Wow! I love this site. I'm not alone.

[family mum]

Hi, I'm Lynne, a brand new member. I was searching for info on medication. alternatives and found you. I've been reading over some of the threads and thinking, " wow, there are others out there who are also holding on by their fingertips just like me." I love how quick you all are to support each other. It's almost like a live conversation. I am an exhausted mum, trying to make my way through the minefield of getting a diagnosis and help for my 14 yr old son. It's taken us 16 months (this time) to get where we are now, with a confirmed diagnosis of AS but no supports in place yet. Our family is subject to meltdowns and almost meltdowns daily, which include verbal and physical attacks and destruction of property by my difficult child. (by the way' what do those letters stand for?) I'm so tired at the moment.

 

[Calamity Jane]

Hello Lynne, welcome.

I'm fairly new, too, and post most often in the Substance Abuse forum. difficult child stands for "gift from God" - if you go to the Site Resources Forum, you'll be able to navigate around and see a list of common abbreviations as well. You can also create an icon for yourself and a signature with some info about your family, like I have below.
Lots of helpful people here, who will be along shortly. Good luck.

 

[DaisyFace]

Hello and welcome!

You are definitely not alone...

"difficult child" stands for "Gift From G-d"....it's our way of describing our challenging children. (You will see many abbreviations underlined in posts - hold your cursor over the letters to see the meaning)

 

[buddy]

HI and welcome! difficult child is gift from God, the board's term for our special/challenging kids.

Nice you are at a place where you feel comfortable with a diagnosis, and yeah, now the hard part....uggg. I am sure it is incomprehensible to others to think you'd be happy with a meltdown only once a week but when you have lived with multiple rages/meltdowns (for me it often includes aggression and swearing) at best once a day, often many times a day and sometimes it can last hours... yeah, once a week would be a blessing.

It can feel so unreal to be in that space.

How is your school responding to this? Insane Cdn, an active member here, is one of our family from Canada and she has explained how it kind of is in her area but it seems it can really vary across Canada (do I understand that right?)....so, just wondering how it is going for you on that front?

Do you have other children? How are they handling it?

Oh, by the way, any term you see that has an underline...you can put your cursor on it and it will give a definition.

Welcome and glad you found us....hope we can get to know you better. I think many of us feel as you do, this place is a life line.

 

[DDD]

Just a quick welcome, Lynne. Sometimes, lol, work interferes with my CD time. So glad you found us and I'm sure you will enjoy being part of the CD family. I'll get back to you later. DDD

 

[Bunny]

Welcome to our little family. You are most definately not alone.

 

[family mum]

Thanks for the explanation of difficult child everyone. I've tried adding a "signature", we'll see if it works. I have 2 other kids, my eldest son is 16 and my daughter is 12. At this point in time, no one is handling it well, least of all my daughter and myself who are his favourite targets. difficult child's school has been pretty good and started offering him resources immediately when I informed them by phone about the AS, even before all the testing was complete. So far He is not very open to their assistance and has refused almost everything offered to him.He does not act out at school at all. His marks are a bit all over the board. He is extremely bright which helps him to get by, but he has executive function issues so homework is a hit or miss thing. Living in Quebec, his studies are divided between French ( language, history, geography, ethics) and English (language, math, science, art and PE), with Spanish (language) thrown into the mix as well since he is in an international program. The frustration of having to communicate and learn in his least favourite courses in French certainly adds a dimension but it cannot be avoided. ( We are a bilingual family, I'm Anglophone, my husband is Francophone, we primarily use English in the home.)

 

[welcometowitsend]

Hello Familymum,
I'm Canadian also. Welcome to the boards but sorry you need to be here. I'm new here as well and have found everyone to be very supportive with lots of good advice and insight.

I hope you find the answers you are looking for and get the help you need.

It sounds like your son is in a great school. My only advice to you would be to start making phone calls and asking questions so you can get as much information as quickly as possible. I found I really had to push the school board and school to put things in place for my easy child daughter (she has Learning Disability (LD)'s). It does sound like your sons school is great but I would do that anyway in case they put up a wall at some point - then you will know your child's rights. I'd also google a local Learning Disability (LD) association in your area. They often have information about support groups, advocates and that kind of thing for parents with kids with Learning Disability (LD)'s as well as AS.

I know in Ontario that once they are 16 years old they can leave home, refuse treatment of any kind, etc.. I'm not sure of the Quebec laws but I would assume they are the same. Anyway, the sooner you can get things into place for your son and get them working for him the sooner he will see the benefits and hopefully buy into the program / medications or whatever it is.

