Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Childhood Apraxia


skipper30

Recommended Posts

skipper30 Enthusiast

Is there anyone here familar with Apraxia in children?

TIA

Dallas


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Fiddle-Faddle Community Regular

My nephew was diagnosed with apraxia of speech. Is that what you are talking about?

skipper30 Enthusiast

Yes. Do you mind telling me how old your nephew is and how is is progressing?? We have one who has a diagnosis that seems to be leaning that way. I am just wondering what to expect. (Yes I know that all children are different..but it would be some sort of a reference point for us.)

Fiddle-Faddle Community Regular

Well, he is 8 years old, and has had a lot of speech therapy. He didn't speak at all for at least 2 years, maybe 3--I'm not sure because my brother and sister-and-law didn't think there was a problem at first and really delayed any kind of testing. Things weren't helped by the fact that the nanny who took care of him while his parents were at work basically left him alone because he never fussed.

I also think that he is autistic--but, again, they think that he is just fine and get offended if I suggest anything. He has no eye contact, he doesn't respond to his name, and he seems unable to maintain back-and-forth conversations. He is obsessed with a website game about penguins, and doesn't seem to understand that it isn't real. I don't know anything about speech apraxia, so I don't know if that fits, but it does seem to fit on the autistic spectrum.

When he did learn to speak, he spoke in a very strange sing-song tone. He now speaks more normally, except for some individual words here and there that come out in a very sing-song tone. He is extremely musical--his mother is a very talented pianist, and his siblings all play instruments (he plays violin), so maybe that is at least part of the reason? At any rate, he is now able to speak quite clearly, and is able to answer direct questions (when he feels like responding). Academically, e is very bright, and is in all mainstream classes at school. He has playdates with friends, and my brother tells me that all they do is play video games.

I also have a friend whose son (I think he is 10) was diagnosed with apraxia of speech as well as PDD. She had kind of the opposite approach--she tackled everything head-on, full force. She also worked, but instead of hiring a nanny, she went to the local university speech therapy program, and hired students who were studying to be speech therapists as baby sitters. So, every possible moment was used to teach him what he needed.

I believe this kid lost both diagnoses several years ago, and is doing really, really well.

I don't know if this helps you any; I know much more about autism than I know about apraxia. Is there a gray area in between?

skipper30 Enthusiast

Jake is 2 1/2 and is in speech, for almost 2 months. The SLP has noticed that he has very limited tongue movement and poor muscle tone with his lips. He is VERY behind verbally. He tested out at around 9-18 months. He tries to say a lot and is very social...he just has a very hard time with the words. His receptive language is very good. He just seems to understand way more than he can express. He has a few favorite sounds and uses those most of the time. Other's can not understand the vast majority of what he says.

The SLP said that he has a lot of sounds, he just can not coordinate them to use together.

I really do not think he would be considered for PDD-NOS or Autism...but maybe that is just the mommy in me wanting him to not have it.

I am just a littel overwhelmed with the thought of another child having something "major" to deal with. But then, it could definately be so much worse!!

Thanks for sharing!! :)

Dallas

Fiddle-Faddle Community Regular

When he turns 3, you might consider signing him up for Suzuki violin lessons. It is very different from traditional violin lessons. The kids learn to play by ear, way before they learn to read music (just as we learn to speak language before we learn to read it), and they are given a celiac disease (of really pretty, and easy songs played by a great violinist)to listen to every day. These are the same songs they learn to play, starting with Twinkle Twinkle lLttle Star and some rhthmic variations. The emphasis is on learning to make a beautiful sound and, eventually, to play beautifully (NOT to become a child prodigy). The classes are fun, the kids love it--and I am convinced it develops some much-needed neurological pathways.

Both my nephew and my friend's son take Suzuki violin lessons (and my son does, too). It does require one parent to be present at all lessons AND to practice with the child (actiing as a sort of teacher's assistant ) every day. And, no, you do not need to have ever played an instrument before; the idea is that the parent and child learn together at the beginning.

A friend of mine had a severe brain injury from a horse back riding accident, and was in a coma for 4 motnhs. INitially, she lost all speech, but was eventually able to relearn speaking, although she sounds very different from what she sounded like before the accident. However, a mutual friend (who is a voice teacher) noticed that Becky could SING with perfect enunciation--but she had great difficulty pronouncing words clearly when she tried to speak them. The voice teacher said she had noticed something similar with friends who had had strokes. She couldn't explain it, except to speculate that the neurons fired correctly when singing, for some reason,a nd not when speaking.

I tried to make my friend sing everything, hoping that it would soon translate into being able to speak normally, but she said (truthfully) that she couldn't sing worth a darn before her accident, so she wasn't going to start now! But I still wonder.....

ravenwoodglass Mentor

My youngest child lost all her speech, she had been an early talker, at around 18 months. Her only form of verbalization was screams and biting. At first autism was of course thought of but we became very aggressive in trying to find aout why and it turned out that an ear infection that she had at about a year had filled her ears with fluid that never drained. We began putting in tubes, she ended up with 5 sets and eventually some hearing damage from the scars but it enabled her to hear well enough to learn to speech again with the help of a speech therapist. Her speech was very 'baby' like until she was in about the 3rd grade. She is also a celiac but was not diagnosed till age 17. This may have no relation to what is going on with you child but make sure they do through hearing tests, they had to sedate my D for hers and we had to travel to a major childrens hospital for the tests as the local hospital did not have the equipment. Make sure they have ruled out unknown hearing problems.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GFBetsy Rookie
The kids learn to play by ear, way before they learn to read music (just as we learn to speak language before we learn to read it), and they are given a celiac disease (of really pretty, and easy songs played by a great violinist)to listen to every day.

Does that ever bother the parents who never had to deal with celiac before they started music lessons? :lol: Aren't the auto correct features fabulous?

Skipper -

Have you tried ASL? I am not suggesting that you give up on the speech therapy, but you need to find a way to let him communicate in the meantime. And sign language can also help children connect meanings with individual words. And you help him work on the words at the same time as he signs, so that he will improve his pronunciation and the muscle tone in his mouth at the same time as he learns to communicate with his hands.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748

    Megannnnn
    Newest Member
    Megannnnn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.