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| Tue, 06-10-2008 - 1:06am |
Jeffrey was just recently diagnosed with PDD-NOS. I have a few questions for you girls. On the evaluation that the developmental specialist sent to me, there are a couple things that were off due to him not wording it right/me not understanding. Should I talk to him or have Jeffrey’s normal pediatrician talk to him (Developmental specialist said that pediatrician could monitor him from here out, unless something else comes up). Are there other tests that should be run, blood work, urine, that sort of thing? I already spoke to his pediatrician about the things that I felt were off in the evaluation and he 100% agreed with at least one because he has observed the behavior and that’s why he originally sent him to the specialist, and he hasn’t observed the others so he is going to keep an eye out, but does the specialist need to be notified?
I also wanted to share with you our night last Thursday. My daughters’ school had their end of the year program and I was AMAZED at how well he did. Sat still (more then normal, lol. Was playing with mommy’s camera), didn’t have any melt downs until we got to the parking lot, but oh did he have one once we went to leave. He wanted to go home with Grandma and check on Grandpa, and he screamed and screamed and cried and hit me, my poor mom didn’t know what to do, I had to finally tell her to go get in her car, it would be ok. She sat in her car and was on the verge of bringing him home with her even though she had work the next day. I finally had to get in the back and physically get him in his seat and buckled up, once I did that, he was fine. But I wanted to share the good part with you! Lol. Its amazing that sometimes hours go by, half a day if I am lucky where he shows no indication and I second guess my gut and the dx, then something happens and there is NO QUESTION that’s its right.
Another question, is severe aggression a big thing with PDD? I used to think the fighting him and his brother did was sibling rivalry. He also hits adults and other people, but not on a daily basis and he is better about it. He has had me in tears before and once in the store my mom had to walk away because he hurt her so badly. That was the day an associate at Wal-Mart asked me if he was Autistic, because she works with Autistic children and he exhibited a lot of the characteristics. I know a lot of this is stuff you have probably covered before, but it’s all new for me. Thank you so much for all your support since I have gotten the dx and found this board.
Cari 26 mom to
Raelyn 6/25/2001
Jeffrey 7/14/2004
Matthew 4/10/2006
Edited: UGH sorry, like this wasn't long enough, lol. Can any one help with a social story that might help with pottying on the toilet, he does fine #1 but not so #2, lol. Seneca (I think thats the name) was suggested, but its more of him holding it on purpose(?) I think, then not being ABLE to go. Thanks
Edited 6/10/2008 1:10 am ET by mymysticmayhem

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I still feel pretty clueless about a lot of the autism stuff even tho' I've been trying to figure it out for a couple of years, so I'll be less help on that end. I will say that aggression IS a pretty normal part of PDD (our kids still need to learn better ways of dealing with their frustrations, but it's not unusual for the aggression to occur when they're feeling overwhelmed and can't figure out how to solve their frustration). Some kids have a co-morbid diagnosis of mood disorders, but with my kids, the docs and I feel pretty sure the kids' moodiness and aggression is just a part of their autism diagnosis.
For the toileting stuff, I have a lot more experience since my AS ds used to have encopresis and my 13yo AS dd has had bowel problems her entire life (probably due to neurological and sensory issues associated with AS). The Senekot that someone recommended to you is a stimulant laxative. Stimulant laxatives force bowel contractions to eliminate stool. It is good for cleaning out the bowels but is not recommended for long term or daily use since the body can become dependent on it. Stimulant laxatives are often senna-based products (like Senekot and Ex-lax), but there are other types of stimulant laxatives as well.
Non-stimulant laxatives help hold water in the stool to prevent its getting dry/hard and difficult to pass. Non-stimulant laxatives are safe for long-term daily use. Non-stimulant laxatives are products like Miralax, Benefiber, Milk of Magnesia and mineral oil. Since it is harder to withhold soft stool than dry/hard stool, doctors typically recommend a daily regimen of a non-stimulant laxative to help a withholder get over their habit of withholding stool. Some children need 1/2 dose of laxatives to get results, some children need multiple doses. You want to give enough laxatives to make the stool soft enough that ds can't withhold (pudding-like consistency or softer, if needed). If ds is getting diarrhea, you can cut back on how much laxative you give him. If ds isn't producing daily stool or sufficient quantities of stool, increase his laxatives.
Withholding stool will cause impacted stool which will stretch out the bowels, making ds lose bowel muscle tone. When loss of muscle tone occurs, uncontrolled soiling often occurs. This is a months- to years-long process to overcome, depending on how bad the bowels are stretched and how bad the habit of withholding is.
I don't have a great social story, but I highly recommend non-stimulant laxatives.
Best wishes.
There is a saying we have here: If you have met one kid with PDD-NOS, you have met one kid with PDD-NOS (or Aspergers, Autism ADHD ect...). It is especially true of PDD-NOS because that DX inparticular is kind of a catch-all.
I wouldn't fret about "coulda-shoulda-wouldas" from the evaluation, unless you think they got the diagnosis completely wrong. I think I was on my third evaluation before I started figuring those questions out.
As for bloodwork and other stuff: Unless you want to participate in alternate medicine like DAN! (Defeat Autism Now!) Is is not generally needed. Some doctors recommend ruling out Fragile-X syndrome, but kids with Fragile X generally have specific facial features as well as a more severe form of Autism.
