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Here are some suggested organisations that offer expert advice on SN.

Hello, new to sn board but would really love to join.

(29 Posts)
pipintroll Sat 04-Oct-08 21:28:26

Hello all,

I am not new to mn, have previously posted in premature birth topic about my ds.

However i have been lurking on the sn board recently due to various problems my ds has been experiencing.

He was born at 31 + 4. I had the condition placenta praevia and suffered a massive haemorrage and he had to be delivered by emergency cs and I had to have a GA.

We spent 5 weeks in SCBU with him and the day he was discharged they did a routine brain scan on him and told us that he had suffered brain damage. They said it was probably due to lack of oxygen just before birth due to the blood loss. I cried all the way home from hospital.

After that we had appointments with his neonatologist and she said that the damage was done (although she worded it in a much better manner than that) and that they could not tell if it would have an affect on him or not. We would just have to wait and see.

I spent practically the next 8 months trying not to worry about it but then when he got to 10 months old (8 corrected) it became apparent to me that he was having difficulties. He can't sit alone, hates being on his tummy, never rolled over. Mentally he appears bright as a button.

Since then he has been referred by his consultant for physio which is due to start next week. He has also been given a corner seat with a tray and we are waiting for a walking frame type thing that the OT will come and show us how to use. I have also been offered help from a type of special needs pre-school teacher which I have also said yes to.

Just wanted to introduce myself really (please excuse my unfortunate name, that is what dh calls me. In light of what has happened this week, I could do with changing it but I don't want to. I had no idea what trolls were when I signed up!) and let you know that recently I have taken great strength from some of the people and situations on here.

Sorry if my tale is long! Thankyou.

saint2shoes Sat 04-Oct-08 21:37:59

Hello and welcome
Your story sounds so familiar.
dd had a corner seat with the tray(she looked so cute when she used ot fall asleep in it;)

Candlewax Sat 04-Oct-08 21:44:07

Hello pipintroll smile

coppertop Sat 04-Oct-08 21:52:06

Welcome to the SN board, Pipintroll.

sphil Sat 04-Oct-08 22:31:04

Hi Pipintroll and welcome! And I don't think you should worry about your name smile

pipintroll Sat 04-Oct-08 22:36:28

Thankyou for your kind welcome.

It is lovely to see the support you give each other on here.

(Not always easy to ask for in real life.)

Sidge Sat 04-Oct-08 22:36:43

Hello and welcome smile

I had a placental abruption with crash section under GA so can sympathise with you there. My DD2 probably has an element of brain damage, masked and complicated by a genetic disorder. I have learnt now to take each day and week at a time and see how things go!

I am glad you are getting support and therapies - is it Portage you are getting when you mention the pre-school teacher? Portage was fab for us, it really helped DD2.

pipintroll Sat 04-Oct-08 22:51:18

Hello Sidge- not sure what Portage is, although I have seen the term mentioned on here before.

I had a letter from the council saying that we would get a visit from an Early Years Support teacher from the Special Needs Teaching Service.

I have been quite overwhelmed by the amount of services that have been introduced to us over the past month. I just keep saying "yes please" to everything that has been offered!

We certainly take each day as it comes also.

I am glad your DD2 has been helped so much.

Sidge Sat 04-Oct-08 23:01:49

It sounds like Portage - Portage is a home play-based therapy for pre-schoolers. The idea is to help children with delays learn to do things they would do relatively easily if they didn't have their delays (if that makes sense!)

For us it was an hour and a half a week of having fun, DD2 didn't even know she was learning and developing new skills.

I think saying yes please to everything is a good philosophy to have - you can always filter out what you don't need!

pipintroll Sat 04-Oct-08 23:16:26

Yes, it does make sense, that sounds exactly how the specialist hv described it to me although she never said it was called Portage.

I understood that it would hopefully help him to develop his skills through play.

