2.5 year old...what should we be doing..?

[spotness]

I'm posting for a friend.  Her son, now 2.5 years has some problems:  at 6 days old, hospitalized for seizures - doctors concluded due to low calcium. Released after 5 days. Normal milestones otherwise, except that he doesn't speak.  NOT A WORD (not even NO, or MAMA).  He has never babbled or attempted to make any sounds other than grunting. His hearing is fine - tested twice. As far as language goes: he understands when spoken to, follows complex verbal tasks, has a fairly large 'understood' vocabulary, and when 'grunting' to talk, his vocal tones follow speech patterns and inflections. You can almost have a whole conversation with him, he just does not enunciate the words;his mouth is closed the entire time. i do not see his toungue, cheeks or jaw move to attemt to articulate. But we do see that this situation frustrates him.
He also had a constipation problem for 3-4 months at 22 months old; he would tremble and cry and strain. The ped. gave a script for a stool softener, although this continued for the final 2 months even though stool was soft. But seems to be resolved now. The mother's concern is that she's only been referred to a speech therapist - who told her to essentially force him to speak if he wanted anything. The docs don't want to do an MRI 'cuz of concerns about anesthetic, but they've never seemed to be concerned, up until this visit, and even then it was a bit of 'wait and see'. We want to know what are some of the possible causes of this? Should she pursue other treatments or tests? Most research I've done, he doesn't fit any profile I can find. Most importantly, have you seen this before and would you expect it to resolve through speech therapy? or should we be looking for the cause?  Thank you so much for your time.

[Minda]

It's Melinda again, I forgot to mention that my son had a lot of problems with oral motor function, ie: puckering, blowing, over stuffing his mouth when eating (hyposensativity)and gagging from this, and he had difficulty licking his lips.  

He also has a problem with constipation.  I have never had to do anything but watch his diet and make sure he eats enough fruits and vegetables, but he only goes once every 2 days.  Making sure he is getting enough water, not juice ie:  apples juice.  A lot of people think that giving apple juice will help children go, but it can be constipating.  Bye

[Minda]

My name is Melinda and all three of my children have a neurological disorder called Apraxia of speech.  They are not sure what causes it but my son was 3.5 before he started speaking.  He would grunt, use gestures ie: taking his fist and putting it to his mouth with a sipping noise when wanted a drink.  He understood everything from the time he was a year old, but he stopped babbling at 2 months, and only said 2 words at 22 months.  He is now going to be four and speaks much more but still there are times I look at him and ask him to show me what he wants or is trying to explain.  He has had numerous evaluation and I had to discover this diagnosis on the internet and brought it to his speech therapists attention and she had him tested.  He is now going to start in a preschool for children like himself and I can't wait.  

I would stongly recommend he be tested for this.  They can do an apraxia profile and get a rough idea.  I went through my school district and they payed for it all.  I live in New York, but I think it is the same in many states.  I would love to here how he is doing.  ***@****.  Thanks and good luck.

P.S., If you say he is understanding everything and has a good concept of language, just cannot express himself, and is doing everything age appropraite, I highly doubt there is any other neurodisorder, ie tumors, syndroms etc.  I strongly feel this is what he has.

[winks]

Your friend's story is exactly the same as my son. Born Oct 99. He was admitted to the hospital at 5 days old for a fever. He then started having seizures.  They did a MRI and discovered that he had bleeding on the brain.  The bleeding was caused by an AVM that resolved itself. By age 2.5 he was communicating exactly like your friend's son. He had an understanding of a huge vocabulary, inflection, intonation and "sounds" for everything, but no real words. He saw a speech therapist for and evaluation, but never got treatment (insurance wouldn't cover).  The good news I have for you is that he started talking one day around 2years 9 months.He is now not quite three and talks huge sentences and hardly ever misses a word. I would have never thought this progress was possible in such a short amount of time. He obviously had it all stored in there, but couldn't get it out. I wonder if very early seizures has something to do with speech development?

  I would caution you, though, that your friend's son never had an MRI.  The Dr. would not know if there are other problems that exist.  My son now at 2yr 10 mos is having continued problems with the veins in his brain. If I did not know of his history right after birth we would not have been able to detect these current problems so quickly. Good luck to you, you are not alone.

[Shanny]

I know this sounds really simple. And you may have already checked this. But my neice couldnt anunciate words till she was 4 years old and acted just as you are describing this child. My neice had a Heart shaped tongue. She was litterally tongue tied. Other than that i cannot help. Best of luck.

