DD has a diagnosis at last

[jenk1]

we saw the paediatrician today.

He said she has Benign Infantile Hypotonia, when we asked what that meant he said its a muscular disorder that will improve with time and its genetic, but no one on either side of our families has this.

He also said that DD is showing Autistic Tendencies - in his opinion HF but that he couldnt give a definate diagnosis until she was older,

I dont really understand the first diagnosis he has given so if anyone could enlighten me id be very grateful, he has referred her for SALT and RAST tests for her allergies-YIPPEEE at long last she is being tested for her allergies!

He was very very nice and patient and took his time and played with DD even though she shook her head and waved at him to go!!

So i feel relieved in a way, its strange but i knew she was probably AS/ASD but i dont know about hypotonia though.

i;'ve been told that hypotonia is a sympton rather than a formal diagnosis. i have no idea where this will lead us, going to see GP on monday to see if dd2 can get referred back to paed.

dd2 'skipped' some of her devolopmental milestones, she barely crawled, went straight to walking so its possible she just found it easier to stand her her trunk muscles are weak and she found it tiring. the video clips of her crawling shoe she is wobbly even then.

piedro boots can work wonders, sparklymieows kids both wore them the give them support.

Jenk, my DS has piedro boots, don't worry - they are fine. They look great - people keep asking me where I got his great boots from! And they really help with the walking.

pages, if you dont mind me asking, how long has your ds been wearing piedro boots and did they tell you how long he would have to wear them?

The physio said she didnt know how long dd would have to wear them for it could be months or a couple of years,she did mention that dd had hypermobility whatever that is, im going to have a look on the net to see if i can find out about it.

Jenk, my DS sounds very similar to your DD - he has low tone and hypermobility. The latter just means that his joints are very slack - it actually runs in my family although it is probably also part of his overall condition. It tends to go hand in hand with developmental delay and CP, etc. But it could be long term or short term. On the milder end it just means double-jointedness. My cousin had to have calipers and wear piedros until she was 3 and she is absoltuely fine now at age 30 something. She had no other problems. I also have weak joints and have had an operation on my left ankle and wear a splint for a while to correct this. But with DS I suspect it may cause more difficulties. I have only been told he will probably have to wear piedros for the foreseeable future. But you should also check out getting some insoles (foot arches) made - DS is getting some and this means he can wear normal shoes with them. Ask your physio about this if you are interested. DS is not suitable for splints as the one good thing about hypermobility is that apparently there is no risk of a permanent deformity in the foot by it turning over - the flexibility of the joint in itself prevents this, whereas with spasticity (tightness) which occurs with CP for instance it is the reverse problem. HTH.

Hi jenk, dylan has piedro boots and also splints and his ankle laxity has improved considerably.
He has had them for a year now.
They should give you a catalouge when ordering them and they have some ace little uns for girls!!!
Speak with you soon, i'm off to watch the ex factor!!!!!!!!!
PS: hope you had a good nite for your anniversary.
Butty.xxx

Butty, have the splints corrected the ankle laxity? I was told by the orthotist last week that it wouldn't correct it, only help while wearing them...

hi pages,
sorry, dylan has had the boots for a year but has only had the splints for 3 months!!!!!!!!
the splints are just for extra support as a way to enable him to walk, but in all honesty i havmt seen much improvement with the walking in 6 months!!!!!!!!
the boots however have helped!!!!!!!!
Butty.xxx

Thanks Butty - yes, the boots have helped my DS too but the walking independently was slow to come. I think it is hard for them to let go when they feel unstable, but they get there in the end. Good luck with the splints - hope they help.

Cheers Pages,
I am hoping that dylan to will start walking independently soon although the balence is a real issue and with everything else going on at the moment, who knows??
May be i will know more on thursday when i get his results!!!!!!??????
Still i'm glad that he does take the odd few steps as it is a big improvement from a year ago when they said he may never walk as the hypotonia is very severe and also the problems with his frontal lobe of which controls speech organs and movement etc...
Butty.xxx

another shout for peidro boots - as well as being an enormous help to dd the boots were lovely to look at like baby dc martens, dd had purple supportive ones first and now has gorgeous red suede ones with little cats on, everyone who sees them wants them! You get a good choice and they really help

and even though dd had hypotonia it actually ended up being her eyesight and undiagnosed nystagmus that caused her mobility issues.

Hi Piffle, whats distagmus??? Never heard of it!!
Dylans sight is fine as well as his hearing, its been checked over and over!!!
I agree the boots are very stylish although not as much choice for boys and yes i do think that they have helped with dylans stance etc....
Butty.xxx

nystagmus, basically an eye wobble, she needs to tilt her head to get a steady view and this causes balance probs, also she cannot see definite shapes, she sees things more blurr, she walks inot door frames and head height tables, its anight mare, she cannot perceived depth either so to her a change in flooring like carpet to tile looks as deep as a step, she will not walk down steps alone and takes huge leaps over changes in flooring ie: cracks in the tiles at Tescos etc, she is ok at home and familiar places like most visually impaired kids but very vulnerable.
We're not sure how we can help her, we're doing all this now with SENCO and peripatetic teachers and lense specialists and oh God EVERYONE is involved and it's overwhelming and it makes me cry every day at the moment
Sorry little vent....

My lovely little boy Elliot who is 19 months, has hypotonia. He's 19 months and is not yet mobile.
I'm feeling a bit disillusioned with all the health professionals and I was wondering if any body else has had experience of this, I could do with some advice/support.

Welcome to mumsnet, Sonya.

This is quite an old thread so people might not look here but there are a lot of mumsnetters with experience here. If you click on the 'start a new conversation' bit and start a thread with hypotonia somewhere in the title people will be able to help you more easily.

Welcome to the SN board. You'll get a lot of help here.

Thanks for the tip coppertop, will follow your advice. It gave me a boost to get a reply so quickly.

You're more than welcome, Sonya.

Hi, Do any of you have any recommendations for speech therapists in London that are good with problems due to hypotonia - my little boy is 19 months and I think we need to now go see a speech therapist. The physio sessions have been amazing, and he is improving rapidly, finally pulling himself up this week though pretty far from walking still.

Thanks very much for any recommendations!

Hi HayleyK,

just wanted to bump this for you!

It's great your DS is pulling himself up! Well done!

We go to a private SALT in NE lonodn, and she seems great.

CAT me, or I can get in contact with you.

All the best,

would you be able to e-mail me on [email protected] - I think that address still works - if it doesn't then I will sign up for the CAT section. Thanks loads,
Hayley