18 Feb 10

18 Feb 10


The neurologist wanted to speak to me and Dez urgently. So Dez had to take half day leave to rush down to the hospital in the afternoon.

The neurologist explained the reasons why the team think that Charlene super-frowns are indicative of seizures.
To recap, the sequence of events of Charlene's super-frown are:-
1) Turn her head from 1 side to the other
2) Let out a loud cry (may or may not happen)
3) Strain her face so much that it become convoluted
4) Plunge in heart rate (bradycardia), with NO drop in oxygen and respiration
5) Gasp for breath
6) Arch her back
7) Trembling or myoclonic/clonic movements (may or may not happen)
8) Flail her limps (may or may not happen)

Basically,  the neuro team now think that the super-frowns are seizures, primarily because of Pt 7 (which is more pronounced recently). He also sees Pt 1 and 2 as classical symptoms of neonatal seizures. He is unable to explain Pt 4, but thinks that even though there's no drop in oxygen, it is still damaging to Charlene's brain.

This was a change in their last month diagnosis (which the team felt that the super-frowns were due to acid reflux, similiar to the Sandifer Syndrome).

The neurologist is recommending us to add a new anti-convulsant to try to control the seizures.


We do not think that Charlene's super-frowns are seizures. We still think that it is due to acid reflux. But to be fair to the team, Charlene's trembling is more pronounced now.

Initially, Dez suggested that we can "starve" Charlene of milk to see whether the super-frowns go away; if the super-frowns are due to acid reflux, then it should go away when she is not consuming milk. But we decided against it, because the doctors are not keen on starving a baby of milk.

We will probably go ahead with the recommendation for the new medication. If it is not seizures, at least the doctors will be proven wrong. If it is seizures, then at least we are trying to control its impact.

Friends, please pray that Charlene is protected from the super-frowns and/or seizures, and that these episodes will be removed from her life totally. Please pray that the doctors have the wisdom to diagnose the condition correctly. Please pray that Charlene can be declared fit enough to be discharge soon. Finally, please pray that Charlene will learn how to smile at people soon, bec the neurologist deem it as a significant developmental milestone.