About the last update

3 years ago while reading reports of a hospital stay EEG report LGS was mentioned. At the time we knew that he was having more than Infantile Spasms he was 2 years old at the time. They added Topomax which is used also used for IS. After a few more hospital stays we never saw LGS on any reports. His seizures were always written up Generalized seizures secondary to IS.
The bigger and older he got we could see that he wasn't having as many IS seizures but there were others popping up. The head drops were for a while the worst ones. To be honest we gave up counting how many he was having as he was having soo many while he was awake. We put him on the Keto diet and by the 3rd day on the diet he was down to having about 9. That was scary we were counting them again. Thankfully the diet worked in controlling the head drops. Like the IS we now only see the head drops when he is getting sick but not that many.
Always in the back of my mind LGS was there. He has tonic seizures, tonic-clonic seizures, laughing spells, seizures in which he loses his ability to swallow, seizures in which he either goes blue or he lets out this God awful shout and he is not breathing. The latest ones are normally the crying spells during the night in which he has some tonic extensions but they are usually only on one side of his body but are over in less than 2 mins.
Banzel was started and it is an approved drug for LGS in children 4 years and older. So during the last hospital stay when I kind of lost it over the when he would be having his MRI not to worry he had one done during his admission. I saw the doctor coming out from the MRI suite and we had a little chat and I just asked " would you say he has LGS?"The answer was "oh yes".
I just told them that I wanted it to be documented that he has LGS.
Getting a diagnoses of LGS was and still isn't a great one. But with the new strides in medication all we can do is hope.
The whole key with any type of seizures is control but each child is different in how their body metabolises the medications, how their bodies systems handles the medications. So what may work in certain doses in 4 children might not work on say my child. Any control is better than watching your child have seizures. So we have gotten control over 2 types of seizures we just have to see what combination of meds will lessen the effects the others he is having . Do I think my son will ever be seizure free? I don't think so. We did have a time where we had almost 2 weeks of no seizures but that was before the LGS started to come out in force. IT was a nice time but at the same time we were watching and waiting for the bubble to burst and when it did we had a m...... f.....of seizures. At times I wondered if I was doing the right thing basically shoving meds into him. Our Finnian will more than likely have the mind of a 12-18 mth old but the new meds being approved we still have time for hope.