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VERY late talkers???

MomToNoah
0 Recommendations

I have a son who is 4 1/2 years old. He was diagnosed a couple years ago with NF1. We assume it was spontaneous as it never showed it either family before him and none of his three older brothers have it either.
So far all he has is the CAL spots. After a couple MRI's and some scans we know that he does not have anything on his optic nerves, brain, etc. In short all his doctors agree that his case is very mild. The problem is that he is not talking...at all. He will repeat some words but not a single spontaneous word. His doctors cannot figure out why as there is nothing in his brain that shouldn't be there.
Anyone else have a similar experience and did that child ever speak?

Explore topics in this discussion:

Dyslexia Apraxia Speech therapy Ear infections

11 replies

tresham

My daughter was a late talker, but not that late. She also had her own little language. We put her into speech therapy when she was 4. She's now just fine. (19 years later)
Have your son's ears been checked. Perhaps he needs tubes? Does he get many ear infections?
I'm just brain storming here. Many of us with NF have LDs and that can include speech.

MysticMIkel

I was a late talker myself and I have NF 1. My parents were worried about my lateness in talking and as Tresham said about her daughter, I had my own language too. For example, the word radio was lay-eee- ooo.

Thank God for my mother when I was four, because a doctor told my family that I was mentally retarded. She refused to hear of it and when I enrolled in Kindergarten, I was immediately placed in Speech Therapy. I flourished with the speech therapy and went all the way through college.

What I am saying here, keep and eye on your daughter, seek out a speech therapist, and trust your mothers intuition.

Peace and best to you and your daughter,
Mike

MysticMIkel

Sorry MomtoNoah

I said your daughter in my post when I meant son.

Spot78

Hello,

I had a very difficult time with speaking. I was in speech therapy for many years (from about 5 to 10). I still have a hard time pronouncing certain words. But, I was able to overcome one of my "imperfections/obstacles" that I was given in life. I had the same problem; just make sure he sees a speech therapists and I'm sure they will be able to help your son out. I had my own little language when I was a kid too... I talk to people all day on the phone now (at my job)... :-)

-Isaac

Veronica1117

My mom has NF1 (I also have it as does my son). She mis-pronounces a lot of words. I definitely think she has a speech impediment that was never diagnosed. I also think that she has dyslexia that was never diagnosed. I, on the other hand, was blessed to not have any learning disabilities or delays (though I never crawled due to having club feet).

NF1 can manifest itself in many different ways. It seems that no 2 people have the exact same set of symptoms or the exact same severity of those symptoms.

You son probably does have a speech delay....but, like the others on here have stated, I am sure he will flourish with speech therapy. There will be a day when you'll never know there was a delay.

Take care,
Veronica.

pollytoad

Guess I must be an exception. I talked early (so I'm told). Don't remember. Anywa,y my mother likes to tell the story of when I was 9 months old, a relative walked in with her newborn. I pointed at him and clearly said, "Baby."

blukarma

My son is two and has been diagnosed with NF1. He started developing speeach at maybe a year and a half. He shows almost no speech now or if he does it may be that I don't comprehend it. We are starting him in babies can't wait in Georgia and hopefully he will qualify for in home speech therapy.

Amerchlinsky

Are 18th month onle is in week 3 os speech therapy . It helps but not as much as we are hoping for . Its only 1/2 a week . They are trying to teach singe language.

He says about 3 words.

Robtygart

According to my parents I started talking at 3 months, also I would use big words, I did have some Speech Therapy, I had trouble says anything that had "S''s" in them. This was all do to having a large tongue.


But Observing small children I have often found that boys have a lot of trouble talking, where girls I can have a some what meaning full conversation.

Mama4

My daughter was a late talker as well. (She has not been diagnosed with NF yet. We see a geneticist in October. We don't think she has NF but her doctor wants her checked out).

Anyway, at first they diagnosed her with Apraxia and then we found out that the real problem was VPI (short for velopharyngeal incompetency). Apparently it is a soft sign of NF. The doctor we see is doing a study on NF and VPI. You might want to see a speech therapist that knows about VPI. It is sometimes misdiagnosed as apraxia.

Try these two links. Hope this helps. Good luck and try not to worry. With speech therapy your son will talk.

http://www.apraxia-kids.org/site/c.chKMI0PIIsE/b.980831/apps/s/content.asp? ct=464507

http://emedicine.medscape.com/article/994975-overview

Super_RN

I personally have never had problems with language acquisition and am actually quite good at picking up foreign languages. Both my sister and I started talking at about 9 months. My NF is spontaneous (i.e. non one in my family has the condition). Oddly enough, my sister is the one who needed some speech therapy for a lisp. I agree with having your son checked out by a specialist (an ear nose and throat doctor). Good luck!

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