[CCF-Neuro-M.D.-JT]

Although there are no guidelines set in stone regarding when a child should start speaking, generally they should have some words by 18-24mos. Some ped neurologists feel that a reasonable cutoff is 3 yrs. It sounds like there may be a delay in expressive language. The workup would include routine blood work, a metabolic screen, a genetic screen to look for diseases such as Fragile X and possibly an MRI and EEG. Autism may also be a consideration.


Having said that, I personally know of 2-3 people (one is now an ophthalmologist) who did not speak until they were 3 to 4 years old. So it's quite possible that the child is completely normal. But a full workup should be done to make sure nothing correctable is missed. There are also interventional programs offered through the school system like speech therapy that can be looked into. Suggest your friend seek a second opinion at a major academic or clinical center. Best of luck.

[spotness]

Yes, that's our concern, really.  He attempts to communicate and you can see his desire, he interacts positively with friends and family; in fact, even when he grunts to talk, he gets 'the number of words right' (if that makes sense) but just doesn't articulate.  My feeling is that this is based in neurology somehow; only because it's the only thing I can think of that could explain why he can't seem to make his mouth move to form words. I don't think it's a physical problem with his mouth or toungue - he has never had problems with chewing or swallowing. Through 2 months of effort by his mom, he can say 'ma', sort of.  He gets the 'M' sound, which is a huge acheivement, considering. I don't think it's lack of willingness on his part. The only advice I've been able to lend is to teach him some sign language so he can express himself better, because we have no idea if he will ever speak.

[KarenLL]

I completely understand what you mean about the grunting sounding like real speech, with the right amount of syllables and pauses in the right places--maybe even inflection for questions and everything?  It must be so frustrating for him when he isn't understood; how does he react then?  Tantrums?  Increased self-sufficiency?  At this age, most of his communication would be around getting needs met, but that will be changing.  He'll want to start telling Mom and Dad about things that happened, and asking questions, and having ideas that he will want to share.  Without some speech, those things will be very difficult.  It may be hard for the parents to leave him with a sitter, who may not have a prayer of understanding even simple wants.  And it will affect his socialization with his peers over time...adults are willing to put in some effort to understand children, but other kids will have a hard time relating to him as they get into a stage that requires more verbal interaction.  It's great that his understaning (receptive speech) seems to be developing on track, but they definitely need to work to help him with his expressive speech.  A speech therapist is crucial, but they may also want to look into getting some oral-motor therapy, whether from a speech or physical/occupational therapist.  There are kids who just don't seem to have an awareness of the parts of their mouth, or a sensory defensiveness of it, and working with a therapist on that can help them enunciate.  I don't think it would hurt at all to teach some simple signs for his favorite foods or activities and phrases like "please" or "all done" as he seems to understand the use of oral communication, and having the signs might lessen some frustration for the child and the parents while they work on getting him to pair words with the signs.  Sometimes it helps to take some of the pressure off that way.  Sorry, I tend to go on and on--again, good luck!

[KarenLL]

Obviously I'm not a doctor, nor could I even make a guess as to what is going on with your friends' son, but I have some ideas that the family might want to follow up on, if they haven't already.  First of all, has he had a comprehensive evaluation by a multi-disciplinary team?  While speech therapy might be an obvious way to go, all of the speech therapy in the world won't help if there is a medical cause for this.  Also, a physical or occupational therapist might see other issues that may need to be addressed in addition to the speech, or see things that will help the parents/physicians (has the child been seen by a pediatric neurologist in addition to a g.p. or pediatrician?)make sense if the speech delay is part of a syndrome or other condition.  Some people might also try more of a behavioral approach.  I don't know where you are posting from, but if you are in the U.S. there is what is called Early Intervention that works with kids (birth until they turn three).  The local school district would pick up the responsibility at age three if the child is found to be "educationally delayed", and I would think not having any speech at three would count.  To get more info, your friend could call the Dept. of Health and Human Services or Dept. of Education in her state.  I would hope even her pediatrician or local hospital would have the info.  I don't know if there's a reason for their hesitancy to do an MRI, but my son was sedated for an MRI at about 34 months of age, to rule out brain tumors and other things that could cause symptoms of delayed speech, etc, as part of the workup that resulted in a diagnosis of autism spectrum disorder.  There are lots of things that could cause a child to have a speech delay, so don't get caught up in that--I just want to reassure you that there is plenty of help out there if you know where to look.  Good luck!