just a vent | Autism PDD

Sending you a mega mega mega hug !!!

Hang in there Emerald! I know I've told you about friends of ours who went through this. Their son also had surgery, and at 16 he just got his drivers license.

I hope things get better soon.

thanks all....the sugery word has been mentioned a few times...it just SCARES THE CRAP OUT OF ME!!!!

I know it has been done a lot, but I just hate to even think about it...I want to help Mason but I honestly don't know how I would act if that is what they said was our next step...the neuro did say if we were going to do it she would like it done by the time he turns 8...maybe I have a couple more years to get used to this idea...but again, she did tell me that usually you can tell if meds are going to work or not, because once you have failed 3 meds your odds of meds working are like less than 1%....we are now failing our 4th med that we had some success with previously! Not to mention the numerous meds that just never worked to begin with. I HATE SEIZURES!!!!

Maybe Fred and WiMom, you could ask your friends for some advice for a Mom who feels lost and scared to death?

edited: I only know one family who's little boy is the same age as Mason--he also has autism...anyway, he had the surgery and it failed...so I don't get too many good points on the surgery aspect from her...not that I blame her, but it doesn't help ease my mind at all! Hi Niki,

I am so sorry all this is going on. I hate seizures, they are so scary and
the whole medicine balancing act stinks. I really feel for you & will keep
y'all in my thoughts. I hope they can find a medicine, and the side effects
won't affect Mason as much. Our dd is on Trileptal--one of the 'easier'
meds as far as side effects, I remember you saying Mason used to be on
that. Thankfully, dd hasn't had a seizure recently, if they start back up we
are adding on a new med or switching altogether. I really fear any of
that. Seizures are so tricky, you can go a while without them & then bam,
they smack you upside the head. If you feel like a 2nd opinion is
warranted, then go that route. I really will pray a new med will do the
trick. As for the surgery, I do know two families whose daughters (both
w/ Rett Syndrome) did great following it, it really helped them
tremendously. You're in my thoughts...

[QUOTE=emerald_521]

thanks all....the sugery word has been mentioned a few times...it just SCARES THE CRAP OUT OF ME!!!!

Maybe Fred and WiMom, you could ask your friends for some advice for a Mom who feels lost and scared to death?

[/QUOTE]

emerald - I'll see if I can get some information for you. Their daughter does not have autism, btw - but her seizures were progressive. She had lost mobility on one half of her body and was at risk of death and/or incapicitation and it was getting worse and worse. It was a radical surgery and not really elective (from what I understand, they took her off all her meds in an inpatient setting and just let her seize all the time, and mapped out the parts of the brain that were causing the problems, and actually removed some of it or something) - it was horrendous, but she's by all accounts recovering. She's lost some functional skills, but I believe that she is cognatively intact.

I don't know how bad Mason is, but this little girls was as bad as it gets, and they had little choice. She's seven years old, btw.

Sorry, emerald - that must be hard. I have an acquaintence from NH who's daughter had a very large problem with seizures and it was very stressful for them, so I've seen how hard this can be (she's recently had surgery, actually, and came out of it rather well, knock on wood - seems to have worked).

Good luck with the new meds, if you change - maybe you should get a second opinion?

I am so sorry he is increasing these...as a nurse I remember how scary it was dealing with seizures no matter how small. I am so sorry, I hope that things get better SOON!

Niki, I am so sorry. It is so frustrating, messing with the meds, trying to figure out what is going on, and handling side effects. Every decision seems to be a tradeoff of some sort.

Just want you to know, I am thinking of you and Mason!

((((Emerald)))) I am sorry that Mason is having a hard time, poor little guy. I hope that they stop soon.

I was starting to feel a little better lately...Mason was struggling a lot during the school year, they finally dx'd him with autism, I didn't like that, but I thought at least now he might get better services. It was just really rough for awhile!

Well I started to feel a little better after school was out...we found a med that seemed to be helping with Mason's agression and behavior, summer was going good.

Well now of course Mason's seizures have started up again...we were having a few iscolated episodes at night, were trying to find the right meds with that...but now they are coming during the day too. He has had several over the last few days and actually started over a week ago...nothing big, but that doesn't matter, any seizure is bad...he is prone to having long seizures, his tonic clonic, or convulsing seizures...his first one ever lasted 50 minutes before the doctors could get it to stop. He, fortunately, has not had one of those, yet! I thought maybe it would get better because he wasn't feeling good last week when the seizures started and he is prone to having seizures while he is sick...but he is better and the seizures haven't stopped.

So now his neuro wants to change his meds, and that never goes well...and quite honestly we have tried so many...there aren't many left, that the side effects aren't horrible...like learning delays or speech problems...he has that without the meds, I just can't imagine impeeding that more with meds!

I just feel so lost...why can't my little guy just catch a break??

Sorry, I just needed a little pity party for a minute here...I know this isn't autism related but I just had to get it out...thanks for letting me vent!

emerald_52139276.3447685185

Thanks all!

Fred and WiMom thanks so much, anything you can get advice on would help so much.

We were in for long-term monitoring a few months back and there was a boy in there going on day 20! They were at the time sleep depriving him in hopes to get some seizure activity so they could do mapping in preparation for his surgery! We left 3 days later and that poor boy still had his sign hanging on the door that said he was being sleep deprived!

Now I don't know if it is common to have to spend that long in the hospital to get a mapping but I'm assuming they need to be completely thourough and that it probably isn't all that uncommon...I guess I never asked my friend about the before aspects of surgery...I'm also wondering what kind of recovery time there is with something like this.

Maybe i'm jumping the gun here, but I do know it's been brought up pretty much every appt for the last 2 years, almost like they are preparing us very slowly!?!

I'm going to start doing a little more research into something called the VNS...I know basically it's like a pacemaker for the brain...maybe that could be our next step...but I don't know too much about it right now, and his neuro has never said anything about it to us.

Anyway, thanks again all...we did go all day today with no seizures!

Hang in there!