Saturday, July 30, 2016

This is what Logan does everyday, takes a nap. Over the past 6 months Logan has been having more seizures and more trips to the hospital. During his last trip to the Hospital they did blood work to check his valproic acid levels and they told me they are low and we need to follow up with the doctor. We saw Dr. Maller 3 weeks ago and she said we are going to increase his Depakene, I said he is already on a high dose and all he does is sleep and have behavior problems. There has to be a drug that will help him and not make him sleep all day?!?  Then she said joking "you can't have both" This drug is not working anymore and I don't want him to be a zombie. She said let's try Zonegran the major side effect is kidney stones and decrease in appetite so make sure you give him lots of water.

So I began titrating him down on his Depakene and Carnitor. She said we will check his blood in 3 months because we might have to increase his Lamictal.
Depakene and Lamictal taken together can cause a reaction so we had to lower his dose of  Lamictal.

Well we never got to that point of checking his blood because the first day he started taking Zonegran he was taking naps everyday again. He started out taking one tab at night then 2 weeks later he got to his full dose of 2 tabs at night (200 mg) along with Lamictal 150 mg at night and 100 mg in the morning, Depakene is 200 mg 3 times a day and Carnitor is 300 mg 3 times a day.
I called the office Thursday and said all Logan wants to do is sleep, I don't want him feeling tired and having no energy all day. (this was also one of the side effects) There has to be something else he can take. I also told her that when I increased his dose to 2 tabs at night I noticed the next day he started having problems with his speech, Stuttering, having a hard time thinking of the next word to say. You could see the frustration in his eyes. It just broke my heart. He has had this happen before so not sure if it was the medication or just a coincidence.

The assistant calls me back on Friday and tells me, Dr. Maller said to wean him off of the Zonegran, take one pill at night for one week then stop it and we will see him on his scheduled appointment on September 15th. I said are you serious??? Dr. Maller is ok with him being on a very low dose of meds?!? You need to see him now I am not going to be spending the next month in a half in and out of hospitals because Logan is having seizures. You need to fit him in. I was pissed. I am at the point where I am just fed up.  So because I pushed the issue we will see her on Monday.

Logan has Left Temporal Lobe, Complex Partial, Absence and Tonic-Clonic Seizures. As he gets older his seizures are changing. Sometimes he has Convulsive Status Epilepticus (Seizure lasting longer than 30 min.)

I got on line and started googling. I found that Children's Hospital in Los Angeles is rated top 10 in Pediatric Neurology so I found a Doctor and left a message on Friday.

I just want him to have a little bit of Normalcy.....