DIS Dads disABILITIES Thread

[thheaton]

I am glad I found this thread. One of my sons is PDD-NOS. And he can be a handfull. We were giving him medication that is usually used for ADHD but we had to stop because he was losing weight. He has a hard time focusing on the task at hand and someone (us, teachers, support staff) always has to keep his focus on what he is doing. Sometimes it can get very frustrated with this situation, but then there are times when its all worth it.

Let me stop, cause I feel like I am starting to ramble.

I am still glad I found this thread.

welcome to the thread. feel free to ramble, sometimes it helps.

 

[thheaton]

Great news! Ours was supposed to be today (hence my day at home today), but got moved at the last minute until April 12th. Spoke to his doctor on the phone today and I think we're all set for a strategy to transition to a new school next year. Just need the school to agree ...

It is sad that we have to get our strategy together ahead of time, but if you come unprepared they will run everything they can by you. We have been lucky and haven't had to fight for anything but I'm sure that will change once she hits 5 or 6 yrs old. Good luck on the 12th.

 

[tutter99]

I am glad I found this thread. One of my sons is PDD-NOS. And he can be a handfull. We were giving him medication that is usually used for ADHD but we had to stop because he was losing weight. He has a hard time focusing on the task at hand and someone (us, teachers, support staff) always has to keep his focus on what he is doing. Sometimes it can get very frustrated with this situation, but then there are times when its all worth it.

Let me stop, cause I feel like I am starting to ramble.

I am still glad I found this thread.

Glad you found us too!

 

[tutter99]

Well today was DS's first day on Vyvance, no complaints of headache, stomach ache, and ate all his diner so hopefully he will avoid most of the side effects. There were about a quarter of the comments there are normally on his point sheet from school and he didn't seem to have the issues being argumentative that had been getting worse.

Of course I had to spend 15 minutes on the phone with the owner of the dive center where he takes swimming lessons because his new instructor asked for him to be removed from his class because he is too worked up and not listening. Not that I am making excuses but the other 3 kids in his class are all over the place but know enough to stop themselves when the instructor says so (DS takes a bit longer to calm down).
Luckily the owner is a great guy and after I explained what is going on with DS and that we are trying medication he moved DS to a later class with only one other kid in it who he knows will not get DS worked up.

 

[aggordon2]

Welcome! Glad you found us! Hope things start to get better. Spring is tough for everyone

Thanks for the welcome!

welcome to the thread. feel free to ramble, sometimes it helps.

Sometimes rambling is the only thing that makes me feel better.

Glad you found us too!

Thanks!


Last night I just conked out around 7pm. I did not wake up till about 6am this morning! Does it ever get overwhelming that sleep seems to be the only answer? Well that is what happened to me last night.
Since both boys are moving into middle schools next year, we have been on the grand tour. We have been doing double duty since both of them go to different schools. Our fear is that they (NYC DOE) will place my son in a school that will not work for him and then the fight will start. We have been through this before to get him services and eventhough we know the process involved, we are not looking foward to it.

 

[aggordon2]

Well today was DS's first day on Vyvance, no complaints of headache, stomach ache, and ate all his diner so hopefully he will avoid most of the side effects. There were about a quarter of the comments there are normally on his point sheet from school and he didn't seem to have the issues being argumentative that had been getting worse.

We have tried Vyvance with our son and though he had good results in school, he was not eating as much as he used to. He lost about 5 pounds when we took him off it for a while to get his weight back up.
What dosage is he on right now? Our son started with 20mg, then when up to 30mg, that was when he started losing weight.

 

[tutter99]

We have tried Vyvance with our son and though he had good results in school, he was not eating as much as he used to. He lost about 5 pounds when we took him off it for a while to get his weight back up.
What dosage is he on right now? Our son started with 20mg, then when up to 30mg, that was when he started losing weight.

They started him on 20mg, because his psychologist and his pediatrician decided to drag their feet getting in touch with each other last week, we only got the prescription on Tuesday night and started him yesterday. Today is his last day before Spring Break so we won't get a really good gauge of how it is doing until he is back a few days after the break. We are going to keep him on it over the break just to gt him used to it and any possible side effects.

Lucky for us he is a really good eater, so hopefully he'll keep his weight up.

Did your son have any side effects from it other than the weight loss? Do you think it was his metabolism speeding up from the medication or did he lose his appetite?

 

[NWDAD]

Just found this thread, I have 2 kids with RAD, FAS, ODD and others, alphbet soup. They are both over 18 now and out of the house but I have 12 years experience with schools. So if I can be of any help feel free to ask.

