's milk. After starting cow's milk only she had bowel movements.
In the end of 3rd month we had to travel out of Chennai. Got cradle cap. After 15 days, when we were about to return she had high fever. She was put on antibiotic and since the fever did not come down, gave her rifile injection. Fever came down. We did an abdominal scan, but there was no infection.
Inflammation of right ear. Got treated with Neosporin ointment.
Next 3 months:
Within a month or two, she again got high fever twice. When she got fever for the third time we did a urine routine and culture test. Infection was found and she was immediately put on basigil. Infection subsided.
By then she was about to complete 5 months. We noticed some jerky movements that she was doing. It was like shivering, startling etc., She used to bring her elbows together towards her face. It used to last for 1 to 2 seconds. Within 5 days she was doing these movements for couple of times in a day. On the 5th day, she had a Sroper seizure, her eyes rolled over and she was fitting badly. We rushed her to one of the leading hospitals of Chennai. She was admitted for monitoring. Within couple of hours, she was normal without any medicines, though IV line was put for emergency purpose. She was there in the hospital for 3 days, getting those jerks. But Doctors could not actually see them. Because it lasted for very few seconds. EEG, CT Scan and other blood tests showed normal. So, they discharged us and recommended us to meet a Neurologist.
She was on sporidex for urinary infection, when she had seizure. Just a week before the seizure she gave shrill cry for no reason.
We met him and he said this is called Myoclonic jerks and nothing to worry. These will go away gradually. But my daugther was getting more and more jerks day by day. Next week again met him and he asked us to do a Video EEG. In that there were abnormalities and she was put on ACTH 0.4ml immediately. ACTH was administered for 9days on a daily basis.
Immediately after starting ACTH we did MRI and Metabolic test to see any inborn erroer. Except for some deficiency in G6PD everything was normal. For a second opinion we did G6PD test in another lab, which showed normal.
After 9 days of ACTH, there was not much improvement, Doctor asked us to taper the medicine and stop it. In the mean time, he started different medicine i.e. Sodium Valporate, Lamtec, Benadon and Frisium.
After 7 months of treatment, Jerks got controlled a little, but didn't become zero.
After starting a medicine called Vigabatrin, she actually responding well. Her neck control was better. Trying to look around. Alertness also got better. Teeth came at the age of one. Hypsyrythmia disappeared.
On the alternative medicine side, we tried Homeopath in Bangalore. He gave medicines. For the first 4 days she was active and on the 5th day onwards, she started getting more jerks. When we asked him about this, he said it was because she was having milk and asked us to stop immediately. But she was then 7 months only and that was her only food. Anyway we stopped those medicines immediately. From that time onwards we gradually stopped her milk intake and introduced Dhal rice and soya milk. We did not give her any milk based foods (curd, buttermilk, butter), wheat based foods (roti, biscuits) and sugar.
Vaccination:
BCG / Polio / Hep B - on the first day of birth

DTPa / Polio / Hep B / Hib - at 6th week

DTPa/ Polio / Hep B / Hib - at 10th week

Hep B - at 25th week

Measles - at 36th week
She developed fits around 12th week. We continued giving her vaccines. But after we started getting doubts on vaccines, stopped vaccinating her.
Medicines used:
ACTH

Sodium Valporate

Lametec

Frisium

Benadon

Topomac

Wyosolone

Vigabatrin

Lonazep

Keppra

Omnacartil

Predone
Current condition:
Turned 3 last September. She somehow balances her head. Trunk is better. Legs are arching. Sits in her special chair with belt. Vision is better after stopping Vigabatrin. Watches TV. But no tracking. Has myopia. Irritation level has come down. Cognition level is better. Enjoys going out. She used to say amma, avva and appa. Now that is absent. Only when she cries loudly, says amma. When she is in her best of moods opens mouth as if saying something. Babbles sometimes.
Most of her teeth are decayed. Especially the front four are completely eroded.
No restriction in food. Eats very slowly - 1 hour for each meal. Difficulty in drinking liquids. Vomit (especially through nose) for almost every meal. Sometime makes a sound like scrapping the throat. Sensitive in the tip of her tongue. Touching the tip also triggers cough and then vomit.
Chill in extremities. Uses mostly her left hand instead of right.
Pushes her head to the back. Keeps her wrists like bird's wings.
Diagnosed as Epileptic encephalopathy by an Epileptologist. As per last MRI in 2010, has mild cerebellar atrophy.
Akshaya as a person:
Very calm. Sensitive skin. Lean, tall & very feminine. Poor eater. Left handed?
Have you visited http://www.jeffspage.com as yet?
Visit it and knock around in there - you'll have a great time

