Delayed myelination

[AdamantEve]

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!

(Also posted in SN Children but it can be a bit quiet over there)

Bumping for the evening crowd in case anyone has experience of this.

hi,
I don't know how useful I can be, was you child prem? and does she seems to be developing typically? my daughter is 2 and had a awful regression stage at around 15 months, a MRI scan showed that her myelination would be what they expected for a 1 year old. Like you I did not know what to ask at the time as my mind was blown. my daughter has now had genetic testing and we are waiting for the results and to also see a neurologist to try and find some answers. we have many different departments involved at the moment. one positive thing is that my daughter is making progress again with her speech and social skills :) although she is now having odd episodes (long staring periods, sudden uncontrollable laughter, body goes limp.) we are under a community pediatrician who has sent us for an autistic evaluation.
one thing I've learnt is that no amount of searching the internet for answers will help. it's a scary and stressful time!!
I hope you get the help and support your child deserves!

I don't know if this is helpful to either of you, but I had a similar experience with my daughter having significant development delay (in her case of known cause she had a lot of seizures as a baby) and I have found it necessary to divide everything into stuff I probably can't influence (in your case how myelinated the brain is or how to improve that) and stuff I can (getting her seen by the right people and getting the help she needs with development) and concentrating my energies on the latter.
lois from my viewpoint what you are describing sounds like possible absence seizures, gelastic seizures and atonic seizures and you should be seeing the neurologist ASAP and pushing for EEG and MRI.
adam who is monitoring your daughter's development? Are you under a community paediatrician? Get them to make the relevant referrals now to Portage, Speech, OT, Physio as all the waiting lists are long. Have a look on local authority website for the local offer to see if there are any additional needs playgroups - this if often a way to get access to things like sensory rooms, music therapy - and to meet other SN parents who will help you find local resources. We had a lot of help from Snowdrop in Devon, or Brainwave are similar. Basically - use the neuroplasticity of young children to your advantage now and don't "wait and see" as the NHS will tell you.

patchworksack
Thank you for your reply, I am not too familiar with mumsnet and the workings of of it yet!
Does your daughter have any diagnosis along side development delay?
we had an EEG and MRI a few months back at this point it was only the blank staring that was the concern it came back normal, these episodes have happened since that and she is having another EEG next Friday. I do believe myself it could be galastic and atoinc seuizures but I'm prayng it's not!!
we have waited for 9 weeks for an app with neurology I spoke with the neuro secretary and she said it could be another 10 weeks!! so frustrating. she has a consultant at Birmingham children's hospital who is amazing, we are seeing her this friday so I'm going to stress how much things are changing. We have been sent in all the right directions it's just the waiting lists are soooo long!
I'm finally at the stage of being pro active in doing what I can here and now but its took me a while to get here, it's been a very dark time.
sending a hug to you both! :)

Yes she has infantile spasms/West syndrome. It is really frustrating waiting for everything. It's worth looking for Facebook groups for support - ESUK is a good one for any epilepsy related issues.

sorry, that came across wrong. I meant searching the internet for a diagnosis/answer, the internet has been in useful in other terms of finding information.

Hi i wanted to know peoples experience on there children with delayed myelination did they develop and just take longer to do things?

Hi everyone, I am wondering if there is any answers out there? My little girl had an MRI scan on 1st June which showed delayed myelination. We didn't get any more information than that from the pediatrician which I am chasing up! Like zgy123 asked, has anyone any experience of children catching up? My little girl os 18 months and is significantly delayed. Thanks Katie

I’m the OP and my child ended up being diagnosed with a genetic condition which was the underlying reason for her delayed myelination. She’s 3 now and is non verbal and can’t walk yet but she does continue to make progress, albeit slowly and behind others her age. I think in general, if you can find out the actual cause of the delayed myelination, then you’ll be able to get a better idea of what future development will be like x

Hi, hope you are well, did you end up getting a diagnosis, my daughter is 20months and I’ve also been told she has Delayed Myelination. She walked at 18months but is not talking at all. Really keen to hear your experience and how your little girl is now x