Alex and Zuzu

My son playing with his sisters baby parrotlet. Alex is 10 and has landau kleffner syndrome.

Category:

Pets & Animals

Tags:

• parrot
• parrotlet
• bird
• landau-kleffner
• gravette
• arkansas

[tolli16angel]

Such a sweet boy... he is an inspiration to all of us!!

[Batznblkcatz]

Thanks, I appreciate that. He is a great boy :)

[dccombs601]

My son has LKS too and is 11. We went through several anti-convulsant meds. Only had one IVIG though, because of cost. Do you feel like the IVIG's truly helped or is it hard to say? If you were like us, we often tried multiple things at once, so it's hard to say which treatment was helping most. Best thing we did was move to WIchita, KS for a communications disorders clinic that utilizes the Association Method. He has made miraculous progress there.

Best Regards!

[Batznblkcatz]

sorry took so long, waiting on a new comp. Yes, I feel the IV's did the best, although steriods were wonderful, but I hated the side effects. wow he was mean and hungry on those. His IV's cost around 160 a gram, 40 grams monthly...if I didn't have insurance, I would hate to see what he would be like now. He is getting a augmentive device within the year, so I'm looking forward to that.

[menewme13]

how did you first realise your son had lks. what kind of seizures does he have with lks. did symptoms progress slowly or quickly. please respond.

[Batznblkcatz]

I knew there was something wrong by the age of 2 and a half. He didn't respond "right". It took another two years to get doctors to listen. Then of course, they though autism, pdd, a variety of other diagnosis until he had a nighttime eeg which confirmed LKS. He had every kind of seizure, but mainly the petite mals, which were devastating to his speech. It was all frontal lobe seizures, first the left side, then both sides as the LKS worsened.

[Batznblkcatz]

For six years he had IVIG treatments, which are basically plasma infusions. He went through many rounds of seizure meds, most caused more seizures. He is now off IV treatments, and only has to have ativan and clonidine daily. Lots of speech therapy of course. He has tried, lamictal, depakote, and many others with horrible side effects. I am glad he is done with those. He has also had four steriod treatments, which last six weeks each. We only did those when nothing else would help the seizures.

[rickylopez1611]

how are you treating yoou boy? what medicines have you tried?

[Batznblkcatz]

He has every type of seizure, but mainly the little ones, where he stumbles and blinks. Sometimes those were the worse ones as far as damaging his speech. Symptoms were extremely fast. One day he could say his siblings names, the next it seemed, he just screamed alot. This video is post LKS. I don't think he will ever speak normally, but if you listen to him, you can decypher what he is saying. He kinda has his own language.