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Seziures

My daughter of 1 year of age has the history of neonatal seziures.
when she was 7th day baby, she had an jerk and doctor prescribed the Gardinal 30Mg (phenobarbitone tablets i.p) for three months, she was fine till 7 months.
Later in the seventh month she had a high fever as well got the seziures back (she used to bend her neck front as well her both arms) . Then doctor examined with EEG and blood report, came to conclusion as MYOCLONIC seziures and prescribed VALPARIN 200(sodium valproate oral solution i.p) , B Long (yridoxine sustained release tablets) and B-complex with vitamin c syrup called Becosules.
she was fine and normal had two or three jerks,then as a routine check up in the 11th month, doctor prescribed to continue with the VALPARIN and NORMA BRAIN (2-pyrrolidone Acetamide Syrup) as new one instead of Blong and becosules.
Until 11 and half month is was fine then suddenly she started to get the seziures continously for 10 to 20 times a day..(she use to lift her left shoulder and use to bend her neck front for 2 to 3 sec).
Now she is of 12 months old, doctor has told not to use NORMABRAIN  and to continue with the Valprin,Blong and becosules as the earlier one.
i would like to know what has been the cause is this because of change in the syrup of Norma brain.
As well is there any permanent cure for this. can u please suggest..

Thanking you,

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Avatar universal
Hi,
How is your daughter doing now?
I think she has been given revised dose of same medicine.
Permanent solution for intractable seizures is surgery.
Vagus nerve stimulation also causes decrease in frequency of seizures.
You need to discuss with your neurologist for best possible option for your child.
Hope this helps.
Bye.
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Avatar universal
she is doing fine now. once in a day she gets jerks. she is recovering.
thanx for your suggestions.
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Avatar universal
Hi,
Please keep me informed about any further developments.
Bye.
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Avatar universal
daughter is fine now, still she is recovering.. but iam going for a second opinion.
after that i will futher inform the developments.

Thanking you,
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Avatar universal
I feel bad to tell that my daughter again started to get the severe jerks on 14th to till today..
She gets around 10 times per day. Again we did video EEG which says mildly abnormal with general seizures, We tested her for MRI but the result has come good normal.
Neurologist has perscribed the injection ACTH , valparin, Topamac. as well saying that valparin is not working for her.
I heard from physician that three are around 35 types myclonic seziures..Its hard to find the exact one. Is this true.
As well is ACTH injection is harmful for her development. Pls. Advice.....
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Avatar universal
Hi Ravikanth,
I feel sorry to hear that she is getting those episodes again.
What is the type of seizures she is getting now? What is the type of jerk's that she is getting? Video EEG suggesting that she has abnormal rhythm with generalized seizures suggests that we need to revise her anti-epileptics. It’s good that her MRI is normal suggesting that she does not have any structural abnormality.
Myoclonic epilepsies include a heterogeneous group of conditions with multiple causes and variable outcomes.
At least five distinct sub-groupings have been identified; these represent the broad spectrum of Myoclonic epilepsies in pediatric population.
Adreno-corticotropic hormone suppresses the metabolism and secretion of Corticotrophin-releasing hormone by a feedback mechanism. CRH is responsible for brain hyper excitability.
Prednisone is equally effective in controlling infantile spasm.
The response to medication is usually apparent within a few weeks of therapy, but one third of patients who respond suffer a relapse when ACTH or prednisone is discontinued.
What regimen of ACTH the doctor has prescribed?
Keep me informed.
Bye.
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Avatar universal
The type of seizures she showing is the only upperlimbs gerky moments, (both the shoulders moves upwards and the neck little bends down) for 2  seconds, then releases the limbs to normal, again it reaccures, this will happen for 2 to 3 times, no loss of conciousness, some times only left shoulder moves upward, as well sometimes without any jerks her lips moves towards one side, and some times she blinks her eyes continously..These are the symptoms which happens only when she is awake. As well when she is tensed (anxiety).

