Sunday, August 15, 2010

Dear Son Update

I apologize for the long delay between postings. Dear Son is having a rough summer. I haven't commented on it much but he has been having these cluster seizures since mid to late June. Essentially, he has a lot of little seizures in a row that seem relentless. Soon, he starts crying out, I come over and use his Vagus Nerve Stimulator which may or may not stop the seizure, then the process starts all over again in another minute and continues on for some fifteen minutes. It takes a reprieve and then this process repeats itself sometimes many times in a day. It is exhausting for him and exhausting for me. I have contacted Ped Neuro on/off over these past few weeks and he's tweeked some meds but we still don't have great control. Seizure control can be difficult at times because unlike most people with seizures, Dear Son was born without an gaba, a key inhibitory neurotransmitter. Dear Son had a long seizure on Wednesday that was fairly intense so I had to use Diastat (It's an emergency medication that stop seizures.). It lasted for some forty minutes total. I was fairly certain I was going to have to call the paramedics however it did eventually stop.
He had more seizures on Thursday and Friday. On Saturday, I started tracking them in the afternoon and he had a few every hour. Last night, I was up every 1-2 hours and at 4:45 a.m. he was crying out with a bad seizure. I got up, used his VNS a few times, then got his Valproic Acid. Sometimes that helps although it wasn't due until morning. After ten minutes or so the seizure was escalating pretty fast so I ended up using Diastat. I wasn't sure if I was going to have to call the paramedics or not since the seizure was pretty rough. The Diastat stopped the seizure within about 5-6 minutes though. That was the second time in a few days that I thought I might have to call the paramedics so I know that things are not very stable.
At 8:05 a.m., he had more seizures and I gave the rest of his morning meds. Hopefully, the med increase that Ped Neuro Doc made on Friday will help. Dear Son has an appointment with him next week. At that time, they mentioned a newer med that has been working well for patients that they may try.
I'll try to post when I can. At this point, I've been doing pretty much seven day a week care since last December which doesn't leave a whole lot of time for doing much else. School starts at the end of the month and for now, Dear Son will go two half days a week. I doubt he'll ever return to full days of school at this point and the half days will be stretching it.


cyrene said...

I'm a few years behind you... my son is 13, and slowly so many abilities are slipping away... thank you for writing, even though I'm in tears, sometimes I need to let go. And your words scare me, but they make me feel less alone, and less 'crazy'.

I don't know how to express my heartfelt wishes for you and your dear son... much peace and love is all I know to say...

ANewKindOfPerfect said...

I feel so bad reading this. We've only dealt with seizures for a year now, and it is SO emotionally draining. I hate watching Emily seize and being so completely helpless. I am glad the Diastat stopped Dear Son's seizurse and you haven't had to call an ambulance. I hope the med change will help him and the seizures will slow down!

Gloria (The Little Red House with the White Porch) said...

Hi, Dream Mom. I haven't visited you in quite a while. My heart goes out to you. I cannot imagine how tough it is for you. You are a trooper and the best Mom in the whole world. I can only imagine how exhausted you are. I will say a prayer for you, and for Dear Son.
Love and best regards,

Gloria (The Little Red House with the White Porch) said...

Hi, Dream Mom. Well, aren't you just the nicest person. To be going through so much with your son, exhausted taking care of him with his having the seizures this summer, yet you took the time to visit my blog and leave a comment. You are truly an angel and very kind and giving to others, no matter own heartaches. Thank you so much for the comment. I was telling my son about reading your blog the other day, that I hadn't visited in a while and that your son was having a hard time with the seizures (and you were almost on 'empty' emotionally and physically) and I asked him to pray for both "Dear Son" and you. He said he would, he was very touched and humbled when I told him about Dear Son's seizures. He is 19, but he is very spiritual and his prayers are strong! We will both be praying for you and your son and that things get better/things calm down for the rest of the Summer. Anytime you need to talk, please email me if you wish. OK? -- take care, Dream Mom. Love to Dear Son.

Dream Mom said...

Thank you all for your kind words. It makes me feel good that this is helpful to someone.

Gloria-You are so sweet. Thank you for your prayers for Dear Son. Take care.

Kristn Drohan said...

I can't begin to imagine how difficult the seizures must be. You are prety amazing. Dittos on Gloria's comment.

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