Doctors out of ideas - 2 kids with PDD & ADD

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Registered: 02-17-2002
Doctors out of ideas - 2 kids with PDD & ADD
Thu, 08-02-2012 - 2:58pm

I have two kids who have been dx with PDD-NOS and ADD - 6 & 9. We have been through the gamut of ADD meds and nothing works and their doctors have pretty much thrown up their hands and said they don't know what else to try, which has been massively frustrated because pretty much everything on their IEPs tie back to lack of attention span. They've both extremely smart but can't apply it do to lack of attention.

My oldest has been on all sorts of meds. The stimulant ones either make him aggressive (he's aggressive even without but this amplifies it) or it makes him an emotional basket case. He was on Strattera for a long time and it seemed to help a little but when we switched from a developmental ped to a psych she took him off and felt it was contributing to the aggression as well. The only one we saw any benefit from was Daytrana - his teachers actually saw noticible improvement. But the patches themselves left huge red squares that would take weeks to go away and would itch so bad he would end up in the nurses office sometimes a few times a day for ice or benedryl cream to make it stop. So we had to give it up - both hips and back were just one itchy, flakey, red blob. Right now he's on tenex and abilify but it's not doing anything. He went to summer school and his teachers said even sitting with him they couldn't keep him focused and didn't get anything out of him. His doctor is out of ideas. He's going to fall way behind if we don't get his attention under control, but I don't know what to do. We tried the diet a few years ago and that did nothing but give him eczema and cause him to lose weight that he can't afford to lose. What do I do when all the "experts" give up?? The school does what they can but they can only do so much.

My middle child was dx last fall with PDD and ADD. He's just always off in his own world. He's constantly moving. He did good in preschool but then started kg last year and wouldn't speak to anyone - his para thought he was mute. He wouldn't draw or write so they assumed he couldn't until I showed them pictures he'd drawn and my grocery list he had added things to. We tried Strattera and it didn't do squat. He's now on ritalin but his teachers saw absolutely no improvement and over the summer I can see that he's just off in lala land most of the time. He's still not 100% toilet trained. He did great for about 2 months at the beginning of the summer but now it back to several accidents a week. He starts 1st grade in a few weeks and will be at school all day. I don't know how he'll get through the day when he couldn't manage half day kg. His doctor has also pretty much said he doesn't know what else to try with him.

These doctors just give up and act like this is just how they are and we'll have to accept it. But I don't want my kids to fall behind just because of this when I know they both have the ability and intelligence to be amazing if they can just focus. At some point the school will have to stop passing them on to the next grade.

What else can I do? As I said, the school gives them every accommodation they can but it's just not enough. The doctors just give up. I feel like I'm out of options to help my kids. Any ideas??

Avatar for ribrit
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Registered: 02-24-2001

My son, who did not do well with anything else, responded well with Pamelor. It is really not meant for this age level, but, it really did the job. He started it at 5 yrs old. He went off at 8 and then restarted it when he was 16 or 17 yrs old.

iVillage Member
Registered: 05-02-2004
Seconding the vision therapy. My son was diagnosed as ADHD, then started vision therapy, mostly for his reading as he read like he was dyslexic. (I knew he wasn't because he got phonics when it was large.)

My son had a slight lazy eye and some brain processing issues. The lazy eye caused him to see in double vision. If he moved, he would see one. He never stood still and looked people in the face. He couldn't concentrate long because he had to work so hard to get his eyes to work together. Vision therapy actually helped a lot with the movement and the attention. He still gets distracted easily if he is not total interested, (but I think that is a sign of a smart person. ) Check into this, and rule it out for both kids. At best, they need therapy, at worst, you have ruled out an issue. (My son was forever feeling when he had to go too. Lots of accidents.) All of this I attribute to fine motor control issues, including the potty training. Vision therapy is NOT a cure all, but it can help to make things better.

We do not do meds, but we do homeschool. We have found that a core stabilizer disk (like a flattened ball, from a fitness/sporting goods store) helped a lot for my son to sit on. He could move his butt, but not as much as an exercise ball. For math we use graph paper to help keep all the columns in line. He gets OT for writing as well as speech therapy.

I have to say, my son also seemed off in his own world most of the time too. See if you can get him tested for auditory processing issues as well. Earobics, a CD you can load on the computer, has games that they can play to improve this.

Good luck, and yes, there is more to be looked into, just not all docs think the alternatives are effective, or, they don't know about them. Keep searching until you find what works best for your sons. Don't let them give up, and don't give up yourself.
Avatar for skystrider
iVillage Member
Registered: 06-14-1999

I just wanted to give you a little encouragement from someone who has been through all of that.  My oldest was a lot that way.  I thought she'd never be potty trained.  I felt so frustrated and alone and embarrassed in that department.  She also has a high IQ, but her behavior and attention caused her to make little to no progress in those early grades.  She ended up graduating from high school a year early.  Once she was ready to learn, she just flew through the curriculi.  It's hard to be patient when you're in the thick of it, but it gets better.

Avatar for Cmmelissa
iVillage Member
Registered: 11-13-2008
How frustrating for you trishap73 :smileysad: I can't believe that the doctors would just say there is nothing else for them to try, that's just not acceptable when it comes to your kids. My oldest is ADD, and it's been trial and error for us trying to find a med that works without any side effects, he just started a new one a couple of weeks ago. I'm sure others will have some suggestions for you, the only thing I can think of right now would be to switch to different doctors, not sure how feasible that would be for you.The other thought I had would be to try behavior therapy, although I'm not sure how much help it would be for him. I really hope that you can find a solution, it's so hard as a parent to watch them struggling. (((HUGS)))