new PDD-NOS dx and questions for you wise mamas

[expat-mama]

Hi,

I posted recently about my DS and we just got a preliminary dx of PDD-NOS for him. Next, I have to take my referral to an occupational therapist now for a full examination and follow up therapy I guess.

I have sifted through the threads here but it's so hard to find the answers to my specific questions, so I apologize if I am asking things that have been asked so many times before and I thank you for your understanding!

First of all, our pediatrician said that because DS did not actually show signs of regression (loss of language, withdrawal of affection etc.) and because DS is so advanced in some ways we should be cautious about overreacting about the dx.  I don't understand this exactly- DS has shown a rapid increase in the symptomatic behaviours of ASD lately (echolalia and other speech things, spinning, lining up toys, playing with parts and wheels, etc)- does this not count as regression? Also I failed to ask if we should EXPECT regression, loss of language, withdrawal of affection? What does it mean if a child doesn't regress in the typical ASD ways but still exhibits spectrum behaviours? Is regression pretty much guaranteed to occur eventually?

I don't know how long it will take to get my son an appointment with the OT. There might be a significant wait. What can I do in the meantime to start helping him? Can someone recommend books that I can read to grasp what I can do as a caregiver to offer him the best support at home? This is really important to me and I am so in the dark right now and feel like what I normally do with him is not enough. I want to help.

Is the PDD-NOS dx pretty likely to change over time or after a more extensive evaluation? It seems from my limited reading that PDD-NOS can be a sort of catch-all dx. Should I be trying to get a more specific dx in order to tailor ds's treatment? Or is this broad dx better in the long run in terms of giving him more options for treatment?

Finally, we have been dealing with sleep issues for DS for a long, long while and they seem to be getting worse by the day. We have been trying to successfully night wean DS for 6 months- he still consistently wakes up asking for milk getting violent and very, very upset. I have health and anxiety problems that are partly caused as well as exacerbated by ongoing sleep deprivation we've experienced since DS was an infant. My original plan was to have DS completely weaned around the time he is 2, because we were planning to TTC (we are putting this on hold indefinitely now) and for my own health reasons. DH is saying that the only way to get him to stop asking for milk at night and tantrumming about it constantly is to completely wean him at once (He nurses 2-3 times a day). Now I think his resistance is related to his ASD. I don't know what to do now- I still want to wean him, but it's so difficult and he is so resistant to changes in this regard. I know we can't continue with the sleep situation getting worse and worse though. I don't know what I'm asking here- does anyone have experience weaning a toddler with ASD? Or dealing with terrible sleep problems?  

I feel like I have more questions swimming around in my head, but can't quite sort them out now. I am so thankful for this resource and that there are caring moms sharing their advice and experience here on MDC. I never knew how much I would need it. 

Thanks again for reading.

[Linda on the move]

 

Originally Posted by expat-mama 

First of all, our pediatrician said that because DS did not actually show signs of regression (loss of language, withdrawal of affection etc.) and because DS is so advanced in some ways we should be cautious about overreacting about the dx.  I don't understand this exactly- DS has shown a rapid increase in the symptomatic behaviours of ASD lately (echolalia and other speech things, spinning, lining up toys, playing with parts and wheels, etc)- does this not count as regression?

.

There is a difference between losing skills and adding quirky behavior.  My DD (who is now 15) never regressed (at least an in obvious way). Regression has a specific meaning -- the loss of a skill.

Also I failed to ask if we should EXPECT regression, loss of language, withdrawal of affection? What does it mean if a child doesn't regress in the typical ASD ways but still exhibits spectrum behaviours? Is regression pretty much guaranteed to occur eventually?

I don't know what it means if a child doesn't regress. Mine never did. I don't know that much of anything is truly typical when it comes to ASD. There's a bad joke -- "if you've met one kid on the spectrum, you've met one kid on the spectrum."

Honestly, for me, one of the toughest things about raising my DD has been the Not Knowing. Learning to make peace with the Not Knowing has been a path for me -- no one can tell you some of the answers you seek. No one.

 What can I do in the meantime to start helping him? Can someone recommend books that I can read to grasp what I can do as a caregiver to offer him the best support at home?

I really like the book Quirky Kids by Klass. It's about several disorders, and PDD-NOS is one of them. It's a great place to start. Sensory issues where a primary issue for my DD, and The Out of Sync Child was like my bible when she was young.

Keeping loving and enjoying your son, and do things together that you both enjoy -- whatever that is right now. And take lots of pictures of him. Don't the the SN stuff take off life completely. This is one of my regrets as a parent. I thought this was some little thing we were working through and we would get back to normal life. But this has been normal life for us -- so now my advice to mothers of younger kids is to keep enjoying life with their child (while reading the books and getting the therapies and all that).