[Soroush Ebrahimi]

Thanks Jeff
I have to work on this in calmness. There are multiple goings on and we need to take great care.
One point of note - please for sake patient confidentiality NEVER give name and family details which could lead to identification.
Rgds

Soroush
From: minutus@yahoogroups.com [mailto:minutus@yahoogroups.com] On Behalf Of J tikari
Sent: 25 January 2011 13:55
To: minutus@yahoogroups.com
Subject: Re: [Minutus] Fw: Child with Epileptic Encelophalopathy
Herewith, Soroush.

I am considering Sil
Jeff
-------------------------------------------------------------------------------------------------------------------

Parents:
Prasad (29.04.1967) and Banumathy Prasad (11.12.1972) married in Sep 1997. Age during first child 40 and 36 respectively.
Pregnancy:
1st Ectopic pregnancy – March 1998, within 6 months of marriage. 45 to 50 days of pregnancy. Left tube got ruptured and got operated.
2nd Spontaneous abortion – April 2000. 45 – 50 days of pregnancy. Intercourse before the day of abortion.
3rd IVF (ICSI) – Nov 2007. Very stressed about the procedure. Work pressure also added to it. Became very sentimental. Started taking Sugar free diet. On 4th month got hospitalized for dehydration. Excessive vomit and little blood in the vomit. After a day of taking saline got discharged.
During the first test of GTT test (6th month), got to know that I have developed gestational diabetes. Sugar level were little high, initially tried to control with diet and since it did not come down, was asked to take insulin.
On the 8th month given a steroid shot to prevent premature delivery. But this increased sugar levels (230). After a day of monitoring in the hospital got discharged after the sugar level came down.
Looked forward for a boy baby. Read, listened to boy baby related things. The whole of pregnancy baby was kicking rapidly especially when hearing music or any conversation. Felt the baby kicking in the 4th month itself.
Delivery:
C Section at 34th week. Gynec felt that with insulin not advisable to continue the pregnancy. Very stressed out about getting operated. Didn’t wanted it at all. Cried from the day before and until the operation. Injection in the spinal cord for sedation.
First 3 months:
Very unhappy about the girl baby.
After birth, baby cried and she weighed 3.2kgs. Clear eyes. Baby could not feed well. Slight yellowness in the eyes. After a day of showing in the sun, eyes became normal. On the third day, we noticed few very little jerky movements like shivering on the left leg and right hand, on and off. Pediatrician said these were normal and will go away after sometime. This shivering action continued for sometime (may be 15 to 20 days?)
Vaginal bleeding for 2, 3 days and then stopped.
Turned on the 33rd day.
Achieved all her mile stones for her age i.e. tracking, clubbing of hands, little smile, turning over. But she did not get full head control even at 5 months. My mother in law used to comment about her loose muscle tone. Rapid kicking.
Always had constipation. We need assist her to pass motion. Very hard & rounded stools – like goat’s. Sometimes with bleeding.
Does not cry much. Breast fed for only 3.5 months. Started on cow’s milk. After starting cow’s milk only she had bowel movements.
In the end of 3rd month we had to travel out of Chennai. Got cradle cap. After 15 days, when we were about to return she had high fever. She was put on antibiotic and since the fever did not come down, gave her rifile injection. Fever came down. We did an abdominal scan, but there was no infection.
Inflammation of right ear. Got treated with Neosporin ointment.
Next 3 months:
Within a month or two, she again got high fever twice. When she got fever for the third time we did a urine routine and culture test. Infection was found and she was immediately put on basigil. Infection subsided.
By then she was about to complete 5 months. We noticed some jerky movements that she was doing. It was like shivering, startling etc., She used to bring her elbows together towards her face. It used to last for 1 to 2 seconds. Within 5 days she was doing these movements for couple of times in a day. On the 5th day, she had a Sroper seizure, her eyes rolled over and she was fitting badly. We rushed her to one of the leading hospitals of Chennai. She was admitted for monitoring. Within couple of hours, she was normal without any medicines, though IV line was put for emergency purpose. She was there in the hospital for 3 days, getting those jerks. But Doctors could not actually see them. Because it lasted for very few seconds. EEG, CT Scan and other blood tests showed normal. So, they discharged us and recommended us to meet a Neurologist.
She was on sporidex for urinary infection, when she had seizure. Just a week before the seizure she gave shrill cry for no reason.
We met him and he said this is called Myoclonic jerks and nothing to worry. These will go away gradually. But my daugther was getting more and more jerks day by day. Next week again met him and he asked us to do a Video EEG. In that there were abnormalities and she was put on ACTH 0.4ml immediately. ACTH was administered for 9days on a daily basis.
Immediately after starting ACTH we did MRI and Metabolic test to see any inborn erroer. Except for some deficiency in G6PD everything was normal. For a second opinion we did G6PD test in another lab, which showed normal.
After 9 days of ACTH, there was not much improvement, Doctor asked us to taper the medicine and stop it. In the mean time, he started different medicine i.e. Sodium Valporate, Lamtec, Benadon and Frisium.
After 7 months of treatment, Jerks got controlled a little, but didn’t become zero.
After starting a medicine called Vigabatrin, she actually responding well. Her neck control was better. Trying to look around. Alertness also got better. Teeth came at the age of one. Hypsyrythmia disappeared.
On the alternative medicine side, we tried Homeopath in Bangalore. He gave medicines. For the first 4 days she was active and on the 5th day onwards, she started getting more jerks. When we asked him about this, he said it was because she was having milk and asked us to stop immediately. But she was then 7 months only and that was her only food. Anyway we stopped those medicines immediately. From that time onwards we gradually stopped her milk intake and introduced Dhal rice and soya milk. We did not give her any milk based foods (curd, buttermilk, butter), wheat based foods (roti, biscuits) and sugar.
Vaccination:
BCG / Polio / Hep B - on the first day of birth

