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Here some suggested organisations that offer expert advice on SN.

New to MN and SN

(23 Posts)
slowburner Sat 16-Jul-11 15:50:49

Hello,
I am mum to a fun almost 1 yo girl who because of a complete f up during birth was born with HIE Grade II and at six hours old stopped breathing in my arms and was cooled, it is most likely that had I been correctly cared for in labour the situation could have been avoided and I am still struggling every day to deal with that information, I also have PTSD and I am not supported yet in learning to deal with those events.

My DD has had physio since 16 weeks of age because of hypertonic limbs and we see the paed every 3 months, the significant and widespread brain injury she suffered will affect her movement centers in the brain apparently and we most likely have a dx of CP just around the corner. My DD can crawl and roll, her right side is weaker and she has stiff shoulders so arms are always like little 'L's and as she reaches with one hand the other arm moves back, so we are always looking for activities to encourage her to use both arms. In addition we have been hospitalised twice (once in HDU) after viral illness caused massive febrile fits, the 2nd lasted over an hour and I genuinely thought that I would lose her (again).

After a year of irregular physio, we start a SN playgroup and portage in September, and at our 1 year assessment in late August we will apparently have access to SALT. Our initial portage assessment indicate delays in Speech, Fine Motor and Problem Solving. With her 1st b'day in a fortnight I would really love some ideas for toys/activities which might encourage one or more of these areas.

I look forward to being accepted and being involved with this MN group - Alice

Ineedalife Sat 16-Jul-11 15:55:24

No advice I am afraid, just wanted to say hi and welcome to the boardgrin.

cory Sat 16-Jul-11 16:16:58

<waves at Alice>

Welcome to the board. I've always found it a lovely place, welcoming and friendly and somewhere where you can rant or moan without being judged.

Afraid I can't help with toys or activities either, but someone will be along sooner or later, I'm sure.

Lougle Sat 16-Jul-11 16:26:11

Hi Alice, welcome to the SN board.

It sounds like you have really been through the mill!

Do you receive DLA for you daughter? If no one has mentioned it, I would look into it, because it really is worth applying for in your situation.

I would have thought any basic toys for a child your DD's age would help her. Things like shape sorters, or 'bash the animal' toys.

Chundle Sat 16-Jul-11 16:34:52

Hi and welcome hope you find the boards as useful as I have. My dd is nearly 2 years old and for her birthdays and Xmas I often find loads of good toys big and small from The Sensory Toy Warehouse. Sorry I don't know how to post a link to the website but I'm sure you will find it through google. For my daughters birthday this year I have bought her loads of little toys from the 'pocket money' section of this website and some toys from the 'speech' section.
Sorry to hear you are suffering And what happened to your daughter hope you get the support you need soon xx

badkitty Sat 16-Jul-11 16:40:21

Hi, I am not around on here that much anymore but have a little boy of 2 1/2 who also had Grade II HIE and has CP. Also as a result, I suspect, of negligent care during the birth and I still have regular flashbacks to it. It sounds like your daughter is doing amazingly well if she is crawling already. My DS managed it at about 18 months although he still crawls in a rather uncoordinated way. It is fantastic that she had the cooling treatment, I would give anything for that to have been available to us.

I also never received any support in coming to terms with it all although internet forums and blogs of other parents have been helpful! Still have really bad days but feel a lot better now than I did for the first year anyway. In fact I am having DS2 (by c section this time!) on Thursday which I am hoping if all goes to plan will also be a healing process.

I will have a think about toys and games which have helped my DS, portage should be really good with suggesting that sort of thing though. Feel free to send me a personal message if you want to chat!

slowburner Sat 16-Jul-11 17:02:03

Thank you everyone for your warm welcome, I have got a lot of support from FB sites, and I am so very very fortunate to have given birth in a NICU which was a test centre for cooling and so we had that treatment, without a doubt it saved her life and improved her functional ability.

