Anyone willing to share your experiences on SPD?

[MultipleMama]

I posted on children's health - I'll link so I'm not repeating it all.

I'm worried about what can of worms it has opened and admittedly I'm scared if anything comes of their concerns.

I hate saying this but ds4 is a very difficult baby but I just put it down to hypersensitivity and BPD (his on home oxygen).

The GP refuses to give me anymore help until ds4 has the assessments. I know I'm jumping ahead before I even know anything and he is still a baby, add in that I'm a worry wart and here I am.

Can they even diagnose or make assumptions at this age?

Anybody willing to share their experiences and lend me some advice on how to deal with/help ds4 before I cry, I'd be truely grateful. :)

Sorry for long winded post xx

Thanks :) That does sound woo! I'd give anything a go at the minute.

It makes perfect sense. Ds4 is hard to settle and extremely hard to calm. The only thing that settles him is white noise, being rocked (but moved positons - he really hates that), nursing and DH's soft singing/humming which we believe is the vibtations that soothe him. He has no sleeping pattern and wakes at the slightest thing (mainly his monitors). If he falls asleep on you and you try to move him he unsettles and the cycle begins again. He's a twin so if anything else fails his sister wakes him up.

My ds has SPd as a part of his dyspraxia. He wasn't diagnosed until he was six though. Ot was very good and after years of having no answers she very quickly worked him out.

She had of recommendations which are easy to do and he loves.

It all sounds positive they are trying to find things to settle him

I havent read your other post but I also knew from a young age that Dd3 was different, she has a dx of ASD and the paed has now tagged "With associated SPD" onto the dx.

I used to wrap her really quite tightly when she was tiny she would not sleep unless wrapped and covered by at least 3 or 4 blankets. We used to think it was because she was cold but we now think it was a sensory thing.

She was funny about smells too, if I put washing on the radiator in our room [where she slept for 14 months] she would not sleep, it took me ages to make the connection between the smell of the washing powder and her not sleeping.

Running the shower would help her to settle, we have an electric pump which is noisy.

Go with your gut instinct, if you think there is something then you coukld be right.

You could start keeping a diary or making notes about his issues, they could be helpful further down the line.

Good luck and keep coming on here

Thank you :)

We've noticed:-

-He hates loud noises starts screaming and becoming aggitated.
-Has been dx with perfume intolerance. - had to switch all household products and toiltries (even ours).
-Hates his diaper changed - screams when uncomfortable (so we know when to change him!)
-Hates bright lights can only nurse in a dim light room or covered by a blanket.
-Hates certain materials and anything on his feet - He screams wildly.

• He loves being swaddled or having something weighted on him.
• Loves vibrations and rocking motions.
• Loves baths but gotta be a certain temp and loves the tide wave motion.
• Hates noisy toys but loves coloured lights.

List goes on!

We've also noticed he doesn't reach for things, doesn't want to hold toys and doesn't even attempt to put the ones he does hold in his mouth. He also hates anyone but DH and I holding him and is at his calmest when doing skin to skin in the bath with only candles going.

Wow, I rambled. Still unsure but if there is something I'd like to know. Just scared.

Thanks for listening :)

My experience is that the sensory part of Dd3 has become less tricky as she has got older and my awareness has increased.

My Dd3 is both sensory defensive and sensory seeking, which sounds strange but is apparently common. The OT's in my area call the condition sensory processing dysfunction which I think describes it better.

I think making yourself confident and knowledable in your own child is the key, you are the number one professional in your own child. When you are comfortable with his issues you we find it easier to work around them.

Take care and good luck

Thanks :)

SPD in preemies is fairly well recognised to the point where many units have an OT as part of the team to assess and teach parents about handling etc.
At 13 weeks adj its a bit early to be calling anything on the Autism Spectrum. What you describe is consistent with a child who has SPD.

Here is the website set up by Dr Lucy Millar who is a big noise in the OT/SPD world.

Here is an introduction to SI

Sensory Integration/Sensory Processing are used interchangeably .

I dont know where you are, but try to ensure that the OT you see is (at the very least) a Paediatric OT and preferably a Sensory Integration trained one.

Going from what you have said:
would he tolerate a firm massage?
would he tolerate being swaddled?
how does he react is he is on a car journey?

I'm in Germany. Thank you, I will look at all that with DH. :)

We see a OT that his GP reccommended so will ask more questions then and see what they're trained in.

To answer your questions;
I find he's calmer, laid diagnoally across our stomachs with his back rubbed or on his back with his tummy rubbed. So, he might, we could try it.

