Here some suggested organisations that offer expert advice on SN.
Delayed Myelination - Is there anything to help bring it on a bit?(21 Posts)
DD2 had an MRI 3 weeks ago and although I don't have this in writing, the geneticist has said that her immature brain is due to delayed myelination. I've googled it lots and think I understand it now, but apart from Lorenzo's oil I can't see how or what would bring it on a bit.
We give fish oils to DD2 already but maybe there is a certain type of fish oil that may be beneficial or something else.
Does anyone have any advise for me??? I only found this out today, it's all very new to me.
Hi Pipinjo, What is a DAN? We do EyeQ as well, though I don't think I've seen a difference since using it, but figure it isn't going to do any harm. I don't have any dx at the moment apart from Dev delay and sensory processing disorder (which I now believe to be down to the myelination delay). Hope you don't mind me asking but what does myelination depletion mean?
Have the fish oils and vitamins helped your DC?
Riven, Do you mean lots of stimulation as in socialising, art, therapy etc or something specifically to encourage the brain to lay down fibres?
Tbh, you may find that delayed myelination is a bit like GDD - it's a symptom not a disorder in itself. DD1 has it (we think) because her underlying metabolic disorder means she is short of the substrate needed to lay down myelin. Absolutely sod all can be done about it without changing her DNA. But it's presumably different in other cases. So you'll have more idea what might help if they can tell you why myelination is delayed.
Also I think the range of "normal" for rate of myelination is wider than they used to think - they are now saying myelination will generally go on till 2 or 2 1/2. So though it may be an unusual feature in the MRI, it may or may not the the feature causing problems; keep an open mind and keep pushing on any other anomolies as well.
Re: oils - I think the thing is variety tbh. I'd get some different brands (fish ones, flax seed ones, whatever) and alternate a bit. "Omega 3" seems to cover quite a bit of ground.
Thank you, the geneticist is meeting the radiographer with DD2's MRI pictures tomorrow and then she will send me a full report of the findings, but she did say on the phone that they don't have an underlying cause. Some bloods were taken when she had the MRI for rare chromosome disorders so I guess these may flag something up. I'm guessing this would detect a metabolic disorder, would it?
Why does varying the oils help?
this is reminding me to restart with the oils!
my dd has probs in this area
she has a rare chromosome disorder and metabolic issues which may be seperate / related. Looks as though it could be a seperate glycogen storage disease. I've got my own suspicions otherwise
tbh I'm not too concerned anymore about finding out. She's 4 now. It won't make any difference on how she's treated etc
Hope you get some answers soon. Well - brace yourself a bit cos sometimes the answers aren't that at all - they just serve to throw up more questions! Glad at least you are getting fuller explanation now
MGC - bloods won't necessarily have tested for metabolic disorders. There are so many of them, and each test will be different as they are all flagged by the presence of different chemicals which the body can't process. So it's not as if there is a "do metabolic tests" box they tick - they would do each one specifically and usually only if they suspect it, they all cost money. I'm pretty sure your DD doesn't have what mine has as on average they die undiagnosed within 3 weeks. But it's one of the nastier ones from that pov, there are plenty of others. Geneticist will have ordered the tests, there will be a (pink?) slip in the notes somewhere listing what was requested.
Re: varying the oils - well, Omega 3s are a group of oils. Each with slightly different chemical properties. I think that a single source (eg flax oil or fish oil) will be likely to supply more of one subtype than another. So varying it over the week would mean you cover more bases.
Thank you everyone.
Pipin, I'll look into the vitamins. What is DAN and how do I get hold of a good one? I've googled it and come up with really random stuff. Also, what treatments are good that are not offered on the NHS?
Riven, your post has really struck a cord. "What you get out is what you put in", I do try to stimulate her as much as poss, but you can always do more I guess.
Pixie, you are right, I thought I wanted all the answers, but more and more questions are arising and the fact that she's developing really well now (apart from physically) I'm tempted to leave her be.
R3d, I'm off to the shops to vary DD2's oils. Re the flax seed oil, this is probably a very stupid question but am I literally buying a bottle of it and giving her a spoonful each day or are there special kids ones?
I give DS1 fish oil, I thought about flax oil due to possibly better taste (?) but my friend Google said a child's body does not process it the way an adult's body does so no benefit - However this information had nothing to do wiht brain development so may not be relevant/
mumgoingcrazy - oh that feeling of 'could do more' is quite horrible really. I did absolutely loads with dd - physio, singing, literally modelling how to play, over and over.. and she still has sld. It was hard, yet a bit liberating to realise that whatever I did made v little difference in regards to that.
Not to say it was worthless - I have a happy, confident , sociable child that is very responsive. Dunno how much of that is down to what we did. Obv impossible to tell
oh and ditto what r3d was saying about the metabolic tests. There are loads loads loads. Tis a bit needle / haystack. They need to have some idea what to look for
dd went through 1 yr of numerous hormone tests. Now she's under metabolic team as well and they think they have an idea - they've still said it could be 6 months before we get results
sometimes samples are sent other side of the world for testing (ours only going to sheffield mind!)
I always feel I should be more, even if I do therapy every minute of her waking day I think maybe I could have done this better or that better. I beat myself up a lot re DD1 but with DD2 I'm on a constant guilt trip. I'm guessing that's what happens when you have a kiddie with sn.
I just don't know how far I want to go with her tests. I'm waiting for a more detailed report of the MRI, but as for other tests I don't know. I'll see what the paed says next time I see her.
Bit confused by omega 3 at the moment, is there some way of finding out which ones would be beneficial?
Well I have quite a stash of eye q's (thanks to the 3 for 2's in Boots) so will keep on with these and I did happen to be in Holland and Barret today and bought some flax seed oil, so figured I might give her a dribble of this too.
I must admit, if I was loaded I might have looked into the Lorenzo oil a bit more. I wonder how much it works!
When I was expressing milk for DS during his early days on SCBU, his consultant advised me on what to eat to benefit DSs poorly brain (and to help me feel like I was doing something to help).
Her list included
No processed food at all - everything fresh (very difficult to acheive whilst practically living at the hospital willing DS to live)
But I did it, somehow. Not sure it helped, but certainly did no harm.
Apparently the all have naturally high levels of DHAs.
That's brilliant, thanks feelingbetter. Luckily she eats lots of salmon anyway but will sneak the others into her diet somehow. It must have done something as your little ds beat all the odds and is lovely by the way. I saw his picture a while back
Join the discussion
Please login first.