DTPa / Polio / Hep B / Hib - at 6th week

DTPa/ Polio / Hep B / Hib - at 10th week

Hep B - at 25th week

Measles - at 36th week
She developed fits around 12th week. We continued giving her vaccines. But after we started getting doubts on vaccines, stopped vaccinating her.
Medicines used:
ACTH

Sodium Valporate

Lametec

Frisium

Benadon

Topomac

Wyosolone

Vigabatrin

Lonazep

Keppra

Omnacartil

Predone
Current condition:
Turned 3 last September. She somehow balances her head. Trunk is better. Legs are arching. Sits in her special chair with belt. Vision is better after stopping Vigabatrin. Watches TV. But no tracking. Has myopia. Irritation level has come down. Cognition level is better. Enjoys going out. She used to say amma, avva and appa. Now that is absent. Only when she cries loudly, says amma. When she is in her best of moods opens mouth as if saying something. Babbles sometimes.
Most of her teeth are decayed. Especially the front four are completely eroded.
No restriction in food. Eats very slowly – 1 hour for each meal. Difficulty in drinking liquids. Vomit (especially through nose) for almost every meal. Sometime makes a sound like scrapping the throat. Sensitive in the tip of her tongue. Touching the tip also triggers cough and then vomit.
Chill in extremities. Uses mostly her left hand instead of right.
Pushes her head to the back. Keeps her wrists like bird’s wings.
Diagnosed as Epileptic encephalopathy by an Epileptologist. As per last MRI in 2010, has mild cerebellar atrophy.
Akshaya as a person:
Very calm. Sensitive skin. Lean, tall & very feminine. Poor eater. Left handed?

Have you visited http://www.jeffspage.com as yet?
Visit it and knock around in there - you'll have a great time

[J tikari]

I have the family's permission to do this
Jeff
Have you visited http://www.jeffspage.com as yet?
Visit it and knock around in there - you'll have a great time