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At the end of my rope....

Moms View Message Board: Parenting Children with Special Needs: At the end of my rope....
By Lauram on Tuesday, July 27, 2004 - 05:46 pm:

My son is so hard lately. I don't think his Strattera is doing much. Before church on Sunday, I had to ask him 3 times to get his shoes on. This is a new behavior for him- difficulty following one step directions. He's always had trouble with impulsivity and concentration- especially in large groups, but never following directions. He is having trouble at swim team practice- impulsive stuff (splashing kids). He's having trouble concentrating on summer reading. He's also developed this whistling tic which is causing some problems at the library and a karate. He has also been sooooo defiant (like a teenager in a 7 year old body). I asked him to do a rating of how things are going:

Rating: 1-10 (10 is worst). This is what he said:
“Brakes” (impulsivity) 10
following directions 6
concentrating 7
tics 3
Here are my notes from church on Sunday that I'm bringing to the neurologist and psychologist tomorrow
10:55 AM- 11:10 AM
Behavior Consequence
Fidgeting, touching fan, pacing, “jazzed up”
Kicking pew 30 more pages of reading
Kicking pew 60 more pages of reading
Kicking pew 90 more pages of reading
Kicking pew 120 more pages of reading
Grinding teeth
Refused to stand reminded about cake after church
Stood up
Sat down
Touching kneeler
Stood up
Grinding teeth
Put kneeler down
Wouldn’t move legs told to move them
Sat down told to kneel or no cake
Kneeled
Grinding teeth
Humming
Singing asked if he needed a break
Said no
Humming told cannot do noises/if need a break- go
Walked out
Called him back in
Sitting on my lap
Trying to pick at my fingers told “no”
Trying to grab my knees told “no”
Sliding up and down the pew told to come closer
Tapping on pew told to kneel
Took card from box in front of him
Ripped up card grabbed it away
Said “someone wrote on this” (the card)
Slamming body into me told to stop
Singing
Pushing self up on pew
Singing opera style

I don't know what else to do. I can't be more structured, I can't give more consequences and I can't exercise him more. We're hitting a wall here. Can ADHD get worse over time? Anyone have similar problems with Strattera. I'm very scared of the stimulants because of the problems with tics, but I'm afraid that's our last hope....

By Gammiejoan on Tuesday, July 27, 2004 - 10:34 pm:

Laura, I just want you to know that I'm thinking about you. I don't have any experience with ADHD, Strattera, or stimulants. What I do have experience with is occasional feelings of hopelessness during the times when my grandson's behaviors appear to be escalating. I hope that the neurologist and psychologist will be able to come up with an appropriate treatment for your ds. Good luck tomorrow, and please keep us updated.

By Cat on Wednesday, July 28, 2004 - 12:46 pm:

{{{{{Laura}}}}} Sorry I didn't see this last night. Please do let us know how it goes at the doctor's today. Robin's ADHD was always ADHD+. In the past couple years it became ADHHHHD+++++. Then last summer he was dx'd Bipolar in addition to the ADHD. I know Douglas has other dx's also. It's SO hard dealing with these kids at times!!! Right now Robin is on Abilify (10mg, twice a day), Lithium (450mg in the am) and clonidine (.1mg to help him sleep). We've taken him off the Strattera for now. His behavior has actually been suprisingly good. He still has his moments, but what kid doesn't. His doctor did say that we may need to add a stimulant when school starts (next week!). I told him I wasn't opposed to it, but it did scare me (stimulants and bipolar have a bad track record). He understands, but thinks something will need to be added for concentration. I guess we'll see. I'm so sorry you're having to deal with these problems. It seems we make two steps forward and one step back all the time, doesn't it? I totally understand your frustration. We're always here for you. More hugs to you and some for Douglas as well. It's frustrating for them, too.

By Pamt on Wednesday, July 28, 2004 - 04:53 pm:

Laura, first a questions...what does it mean "30, 60, etc. pages of reading?"

Have you tried some "socially acceptable" methods of fidgeting to allow for that extra energy to be released, such as a velcro bracelet, thera-putty to play with in his hand, a stress ball, or other things like a weighted vest of an ankle weight placed across his legs?

I'll talk with some of the OTs next week and see if they have any other ideas.

By Kaye on Thursday, July 29, 2004 - 12:41 am:

no great advice, but my cousin's son has a very similar DX as your son. He is on a stimulant, adderal and it is helping him quite a bit. His tics have not gotten worse, which is what you worry about most. He still has tics, but they come and go. he is almost 12 btw, he is doing much better and school and really starting to recognize his own needs to take a break.

By Coopaveryben on Thursday, July 29, 2004 - 07:11 am:

My friend put her DD on Strattera and she had a reaction to it: she was chewing on her hands, couldn't sit still, scratching her head-said she itched all the time, grinding her teeth and was even more out of control than before. Just a thought, maybe it's not for him.