Is the PDD-NOS dx pretty likely to change over time or after a more extensive evaluation? It seems from my limited reading that PDD-NOS can be a sort of catch-all dx. Should I be trying to get a more specific dx in order to tailor ds's treatment? Or is this broad dx better in the long run in terms of giving him more options for treatment?

It may or may not change. My DD's dx was PDD-NOS for years and years, and was changed to Asperger's when she was 13. In her case, it wasn't more extensive evaluation that changed things, but rather, her ability to comply with testing. It sounds like your son is very young (2?) and I would suggest getting another evaluation in a few years (may be once he is school age) to see if age and maturity help make things more clear. But I doubt that re-evaluating right now will tell you much that is different.

His treatment now can be tailored by the specific therapist working with him -- his ot, for example, will tailor ot to what your son needs. The specific label doesn't matter at this point. Same for speech therapy and anything else that comes up.

gotta run.

[orlakelly]

Hi so sorry to hear about your son-my son has pddnos also-yes it is a catch all but generally its for kids on the milder side of the spectrum. My son didnt regress as such but there are times that he gets worse and then he gets better again. We didnt have the symptoms you have-hence the complexity of autism!

As for weaning, it is a hard thing to do at the best of times with a child with no issues and with sleep deprivation and exhaustion-you really need all your sleep just to function through the day. You are going to have to do it sometime. I would get specialised advice on the weaning aspect from a midwife or other professional who has hands on practical experience of special needs kids. As for sleep problems, my son is on melatonin and I know young kids on it too, it helps settle them and helps them sleep longer.

Diet changes may be needed also but try to get specialised advice-you have a few issues to deal with! Mind yourself x

[RJ11]

My son is 5 1/2 - he has no dx yet but probably has Aspergers and if we had done proper evaluations at 2 he probably would have been given a pdd-nos. He was always a horrible sleeper but I thought it was just because I never did sleep training and chose to BF on demand. (but My daughter has always been a great sleeper with the same parenting) At around 2 1/2 My DH also felt I should completely wean my son to try to help the sleep situation. Instead I decided to only night wean. It took a very long time to implement. I explained to him all about day and night and that nursing was for day only. At the time I didn't realize he had delays so he probably wasn't understanding very well. Finally I was able to make it clear that he could nurse at bedtime while I told him stories (not reading a book just reciting memorized stories) when the stories were over I would gently remove his mouth and cover up and then I would lay with him until he was asleep. He was still a restless sleeper and would wake up and sit up a few times at night but as long as I was next to him he would go back to sleep. At 3 and 3 months I weaned completely because I was pregnant with number 2 and just couldn't do it anymore. Looking back this was a very difficult time. He became a much better sleeper after I removed gluten and dairy. Now he goes to bed on his own but still sleeps with me half the night but I don't mind. His speech was fine by 4, 4 1/2. He mostly has social delays now. I have to run now but will share more later. Just as a PP said "Out of Sync" and Quirky Kids are great books. ALSO this book gives you exercises to do at home: http://www.amazon.com/Growing-In-Sync-Child-Activities-Develop/dp/0399535837/ref=sr_1_sc_1?s=books&ie=UTF8&qid=1338403513&sr=1-1-spell
 

[RiverTam]

1.  Regression -- My son never regressed. He just didn't develop speech in a timely way. He hit his milestones on time. He could talk. He just didn't. He put words together in phrases (to ask for something or to make a statement), but didn't have many conversations with people until he was almost 6. (Now he won't shut up.) He had fewer spectrum behaviors at 2 than he does at 9. Compared to his peers, though, he's more functional at 9 than he was at 2.

2.  Suggested reading -- I really like  "The Asperger's Answer Book" and "The Mislabeled Child."

3.  Night weaning -- could you pump and bottle feed?  If that would work, you switch off  taking the night feeding on every other night with your child's father.  We did that at my house. Oldest son didn't sleep through the night until 17 months. 

4,  Stuff to at home -- my son had significant speech delays, so we did a lot of work with communication stuff at home. We used the Transporters videos to work on reading facial expressions and identifying emotions. We used the Social Skills Picture Book to work on learning social behavior. We practiced a lot of explicit teaching of social behavior. Ie. if he got frustrated and threw a tantrum over something, we would get him calm down, and then verbally identify what he was feeling and what his problem was and then specifically teach him ways to solve the problem. We would have him practice the new method of solving the problem and reward him for doing so.  We bought the Social Detective and Superflex books and read them. We bought  

We also practiced a lot of language skills like listening and following directions because he had deficits in those areas. We used the 100% series from Linguisystems. http://www.linguisystems.com/index/home

5.  You might want to check out the family toolkit that Autism Speaks puts out: 

http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit

6.  We did a couple of social skills groups, but haven't done much OT. We have done a lot of speech therapy, though. (3+ years)  We also put our son in karate and swimming and a children's acting class and gymnastics.  Non-competitive individualized sports have helped with socialization and confidence and motor clumsiness. 