 

[marcgiu]

sorry not been on for a while - hope all are well

Booked a trip over xmas to WDW and DCL - Has anyone been on the DCL with their Autistic Child , if so were there any specific challenges?

 

[DisDadDoc]

sorry not been on for a while - hope all are well

Booked a trip over xmas to WDW and DCL - Has anyone been on the DCL with their Autistic Child , if so were there any specific challenges?

We'd like to, but our son is terrified of the idea of it, so don't know if we'll ever get him there

 

[Urugami]

My son has been on Vyvance for 5 or 6 months now. Started out at 20mg, moved up to 30 after a couple of months, and just started him on 40mg a couple of weeks ago.
It certainly does seem to help him focus and obey a bit more (pity it's mostly when he's not around us ), so in general it's doing a lot of good for him, and letting his teachers see a little of what he can really do, but he's still a struggle most days, especially after it wears off.
We think it's been interfering with his appetite some. He's never really eaten a LOT, so even though he's quite tall for a 6YO, he's skinny. That being said, since he's been on the meds, he hasn't been eating much of his lunch, and dinner is ususally a struggle to get him to eat what we think he should. If we keep at it after he says he's done, we can get him to eat more, so thankfully he's not losing any weight, but personally, I'd like to see some more meat on his bones, if you follow me.

Glad to see this thread here, and hoping I can get and give some help or reassurance.

 

[tutter99]

My son has been on Vyvance for 5 or 6 months now. Started out at 20mg, moved up to 30 after a couple of months, and just started him on 40mg a couple of weeks ago.
It certainly does seem to help him focus and obey a bit more (pity it's mostly when he's not around us ), so in general it's doing a lot of good for him, and letting his teachers see a little of what he can really do, but he's still a struggle most days, especially after it wears off.
We think it's been interfering with his appetite some. He's never really eaten a LOT, so even though he's quite tall for a 6YO, he's skinny. That being said, since he's been on the meds, he hasn't been eating much of his lunch, and dinner is ususally a struggle to get him to eat what we think he should. If we keep at it after he says he's done, we can get him to eat more, so thankfully he's not losing any weight, but personally, I'd like to see some more meat on his bones, if you follow me.

Glad to see this thread here, and hoping I can get and give some help or reassurance.

We started DS on 20mg and it had very little affect, which from what we read is pretty common. Over Spring break they bumped him up to 40mg (so we could use up the 20mg pills we had left. The first week back from Spring Break he had more good days at school than bad. The mornings were good but after lunch it was the same old problems. When we spoke to the pediatrician towards the end of last week and they thought because he eats a ton and still only has a BMI of 10 his metabolism was eating up the medication long before school was over. They decided to bump him up to 50mg and although we were skeptical he did great yesterday, we'll have to see how the rest of the week goes.

He is having stomach pains and is definitely eating less but from what we've read it should taper off by the end of the week.

 

[Urugami]

They decided to bump him up to 50mg and although we were skeptical he did great yesterday, we'll have to see how the rest of the week goes.
He is having stomach pains and is definitely eating less but from what we've read it should taper off by the end of the week.

It's hard to tell with our DS whether it's true or not, but he does say his stomach hurts around dinner time (we give him the meds before school, probably like you do), so we doubt it's from the Vyvance. Personally, I think it's more likely an excuse trying to get out of eating so he can go play with something.

 

[tutter99]

It's hard to tell with our DS whether it's true or not, but he does say his stomach hurts around dinner time (we give him the meds before school, probably like you do), so we doubt it's from the Vyvance. Personally, I think it's more likely an excuse trying to get out of eating so he can go play with something.

If you do a search on vyvance and stomach ache it is pretty common. I kind of had your line of thinking that if he is taking it in the morning it would be worn off by dinner but I think it might be something in the drug causing it not related to the stimulant part. The point I saw on another ADHD board similar to that was that one of the other side effects is insomnia (haven't seen any of that) which wouldn't make sense either if you were giving the pill in the morning.

Have you ever noticed you have a day where it is like the pill was a dud? Yesterday DS had a rough day (not terible, but rough) and the behaviors were like those he had before starting the meds. The weird part was he didn't complain about his stomach and ate like a horse at dinner.

 

[Urugami]

Have you ever noticed you have a day where it is like the pill was a dud?

It's really hard for me to tell, since on weekdays I don't see him until about 5PM, at the earliest. Plus, on weekends, DW is prone to (read: always has) giving him reduced doses. i.e., now that he's on 40mg, he's been getting some of the remaining 20s; before that, we were cutting 30mgs in half and giving him those. So naturally I don't see much of an effect then, and I don't see how that helps his body/brain stabilize into some kind of equilibrium, if that makes sense.