19-04-2025
THIS IS AN ONLINE E LOG BOOK TO DISCUSS OUR PATIENT'S DE-IDENTIFIED HEALTH DATA SHARED AFTER TAKING HER GUARDIAN'S SIGNED INFORMED CONSENT. HERE WE DISCUSS OUR PATIENT'S PROBLEMS THROUGH SERIES OF INPUTS FROM AVAILABLE GLOBAL ONLINE COMMUNITY EXPERTS WITH AN AIM TO SOLVE THOSE PATIENT'S CLINICAL PROBLEMS WITH COLLECTIVE CURRENT BEST EVIDENCE BASED INPUTS.
[20-04-2025 11:16] PA: Seeking advice on behalf of the child patient. Her parents want to know the next course of treatment here. Is it advisable if they stop the medication now as they are unsure of the same and let them know how to stop. Is it like not taking dose from a certain days? And what precautions can be taken in case of further epilepsy occurences.
The treating doctor had advised to keep medistat nasal spray 5mg/ml (3 puff in both nose ) for any SOS/emergency. Will this be same now as well.
[20-04-2025 11:30] PPM 1: Thanks. Yes we are processing the very well presented data you have shared with us and will get back to address your "ask" asap
[20-04-2025 11.35] PA: ENT Dr prescription and reports
[20-04-2025 13:43] PPM 1: Thanks for sharing that very well written patient narrative with us and I must say we are really impressed by your writing skills.
I wish all our patient advocates could do such a good job of representing their patient's problem requirements as well as you have. One of our team member may get in touch with you on telephone when mutually free to address your patient's parental concerns and try to get to the root cause of her issues but before that here are some quick thoughts shared below with some evidence.
It's understandable that the parents want to stop levetiracitam due to it's palpably strong causal association between her behavioural issues especially as there's not much known about it's usage in children below 16 years and till 2016 it's usage below that age group was unknown. More about it here:
https://pmc.ncbi.nlm.nih.gov/articles/PMC4773020/
However the current ask is how do we stop it? Do we stop it abruptly and get ready to face any oncoming fresh seizure attacks with intranasal sos benzodiazepines? What is the scientific evidence to suggest that withdrawing the drug slowly by down titrating the dose will work better than stopping it abruptly? Text books may suggest that gradual dose reduction of the medicine should take place over 3–6 months because abrupt withdrawal may cause status epilepticus (level 5 evidence). Some consultant paediatricians may withdrawl therapy when appropriate over 6–8 weeks. There is a paucity of published randomised controlled trials on this subject. The seizure recurrence rate in children in one study was 40%, which is in the range of seizure recurrence rates (11–41%) seen in children but on the higher side. The conclusion from two studies was that the duration of taper may not matter much and Seizures may recur depending on the underlying root cause of the seizures that in this particular child is perhaps uncertain. More about it here:
https://www.indianpediatrics.net/view-article.php?issue=14432
In case the parents decide to stop the child's anti epileptic drugs it's extremely important that you inform your local doctor about it because if the child goes into status epilepticus she will need to be admitted locally asap for further management.
[20-04-2025 13:55] PPM 1: Can you also share all the images of the MRI after meticulously removing all the identifiers as well as all the images of the EEG also after removing all the identifiers there?
[20-04-2025 19:29] PA: MRI plates
[20-04-2025 20:15] PPM 1: Thanks for these very useful images
[20-04-2025 22:01] PA: Thank you sir for such a detailed response. It helps to clear out many doubts.
[20-04-2025 22.15] PA: Right ulna shaft fracture image 5th May 24
[21-04-2025 06.59] PPM 1: Thanks.
[02-05-2025 15:47] PPM 3: CHIEF COMPLAINT: Query into stopping current antiepileptic medication.
HISTORY OF PRESENTING ILLNESS:
N/K/C/O
On 23rd March 2023, the patient was apparently normal during the morning. Suddenly, she started staring off into the distance, and when spoken to or questioned, she did not respond properly, and was making strange incomprehensible sounds. Her left hand was shaking uncontrollably, and her left eye was twitching, and she was awake throughout this entire period. This was not preceded by a change in smell, taste, visual disturbances, sudden fear, or any tingling or numbness.
She was taken to the hospital, where she was given medication, then fell asleep and woke up 4-5 hours later, seemingly completely normal. She has been on antiepileptic medication since then.
Two to three weeks prior to this, she had a viral fever, associated with body pains.
PAST HISTORY:
N/K/C/O DM, HTN, TB, Asthma, CAD, CVA, thyroid disorders.
Two years ago, she used to suffer with frequent earaches, which were often followed by fever (almost two episodes every month). These episodes were sometimes associated with runny nose and not associated with headaches.
Upon visiting an ENT doctor, a diagnosis of adenoid hypertrophy was made which was then treated with medication, and the frequency of her earaches and fever has come down since then.
Last year (around September 2024), she had a fever and blocked nose, for which she took nasal drops (Nasoclear) which lead to her developing earache so she stopped taking those drops.
She had a fracture of her right hand in May 2024 while jumping from one sofa to the other.
She is vaccinated up to date.
Upon taking yearly influenza vaccines, she was falling sick, so she stopped taking those.
BIRTH HISTORY:
Term baby, LSCS (indication: mother and doctor preferred it).
Mother had regular iron and folic acid supplementation, and also an iron infusion during pregnancy, and received both TT doses.
Birth weight 3.2 kg, normal head size.
Cried immediately after birth.
No other relevant birth history.
FAMILY HISTORY:
No history of seizures in immediate family.
History of uncontrollable bouts of anger in mother.
No other relevant family history.
PERSONAL HISTORY:
The patient is an introverted child, who is quite shy, with one to two friends (parents attribute this also to the fact that she is younger than almost all her peers in school). She likes to engage in challenging activities but gets bored very easily. She doesn’t like doing things if they aren’t challenging.
Her new interests include singing and dancing.
She doesn’t like eating very much and often needs to be distracted by mobile or TV to eat, however, this is gradually improving.
She likes going to school and has good performance there.
Sometimes, she has uncontrollable bouts of anger where she ends up pulling at her clothes, and it is very difficult to calm her down. Attender gives history of similar anger issues on mother’s side.
• Mixed diet
• Normal appetite (always consumed less food)
• Adequate sleep
• Normal bowel and bladder (used to have problems with bowel at around 3 years of age where she had poor bowel control and wouldn’t tell people about accidents, but she has improved and is normal now).
CURRENT ISSUES NOTICED BY THE PARENTS REGARDING MEDICATION:
The parents feel like her memory has decreased: for instance, before starting the medication, she would be able to remember and recite poems at the age of 2.5 years itself. However, now her memory has become a little more volatile, where she ends up forgetting by around 2-3 weeks and needs to be reminded once again.
They are also worried about potential long term side effects of the medication.
As far as possible, they wouldn’t want to subject the child to a sleep EEG investigation as it is quite inconvenient for her.
[02-05-2025 16:17] PPM 1: Well written 👏
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