By Lauram on Thursday, July 29, 2004 - 09:46 am:

Pam- We've tried a LOT of the things you mentioned. He's been doing those things since he was 3 1/2 when all of this started. The only thing we've never done is a weighted vest. This past year while he was on Strattera, we did those in addition to the meds. He can't function off the meds- or even use those strategies unless he has a little biochemical help- if you KWIM. He's also getting older- so it's getting more and more obvious that he's SOOOO extreme in relation to his peers. The reading thing was a consequesnce I was giving him (as a last resort because it was the only thing that was even phasing him) for his defiant behaviors. We were really in crisis at that point as that was the only thing that would get his attention, yet it wasn't the greatest consequence. Hence, why I needed help! The dr told me "It's time for some REAL medicine." (meaning a stimulant) He said he really doesn't like the results he's seen with Strattera. He tried to talk me out of it last fall, but I wanted to stick with it for awhile longer before "giving up." He put him on his "favorite" stimulant- Adderall. Douglas got the generic and it says "amphetamine salts" on the bottle. YIKES. I had a huge stomach ache all night over it. We gave it to him this am. WHat a difference! Swim team practice was great this AM (I watched him from the playground). Usually he gets constantly reprimanded ("Douglas, Douglas, Douglas.....). This AM- in 1 hr and 45 min of practice I only heard his name called out once (in a negative way) and HE RESPONDED to the child who was upset with him and stopped splashing her! When we came home, I gave him two directions in a row, walked out of the room and then called to him to see if he had heard me. He told me he was doing the first thing I told him to. WOW! His tics seem a bit worse though- lots of blinking and facial stuff. Tolerable, but still a concern.... We have to increase the dose in 2 weeks. then back to the dr in a month (right before school starts). We might have to increase when school starts too- he said. As for the concern about the tics, there is only a slight chance they will get worse. If they do there is a chance that if he goes off it they won't get better. He told me that the risk of that is much more than not medicating him though. What a nightmare....

By Mommmie on Thursday, July 29, 2004 - 01:49 pm:

Miracle drugs, I tell ya! My son does better on Ritalin, than Adderall. He has zero side effects on Ritalin LA, but he had side effects with regular Ritalin and Adderall. So, if the side effects get bad, you can always switch. Isn't it wonderful seeing your child be successful! It's a bummer we need meds to help our kids' frontal lobes work right, but hey, thank goodness we have the choice!

By Feona on Friday, July 30, 2004 - 05:33 am:

Did you do allergy testing? I just read an article in parenting guide on how a child's adhd was cured after removing yeast from diet. Sure it is a far shot. But couldn't hurt. The doctors put the child on an pretty simple diet of real homemade chicken and meat and vegetables and rice. After a two weeks you add in one thing at a time to see if you see reactions. Sometimes if you remove all the allergians you get worse before you get better!

John wears the weighted vest. They have cute ones. No one but the teachers knows he wears it.

OTvest.com makes one that is denim. You wear it 1/2 hour. Take it off for 2 hours. John only wears it during story or circle time. They also were expermenting with the widgets for john too. (though he doesn't see to be hyperactive)

By Marcia on Friday, July 30, 2004 - 11:16 pm:

Allergy testing is what did it for us! When my oldest was at the point that I was actually considering meds, I took her for allergy testing. She tested highly allergic to sugar. Once I removed it from her diet, the difference was amazing!! Now she eats sugar, but we're careful about how much she gets.

By Lauram on Monday, August 2, 2004 - 12:55 pm:

Well, it's day 5 of the medication and we're starting to see a difference. He went to a vacation bible school today from 9-12. He was very upset about going, saying "no one ever likes me when I do new things." I reminded his teacher and made sure she'd been given his information, sucked in "my gut" and left him there... :( Douglas LOVED camp! He had a blast. He had a GREAT report! His teacher (who I'm sure was terrified) said he was "The best" in the class. She wished some of the others were more like him! He was raising his hands, making great comments and asking her if she needed some help! WOW! Also a woman who has known him for a long time (from our church) - she was also a former Special education teacher - commented on the difference in him. She was watching at the gathering at the beginning and he was so engaged, focused, making thoughtful comments- "a different child." I was so happy for him. He was psyched too. It's great for him to have such positive feedback- that will make him feel so much better about himself.... THis is DOUGLAS! HOORAY! I'm still cautiously optimistic, but am very hopeful that we are on the right track (finally). I'm taking the kids to see Two Brothers at the cheap theater in town at 2:30 (hopefully MOrgan will have a $2 nap) as a special "treat."

By Kaye on Monday, August 2, 2004 - 03:53 pm:

Yea!! that was our experience with Adderall XR, just a new kid. We are now 4 months into it and still think it is just amazing stuff! I used to be very cautious about meds and now I am such a huge believer in them!

By Lauram on Tuesday, August 3, 2004 - 11:08 am:

His swim team coach (who has known him for 2 years) told me he had "the best practice ever" today. He asked me after practice, "Are we going straight to church camp." I braced myself ready for the complaining, but when I told him we were he said, "Great!" THere was an issue with the girls this AM at practice- he was splashing them as usual (his coach says he's trying to get their attention- ie his social immaturity). He told me, "Mommy, I was feeling left out!" WHAT?! This is my kid who can't verbalize his emotions. I was FLOORED!


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