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Delayed myelination - any experiences?

9 replies

AdamantEve · 07/01/2020 08:37

My 7 month old DD has delayed development. Her consultant phoned yesterday with the results of her MRI scan which showed delayed myelination. From what I understand, this can continue to develop/improve up to 2 or 3 years of age but equally in some children it does not improve.
Has anyone got any experiences with this? What was your child diagnosed with (if anything) if they also had delayed myelination? DD doesn’t currently have a diagnosis, all genetic testing has currently been negative.

I didn’t ask the consultant many relevant questions yesterday because I didn’t quite know what to ask!

OP posts:
Tilly09 · 10/01/2020 20:19

Sorry to jump on the post but what symptoms were showing with your DD? My DD is 6 month and having some delayed concerns. Hope you get your answers you need. Take care x

Poppywood · 11/01/2020 20:15

Hi! My DDs MRI showed delayed myelination. It's linked to the motor tracks in the brain so can lead to motor delays. My daughter is now 2.5 and has a diagnosis of diplegic cerebral palsy. She's just Learning to take steps In a kaye Walker.

She was born at 31 weeks and her MRI also showed damage to the white matter of her brain, we were told delayed myelination was caused by this.

Are you getting physio input? Can stress enough how important early physio and therapy is even if he's only Mildly delayed xxx

AdamantEve · 12/01/2020 20:20

Ooh only just noticed I have replies!

@Tilly09 she is generally delayed, can’t roll or sit up or do anything really that she should be doing at 7 months. She has hypotonia so is quite floppy and has some trouble holding her head up well although this has improved over the past few months somewhat. She was quite late to smile, at about 8 weeks. She also has occasional jerky arm movements which we thought were seizures which is what led to us getting her assessed when she was 4 months old. We also have some concerns about her eyes as they sometimes flick back and forth rapidly but still awaiting an ophthalmology appointment. We’ve just been told now it’s a case of waiting to see how she progresses which I suppose is the only option but it’s torturous not knowing how she might or might not develop. What are your DDs symptoms?

@Poppywood how did your DDs diagnosis come about & how old was she when it was given? If you don’t mind me asking, is she affected just physically or does she have other symptoms and is her speech delayed? Brains are just so complex, it’s also fascinating (and frustrating!) how even with a diagnosis, no two children will be the same and some can be more or less affected than others. I think this is what I’m finding a challenge because I want to know what the future holds but I also know that nobody could possibly tell me!
Yes, we are starting physio in a couple of weeks when she’ll be 8 months so I’m looking forward to this as I’m hoping we will start to see some progress. She’s my third baby so her delays are so obvious to me I think it would have been less worrying if she had been my first as I wouldn’t be making comparisons!

OP posts:
AdamantEve · 12/01/2020 20:28

@Poppywood I’ve just seen your response on another thread about your DD so it has answered all my questions, no need to type it all out again! Fantastic that she seems to be doing well cognitively.
Our consultant has said from the start he feels DD will be cognitively impaired, I’m half alarmed and half taking it with a pinch of salt as I don’t know how he would know this yet. Preparing for the worst and hoping for the best is probably my current thought process.

Lovely to hear that your daughter is taking steps with her walker, I love every single positive story and new skill learned that I hear of, it honestly gives me so much hope for my DD when I hear about other children doing well.

OP posts:
Poppywood · 12/01/2020 22:38

lol! Yeah posts about kids with brain abnormalities similar to my daughters or delays not linked to ASD don't often come up on here - when they do I tend to comment!

I think preparing for the worst whilst hoping for the best is absolutely the best way to be. I am the same and it's helped me cope.

We were also told that she would most likely be cognitively effected and have severe to moderate learning disabilities and she was diagnosed as having global developmental delay at about 10 months old, but she seems to be catching up cognitively. She's still not completely typical in some areas (gross motor aside) but she had some horrible seizures followed by about 8 months of very strong seizure medications and she struggled with visual processing for a long time - she's actually diagnosed with cortical visual impairment and registered partially sighted but I think it was mostly to do with the seizures and the medications she was on - it's improved so much since weaning the meds - so if you take all of that into account it's amazing just how well she is doing - especially with speech! She's so chatty! Biggest delay aside from gross motor seems to be problem solving - so things like basic puzzles, shape sorters etc.

It's scary to be told that your child is likely to have learning disabilities but you are so right to take it all with a pinch of salt, it's good to be prepared and do lots of reading and researching in what you can do to help, but ultimately they are just giving you their best guess and don't really know. I never put any limitations on my DD despite being told she would never walk / talk / learn - we have persevered and she's doing amazing!

So glad to hear she's starting Physio soon - therapy, physio and lots of Repitition is key to tap into the potential of brain plasticity! Xxx

zgy123 · 20/01/2022 17:31

Hi I know I’m late to the thread but what seizure meds was your baby x

Momtobub · 20/11/2023 19:38

@AdamantEve hey there! Just wondering how is your daughter doing now? I noticed similar symptoms in my child and wondering how things have turned out for you.

AdamantEve · 20/11/2023 22:22

Momtobub · 20/11/2023 19:38

@AdamantEve hey there! Just wondering how is your daughter doing now? I noticed similar symptoms in my child and wondering how things have turned out for you.

Hi, we didn’t have a brilliant outcome, my daughter was eventually diagnosed with a rare genetic condition at 12 months old so her overall progress has been slow but we at least found out the reason for it!

She sat up unaided at around 18 months.
Shes 4 now and non verbal and can’t yet stand/walk although is showing signs she might. She has decent understanding when she’s spoken to though and can follow instructions etc she communicates in her own way and we usually know what she wants!

I do think most times the symptoms she initially had are things that end up being nothing, obviously all children develop at different rates and it’s not all that common that there’s a significant underlying issue so don’t let our outcome worry you too much. I hope everything works out ok with your child

OP posts:
Momtobub · 21/11/2023 03:31

Thank you for getting back to me :) sending good vibes your way!!

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