[expat-mama]

Thank you all so much for your replies. I appreciate it more than I can say and it's leading me in all sorts of directions to find ways to deal with all of this that is so foreign, unexpected and new to me. 

I spent all of yesterday reading about the gfcf diet and we cut out dairy starting today. Reading personal accounts of diet-related behaviours sort of struck a chord with me- DS's ASD symptomatic behaviour has really escalated since he started drinking lots of cow's milk that we were giving him because he drastically cut down on breastfeeding in the past few months. I'm REALLY hoping this will help especially with the sleep and speech issues which are our most problematic right now. I guess we will move on to cutting out gluten soon too, although this seems like a bigger monster to tackle and I'm totally unprepared for it. I am so clueless about all of this though! It's overwhelming.

Also- using some suggestions from the other thread I started I've really been working on teaching DS things that he never picked up naturally- waving, nodding and shaking head, answering YES/NO questions and it's working! He can do these things with lots and lots and LOTS of prompting and practice- so this is good right? He clearly said the word "YES" for the first time a couple of days ago! It was amazing. We practice yes/no questions a few times a day now and he's getting the hang of it- but in normal conversation/questioning he still doesn't really answer. I also found some helpful stuff for echolalia on teachmetotalk website. 

Unfortunately, getting him into OT and ST looks like it will be a long process here. I'm living abroad in the UAE and services like this appear to be dismal. It will be a lot of work trying to get the help we need. I'm so determined to do everything I can with DS at home in the meantime. I'm looking into the books suggested above and planning to order some soon. It seems like a lot of the books for speech and social exercises are for older kids- are there some that are for toddlers that will be helpful for us?

As for the sleep and weaning stuff- we've decided to put weaning on the back burner for now and work on ways of coping with the exhaustion. Right now, DS wakes 2-3 times per night having big crying/hitting/screaming fits asking for milk or just staying awake for a couple of hours. I don't nurse him until 4 or 5 in the morning. Then he nurses down before nap and before bed. We have been wholly unsuccessful in putting him to sleep any other way (tried and tried and tried). Sometimes he will fall asleep in the car but that's it. So that's where we are for now. I haven't pumped milk in over a year- I don't think I want to start giving him bottles even if he would take them (he wouldn't accept sippy cups of milk at night, and often will throw his water cup across the room when we try to offer that). Maybe in a few weeks once we've adjusted to the diet changes and are over the shock of DS's dx and have found some ways of dealing with other issues we'll return to the weaning issue.

Has anyone had success with natural sleep aids for kids? I tried melatonin for a few days it didn't seem to make a difference- do you need to use it for a long while for it work? Has anyone had success with Bach's rescue remedy or sleep remedy? There are others I was looking at- Pediakids Sleeplessness and Similisan Sleeplessness Relief. I'm tempted to try them all. DS will not drink chamomile tea despite my best efforts.

If there are any other helpful suggestions out there I welcome them with so much thanks!

[Emmeline II]

Originally Posted by expat-mama 
 

Also- using some suggestions from the other thread I started I've really been working on teaching DS things that he never picked up naturally- waving, nodding and shaking head, answering YES/NO questions and it's working! He can do these things with lots and lots and LOTS of prompting and practice- so this is good right? He clearly said the word "YES" for the first time a couple of days ago! It was amazing. We practice yes/no questions a few times a day now and he's getting the hang of it- but in normal conversation/questioning he still doesn't really answer. I also found some helpful stuff for echolalia on teachmetotalk website.

Originally Posted by expat-mama 
 

Unfortunately, getting him into OT and ST looks like it will be a long process here. I'm living abroad in the UAE and services like this appear to be dismal. It will be a lot of work trying to get the help we need. I'm so determined to do everything I can with DS at home in the meantime. I'm looking into the books suggested above and planning to order some soon. It seems like a lot of the books for speech and social exercises are for older kids- are there some that are for toddlers that will be helpful for us?

Some STs actually conduct therapy online; or perhaps you could just consult with one this way.

Online search for "speech therapy online"

Originally Posted by expat-mama 

As for the sleep and weaning stuff- we've decided to put weaning on the back burner for now and work on ways of coping with the exhaustion. Right now, DS wakes 2-3 times per night having big crying/hitting/screaming fits asking for milk or just staying awake for a couple of hours. I don't nurse him until 4 or 5 in the morning. Then he nurses down before nap and before bed.

