If you suspect apraxia .. - Mothering Forums
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#1 of 21 Old 03-10-2010, 03:16 PM - Thread Starter
 
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.. where do you go to have it assessed? Developmental pediatrician? I had the EI people here and he's in 2x/week therapy for unidentified speech delay, and (after only 3 sessions) the therapist says he presents like no-one she's ever seen (not talking apart from the 20ish words that get his needs met, though very observant, understands everything, doesn't try to talk and do it wrong/get frustrated because he can't -- just no apparent interest in trying).

He does have a couple of very hazy apraxia markers -- stuff all kids do when they're learning to talk, like substituting sounds; it's just that he's 27 months -- and from what I'm seeing online, EI people are not the ones to go to for apraxia dx.

Thoughts?
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#2 of 21 Old 03-10-2010, 03:27 PM
 
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Our SLP was the first to diagnose. Then her otolaryngology team. Have you come across The Late Talker? It's helpful.

The thing about your little one being 27 months is that they are reluctant to dx that young. Add to that some common reluctance to diagnose it all, and it's challenging.

Good luck!!!!

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#3 of 21 Old 03-10-2010, 03:42 PM - Thread Starter
 
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Hadn't seen that book yet -- will check it out, thanks!

And .. what's an SLP?
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#4 of 21 Old 03-10-2010, 04:41 PM
 
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Our SLP (speech and language pathologist) suggested either a neurologist or developmental pediatrician for the apraxia diagnosis, and our ped is sending us first to the neuro. On our own, I also have started the process for the developmental ped though, but more because we think there might be an ASD and not just apraxia. From what I have heard also, it is hard to get the apraxia dx before 3, and my son isn't even two yet, but we are trying because it seems pretty obvious and then our insurance might cover speech which they won't now.
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#5 of 21 Old 03-10-2010, 05:20 PM - Thread Starter
 
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Hmm. Helpful! Thanks! More to research!

APToddlerMama, you said it seems pretty obvious you're dealing with apraxia -- what red-flagged it as that obvious to you? I'm sort of alone in the dark with Dr. Google right now and that's always a dangerous place for me to be.
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#6 of 21 Old 03-10-2010, 05:32 PM
 
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Originally Posted by bluejaunte View Post
Hmm. Helpful! Thanks! More to research!

APToddlerMama, you said it seems pretty obvious you're dealing with apraxia -- what red-flagged it as that obvious to you? I'm sort of alone in the dark with Dr. Google right now and that's always a dangerous place for me to be.
Well, I used to work in EI myself for one thing. My son is 23 months and only has two words (including mama) and a very limited number of sounds. For instance, he has never ever made a "T" sound which infants are typically making. His receptive language seems on track though and he is truly struggling to get the words out. I can see him moving his mouth and nothing comes out. Even to say "mama" sometimes takes several tries or a long pause where he is clearly thinking about what he needs to do to make that sound happen.

Also, sometimes he says a sound almost by accident, and we get all excited and repeat the sound back to him. Nearly 100% of the time, he cannot say it a second time and gets really angry that he can't say it, starts shaking his head "No" at us, etc. He made a true EEE sound the other day instead of "ehhhhh" and then when we repeated it, he got mad. When we said "ehhhh" again, which is a sound he can easily say, he was very happy and started repeating it again. Said "EEE" and bam...very angry. It is like he knows he can't do it and he's frustrated and doesn't want to try. He said "puppy" one day while pointing to one and even his SLP heard it, and then never again. I just really have a gut feeling that this is what is going on with him, but I know there is more to it with him too. good luck!
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#7 of 21 Old 03-10-2010, 06:19 PM - Thread Starter
 
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Thanks for that. I'm still not at all sure if apraxia's what I'm dealing with!

I went into detail about his speech situation in this thread: http://www.mothering.com/discussions....php?t=1201878

Would you mind looking at it (as you have an EI perspective) and tell me what you think is going on? I'd really appreciate it.
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#8 of 21 Old 03-10-2010, 08:27 PM
 
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Hi!!

Several people started throwing around the word for Connor around age 28 months or so, his speech therapist, his EI teacher, his ENT, even the surgeon at the cleft palate team used the word in one of his clinic notes.

I took Connor to a Dev Ped who specializes in hearing loss (Connor has hearing loss as well) at age 30 months. She said wait until age 3, and referred us to a specific SLP (who is the head of Speech Pathology at Cinci Childrens, and is a member of the Apraxia team and the VPI team).