Some of "our" kids do have problems with impulse control and self regulation, which can lead to hitting and lashing out. For some, as mentioned previously, this can be serious enough to warrant further evaluations and possibly another diagnosis or medications. However I would try behavioral interventions first. Most docs don't (shouldn't) consider anything as drastic as meds until the more conventional options have failed miserably. However it does sound like Jeffrey has some great skills. It is great that he could hold it together at that show. Over time I imagine both he and you will learn strategies to help him with his aggressive tendencies. Check out my blog. There are book links on the right-hand side. "The explosive child", "Asperger's Syndrome and difficult moments" and "The Incredible 5-point scale" are all books you may want to check out of the local library to see which may suit you. "123 magic" is also good, too, BTW although I know some people here have not had the success with it that I have had.
PDD is related to Autism. It is on the Autistic spectrum, so yes he does have "some" Autism. Just not enough for a full diagnosis (like I daid PDD-NOS is a catch-all bucket). So the Wal-Mart lady was half right. My son can look very Autistic on a very bad day, but most of the time, people who don't know him think he is just a sweet, nerdy kid.
I can't help yopu with the pottying thing unfortunately. I have been lucky with my kids in this department.
I hope this helps. Yikes! I gotta make dinner...
-Paula
visit my blog at www.onesickmother.com
visit my blog at www.onesickmother.com
Thank you for all the help. He holds it, but mainly if expected to go on the potty, lol. He will go in his pants almost no problem, lol. They are never the same consistency, they aren't hard most of the time. They go back and forth.
The main thing that was misinterpretted was his non-verbal communitcation, they put down that it was normal, and its not. He will take my face in his hand and turn my head to what he wants to show me or will take my hand and lead me, but doesn't point often. They put that as a 0 and normal. Thats the one where his normal pediatrician was like...I won't generally send a child this young to a developmental specialist unless they exhibit that behavior/lack of and I know Jeffrey wasn't pointing and thats why I sent him. So thats the one I would call about if any. The other ones were like, ok depends on the Jeffrey you see it could be that. Thanks again, Cari
For the toileting stuff, will your ds wear a pullup or diaper? If so, have him ask for a diaper or pullup when he needs to poop. After several weeks of his asking for a diaper or pullup, prepare him to begin using the toilet to poop (talk about it, assemble prizes, etc). On the appointed day, when he asks for a diaper or pullup, take him to the toilet instead. Because he'll have asked for a diaper, you'll know his urge to poop is strong. A day or two before you begin having him use the toilet, begin giving him a mild non-stimulant laxative to make it a little harder to withhold while sitting on the toilet.
Well I have a 5 year old (AS) who still will not sit on the potty. He will go in his pull up/underwear but no potty. He will pee on request but he won't initiate that himself. So after about 2 years of pulling my hair out I am going the route of an ABA specialist (applied behaviour analysis). It tends to be more for the lower functioning child, but I have heard of good things with relation to specific behaviours (or blocks) and high functioning asd kiddos too.
Here is a social story Cian's teacher wrote for him. He loved the idea of it but it never rwlly worked. He also has such low muscle tone and unformed stool this may be a part of it too, (although I suspect some stubborness is involved as well :)
< Cian is becoming such a big boy. He will be 5 soon. Five year old boys wear big boy underwear. They sit on the potty to go pee and poo. Everyone will be so proud of Cian when he goes poo and pee on the toilet. Mommy and Daddy will be so proud when Cian goes pee and poo on the toilet.>
Something to that effect. I had to pull it from memory. is teacher also used picture references, like a picture of Cian under his name and graphics of a toilet and thumbs up for other words. You know I may have to find it again; it's been a few months and worth another shot now it's summer time.
hth,
Dee
Made by My Cool Signs
My DS has a PDD-NOS dx and there were tons of reasons that I was convinced it was wrong.
Thank you so much for the social story Dee. The biggest thing with Jeffrey is that he has been wearing underwear since October and if I use a pullup or diaper I fear that it will set him back even more, he is independent in that aspect. He will pee on the toilet without prompting, but he stands to do that, I have tried a smaller cushioned seat and he hates it. I was using glycerin supositories when I knew he needed to go and he would just sit on the toilet saying "I can't" but I would catch him doing his "hiding" and being very quiet thing so I knew he needed to go and that always works within minutes, but I hate doing it. I am not concerned about it for me, I don't care about giving him the time to go on his own, but with Pre-K coming up next year I am really concerned about the school and teachers. I myself an uncomfortable with the idea of someone else having to clean him up, I do not know how he will feel or how they will feel.
I am not trying to have the dx taken away, just concerned that they downplayed a couple of parts. He also immediatly took to the specialist which is very abnormal for him so I think that also affected his behavior. I have known since he was a few months old something was different or not quiet right, it just took this long for some one else to listen to me. Thank you for all the replys.
Using a diaper or pullup won't set him back. Instead it will enable you and him to regain some control over the situation. By his asking for a diaper/pullup, it breaks the withholding habit, and it lets you know when he needs to poop, which you can then take advantage of a few weeks down the road to re-start the poop toilet training. It may FEEL like you're going backwards by using diapers/pullups you haven't used for awhile, but it's far better than having him withhold or mess his pants. Withholding and soiling are a bigger backwards step.
Hi there, we are new to the Pdd-nos diagnosis as well.
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