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SN children

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Original poster

results from neurologist :(

23 replies

elliefant · 02/06/2014 16:15

I've posted on here before regarding my now 11 month olds developmental delays. Well today I received the report from the meeting with the neurologist - it says global developmental delay and microcephaly. I'm awaiting an mri scan where they will take blood for genetic testing as well, to verify this I suppose and maybe find out why. Even though I knew she had something going on its kind of scary seeing it in writing!!
Any one else going through similar be nice to chat and let off steam!!! x

OP posts:

LadyKooKoo · 02/06/2014 16:34

Please feel free to PM me (I am at work now - shhhhh!) but my DD has bilateral perisylvian polymicrogyria so I know exactly how you are feeling.

autumnsmum · 02/06/2014 18:52

Not similar but just wanted to say hi and hugs

Original poster

elliefant · 02/06/2014 19:25

Thank you for replying ladies xx

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itsnothingoriginal · 02/06/2014 20:45

My DD had her MRI at 2 weeks old so we were aware of problems from the start but I totally relate to how scary it is not knowing and waiting for results. Hope you get answers soon x

beccablob · 02/06/2014 21:07

This is my first message on here. I was reading through hoping to find someone going through what I am. My DS has developmental delay and suspected microcephaly. He is 7 months old. We first took him to the gp at 11 weeks as he wasn't yet smiling. He was referred to the paeds and has been going monthly since.

His head circumference measures waaaay below the bottom lines of the centiles. He is also v small all over, he weighs about 12 lbs at 7 months.

His development is slow too. He just about has head control but it lags at times. He can't roll and no where near sitting up. He can't reach for or hold objects.

We are lucky in that the paeds are being fab. He has an MRI scan on thurs :-( and they took bloods for loads of things.

How are things with your DD?

Louisajane27 · 02/06/2014 22:15

Hi my ds2 has microcephaly and brain damage. This was confirmed with an MRI when I was 32 weeks pregnant, he also had an MRI at 4 weeks old. He is now 3 months old and showing signs of developmental delay such as not smiling or able to hold his head for more than a couple of seconds. We too are under genetics and are awaiting test results but they think the most likely cause for all his problems is some sort of infection during pregnancy.

It must be a very scary time for you and seeing everything written down is difficult and confusing. If you want to talk or just share experiences im here to chat.

Hope you get some answers soon.

LadyKooKoo · 02/06/2014 22:33

There is a support group on Facebook which may be helpful Becca and Louisa.

beccablob · 03/06/2014 03:24

beccablob · 03/06/2014 03:30

Thank you for the Facebook group link... Have asked to join.

What can I expect at the MRI? Does it take long to get the results? Sorry you are having to go through it too. My DS was a late smiler too, and has only recently gained some head control... Although he is floppier than you would expect a 7mt old to be.

How are you? X

Skylar123 · 03/06/2014 22:32

After reading this I feel awful for moaning about fines and school. Lots of hugs ladies xxx

Original poster

elliefant · 04/06/2014 10:05

Thank you all for your lovely replies - beccablob it is good you are getting referrals now, the neurologist said my baby should of been referred earlier but my health visitor kept saying babies will do things in their own time! My baby was 6lb at birth her length and weight have been between 9th and 25th centile but her head has always been just below 0.4th centile. Despite flagging up on a growth scan its never been investigated my health professionals till now.
Looking at the bigger picture there were so many things that should of rang alarm bells and I wish I had gone gp earlier rather than relying on advise from health visitor!
But now my baby is 11 months its very obvious she has problems and especially when she's around other babies you can really see the difference. I'm trying not to focus on the negatives and the worry of is she going to walk or talk and appreciate all the little things she does even if no-one else understands my excitement lol.
The mri scan does worry me and the waiting for the results, I'd rather know straight away but I don't think the person who does the scan with be able to disclose anything?
I hope all goes well with your babies scan on thurs beccablob please let me know how it all went. I've only been in the system of the paediatric team for about 5 weeks so I've probably got a bit of a longer wait till I get the scan date. x

OP posts:

autumnsmum · 04/06/2014 10:18

Ellie don't be hard on yourself you took the advice of your Hv who's a professional , hope you get a scan date soon

beccablob · 04/06/2014 12:51

Hi elliefant. Don't blame yourself for the later referral. You were listening to a health professional.

I first noticed Edward was different when he didn't smile. At 11 weeks I took him to the gp who also noted he was floppy. He referred us on and he had his first appt at 14 weeks. This is where we discovered his small head. He has had monthly check ups at the hospital since and they have now decided to investigate further.

Can I ask what your baby's delays are?

Such a worrying time isn't it x

beccablob · 04/06/2014 12:52

Ps we haven't seen a neurologist, just a normal paed.