We just saw that SLP last week, and she officially diagnosed Apraxia.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#9 of 21 Old 03-10-2010, 08:54 PM - Thread Starter
 
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Hi, 2boyzmama -- Would you mind telling me briefly what his speech is/was like? From what I'm seeing re apraxia, kids do a lot of frustrated trying-to-talk. Mine doesn't. Doesn't really bother trying much! He's a perfectionist, though, so I'm really in the dark as to whether this is just one of those things he'll tinker with on and off until he's got it down, or whether there's an underlying problem.

Looks like I'll look into developmental pediatricians! I thiiiink there's one on his insurance nearby. We had a speech pathologist here with the EI team who assessed him, and I did. not. like. her. one bit! Which isn't to say they're all like her. How do you get in touch with one outside of EI? Does one get a referral from the normal ped? What about the dev ped? Will I need a referral? Or can I just make an appointment?

I'm just a bundle of questions! Thanks in advance & apologies for same
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#10 of 21 Old 03-10-2010, 09:31 PM
 
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Well, keep in mind that Connor is not your typical Apraxic kid, because he has a whole host of other medical issues and structural defects. So we were initially going off the assumption that he had a submucous cleft palate, velopharyngeal insufficiency (VPI--a soft palate dysfunction or defect), and a speech delay. All three of those are extremely common in his syndrome (he's missing a piece of chromosome, a syndrome called Velocardiofacial Syndrome, or DiGeorge Syndrome). In fact, the renowned expert in the syndrome says that apraxia is a mis-diagnosis almost 100% of the time, and that it is nearly always cleft palate and/or VPI.

BUT...we are only able to find "subtle suggestions" of a cleft or VPI, no one (not his ENT, not the surgeon on the cleft team, not the surgeon on the VPI team, not his speech therapists...no one!!) can find the cleft and there are no signs of VPI with speech (signs of it with swallow though). All that left was apraxia!!!

I can write out for you exactly what his last assessment said, but I left the paperwork at work (where I scanned it to send to his IEP team) so that'll have to wait until tomorrow.

His speech...he has basically one vowel sound "ah" and a very limited number of consonant sounds (mostly the bi-labial sounds, m, b, p) and some of the tongue sounds (can't remember the term for them...d, an occassional t) He is capable of imitating nearly any one-word utterance, particularly if it only one or two syllables. But he doesn't use many words spontaneously (maybe 20?). And the longer or more complex the word (particularly if there are vowel sounds) the more errors he makes. He will substitute a bi-labial consonant and the "ah" vowel inevitably. So, he can say "I" "want" "more" "milk" (sort of, approximations of each word) but if he tries to say the whole sentence, it sounds like "ah wah ma MA"

We chose ASL with him because he also has hearing loss, and we initially thought he would have just the typical speech delay so common in his syndrome (which means intelligible speech may be delayed until well into elementary school) so we chose to teach him ASL. It has worked wonders!! His verbal expressive is 15-18 months, but his ASL expressive is 36-40 months!!! We started signing with him at 11 months old, and his response has just been fantastic! So much so that we are considering a school for the deaf (they have an apraxia program that is full sign and full verbal)

If I get a chance, I'll type out what the SLP said during his last eval.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#11 of 21 Old 03-10-2010, 09:32 PM
 
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Oh, and to answer your other questions...

My insurance allows for self-referral, but most specialists require a referral anyway. Your ped can refer you, or often times EI can refer you also. Ask both your ped and the people in EI. Ask them who they recommend your son see, they often know the specialists really well, and know which ones are more familiar with certain conditions.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#12 of 21 Old 03-10-2010, 10:18 PM - Thread Starter
 
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Thanks so much!
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#13 of 21 Old 03-11-2010, 12:18 PM
 
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Okay, get ready, here is the write up that accompanied his "official" diagnosis...lots of SLP-ish terms!

*********************
"As the mother reported, Connor communicates primarily by sign language. Speech is very limited. An assessment of speech production abilities revealed the ability to produce bilabial sounds (b, m) and lingual-alveolar sounds (d, n) with fair consistency with single vowels. The voiceless sounds (p, t) are typically voiced. Vowels are often distorted. The bilabial and lingual-alveolar sounds are often substituted for each other or omitted on the single syllable level and their nasal and oral cognates are often substituted for each other. Connor is able to produce some fricatives (s, sh) in isolation, they revert to lingual0alveolars (usually /d/) when attempted in a syllable.

