14 week old has hypotonia...have you had similar experiences?

[brizzlemom]

Hi, 1st time putting toe in water to see if there others out there with similar experiences who can offer a listening ear, advice, just a bit of support I guess.

We have had a ton of tests (knew at 2 days old there was something amiss) but no diagnosis yet. My dd is ng tube fed...4 trips to A&E so far after being discharged about 6 weeks ago...and the trauma that comes with that! Find it difficult when people come over to coo at a new baby when out and about and then are lost for words when they see the tube. She is still very floppy and aware her difficulties will become more and more apparent when she is obviously far from a newborn. Reluctant to attend playground etc i went to with my toddler as get angry and/or tearful when people stare and also dd is very sleepy so very unlikely to wake up and take anything in.

Help! How do you begin to get your head around your child being different??!!! I just want people to be cooing over my gorgeous smiley new baby! And how do you cope with the sudden influx of loads of professionals...some wonderful and some less so!! Thanks in advance for any feedback....

Hi, My son wasn't tube fed but he was/is hypotonic... this is the site I put together about him.. (currently updating it this week too!)
charliesmomuk.weebly.com/index.html

It might help...or at least, you are not alone!

Thanks so much for sharing Medusa. Will reply more when ive had chance to digest all your info. Thanks especially for sharing the letter x

Hello

It is very hard when everyone has babies that are starting to move around and wriggle, I found this one of the hardest stages. I remember going to a baby massage group and realising that my then 6 month old ds, was more floppy and still than all the newborns.

I stuck with friends who knew what was going on, and were lovely without being too pitying. I came on here a lot, and have made some fantastic friends from mumsnet special needs, and on a FB group for children with genetic conditions.

As ds got older I came over very lion mum about taking him to groups and being fiercely proud of him, I also met a mum in rl who has a disabled ds and we went to a sn playgroup together.

It will get easier.

My ds is 4 he has been hypotonic since birth, he was tube fed originally and then weaned off the tube.

His hypotonia has led to some issues with swallowing, reflux and slow motility, but these have improved over time, and although his reflux is still medicated, his swallow is safe and he has a normal diet.

He is thought to have a genetic condition, of which hypotonia is a symptom.

He sat at 15 months and walked at 27 months. He still tires very quickly now, and uses a sn buggy when he is struggling.

He slumps a lot when he sits and is tired, so has supportive seating at home and school.

One of the things i wish we had done when ds was younger is to have asked to be referred to a good occupational therapist, the original one we had was awful and wouldn't refer us for a bath seat or any equipment, despite ds not being able to sit. The OT we have now is brilliant and has sorted out equipment to help him in daily life.

Medusa - love your blog, the photos of your ds slumping and looking tired are very familiar!!

Medusa I remember reading about Charlie years ago when ds was diagnosed with mild hypotonia it wAs fascinating and inspiring thank you for sharing

Hello, my DS has hypotonia too. we spent first week in special care and feel like the hospital is our second home now! The amount of professionals we have seen in 4 months is unreal...the NHS have been amazing.

We are no nearer to knowing why he has hypotonia but he has had a ton of tests already. MRI is next on the list.

We currently have the physio and occupational therapist (OT) visit fortnightly and it has made such a difference. We also have loads of equipment on loan from them and that really helps too. In just a few weeks we have taught DS to put hands together and to his mouth. We are so pleased to have achieved it. I'd love him to have more neck control but that seems a long way off at moment.

We do a mixture of typical baby groups and then have just started going to some special needs groups. The mums there are amazing and have given me so much information about local services I would not have got anywhere else.

It is worth contacting your local parent and carers group to find out what is happening locally. I don't suppose you want to say where you are?

Good luck with it all. It is so hard to be around "normal" babies and such an emotional and confusing time x

I've got 5 DC and 4 of them have hypotonia. 3 of them have had ng tubes. I found a sn baby group brilliant. When DS2 was a baby another mum from that group and I used to go to a "normal" baby group together. With the professionals it can be overwhelming. Don't be afraid to set aside some days when you don't have appointments, you need to have a life too.

Thanks so much for the messages & advice. My health visitor poo pooed a sn needs toddler group but I think I'll investigate it further - thanks. I can already feel the tendency to just stay & play indoors but know it'll be detrimental in the long run. We have a great physio which I'm very grateful for. She is referring us to an ot...what sort of equipment/seating etc should I try to get from them?

Thanks for your kindness...I'm also fairly new to mumsnet, should I just come back to this thread in the future to discuss stuff or is there a particular group I should try to hook into? X

I'm pretty new to this too so don't know if there is another thread??

Equipment wise..
Leckey squiggles early activity system
Bath seat
Tumbleform chair
Leckey sleep form mattress

I also use a lay down car seat for DS. It is a britax one. Our third! First two were no good. We use DS's DLA money to buy extras like the three car seats. You can apply for DLA after 12 weeks if you haven't already. Rest of equipment is on loan free from NHS.

I work with children with additional needs and I still learnt loads from going to a SN parent group. I'm not sure your HV is best placed to comment. We tried two out and one wasn't right for us but we felt really supported and comfortable at the other.

If you are in the Yorkshire area I would recommend Little Pips in Mirfield. Parents can self refer. We are getting free hydrotherapy though them with a physio. Is fantastic.

The equipment I wish we had been able to access would have been

A bath seat
Supportive seating for play
Supportive seating for eating
Profiling bed

I would just start a new thread on sn children as and when you have a question, or to have a moan, ask advice etc. There is also sn chat, which are where threads disappear after 30 days. In sn chat there is a weekly chat thread which is called The Goose and Carrot - it is a virtual pub, and anyone is welcome to join in with anything really!

I have found loads of support, advice and friendship here on these boards, from posters with children with a variety of different disabilities.

See you around the boards!

Thank you guys...really kind of you to take the time. I'll get on to it re equipment. And good tip re car seat. I will get along to an sn group - the longer I leave it the more I can pretend everything is just suddenly going to be hunky dory one day with dd! (I am based in Bristol by the way). X

Ah, that would explain your name!

We used a rearfacing carseat recommended by our physio, and got a family fund grant to pay for it. Now ds is in a sn car seat which goes up to age 12, but still has a 5 point harness and extra support.

Have you heard of SWAN UK (Syndromes Without A Name) it is a support group for families with children who have yet to get a diagnosis, they have a very active facebook page and local meetups - I know there are a few that happen in the Bristol area. Link to their website is here

There have also been some special needs board meet ups fairly local to you, in Swindon.

Which car seat did your OT recommend?

Sorry hazeyjane. I mean which car seat did your physio recommend?