Help!!! My son is 16month old with delayed development anyone dealing with similar???

[MatNat]

My son is 16 month old and can't do a great deal he has low muscle tone and has regular physiotherapy (which doesn't seem to do a great deal) there's definately life behind those eyes don't want to lose faith but get no answers/diagnosis anything!!! Just been to see chiropractor who seem to think they can help him!!! But I'm running out of ideas - anyone dealing with similiar who can tell me there story!!!

hi my dd 19m and got GDD since phsyo she as come on leaps

Hi there, my DD2 is 19 months and has GDD (so far we believe to be due to SPD but still awaiting blood results and possible MRI). We have weekly physio/OT/SALT/Portage. The combination of them all has meant DD2 is coming on really nicely. We are reaching our milestones and goals, albeit delayed. Portage has been particularly good for us, but from what I have read on this board it varies widely from region to region.

What is SPD SALT and Portage please???

Ds2 is 25 months with GDD and CP. He has very low muscle tone and isn't sitting yet.
He sees a (private) physio and osteopath weekly and has become so much stronger since we started in September. I do his exercises with him religiously at least 3 times a day every day (though did have Christmas Day off! - ds2 finds most of it really distressing). Meant to do 4, but there's only so much time in the day. It has been bloody hard work, but he is improving - albeit incredibly slowly - and it gives me hope that his lot will improve. It's very hard predicting what the future holds for us though. We're about to start (private) OT and SALT to try and help him too, but obviously don't know how that will change the mix yet.
FWIW ds2 kept getting "stuck" on the same issues with the physio which is why I started taking him to the osteopath and she's really help move things forward.
NHS is just kicking in for us therapy wise now - 6 months after the ball started rolling. They're still to get their hands on though (preoccupied with forms, observations, reports and measurements)! So that side of things has been hugely frustrating. But at least some equipment is promised.
Portage has been absolutely fantastic. She's a lovely lovely person and it's been great to have someone so positive to talk to. Ds2 adores her.
There are also some great charities out there which are well worth finding out about (assume they vary according to where you are) and who have helped bolster my confidence that there is a way forward. (We went to the Brainwave Centre in Somerset and are about to start attending a conductive learning centre.)
Ultimately it's a long hard slog, but this board is great for knowing you're not the only one in the same situation.

I think SPD is sensory processing disorder (please correct me if I'm wrong). SALT - speech and language therapy. Portage is a charity who come to your home in the pre-school years to help you play appropriately with your child so as to aid their development.
Sorry to be so presumptious, but are you getting any support aside from physio?
My sone has GDD (due to severe brain damage) and is only 7 months old. We have regular physio, he has been referred to portage and OT (occupational therapy) and is seeing his SALT next week (for feeding issues - tho he is doing VERY well, he isn't speaking yet .

MatNat - I found this website very helpful in finding out who's who, what therapies are available/appropriate, and basically ensuring I am informed enough to get EVERYTHING that will help DS.
You can self refer to portage, have a look here

Keep posting here too. I learned more here than from anyone in RL (including the links above)
HTH x

Sorry, only just seen your post. Yes SPD is Sensory Processing disorder.

You will qualify for Portage if your DS is only 16 months. You can self refer or be referred by Paed or your Physio. I know from other mums on here there can be waiting lists to try and get on one.

I don't think it's right is you are only getting Physio. It's a combination of all our therapies that are moving DD2 on so well.

Wow I have learnt so much it 2 minutes thanks everyone!!
No don't have any support nobody seems to want to tell me anything - have such faith in my little lad but don't know what future holds he can't do very much at all!! He gets referred to things such as OT and Early Years but he's on a year long waiting list (which as you all will no doubt feel is the most frustrating thing) SALT are coming to see him in Feb!!! Chiropractor said today they think they can help him his cranial plates have locked down (his head measures small and looks thinner at top) so fluid isn't getting around brain properly so should see albeit small progessions!!!!

I'm a big fan of cranial osteopathy so hope this works for you.

Can you go private at all? I'm not sure where you are but there are centres called Brainwave in Essex and Somerset that could fill the void. I havn't done them personally but there are people on here who have. A year is a very long time to wait when your DS is so little, so much can be done in this time.

I'm sure there are other places too, someone on here might know of somewhere depending on where you are.

That's the trouble MatNat. In one sense nobody can tell you anything coz it's all unknown, but they do need to make sure you are as informed as possible as to what help is available.
Its good you have such faith in your DS - mine never ceases to amaze me!
Cannot believe your waiting list is a year long that's awful! Try and chase up the OT referral tho, the equipment they will supply (seating etc.) will help him no end. My DS was referred in October and we expect to be seen at the end of March (so not too bad compared to others) but I phone them fortnightly to check where we are on the list. Obviously I have no problem with more urgent cases going before us, but I just like to know if there has been a change. Don't be afraid to give them a ring and see where you are and also to check that they have received the referrals - they have an uncanny habit of going missing!

I've got my fingers crossed!!! It is a private family practice - my partner was going due to his back and I notuced they also saw children so explained my sons situation and they assessed him today and said they could defo help!!!

It's so nice to finally talk to others mums who understand my situation and I am grateful for all your help and advice!!! We all need to keep smiling (that's what I tell my little boy everyday)!!!

Hi Matnat, you've had some great advice on here, very little to add. My ds2 is 6 now but has seen all the therapists listed.

A year does sound like an awful long time to wait.
Does your ds have a paediatrician overseeing his care. If so can he/she help in chasing things up.
It may be worth looking at your local PCT website to see if there are any other routes to access therapists.
I know when ds2 was first refered to the OT the community team had a long waiting list, but the OT at the local CDC had a far shorter list & we cut the waiting time considerably.