Resonance is normal. There is no nasal emission on the phonemes that are produced spontaneously or on prolonged sibilants.

The oral examination showed an intact palate and no evidence of a submucous cleft on visual inspection. The levator muscle appears intact in midline. A bifid uvula was not noted, although has been reported with palatal movement.

Despite the diagnosis of VCFS, there is no evidence of a velar abnormality on the oral surface and there is no evidence of velopharyngeal insufficiency (VPI). Instead, Connor demonstrates apraxia of speech."

**********************
SO...there you go

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#14 of 21 Old 03-11-2010, 12:32 PM - Thread Starter
 
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Thanks!

And apraxia is treated with intensive therapy, right? Anything else?
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#15 of 21 Old 03-11-2010, 12:35 PM
 
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Intensive therapy, there is some evidence that EFA supplements can help (Omegas), and some sort of augmentative communication (sign language, PECS, assistive communication devices)

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#16 of 21 Old 03-11-2010, 01:47 PM - Thread Starter
 
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Yeeeah, I should really try him on signs. I've been trying to focus on vocal speech. And I tried him on fish oil, starting about a week ago, and it seems to be giving him tiny little nosebleeds. Nothing's ever easy.
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#17 of 21 Old 03-11-2010, 01:48 PM
 
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His SLP first said he had Apraxia. From there we saw a pediatric Neurologist. He's also been to the speech dept at my local university. He's been in speech therapy since he was 2 1/2. He used to cry and bang his head on the floor. We use a Tango and PECs in addition to his natural speech. He speaks better much now but still tests as speaking like a child less than 2 years old. He used to say "Ah ah oh oh ee" for "Mama cocoa please. We tried the intensive fish oil therapy as well as high doses of vitamin E with no effect other than loose stools from too much fish oil.
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#18 of 21 Old 03-11-2010, 02:11 PM - Thread Starter
 
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Yup, mine's got the loose stools going on too. Loose oily fishy smelling stools.

The irony is that he's also getting iron supplements for pre-anemia (was anemic, resolved with supplements, but his iron stores were never high) and when I took him to the hematologist last month, he asked if J got nosebleeds often (to figure out whether he's losing blood or just not getting enough iron), and at that time I could say no, never! Now he's had several since. Tiny ones, but apparently the fish oil can make them lose hidden blood in the urine and poop, or nosebleeds that go post-nasal so I never see them.

So it's looking like I have to choose between treating the iron stores and treating the lack of speech. *headdesk*
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#19 of 21 Old 03-12-2010, 01:02 AM
 
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:hi: I'm posting here as a SLP grad student about to graduate (in May). Hope you don't mind me poking in from time to time and giving thoughts/opinions when I have time.

Like others have said, it's *so* hard to diagnose apraxia before age 3. We say "apraxic in nature" because kiddos with speech delays sometimes look like they have apraxia, and it's hard to differentiate before 3 what's a delay, a language/speech disorder and what's apraxia. . .

As far as finding an SLP. . . I would look here, and at what your insurance covers, of course. If there's a university near you that has a speech-language program, I'd recommend looking at that for services. They're generally progressive and very reliable as to what they recommend diagnose. And it's generally a little less expensive than seeing a private SLP. Many insurance cos don't like to cover our services, I've discovered.

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Originally Posted by 2boyzmama View Post
Intensive therapy, there is some evidence that EFA supplements can help (Omegas), and some sort of augmentative communication (sign language, PECS, assistive communication devices)
Can't speak to the supplements, but the augmentative Communication devices (AAC) and sign are very helpful. Your SLP can do an assessment to find out what your child's communications needs are and how AAC might help him be less frustrated.

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Okay, get ready, here is the write up that accompanied his "official" diagnosis...lots of SLP-ish terms!
This made me giggle. Should you ever need a translator. . . . .

Kate (30), mama to Madi (4/18/08) and Jacob Douglas (10/8/10)
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#20 of 21 Old 03-12-2010, 02:31 PM - Thread Starter
 
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Oh, I LIKE that linky. Thanks so much!
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#21 of 21 Old 03-17-2010, 02:38 PM
 
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Thanks for that. I'm still not at all sure if apraxia's what I'm dealing with!

I went into detail about his speech situation in this thread: http://www.mothering.com/discussions....php?t=1201878

Would you mind looking at it (as you have an EI perspective) and tell me what you think is going on? I'd really appreciate it.
I'll pm you since I'm so late in responding...
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