When ds was 2.5 I decided to night wean him because his acrobatics when sleeping and nursing were keeping me (and dh) from sleeping (I was pregnant at the time). Dh completely handled putting ds to bed and dealing with him if ds woke up. It was a rough 2 weeks but it was better after that. No real advice there, just what what happened with us.

Quote:

Originally Posted by expat-mama 
Has anyone had success with natural sleep aids for kids? I tried melatonin for a few days it didn't seem to make a difference- do you need to use it for a long while for it work? Has anyone had success with Bach's rescue remedy or sleep remedy? There are others I was looking at- Pediakids Sleeplessness and Similisan Sleeplessness Relief. I'm tempted to try them all. DS will not drink chamomile tea despite my best efforts.

Melatonin shows "immediate" results (no build-up), but you need to be "ready" for sleep; if you give him the melatonin and he's running around it's not going to knock him out. If you can keep him still for 15-30 minutes (perhaps reading stories) it has time to take effect.  What is the melatonin dose you are using? It may not be enough. We started at 1mg (6yo) but ds initially needed 3mg to show any effect. Currently, at 8yo, he takes 3mg regular melatonin and 5mg time-release though I may try cutting back on that since he's not in school now. We also use room darkening curtains and a sunset dimmer light that turns his lamp off after 30 minutes; there are actual light fixtures available that are both "sunrise" and "sunset." Ds also has a CD player; I have a couple Kenny Loggins CDs ("Return to Pooh Corner" and "More Songs from Pooh Corner") and Wei Lana's (yoga) children's CD that has a wake-up song and a go-to-sleep song on it that ds sometimes chooses to listen to at bed time. We also did joint compressions, brushing with a therapy brush, then lotion before bed which seemed to help; it was difficult for us to fit in at night and we ended up moving it to the morning this year to help with ds' morning grumpiness and/or hyperactivity.

I don't like chamomile tea but I do like Sleepytime Tea; though Sleeptime Extra is the version that contains the herb said to truly influence sleep. I find Sleepytime to be a sweet tea but Sleepytime Vanilla is even better . My ds actually likes Sleepytime but it's easier to use the melatonin.

[Lollybrat]

I'm coming late to this conversation, but I wanted to share some of our experiences.

My son just turned 8. He received an official diagnosis of PDD-NOS a week after he turned 3. When he was 5, the developmental pediatrician and psychologist changed his diagnosis to Autistic Disorder. They felt that as he developed he fit more of the criteria for AD.

Regarding sleep problems:
DS has had a lot of sleep difficulties: night terrors, nightmares, problems falling asleep and staying asleep. Last year, DS started waking up every 2 hours needing to be held. It was like having a 50 lb. newborn. We use melatonin to help him fall asleep and that really helps. But it did not keep him sleep. So we got him a weighted blanket for his bed and it made a HUGE difference! The blanket provides the deep pressure he craves and he now wakes only once a night (most nights). It's been amazing.

[Heba]

9yo DS (aspergers/dspraxia) has never had sleep issues, plus I absolutely cannot and would not say that what worked for us would be appropriate for you, but although we night-weaned at some point (can't remember when), he breastfed until past the age of 3 and given his issues now (which we were unaware of then), I am eternally grateful that we did this. We carried him in a sling a lot, we co-slept, and instinctively did all the things which I now believe to promote attachment.  I really do think that his issues would have been worse today if we had not done those things when he was younger.

Is this a partial answer to your second question above?  Maybe, but based only on my experience.  

Your ds is still very little, and needs you; keep him close and enjoy him.  I would agree with your healthcare practioner in that over-reacting to your diagnosis would not be helpful - but of course that is easier said than done, and in any case, your reaction is your right, and not "over-reaction."  Give yourself time to accept the diagnosis, and accept it for what it is - a tool which will help your child become everything that he was made to be.  It's OK - normal - to be shocked, frightened, sad, overwhelmed, whatever you may or may not be feeling.  

My son, incidentally, never "regressed."  I don't think regression is a sine qua non of ASD.

Re. reading, the book I've read most recently is "Freaks, Geeks, and Asperger Syndrome" written by a teenage boy with Asperger's.  He also mentions his younger brother with Autism.  Although it might not speak directly to your situation, you may find some of it helpful and/or reassuring.

*Hugs* and hang in there.  There's a lot to learn about ASD, and a lot to discover about your son as he grows and develops, but if you want company along your journey, we're here :).

[Heba]

Oh, if you want to chat about dietary interventions, I'm happy to share our experiences with you.  We've had great results with various things, but are still looking for more answers.  We're currently supplementing DHAs, completely artificial-additive free, low-oxalate, and now looking at GAPS.