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428953 tn?1203744200

My Toddler's MRI Results

Hello. I have a 31 month old little boy with severe language delay. The only words he can use with any regularity are MaMa, Mommy(with different intonations), and Booo for our cat (named Blue). There are about 3 other words he can sort of say with repeated coaching. He grunts in syllables, so I believe he understands language. He is very intelligent and has excellent receptive skills. Follows directions well (for a toddler), and has so-so eye contact at his descretion. He seems uncomfortable with direct eye contact, but will circle and observe new people with interest and will approach them on his terms. He was involved in a minor car accident with me at 15 months. He was in his car seat(front facing). The jolt was hard enough for him to sustain bruising on his left arm from it hitting the carseat. I didn't notice any bumps on his head, and opted not for him to undergo an MRI at the time because it would require anesthesia at that age & I didn't want to take the risk. The doctor & I agreed to keep an eye on him.  At 17 months we noticed that he lost words he had started saying...No more "Da" or "Ba". Went to CHOP at 23 months & had hearing(normal), ENT eval.(normal), & speech eval. where he was diagnosed as Apraxic. We're currently 8 mths into our 10 mth wait for Developmental Specialist appointment.  At 24 mth started Early intervention. (they don't feel he's spectrum) At 26 months he had an MRI with the final impression that stated: (I'm quoting from report)"Persistant, non-myelinated u-fibers in the frontal & temporal lobes..."  Here's my question.  Is this bad?  I cannot find the term non-myelinated-just demyelinated. Does this mean his myelin sheaths have never developed? Is this uncommon for a 26 month old to not have developed myelin yet? He is now 31 months old with no significant improvement since we started. Could his myelin development been interrupted by his head hitting the side of the car seat the way his arm did? I don't think he went unconscious. I just remember that he didn't cry, so I thought he was OK. That's why I was surprised when I saw the bruising on his arm, because it must have hurt, but he didn't cry. Did I make the wrong decision by not getting an MRI for him when the crash occurred? Would it have made a difference? Is there a medical way to generate myelin development? Do I get a prize for asking the most questions?(I have to throw jokes in to ward off sadness--sorry if it seems off color to you) He just screams & cries all the time out of frustration. He's beginning to use the sign language that E.I has been teaching us & it helps. We are currently waiting to see a neurololgist at A.I. Dupont in July, and we're closing in on the Develpmental Specialist appt. in April. Thank you for your time...
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Avatar universal

I read an old post about your son speech delay and his MRI
my son 32 month old has exact same condition but no accident  though.
how is he doing now ?
and what did you do to help him ?
sorry  for the trouble but l am despaired to understand my son conditions and what to expect
please help
Helpful - 0
1 Comments
Our son was born 38 weeks emergency induction due to pre eclampsia  with a cleft pallet but otherwise a healthy baby boy. We received the diagnosis of myelin delay about the age of two. We have been to countless specialist with not many answers and I'm wondering I'd you've had any luck getting somewhere with your LO. Dane is now 6, he does not speak and has many delays.  I'd like to know what other kids with the diagnosis are doing and capable of. Please email me and we can bounce off of each other. ***@****
Avatar universal
My son's specialist at a HUGE teaching hospital in a big city had a concern about my son's frontal lobe myelination and a possible delay with it.  He said not a whole lot is known about it.  (my son has some delays ...vision maturation and gross motor development...they are not severre delays...considered mild)  Anyway, this specialist said that it is a newer area of research and they tend to find children with mild to moderate delays with no other diagnosis (genetic or metabolic issues) many times have this delayed myelination of the frontal lobe.  Apparently, it can resolve over time because myelination continues to develop into adulthood.  So the thought is kids that have this continue to progress and improve over time even though they are delayed.  The other thought is depending on the child...it can affect different area's of development.

My son's MRI was when he was just 4 months old.  He is now 11 months and they want to repeat his MRI when he is 13 months to get a more accurate view of that specific area and tell us how underdeveloped it is.  

I just wanted to let you know that not a whole lot is known about delayed myelination in the frontal lobe...but that what they do know is there is apparent relation to it and developmental delays (different in different kids) and research to date shows it can improve with time.  I don't think this would be a result of the accident.  (although part of my history is a big auto accident when I was 5 months pregnant...but a visit to the OB right after showed my son to be ok at the time.)
Helpful - 0
443603 tn?1216634049
meant to write; Could his non myelination & speech delay have anything to do with these lesions on his face? (Sorry, it's late & my eyes are crossing!)
Helpful - 0
Avatar universal
wow, when I was reading your story I almost cried it was if you were talking about my son. My son is also 31 months. Everything you said about your son has been my same concerns. I could not belive what I was reading because I couldn't have described it as good as you did. My son is scheduled for an MRI next monday and I am scared. He will also be tested for autism. Although I am confused because he also follows directions and has great receptive skills.I would like to keep in touch maybe we can give each other helfull information, My heart goes out to you and your family because I know how frustrating it is to not know what is going on. You must love your son dearly as I do mine. I am sure your son is very special, my son is too.Wish you and your family the best.
Helpful - 0
2 Comments
Our son is also in the same boat.Our son was born 38 weeks emergency induction due to pre eclampsia  with a cleft pallet but otherwise a healthy baby boy. We received the diagnosis of myelin delay about the age of two. We have been to countless specialist with not many answers and I'm wondering I'd you've had any luck getting somewhere with your LO. Dane is now 6, he does not speak and has many delays. Id like to know what other kids with the diagnosis are doing and capable of. My email is ***@****
Our son was born 38 weeks emergency induction due to pre eclampsia  with a cleft pallet but otherwise a healthy baby boy. We received the diagnosis of myelin delay about the age of two. We have been to countless specialist with not many answers and I'm wondering I'd you've had any luck getting somewhere with your LO. Dane is now 6, he does not speak and has many delays.  I'd like to know what other kids with the diagnosis are doing and capable of. Please email me and we can help one another. ***@**** Our son was born 38 weeks emergency induction due to pre eclampsia  with a cleft pallet but otherwise a healthy baby boy. We received the diagnosis of myelin delay about the age of two. We have been to countless specialist with not many answers and I'm wondering I'd you've had any luck getting somewhere with your Sam. Dane is now 6, he does not speak and has many delays.  I'd like to know what other kids with the diagnosis are doing and capable of. Please email me and we can bounce ideas off of each other.
***@****
428953 tn?1203744200
I meant to write; Could his non myelination & speech delay have anything to do with these lesions on his face? (Sorry, it's late & my eyes are crossing!)
Helpful - 0
428953 tn?1203744200
I don't know if this makes any difference at all or has anything to do with his brain and the non-myelination results of his MRI, but my little guy(31mths) has been fighting repeated bouts of impetego on his face for at least the past year and a half.  The other two kids (7 & 10) have never even had this before, and he gets it at least once or twice a month. The doctor doesn't seem worried about it, but I don't like having to put him on antibiotics all the time.  It's getting to a point where I feel like he's being prescribed maintenance antibiotics for this, and it doesn't seem like the Amoxicillin helps all that much.(Half the time I don't even get the script filled because I'm afraid of him building up a resistance to antibiotics. Is it possible that his non myelination & speech delay could have anything to do with each other?
Helpful - 0
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