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What else could this be? (frustrated with therapists and docs not hearing my concerns)

post #1 of 20
Thread Starter 

I know I have posted before (a couple of times) and I am sorry for those who have heard this all before.

 

I have a (nearly) 3 year old little boy.  He was evaluated through EI just over a month ago.  His 'diagnosis' was Mixed Developmental Delay with his speech/language skills around the 18 month mark (receptive & expressive). 

 

I have my suspisions of apraxia, sensory processing disorder and also autism spectrum disorder.

 

The biggest thing about his delays is his speech/language.  Almost everything he says is a copy of something he heard before (this applies to short phrases).  He will say some very simple 1-2 syllable words randomly and sometimes in context (dog if he sees a dog).  He is inconsistent at best.  He has horrible meltdowns when he can't tell us things.

 

Few examples:

1. My older DS started swimming lessons yesterday morning.  I took along a big bowl, water and various things he could play with while brother was in the pool.  (He loves water play!)  So when it was time to go, I went and dumped the water out...  He had a huge meltdown over it and would just say water & point where I poured it out. It took us 30 minutes to get him to the truck and he still wasn't happy.  He will throw himself all around and down on the ground.  He just kicks, screams & cries.  I try my best to figure out what he needs/wants by asking him yes/no questions but he can't even respond to those when he gets upset.

 

2.  We also had speech yesterday (3rd visit ever).  The first 2 visits there I told the CCC-SLP lady that I he mostly would copy/imitate words/short phrases and that he really didn't talk otherwise.  She apparently didn't care what I had to say since she actually told me (on 2nd visit) that she "had never had a child talk so much in just 2 sessions".  My mouth almost hit the floor when she said this because he had not said anything new.  Only copies of what she said or his regular copy speech.  (I was almost ready to leave that SLP after this...)

 

So yesterday I went in with my apraxia 'checklist' and gave it to her and told her my concerns YET again.  She did seem to listen and watch throughout the 30 min session but I still think she is just trying to brush it under the rug.  I don't think they deal with/see many cases of apraxia in our rural little town.  She did get to see for herself that he was in fact copying things and not making spontaneous speech.

 

3.  He can say 'elephant' or more precisely 'eh-e-pha' but can't say something like ma-ma.  He uses "da-da" for me, his dad & when he needs something he will call out "da-da"  He doesn't call out "help" despite us teaching him this.  He can say it fine if prompted from us first. 

 

4.  At his 2nd speech session, the SLP kept saying "uh oh, it's stuck" in reference to a frog toy that kept getting stuck.  He brought that phrase home and that is almost all that he could/would say for the next 5 days.  He would even do it in the same pitch & tone as her.  It was like a parrot copying someone.  Then after those 5 days of saying it everytime he got frustrated or wanted something - he just stopped.  He used to say other words like purple but I haven't heard that (and others) in a long time.

 

5.  He can recognize his ABCs and numbers by sight and say them but can't say them if you just ask him questions about them.  As a matter of fact, he doesn't answer any questions we ask him except for some yes/no but this is inconsistent at best.

 

6.  When we tell him "I Love You", he never says it back.  He only makes the sound of a kiss but doesn't pucker his lips.  He also can't/won't stick out his tongue on demand or kiss with his lips puckered on demand.

 

-----------------------------------

 

So before this gets too long...

 

What do you all think?  Does this sound like Apraxia?  Is there anything else this could be that I don't know of?  I am really trying my best to get his care providers to help me figure this out but I feel like noone is listening to me.  I just want to help him find his little voice.  Life for him can be quite difficult (like many of you experience as well).

 

Please someone help!

 

 

post #2 of 20

It sounds like Mixed Expressive Receptive Language Disorder.

 

http://www.brighttots.com/receptive_expressive_language_disorder

 

http://www.psychtreatment.com/mental_health_mixed_receptive_language_disorder.htm

 

It can cause behavior problems, especially in children who don't know what is going on. 

 

 

post #3 of 20
Thread Starter 


 

Quote:
Originally Posted by RiverTam View Post

It sounds like Mixed Expressive Receptive Language Disorder.

