Infantile Spasms Part 3

Francie Khalaf by Francie Khalaf Additional Needs

Francie Khalaf

Francie Khalaf

I am a wife and mother of two children with cerebral palsy. I believe in making lemonade out of lemons

After many trips to the neurologist, a failed attempt at eradicating the seizures with high doses of steroids we are back to trying to control the seizures.

Sawyer’s infantile spasms have grown into epilepsy.

He has very aggressive and prolonged seizures and our angel neurologist has left us in the hands of another really great neurologist.

Sawyer’s seizures now are so hard to detect unless you know what you are looking for.

He simply begins drooling, looks to the left and his right lip and thumb twitch.

The doctors and nurses rely on me to tell them if he is having a seizure which is stress beyond belief.

It all rests on my shoulders whether they administer more meds, give him more IVs or even intubate.

It’s scary but in the moment I remain calm and listen to my gut.

 I am happy to report that Sawyer is thriving more than we ever could have imagined.

He is incredibly smart and speaks with an eye gaze.

He remembers and understands everything and keeps us on our toes with his pranks.

He is working hard on walking. He rolls over both ways and spins himself around by kicking and spinning.

He can get himself all over the room if given enough time.

We do think he will be able to be potty trained at some point since he is very aware of when he is going.

We are feel so incredibly blessed that the nurse that day on the phone said that we should do an EEG just in case.

Infantile spasms can be devastating developmentally for children if they go on too long.

These seizures don’t look like the typical seizures and babies are so uncoordinated with heir movements at first that it is hard to detect but if your child is having repetitive movements, having the unprovoked “drop reflex” or something just doesn’t seem right.

It’s important you go and get an EEG.

Although these spasms are subtle they are an absolute emergency and need to be treated immediately.

Sawyer is a thriving little four year old boy and we don’t like to think of the outcome had we not caught these seizures.

Advocate for your child and ask questions.

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