Hi MatNat, Welcome to Mumsnet!
I have a DD who's 4.5 with a language disorder / social delay so quite different but just wanted to say Hi and hope the guys on here can help you!

Brioche.

Can I ask one more question what does Ds2 and DD2 and so on stand for??? Sorry if i seem obviously thivk but I am brand new to mumsnet!!

MatNat DS = Darling Son DD = Darling Daughter.
There is acronym list at the top of the page, worth a look there are loads of different ones.
told you Mumsnet would help!
Keep smiling hun

Hi Matnat

i have 31/2 yer old with Gd and sld(severe laungage delay) hes about 18month to 2 years behind and yes i can believe the year waits its the same here ,even now we dont get regular pysio , ot its more of assements heres excersise see you 3 months.But he is now on his feet abet wobbly and tires but is doing
,

in essex where i am is no portage infact there very anti here, but we are under sencn early years and they given him 1-1 in nusery

It really is a postcode lottery isn't it? I can't believe people have to wait so long and even have no access to some services.
It's crap .

feeling better dont even get me started on the salt avablity here ,we waited 12 months even now we see only every 3 months

all i can say if ever unsure don't wait around for people to come to you continue go to gp express fears get them to send further referrals etc nobody gets anything by sitting patiently im afraid to say

my ds has ASD and i had to fight all the way to get referred and to get salt i phoned all the time and went to different professionals etc is there a special needs group you can attend they give lots of advise and an chase things up for you also

it is hard but they sometimes need a kick up the backside to remind them your still waiting as lists are so long people who dont' fuss im afraid stay waiting

well in my area thats the case i had a yr long battle and yr half before he was given salt but i was on there case all the time so they had no room to forget me lol

and my sn group has been so helpful like minded parents to talk to advise and support its been a godsend xx

I don't know of any special needs groups or anything this is the thing I have been completely reliant on my health visitor and physio to take care of things I was not aware of what support my ds should be getting, until my friend Ladybuzz suggested I visit mumsnet to get some help and advice - I now fully intend to take as much in hand as I can, I can visit my local child development centre and push to get him in there (portage and OT are available here) I get comments from physio, nursery, etc about how my ds is getting bigger and heavier now and we really need to push him on to get him sitting but nobody seems to be that bothered about getting him the help and of course my feelings and emotional state are all over the place not knowing what to think I could do with some help and advice myself and my health visitor picked up on this but again there's a waiting list meanwhile I have 2 children a house and a job to take care of!!!!! Sorry don't mean to sound like I'm the only one this is happening to just still trying to make some sense of it all!!!!

Things are very up in the air for you at the moment and the reality that your DS isn't getting all the help he should is a lot to have to take in. It is hard at the beginning, I have no idea how long I cried for but once you have all the therapies in place and targets and a program are sorted I'm sure things will calm down a bit and you will know where you are going.

thank you.
I'm going to go on a mission now and see what I can get in place for him!! He's having first session with chiropractor tomorrow so hopefully that's the right direction to be going in!!!

Oh Matnat, I'm not suprised you feel like that. It sounds like you've had very little help at all (feelingbetter solemnly promises NEVER to complain again after reading others experiences .
OT are vital for the seating aspect if nothing else so give them a ring.
How big is your DS now?
My little chubber is only 7 months but off the scale for length and 93rd centile for weight - so a big boy!
His head control is a bit dodgy but he does have some, and generally has a good posture, so we bought a little seat for him (not a 'proper' one) which tilts backwards a bit. It helps us with feeding now he is on solids and gives him a change of position as he can't roll over, or move himself much at all on his own.
I've had a search and it seems to have been discontinued, but I think this is the next generation.
Its all very well your physio saying you need to get him sitting up, but has she shown you how to help?
Are you claiming DLA for him? If not, please do so.
Keep posting here, you will make sense of it all. We'll help!
xx

He's actually pretty small (not off scale or anything) follows 50th centile for length little bit under for weight but health visitor not worried at all but it's the awkwardness I think they mean as to holding him he goes to mainstream nursery (they are very keen to help him) but obviously all other children his age are capable of much more!!! He has pretty good head control and good strong back I only have to support his waist really (tips from physio) to get him to support himself but he can't roll over or much else really when he see's his older brother he goes doolally and starts shrieking with excitement and the legs and arms go ten to the dozen so he can move (only when he wants to). Physio gave me a ladybird chair and a stander to use, chair is fantastic but my ds hates stander and turns himself blue everytime I go to put him in physio said I had to put him in anyway and push past tantrums otherwise he will tantrum when he is much older!! But I refused and said it's easy for you to say that he's not your baby so she is getting another stander apparently much easier to get children in but I have to see it on Friday for first time!!! Hope he likes this one!!! He does get DLA at middle rate my health visitor helped me with that, she said to try and claim again in few months to try and get higher rate??? Not too sure about that!! Thanks for all your kind words don't feel quite so alone now!!!

He sounds just like my DS - he is all arms and legs and shrieks with excitement too. He sounds like he's doing just fine .
Definitely try again with DLA - the older he gets, the more different his needs become to those of his peers.

I never 'over' push DS either. A bit different I know, but he has always hated tummy time. As soon as the grizzles started I would get ready to turn him over. I'd let him grizzle for a bit then rescue him before he got really upset. At his own speed he learned to tolerate it and now he actually quite likes it.

I can't imagine forcing your DS into an awkward stander will do anything other than make him hate it (and all other standers too). Hope the new stander is better for him, it will do him the world of good.