Best wishes to you.

 

[family mum]

Here in Quebec the magic age for consent to treatment is 14, which he will be at the end of May. I have been pushing very hard to get everything in place before then. just this morning he announced that he wasn't going to continue taking his medications. It took a lot of convincing on my part, assuring him that we will look into adjusting medications or changing them but that he could Not just stop them cold turkey. I will be getting on the phone soon to try to reach the hospital for options.

We are on a list for "punctual services" which I learned yesterday means that they must provide help within 90 days of a crisis situation, but that will put us past his birthday. yesterday I also found a local support association and I will go th their next meeting but it is on the first Fri of the month so I have a bit of a wait still.

 

[InsaneCdn]

Who did the diagnosis?
Maybe they can help with locating resources?

 

[family mum]

Our health system being what it is, we ended up having the ADOS and ADI-R tests done by a private psychologist. We have a social worker who's role is to facilitate the various branches of health care, and due to difficult child's previous history with epilepsy, we already have a neurologist who referred us to a psychiatrist who works closely with the neuro dept. He will have neuro-psychiatric. testing done at the hospital next week (by yet again another psychologist). Everything takes a bit longer since we are looking for services in English.

 

[buddy]

when were the last eegs? We thought my son was not having seizures anymore. So, when he was about 5 or 6 we stopped medications. I always wondered about little ones though....just from behavioral things. Tests always showed nothing but some aberrant stuff where he had his brain surgery. I was warned though that puberty can bring them on again.
In third grade he started saying he felt "fake" which now after years of evaluation and other people who have temporal seizures explain to me, is a common symptom in simple seizures and for some in auras for partial complex or full seizures. He has sudden mood switches and much of the time he will have a headache, sometimes then paired with yawning, putting his head down or actually falling asleep. Finally in 6th grade it was discovered he was having simple seizures. It took a three day in-patient evaluation to figure it out though. The fake symptom is associated with left sided temporal lobe seizures and so they had doubted it was anything but psychological/stress but it turned out his seizures started on the right (where he had his surgery) and traveled to the left.

Is there any chance seizures can be contributing to his behaviors?

 

[family mum]

I never rule out any possibilities. His eegs have read clear since 2008, we have weaned him off1 medication in may 2011 and the second in sept 2011. We saw neurologist on Tues and next scan is scheduled for aug. to be sure that he is still seizure free without medications. For years we have "blamed" behaviour on either the effects of the seizures or side effects of medications. Previously the behaviour was more intermittent and followed in waves: a period of a few months without anything then building up in frequency of events and then dropping off again. Now since he is in high school (middle school for you, I think) the frequency and intensity of his meltdowns have escalated beyond reason. The seeming intentionality of his behaviour is fairly new ( year and a half) as is his complete lack of remorse. His meltdowns can blow out in under an hour but he can also get stuck in them for hours on end. In the last month I have had to call the police twice (It is what our case worker told us to do), the most recent being this past Sat. when we were in a crisis form noon to 7 pm. Only the (very patient) police presence in our home for more than an hour and their " promise" to him that if we had to call them back that they would be arranging transport to the hospital, finally broke the cycle for the evening.

 

[Bunny]

I see from your signature that your son takes Risperdone. My son takes that a well. When was the last time his medications were adjusted? Has he had a growth spurt recently? My son has done really well on the Risperdone, but recently he has been having more behavioral issues. We think that it's because of this huge growth spurt that he's had in recent weeks and the dose that he was on was just not enough for him. Just a thought.

 

[family mum]

hi. The risperidone is new since x-mas and we have increased the dose twice to get to its current level of 1.5 mg daily. he 's not a big kid, only about 80 lbs. So far I can't decide if it is helping or not. We had a honeymoon period of a couple of weeks when he first started but it coincided with winter break. Each time we adjusted upward we saw an improvement but then the effect seems to taper off. The teachers, however, have all comment to me about an improved focus since January, and he is much more likely to complete and hand in work now.

 

[TerryJ2]

Hi Lynne, welcome.
So sorry about the explosions and issues.
My son is sometimes better behaved during school break because there isn't as much pressure. However, if I do not have a strict routine, the meltdowns will occur within a cpl of days.
I would keep him on the Risperidone if he is showing more focus at school.
We use clonidine to calm him down. Could you ask the dr about that? We break the pills in half so they're not too strong.

What is his routine when he gets home from school?