 

http://www.brighttots.com/receptive_expressive_language_disorder

 

http://www.psychtreatment.com/mental_health_mixed_receptive_language_disorder.htm

 

It can cause behavior problems, especially in children who don't know what is going on. 

 

 


I just looked in to that one (thanks for the reply).  I don't think that is 'it' though.  I saw that typically those with MERLD can produce sounds and can be understood.  He can only produce sounds by copying.  Also he is mostly only understood by me and even I can't make out what he says sometimes. 

Also he doesn't talk enough spontaneously to consider some of the other points like 'um' (he doesn't use that).  He also doesn't repeat back any questions you ask.  He only repeats phrases that are well 'rehearsed'.  He rarely will imitate someone right away.  Only after having had the chance to hear a phrase over & over & over again will he be able to reproduce it.

 

Does Apraxia sound that far off base?  He fits that category the best of all of them I have been able to research.

http://www.apraxia-kids.org/site/apps/nlnet/content3.aspx?c=chKMI0PIIsE&b=788447&ct=464135

 

Thanks again!

 

post #4 of 20
Thread Starter 


 

Duplicate post

post #5 of 20
Thread Starter 

Anyone else? 

post #6 of 20

I'm sorry-it really sounds like you have concerns that you don't think have been addressed.  I may have asked this in a different post, but have you had an eval with a developmental pedi?  

post #7 of 20

My son is also three and apraxia, sensory processing, and ASD have all been thrown out as potential diagnoses (and actual ones depending on who you talk to but that is a whole other story).  I don't know the answer to your question, but to me, it doesn't sound like apraxia really, and sounds more like an ASD, but I could be way off.  The important thing is for you to get into contact with people who can actually answer your questions.  Have you met with a developmental pediatrician?  A neurologist?  These would be the two people I would want to start with, and who we did start with for my son.  In our area, it takes about a year to even get into see a developmental ped...  Here though at least, they are very hesitant to diagnose apraxia and ASD before 3 so it doesn't really put you behind anyhow.  Also, I have worked in EI.  If you don't like your therapist, ask for a new one.  I'd give her a chance though for a while if your only concern is that in the few sessions she's had with your son, she hasn't figured him out yet.  My son has been in PT on and off since 2 or 3 months old (hypotonia) and speech for over a year and a half, and they still don't have him figured out.  I am a crazy researching mama and have a strong background in development and psych and don't have him figured out either.  I bet I've spent hundreds of hours researching trying to figure it out too.  I'd be more concerned if my SLP came in and labeled my DS without getting to know him.  Good luck...

post #8 of 20

There are a few things that you list that sound like apraxia (only being able to repeat after many rehearsals, losing words that he once said, not making consistent sound errors etc.) however, apraxia is really hard to diagnose.  I am an SLP and would be very hesitant to start labeling a child before having plenty of time to see what is going on.  3 sessions is not enough to get the information you need, especially when you are initially just trying to establish a rapport with the child.  Typically when you are looking for apraxia you have to rule out language delays (receptive/expressive) and severe phonological processing disorders (patterns of sound substitution errors).  The repeating back of phrases is called echolalia and is often associated with autism spectrum disorders.  

It sounds like you are a very involved mama who wants the best for her child.  I may give it a little more time in speech therapy before pushing for a more firm diagnosis.  You may want to ask the SLP if they are familiar with Apraxia and if they have worked with children with Apraxia before.  If they don't have a lot of experience in this area you could ask if any of their colleagues would be able to observe or evaluate your son.

 

Imitation is a strong tool for learning language and is used quite a bit in speech therapy.  If your son does indeed have Apraxia, his therapy sessions would consist of a lot of repetition of specific targets to help him with the motor planning needed to make the word.  Hopefully spontaneous speech will come soon but imitation is a stepping stone to that.  