I have so much to learn about this! Thankyou.

mm22bys Sun 05-Oct-08 09:06:11

Hi Pipintroll,

Welcome to the board, hope you are able to get all the services and assistance you can!

All the best,

SaintRiven Sun 05-Oct-08 09:28:43

Hi pipintroll, welcome to the board. I also have a child with brain damage. I was told when she was little that the more you put in, the more you get out. Has been so true.

Seuss Sun 05-Oct-08 10:37:52

Hi Pipintroll and welcome!

drowninginlaundry Sun 05-Oct-08 10:39:54

Hi and welcome smile
I have a son with ASD and I love it here!

slightlycrumpled Sun 05-Oct-08 10:47:37

Hi Pipintroll. smile

I have a son with a genetic condition and have recieved loads of advice here, I'm sure you will find the same.

p.s I actually like your name!

Mitchell81 Sun 05-Oct-08 11:10:11

Welcome to the SN board, Pipintroll Everyone is very friendly here.

pipintroll Sun 05-Oct-08 13:05:33

Hello to everybody! smile

Nice to get so many welcomes.

I knew you would all be a friendly bunch!

It's nice to have somewhere to go for advice and to be able to ask questions to people who have real experience and are so supportive.

saintvicsta Sun 05-Oct-08 13:22:28

I also have a son with brain damage caused by hypoglycaemia. He is now 4 months old (16wks today in fact) and physically he is doing very well but a bit behind mentally (he's getting there tho). So, I'm also fairly new to the board and have had far more useful advise here than in RL (to be fair, I am lucky to have a great deal of good support in RL, its just they don't know do they?) Anyway, welcome. Everyone is so helpful here, I'm sure you'll find lots of support.

Tclanger Sun 05-Oct-08 15:12:55

Message withdrawn at poster's request.

BriocheDoree Sun 05-Oct-08 16:16:42

Hi Pipintroll, welcome to the board!

anonandlikeit Sun 05-Oct-08 16:57:23

Hi pipintroll, welcome to the sn board, it is v friendly here!
My ds2 is 5 now but was born at 28 wks, he has mild CP, ASD & Learning difficulties plus a few other bits & pieces going on.

I'm sure you'll get loads of advice & support on here.

padua Sun 05-Oct-08 17:55:06

Hi pipintroll, only recently started posting on here myself. Everyone is very friendly and gives lots of advice and support.

madmouse Sun 05-Oct-08 21:38:11

hello pipintroll. welcome

my ds was full term but also suffered brain damage, possibly because my body when under stress of labour causes inflammation in baby causing blood clots causing brain damage. i think hmm ask hubby.

he has a small head and is showing signs of cerebral palsy so has physio.

starting to feel that we should also have OT and portage, will start badgering some people smile.

this is a great place. I produced some panicked posts in the early days (we found out ds was brain damaged age 5 days as he had seizures (now stopped) and so had MRI and CT scans) and got some really helpful replies.

It is also a great place to post things like 'my ds used his right hand today' as people on here actually understand

madmouse Sun 05-Oct-08 21:40:08

by the way hope your physio is as good as ours. she comes to us and works with ds on his playmat with his own toys and she is so fab with him. and he is making real progress.

pipintroll Sun 05-Oct-08 23:35:52

Thanks to everyone who has replied to me.

I don't feel quite so alone anymore!

SaintRiven, that seems like sound advice, thanks.

Saintvicsta, yes you're right. Support in RL is good whether it be family or professionals, but they just don't know. I have put on a brave face and then in private have cried buckets.

Glad to hear from others who have received advice and support on here.

Madmouse, my ds is also showing signs of CP. Medics have not diagnosised yet, apart from the brain damage and hypotonia. Couldn't agree more about posting things like 'my ds used his right hand today' and people understanding. I was ecstatic the day my ds discovered he had feet! I think he was 10 months old at the time.

Thanks again to everyone. I don't know anyone in RL who is in a similar situation to us so it is nice to find people who understand.

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