Wa alaikum assalam. First, please know that the love and dedication shown for this little one is truly evident, and navigating this is incredibly hard. While specific medical advice can't be given here, some important points can be shared to help guide conversations with the care team.
The symptoms described — prolonged Show Full Answer
Wa alaikum assalam. First, please know that the love and dedication shown for this little one is truly evident, and navigating this is incredibly hard. While specific medical advice can't be given here, some important points can be shared to help guide conversations with the care team.
The symptoms described — prolonged seizure-like episodes, myoclonic jerks, motor regression, and shortness of breath — are serious and need urgent specialist attention. The breathing changes especially should be flagged to the neurologist right away.
Regarding the ketogenic diet, 25g of fat seems very low for a child of this age and weight. A proper ketogenic diet for epilepsy typically requires a much higher fat ratio. It's worth asking the neurologist or a dietitian whether the current diet is actually at the correct therapeutic ratio, as an incorrectly implemented ketogenic diet won't be effective. Since this is a drug-resistant epileptic encephalopathy, here are some important steps to discuss with the medical team:
- Request an urgent review of the ketogenic diet ratios with a specialist dietitian experienced in epilepsy
- Ask about additional ASM options — when two medications haven't worked, specialists may consider other combinations
- Ask for a referral to a specialist epilepsy center if not already there — these centers have more experience with complex, drug-resistant cases and can offer more treatment options faster
- Discuss VNS (Vagus Nerve Stimulation) as a possible option, which has shown benefit in some drug-resistant epilepsy cases
- Request physical, occupational, and speech therapy to support the motor regression being experienced
The motor decline (not walking, poor grip, unable to sit) is deeply concerning and early intervention therapies are strongly recommended alongside seizure management. As one MyEpilepsyTeam member shared after 32 years with drug-resistant epilepsy — treatment is often a process of trial and adjustment. It can take time, but specialist centers can help find the right combination faster.
Please do not wait — contact the neurologist today about the breathing symptoms especially. This child deserves the most specialized care available. 💙
June 8
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