I am sooooooo wanting another (two) but am studying (haha) and need to finish my degree first, and I also need to heal mentally and emotionally, although I know I want more I think at this stage i just want to try 'normal', when DH said to TTC soon I nearly passed out! Not mentally ready just yet. Plus my DD doesn;t sleep at all well and so evenings and nights are a bit awful at the moment.

BadKitty will PM you smile

slowburner Sat 16-Jul-11 17:03:02

and wishing you a very peaceful birth and a proper bonding experience with your new addition x

clangermum Sat 16-Jul-11 17:29:53

Have a look at the Cerebra website and see if there's a local rep you could talk to. HTH

TheCrunchyside Sat 16-Jul-11 17:54:01

Hi Slowburner. If you think your child was damaged by poor care during your birth then maybe you should talk to a lawyer about it. It might be important that the hospital is forced to investigate and learn from any mistakes that it has made - and if it has really stuffed up then it is not unreasonable that you are given some money to help care for your child.

by the way i hate "ambulance chasing" and am one of those people who never even get round to make legitimate claims on any insurance but this may be different.

nadia77 Sat 16-Jul-11 19:04:13

hi alice
nice to have you here this is the link well the web site i order toys from:
http://www.specialneedstoys.com/uk/
http://sensorytoyswarehouse.com/
i have used the above but my ds has asd so completely different needs but i'm sure you'll find something on those sites

DeWe Sat 16-Jul-11 20:32:14

My dd2 was born with one hand and we had a few things to encourage her to use both hands at once. The best was an empty 2 litre fizzy drink bottle. Balloons were also good, and large beach balls, but she used to go a bundle for the drink bottle. Wish she'd kept her inexpensive tastes. grin

lisad123 Sat 16-Jul-11 22:38:04

welcome grin

slowburner Sun 17-Jul-11 20:25:45

Thank you everyone for your warm welcome, apologies for delayed response we spent last night and today in hospital following a 'new' type of febrile convulsion where she absenced then fitted, we administered bucchal midazalam and the fit stopped quickly but were still taken in by ambulance due to my DD having an uncontrollable temperature. It is our 8th night and third stay since January, it is likely that she may have had them anyway as her father had one but hers are extreme and leave her paralysed.

I forgot to mention my DD also has microcephaly which is a definite result of the HIE injury, it makes her look really quite strange and I find myself staring at normal baby heads wondering what my DD would look like if she hadn't been HIE.

(TheCrunchySide - I have been offered a birth debrief but tbh I don't want to hear it, my DH and I intend to instruct an experienced birth injury solicitor very soon to discover the truth and gain us an apology)

shoots Sun 17-Jul-11 20:51:52

Hi, I'm new here too! My dd was also grade II HIE in 2007. She has a brain injury as a result. She is doing very well but has mild mobility difficulties and problems with her fine motor skills although has no other issues that we are aware of yet.

So sorry to hear your dd has been poorly - I wonder if HIE babies are prone to temp spikes as my dd definitely is? Hope she is on her way to recovery by now.

Like you, I wonder if anything more could have been done to prevent her problems but my dd's situation was very unusual as she didn't show signs of her oxygen deprivation for 24 hrs so wasn't cooled unfortunately.

Feel free to PM me!

slowburner Sun 17-Jul-11 20:59:57

hello shoots smile
we have found (either because of cooling or because of the injury) my DD runs about a degree cooler than other babies when she isn't ill, with the result that by the time she hits 37 degrees she is going downhill but last night took us totally unaware, she hit 39.5 degrees and fitted at 38.2. We'd been monitoring her all week every two hours with a digital thermometer due to cold and keeping her on a proactive dose of nurofen/calpol as directed by neuro but still that didn't stop it.

Thats very very reassuring that your daughter has done so well, I am sure a lot of it has been through your (and her) hard work, have you have a lot of extra support from portage/sn groups/physio? My biggest concern at the moment is the micro, it just keeps being labelled as meaning definate learning problems sad

shoots Sun 17-Jul-11 21:16:16

Yes, dd has also had physio almost from birth but not portage and we have no local sn groups which is a shame. Being a second child has helped as she has had a big brother to copy and he has helped with her physio bless him!