He has to be swaddled to sleep, he's even swaddled in his carrier.

He hates the car, only been in twice and both times screamed the whole way and took ages to calm him.

Dd3 hated the car too and the pushchair, I bought a 3 wheeled pushchair with pneumatic tyres and a hammock type seating system with a thick fleecey seat cover and a very deep hood to keep the light out!! She would sleep in it for ages, we walked everywhere and she loved being in it. My absolute best buy.

My friend has just been using it for her Dd who also has SPD and she used to peg a blanket over the hood so her little girl could completely hide from everything and everyone

I'd love to do that but with 4 under 2 I haven't the use for a single. I currently use my ABV quad buggy - any tips to make it sleepable or more comfortable for him (he's on top in a newborn seat so I have close access.

Lall sounds very familiar. SPD babes are hard to comfort. Mine was bloody hard work! Lol

I remember we were never able to eat as the minute the cooking smells were about my son would cry. Hindsight a a wonderful thing but only put 2 and 2 together when he was about 3. I suppose our first red flag was fussy eating.

Where are you? My son has a diagnosis of "ASD (Aspergers) with significant sensory processing difficulties". I think this is the closest to an SPD dx you get in the uk whereas in the US it is defined as a condition.

Multiple mama, I had 4 children under age 3 and really feel your pain. One thing I use (not for SPD) but it may help you I think, is have you tried a 'wrap' to carry your baby? It holds them very securely and tightly, much like swaddling. I have a 'je Porte mon bebe' wrap, you can find them on the web (based in France but deliver anywhere).. It's a fab wrap and can be used on your back when hey are older. It will also free up your buggy space!

Jerbil - I live in Germany, and having done some research, it is not widely known here and many are left un-dx as doctors are clueless about it. So in that respect we are lucky that we requested the most experienced and who spoke fluent English & German - of which his Cardiologist and Paed & GP are - and obviously know at least something about SPD. At this point I want to find out as much as possible - not sure on if OT knows about SPD or not after doing research...

MooMummy - I carry him as much as possible using the Boba wrap or my Baby K'tan (size down) - he's still no where near 7lbs but we consulted his doctors and they said it was okay to do so. I cannot carry him all the time, he is a twin and as they're EBF on demand, I need to be able to feed her too and she hates being confined to the wrap.

I dont speak German...but I found a link to this clinic

Jean Ayres is an OT who worked in California in the 60s and 70s and really is the 'inventor'/parent of Sensory Processing.

Any OT trained in Sensory Processing will know of Dr Ayres work and refer to it.

I dont know if that clinic is anywhere near you but a phone call for advice/local recommendation might help?

I found the link from here

MultipleMama You have had such good advice on here. I have a prem baby - 30 weeks, hydrocephalus, long stay in NICU - and it only became clear to me at about 2 years that he had sensory difficulties.

I asked for advice here and read lots of threads around autism, SPD, dyspraxia etc and it has been invaluable.

He is now 4.5 years and his OT believes he has low muscle tone and SPD and is working really closely with us and the nursery to help him get ready for school. He is a lovely, sunny boy who is getting on really well because of all the information I have gained here.

Your DS is only a baby but the knowledge you get on MN will put you in such a powerful position to advocate for him and get things in place to smooth his way. His OT is key as well and he has made since great strides since she started working with him.

Redoubtable - thank you! Never saw this, the clinic in munich is 3.5 hours away from us according to DH so we'll either call and ask for advice or give the info to his Paed and see what he can find out for us. :)

EyeoftheStorm - glad to hear your boy is doing so well :) MN has been a great source of advice and comfort since I joined. Had a difficult PG and the support was lovely.

OT has raised complete awareness at our school. They are brilliant. IMO don't try and tackle SPD without one. :-)

You're welcome MM.
I hope they can help.

'The Out-of-Sync child' book is an excellent resource if your boy continues to have difficulties as he grows.

Good luck.

DS4 had his OT appt today. She said that she knows of SPD but isn't familiar with it, so she is going to refer us someone who does, it's an hour away from us though. She said Halo is definately setting off red flags and believes he has SPD but would prefer to have the referal do the dx. We'll know more in a few weeks with a referal letter. In the meantime he is to have 2 weekly appts with her where she'll show us baby massages and spend time in a sensory room.

She also said that it's too early to dx him with anything more "solid" so she says it's better to focus on what he has now and not to speculate and think "what ifs".

Wow, fast work MM. I hope things improve for DS.