Good luck and I hope you get some answers about your son's needs.

post #9 of 20

Perhaps an auditory processing disorder? I know a child with symptoms similar to your description, that was just diagnosed with APD. If you also have concerns about sensory processing, see an occupational therapist, as they are the ones trained to handle these issues. Hang in there, mama! Hope you get some answers soon!

post #10 of 20

Hello!  I have a 6 yr old son who had a lot of the same symptoms as your ds- the developmental ped said his speech was "scripted".   It wasn't echolia because he didn't repeat things that other people said right away- but most of what he said was a copy of what he heard others say and couldn't really come up with his own thoughts out loud.  Anyway, that was when he was 2 and 3 and now he doesn't do that anymore- he speaks like a normal 6 yr old.  I think that was just his way of learning.  I did get him speech therapy- we did the therapy with another boy who did not have any of those symptoms, he just had trouble pronouncing certain letters but it was helpful for ds to hear and be around another boy and hear how he spoke.  The therapist would help ds come up with new and different ways of speaking and he was more motivated because he wanted to play with his friend.  It worked really well- I also put him in preschool a couple days a week and that seemed to help, too.  He never got any type of diagnosis, just a speech delay but I really think being around other kids his age (without me there to tell the kids what he was trying to say) helped him learn how to communicate effectively because that was the only way to make friends and when he did have trouble, the therapist or the teacher was there to guide him but not "rescue" him as I would have probably done.

post #11 of 20

Has he been tested for ASD?

post #12 of 20
Thread Starter 
Quote:
Originally Posted by EarthRootsStarSoul View Post

Has he been tested for ASD?



Not yet.  I really have been pushing all sorts of people to get this going but the best we have gotten has been a 'wait & see if speech therapy helps him' from the neuropsychologist at our Autism Clinic.  :(

post #13 of 20
Quote:
Originally Posted by countryduck View Post
Not yet.  I really have been pushing all sorts of people to get this going but the best we have gotten has been a 'wait & see if speech therapy helps him' from the neuropsychologist at our Autism Clinic.  :(

 

As a pp said I would schedule a developmental ped. As it can take awhile to get an appointment I'd make one now and make sure it is scheduled after his third birthday since that seems to be the minimum age for the expected diagnosis for most doctors. An advantage to the wait is that you will have some therapy documentation to show them as well. Also, having the dev. ped. report should carry some weight with the clinic should you try to return there.

 

I'd get a binder, dividers w/folders, and a 3hole agenda/calendar, to keep track of the evaluations and your ds' day. The calendar was great for me to keep track of ds' behavior (ADHD) between therapy and Dr.s visits. Documentation is your friendsmile.gif.


Edited by Emmeline II - 6/20/11 at 12:49pm
post #14 of 20
Quote:
Originally Posted by countryduck View Post

Not yet.  I really have been pushing all sorts of people to get this going but the best we have gotten has been a 'wait & see if speech therapy helps him' from the neuropsychologist at our Autism Clinic.  :(



Sometimes you really have to push for it... Where we live, it takes a year to get in to the clinic, so I pushed really hard and am glad I did.  Worst thing that can happen is that he's doing great and you cancel. 

 

post #15 of 20
Quote:
Originally Posted by EarthRootsStarSoul View Post

Has he been tested for ASD?



I was wondering this as well.  My DS (8 yo) has a diagnosis of Aspergers, given last year.  It's my understanding that "they" (lol) don't like to diagnose Aspergers in kids under 8, but his therapist, her supervisor (through a grad clinic at my university, so grad student + clinical supervisor agree), and myself were all quite comfortable/confident in his diagnosis.  DS did the mimicking thing too - your anecdote about how the speech therapist's phrase was repeated rang so true to me.  DS was never considered delayed - always has had a ridiculous vocab etc - but man, the mimicking nearly drove me crazy for a while there!  DS had enough phrases to repeat back that he could work them into conversations with people who weren't around him much and they wouldn't even notice lol.  I would overhear him saying one of his movie lines etc in the middle of a conversation - it would make sense, would fit with the conversation (often, at least lol), but *I* had watched that movie with him last week and had heard him repeat the phrase (in the same tone, same pacing, etc as the movie showed it) and knew where it came from. 