ACTH - acton prolongation coricotrophin carboxymethyl celluslose inj. Bpc ' 73 is the dosage of 40 units for
10 days OD (daily between 8am to 10am), after 10 days of dosage need to give for
alternative days of 2 weeks, then
once in 3 days for 2 weeks, then
once in 5 days continues.. and the other drug is the TOPAMAC - Topiramate Tablets which is going to increase day by day like half tablet for 2 weeks then one tablet for 2 weeks, with this we r still giving VALPRAIN.

Can i send u the softcopy of VIDEO EEG. If Possible you can check and advice...pl.?
thanking you,
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Avatar universal
Hi Ravi,
I think what we usually start of with is 20U/day of ACTH for 2 weeks and if no response occurs, the dosage is increased to 30 and then to 40U/day IM for an additional 4 weeks. Unless seizure is control is complete, ACTH is replaced with oral prednisone. The dosage pattern for which varies.
I think you can discuss with your neurologist regarding this.
I thought of diagnosis your child as having Benign Myoclonus of Infancy but your child's EEG report suggested some generalized disorder.
Do you have any other child? Does the child have same symptoms? Anybody in the family had similar kind of episodes in their life? Any relatives are suffering from same disorder?
Your marriage you told was non-consanguineous.
I don't think I would be able to read Video EEG.
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Avatar universal
In the first EEG  around 7 months the conclusion came as EEG is mildly abnormal, findings suggests bilateral post. But now in the 14th month Video EEG conclusion as EEG is mildly abnormal and the findings suggest generalised seizures.
Still physician not able to find what type of siezures.

ACTH 40 units is prescribed because she was getting 10 to 15 jerks in a day which may damage her brain.
She is our first child, There is no other relatives from my side or my wife's side has any kind of seizures or any neurological disorders, We are seeing these things first time.
Yes marriage is of non-consanguineous.
Is there any other consultants or diagonsis institute where they can study the EEG report,
which will be helpful for us to find what type of seizure is.
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Avatar universal
hi

In the first EEG  around 7 months the conclusion came as EEG is mildly abnormal, findings suggests bilateral post. But now in the 14th month Video EEG conclusion as EEG is mildly abnormal and the findings suggest generalised seizures .
Still physician not able to find what type of siezures.

ACTH 40 units is prescribed because she was getting 10 to 15 jerks in a day which may damage her brain .
She is our first child , There is no other relatives from my side or my wife's side has any kind of seizures or any neurological disorders , We are seeing these things first time.
Yes marriage is of non-consanguineous.
Is there any other consultants or diagonsis institute where they can study the EEG report,
which will be helpful for us to find what type of seizure is.
Helpful - 0
Avatar universal
Hi,
I was searching for your mail from so many days. How is your daughter doing? What is her name?
Have the jerky movements come down?
Which part of world you belong to? Your name suggests that you are posting from India.
Where have been showing your child so far? What is the name of neurologist who is seeing your child?
How are her symptoms now? Is she growing well?
ACTH should help her in getting her symptoms down. If the symptoms are not coming than we need to add the child on prednisone.
We follow a certain regimen while prescribing prednisone. You need to ask your doctor regarding this.
Tell Hi to your daughter.
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Avatar universal
thanx for your reply.

She is fine had 7th dose not having any jerks for god sake. hope my daughter RACHITA continues with good health. Yes iam from india staying as well. Name of the neuroligists is Suresh Rao Aroor.
He has done M.B.B.,D.c.h, MD, (paed.) D.M.(Neuro), fellowship in pediatric neurology (usa).
For the first dose itself she has recovered. She is growing well.
Iam worried about her development as well side affects,since we are giving some many medicines.
TIll now there is no delay in development.
Hope everthing will go well.'
thanking you,
Helpful - 0
Avatar universal
Hi Rachita, How are you feeling?
I think ACTH is working for her. This also suggests that her diagnosis being Myoclonic Seizure.
If you want her to be re-evaluated or want her video EEG to be reviewed, you can consult this American Board Certified Pediatric Neurologist at Manipal Hospital, Bangalore, India. Dr.Taranath Shetty is his name.
I think she would be fine and would grow well.