My dd also does the thing with her arms where one will stiffen and go back when she is using the other one. However this is getting much better with time and I don't notice it as much these days. We do lots of throwing and catching practice to encourage her to use both arms together. She also does horse riding to help with balance and stability which is her main issue really.

That is interesting about the temp - will try dd's tomorrow whilst she isn't ill!

sneezecakesmum Sun 17-Jul-11 21:20:33

Microcephaly doesnt always lead to learning difficulties, there is a wide variation in the affects - it still a wait and see game unfortunately. Would your GP arrange some counselling for you. DGS was also born traumatically and has CP (sadly also not cooled - just missed the boat!). DD had counselling and it really helped. So sorry you are going through the trauma of febrile convulsions, I really believe the babies with HIE have more sensitive brains which just take a little longer to be able to cope with such things as fevers, loud noises etc. It is a rapid rise in temp which makes a FC more likely so be cautious of rapid cooling such as fans and lukewarm baths- it often has a rebound effect.

What we used to do regarding bringing both hands together is do hand-over-hand to hold beakers, catch balls etc. We 'named' his weaker hand pandy and encourage him to use pandy! OT is also good at trapping his good hand and making pandy work to turn the bubble machine on!

slowburner Sun 17-Jul-11 21:21:40

Since the first febrile fit in January we actively keep my daughter cool by under dressing, cue plenty of shocked looks from people when I am seen carrying a baby around with less than appropriate clothing on! Today for example it was raining and cool and she was in a short sleeved vest only! But she does seem more comfortable being cooler.

I hope that the 'arm thing' will reduce with time, its strange really because after a fit my DD goes floppy, usually she is stiff (gets worse when under the weather - a useful indicator when teeth are appearing too) I know the postictal paralysis is Todd Paralysis, but the changing tone has also been referred to as transient hypertonia.

Hmm - horses - I shall consider, they scare me witless but I could probably deal with a miniature pony lol

sneezecakesmum Sun 17-Jul-11 21:23:35

X posted! DGS also does the weak arm stiffening and flying off when DGS uses the 'good' hand - he's aware of it now and grabs his wrist to hold it down! he also drags his pandy to his mouth for a bit of thumb sucking!

slowburner Sun 17-Jul-11 21:30:20

sneezecakesmum (how did you come up with that nn if i may be so bold as to ask? Mental image of sneezing cake crumbs!)

ty for your advice on the fans/baths, we do use a fan in hot weather or if she is running a low grade fever - but we cool the air in the room rather than her body.

And re the micro - I just need to relax and see that she is meeting (most of her) milestones, but then today in hosp they were talking about the possibilities of regressing in skills and that upset me. We have just moved and the new GP and HV are finally getting me some help upstairs so to speak. I am also meant to be doing a PhD but stuck between a rock and hard place as to whether to continue or not.

sneezecakesmum Sun 17-Jul-11 21:46:45

My dd called herself sneezecake confused why?? so what else could it be!

My DD was planning to do a dissertation at some point but that has fallen by the wayside sad DGS is 2.10

You are very early on in this, not very nice, process. The first couple of years can be a bit shite with all the worries etc. DGS was severely anaemic, had vacant episodes, colic 24/7 and a diagnosis of CP, low weight, poor feeding - all before he was one - so very crap year. It gradually improved in his second year, but with constant terror on DDs part. Now he's over 2 she is relaxing a little but still fighting the low weight issue and slow physical progress, but we are (pollyanna ish) in our optomism for the future, which helps!

badkitty Sun 17-Jul-11 22:18:12

Definately look into the horses - we have been lucky enough to have hippotherapy (basically physio on horseback) once a week for the last term (having been on nearly 18 month waiting list so you need to get in early!) and I am really starting to notice some difference in DS's posture and stability which I am sure is coming from that. And it is nice to do something which is fun for him as well - he loves going riding. He also does the thing with holding his right arm behind him while he uses the left, to help him balance, he can use the right but it tends to be his propping/balance arm. However I think the riding is also helping his symmetry improve a bit.

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