 

 

post #16 of 20

Your son sounds like mine at 3 to a "t" with the exception of the letters and numbers.  He just finally caught up with those this past year (he turns 6 in 2 weeks).  He carries a diagnosis of SPD, articulation delay/apraxia, at risk for ADHD, at risk for central auditory processing delay (which is what your son sounds like he may be facing).  We also recently had genetic testing done and found that he has a deletion at 16p11.2.

 

You need to see a developmental pediatrician.  He's too young for a CAPD diagnosis but they can get a feel for whether or not he's heading down that path.  Get the book "Like Sound Through Water".  It's a quick read, heart wrenching (especially if you are able to see your child in the story) but gives hope.  Feel free to PM me if you have questions.

 

Julie

post #17 of 20
Thread Starter 

Wow I have a feeling my son is headed down that same path (SPD, apraxia, at risk ADHD & CAPD).  I appreciate your response.  Is there a specific type of genetic testing you did?  Or did it just look for any 'abnormalities'?
 

Quote:
Originally Posted by SpottedFoxx View Post

Your son sounds like mine at 3 to a "t" with the exception of the letters and numbers.  He just finally caught up with those this past year (he turns 6 in 2 weeks).  He carries a diagnosis of SPD, articulation delay/apraxia, at risk for ADHD, at risk for central auditory processing delay (which is what your son sounds like he may be facing).  We also recently had genetic testing done and found that he has a deletion at 16p11.2.

 

You need to see a developmental pediatrician.  He's too young for a CAPD diagnosis but they can get a feel for whether or not he's heading down that path.  Get the book "Like Sound Through Water".  It's a quick read, heart wrenching (especially if you are able to see your child in the story) but gives hope.  Feel free to PM me if you have questions.

 

Julie



 

post #18 of 20
Quote:
Originally Posted by countryduck View Post

Wow I have a feeling my son is headed down that same path (SPD, apraxia, at risk ADHD & CAPD).  I appreciate your response.  Is there a specific type of genetic testing you did?  Or did it just look for any 'abnormalities'?
 



 


We did a micro array and fragile X.  We knew he didn't have fragile x but it's part of the testing process.  Our challenge with genetic testing is... it's such a new science - that many times they will find what they think is an abnormality, then they test the parents and if the parents are NT they know that isn't the issue.  Our son is adopted from Guatemala so no way to test his parents.  We went ahead anyway because they have identified some genetic issues an luckily for us - 16p11.2 is a known issue.  So, I guess what I'd tell you to do is ask your son's developmental pediatrician (or regular pediatrician if you don't have a DP yet) to run a micro array.  IMPORTANT - please make sure your insurance will cover it as it's several thousand dollars.  If you have a good children's hospital in your area (we use CHOP in Philadelphia), they would probably be the best place to get the testing done.

 

post #19 of 20
Thread Starter 
Quote:
Originally Posted by SpottedFoxx View Post




We did a micro array and fragile X.  We knew he didn't have fragile x but it's part of the testing process.  Our challenge with genetic testing is... it's such a new science - that many times they will find what they think is an abnormality, then they test the parents and if the parents are NT they know that isn't the issue.  Our son is adopted from Guatemala so no way to test his parents.  We went ahead anyway because they have identified some genetic issues an luckily for us - 16p11.2 is a known issue.  So, I guess what I'd tell you to do is ask your son's developmental pediatrician (or regular pediatrician if you don't have a DP yet) to run a micro array.  IMPORTANT - please make sure your insurance will cover it as it's several thousand dollars.  If you have a good children's hospital in your area (we use CHOP in Philadelphia), they would probably be the best place to get the testing done.

 




Thank you!  We actually just got a referral to a developmental ped at Brenner Children's Hospital here in NC.  We seem to have lucked out because they think they will be able to get us in for an appt within a month or so.  :)  I am SO looking forward to that appointment.

post #20 of 20

That's great!!  One month is very quick.  Push for the genetic testing.  Personally, I think it should be part of the screening process with ANY developmental delay.  The more we learn in genetics, the closer we will be to understanding what's going on with our kids.  JMHO

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