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Avatar universal
She is doing fine.
thanx for your suggestions, i would certainly meet Dr.Taranath Shetty,
Today she got one jerk at 10am even after 8th dose at 9 am, but we are hoping it will stop.
As well i went National Institute of mental health and neuro sciences (Nimhans), for her evaluation of video EEG, They are saying she has generalised seizures as well.
I feel she has complex seizures, But i would like to know what is generalised seizures? what would her prognasis?... pls. can u explain..
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Avatar universal
I forgot to explain the seizure which had in the morning,
She just twisted her left hand backward and held firmly for 2 sec and again after 4sec she lifted her left shoulder (lift limbs) upwards for 2sec.
as well is generalised seizure comes in the group of myoclonic?..  
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Avatar universal
Hi,
How is Rachita?
What episodes you are describing suggests that Rachita indeed has seizures.
Seizures can be focal or generalized. Focal seizures suggests that only part of body is involved  during seizures like right half or left half or only right leg or left arm.
A generalized seizure suggests that all her limbs are involved during the episode and more than one side of body is involved.
What she has is myoclonic spasm with seizure.
Her anti-epileptics should be continued like Topomac and Valparin. It would be a nice idea to consult another neurophysician and take a call from there.
I hope and pray best for Rachita.
Bye.
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Avatar universal
i would like to know when will the seizures controlled totally. we have already given 11 dose of Acth but still she gets one or two seizures in the day time as well she gets jerks in the night while sleeping.But all the seizures area mild compared to the earlier one before the dosage of acth.
pl. advice.
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Avatar universal
Hi Ravi,
Did you meet the doctor at Manipal Hospital?
I think the episodes are getting lesser and lesser day after day. This should subside over a period of time. You should not confuse seizure with Myoclonic episodes.
What she might be having is Myoclonus and not seizure. Episode of Myoclonus will come down gradually.
If the Myoclonic episodes still continue, then you should be seeing Rachita's neurologist back.
He would be adding Prednisone.
How is she and how is her health in general?
Bye.
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Avatar universal
hi,
No i still haven;t gone to manipal hospital. i will be soon meeting Dr taranath shetty, since i had already went to nimhans for second opnion , i was waiting for the results, They did again EEG yesterday and said that she will over come as her development is normal and to continue the medication as prescribed earlier.
Also iam not able to make out the difference between myoclonus and the seizures. can u pls. expalin?. Today she just moved her upper limb (lift shoulder) slowly towards head for 4 to 5 times, which is more compare to previous days.
We have started to give topomac dosage for two times/day from today onwards. she was feeling droziness in morning. some time she will get annoyed.
she is fine as for health in general.
I will wait for another two days and visit the neurologists.
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Avatar universal
Hi,
How is Rachita doing?
Myoclonus means twitching of a muscle or group of muscles. Something like a clonic spasm.
A seizure is a paroxysmal event due to abnormal, excessive, hyper-synchronous discharges from an aggregate of CNS neurons.
Is she on phenobarbitone?
Phenobarbitone causes excessive drowsiness and hyperactivity in children.
Keep me informed about any latest developments.
I have changed my screen name.
Bye.
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Avatar universal
Thanx for your explanation
she is doing fine, had 4 myoclonus....
she is not on phenobarbitone..
She is on topomac, valprain, Acth,...
As we started to give topomac dosage for two times/day from yesterday onwards. she was feeling droziness in morning.
I will sure update on developments..
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Avatar universal
she still recovering 2 to 3 myclonus/ day. went to our neurologist for the suggestion, he said wait until topmac comes in full dosage, we will wait for another 10days and check her,
But i need to ask one thing that some times while in the sleep she just vibrates her whole body for a sec, in the night she might do like this for 3 to 4 times, Don;t whether this is jerk or what?.....
Iam little worried.. Pls. advice.
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Avatar universal
Sounds like infantile spasms- is she delayed at all or have any other neurological symptoms? Go to youtube.com and look for videos showing kids while they are having these spasms.
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Avatar universal
Did you meet with Dr. Taranath Shetty. My child is also having infantile spasms and is on Sabril . What is he saying about ur child.
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