Original poster

elliefant · 04/06/2014 13:29

I saw a paed 1st who then referred us to a neurologist. My baby is the opposite, her muscles are quite stiff and rigid especially her arms although she's able to relax them at times. Plus her movements were quite jerky but that's not so noticeable now.
She has never cried (except a small wail when she had her jabs) my HV said count yourself lucky you have a calm quiet baby!! She smiled at 7 weeks but didn't laugh until a few weeks ago but its just a little chuckle. She managed to lift her head at 10 weeks and started rolling at 7 months. She babbles but doesn't say any proper words just a per or b sound. She usually always uses her right hand but can pass things from hand to hand and can put things in her mouth (she started doing this at 7 months). She used to hate tummy time and has only quite happily laid on her front from about 9months but she still lays resting on her forearms.
I don't know if this is part of what's going on but I find she chokes quite alot, I cannot give her pasta or bread (toasted is fine) or any foods that are quite stodgy, its not just gagging I've had to do first aid!!
She's now having physio, have you been referred to them yet beccablob?

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beccablob · 04/06/2014 14:04

Funny how they can have similar things going on but very different signs. He can't bear weight on his legs or grasp an object. It's like he has no strength.

He is miles away from sitting up and I still have to carry him like a tiny baby.

We are apparently being referred to community paeds who will assess for physio and OT etc but I need to chase it cos I've heard nothing yet.

What have they said about her choking? We have only just got him to take solids so he is on v runny purée and we can't do finger foods cos he can't grasp.

Is she your first? He is our third

beccablob · 04/06/2014 14:08

Funny how they can have similar things going on but very different signs. He can't bear weight on his legs or grasp an object. It's like he has no strength.

He is miles away from sitting up and I still have to carry him like a tiny baby.

We are apparently being referred to community paeds who will assess for physio and OT etc but I need to chase it cos I've heard nothing yet.

What have they said about her choking? We have only just got him to take solids so he is on v runny purée and we can't do finger foods cos he can't grasp.

Is she your first? He is our third

Original poster

elliefant · 04/06/2014 17:20

Re the choking they said just to give her foods she's happy with, I also started her on very runny purees, I couldn't get the consistency right when I tried making them so used ellas kitchen pouches instead. I used to cut toast into strips and let her 'help' me put it in her mouth, she soon got the hang of it. They referred us to physio while we waited for all the other appointments to come through, I think it was about 2 weeks to wait for our 1st appointment. Definately chase them up they will tailor exercises for your baby. I think the hardest part of all this is the not knowing what's going - if you know your child has a specific problem you can get info and put things in place to help. She's baby number 5 for me but all my other children are much older this is my little surprise! Xx

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Louisajane27 · 04/06/2014 21:15

Hi ladies, with regards to the MRI question, you don't normally find out the results straight away. They collect all the images together and then usually a couple of different professionals review them. We then meet with the neurologist a few days later and she was able to discuss the findings in detail and we could ask any relevant questions we had.

Good luck for tomorrow

JadedAngel · 04/06/2014 21:26

This reply has been deleted

Message withdrawn at poster's request.

itsnothingoriginal · 04/06/2014 21:40

We waited a week for mri results - there may only be one or two specialists or paed that can interpret the results. Just depends on when they are available to analyse the scan results.

DD has some of the same physical issues - fluctuating muscle tone - stiff to floppy and did quite a lot of choking when we first started weaning. She's 6 now and still has trouble with pasta but otherwise eats fine.

2boysnamedR · 04/06/2014 21:54

I found out about three weeks ago my toddler has a gene duplication. Seems he is only person with that duplication. Me and dh was tested also on Monday. He has gdd but his older brother has dyspraxia and SPd so I have a fairly good idea of how things might turn out. Not knowing the future is the hardest thing. I constantly wonder how they will grow up. People tell me not to, but how can you not? I wish I could wonder if they will have good jobs, get married etc but I just wonder if they ever leave home, drive a car, find love etc. just make the most of each development. I was saying to dh the other day I can't relate to baby's saying things like daddy for the first time, my eldest did all those things but not these two. I am expecting again in August. Now I will be watching this baby like a hawk for delays. I dearnt look forward to first words. Still waiting for my two year old to say mummy :0(

Original poster

elliefant · 05/06/2014 07:48

Good luck for today beccablob x! Its been such a long time since my older children were babies trying to remember what they where like at certain age is difficult so I feel like a 1st time mum all over again! What do you say when some-one asks how your baby is doing? Some of my family have been a bit blase about it 'oh she's fine- she looks quite normal to me- she walk/talk etc when she's ready' Some of them have done research on google and are full of doom n gloom!!! Then there's the aquaintences old work colleagues etc who stop me in street or if we meet up ask how's she's doing and I never know what to say - I have been just smiling and say she's doing great then change the subject! Its not that I'm ashamed of my baby I just don't know whether people want to hear it or how they will react!!! I had never really thought about too far ahead in the future like work marriage etc but the neurologist did say the developmental team help with things like where to send your child to school - I thought what! I just thought my child would go to the local school like my others - I think that's when it hit home this is a long term thing not something that can be fixed!!

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