I'm very confused and I don't know what to do.

[mumgoingcrazy]

DD2 is 3.3yrs. Apart from cognitively she is delayed across the board with gross motor being her biggest delay by far (she is at a 9-12 month level). She also has SPD.

Until today it was always believed that her gross motor delay was due to having severe vestibular problems (balance), and the OT's/Physios etc have treated her accordingly.

We have spent all day today at GOSH having the vestibular tests and the result is ........ it is all within normal range. We're completely shocked and now have no idea why her gross motor is so delayed.

She had an MRI a year ago and it showed her brain was slightly immature but that's all. Today the registrar suggested seeing a neurologist to see if the delay could be down to nerves or muscle weakness.

DH and I agreed a while back that we wouldn't see a neurologist as DD2 has been poked and prodded enough, she is making progress and wanted to just leave her be. I wondered if someone could tell me the benefits of knowing whether it's a nerve issue or muscle because if the treatment is lots of physio, well she's having that already. I can surely spare her another appointment and hospital on top of all the ones we have already.

Any nerve issues or muscle advice greatly appreciated, this is new territory for me.

TIA

the neuro doc may be able to discuss/sugessest another kind of disorder with you.
I know its another appointment, but it may be worth tying of you get a diagnosis?

What kind of disorders?

Forgot to mention that DD2 has also had genetic testing for general and rare disorders. They all came back normal.

she is a bit of a puzzle! but maybe the neuro dr may have seen something simelar and shead some light on her?
think you have to ask yourself what do you have to loose?

I know you're right, I just can't bear putting her through another day like today. She'll have no voice tomorrow after the screaming she did today.

I just want to know if I really do have to put her through more tests.

I know exactly how you feel, ds needed an mri when he was 2 weeks old, long story about the amount of f* up along the way, when it came to getting the results I really didn't want to know and refused for quite some time dh was taken to one side and told that he had to convince me to have the results!
my argument was that it didn't change anything I wouldn't love ds any less, and I don't he's my angel (corny I know)
but what dh said to me was that it's a mean o an ends and thats when the light at the end of the tunnel lit up (on that chapter anyway)

I guess it would be nice to know. I've been googling all evening (I know I shouldn't), and there are certain neurological disorders that DD2 fits into

There's some pretty horrible things on the net that is now in my head so maybe I should call the paed tomorrow and ask her to refer us (she suggested it at our last appt and I said no).

Thanks very much

Even if you don't need to know right know, you are your dd's voice and without being able to predict the furure she may one day want or need to know.
And without knowing a dx (if there is one) you don't know what options are open regarding therapy and treatment.

I would look at what further tests are possible and maybe consider any non invasive tests only.

Thanks anon, I guess I wouldn't mind doing the non invasive tests it's just that she's under 9 different NHS departments, and she seems to spend her life at one hospital or another. I just feel I want to give her a break and let her be 'her'.

Well.

Depends on the tests, I think. The neurology mob at GOSH, ime, aren't that invasive, at least not unless they have reason to look for something specific.

DD1 was puzzling for a while, largely because it turns out she has 2 completely unrelated rare conditions and everyone kept trying to put the symptoms of the second down to the first rather than look for another diagnosis.

Getting complete diagnosis hasn't "fixed" anything per se. But I have stopped looking, because everything that turns up is now consistent with her diagnoses and I understand how it works and how far I can affect it or compensate for it. And I can decide when something is worth doing and when it isn't. So in terms of long-term mucking her about, she's better off for knowing. If that makes sense? For instance she has little or no physio; I could push for it but I don't because I understand the extent of her hemiplegia and I think what we are doing at home just about keeps on top of it. And she hates being pulled and pushed about, so that's definitely a win for her.

IKWYM, i have ahd a couple of periods over the yeas where I have taken a break from appnts.
As the appnts came through I rang & just said we were away & could I put the appnts back a month, ended up with a couple of clear months, just to give me a break as much as ds2. I even let him bunk off sn preschool when he was about 3, I think i just needed to step out of the sn world for a while.

Do whatever feels right for you at the moment

It would be good to know I guess. I've decided to call the paed and give her the go ahead for the referral. I figure the appointment may take a few weeks or months to come through anyway and then if at the time I really don't want to go ahead with it I can cancel.

r3dh3d, I looked up hemiplegia after reading your post and this fits some of DD2's symptoms.

Thanks anon, I've also been known to take DD2 out of sn pre-school so we can just chill and do something nice together. Once they start school we won't be able to, so figure make the most of it!

HI MGC,
I know you will do whats best for your dd. Just wanted to let you know I hope it all goes well and will be thinking of you all. x

Thank you devie. How's life with you at the moment?

Didn't call paed today, I can't seem to bring myself to.

xx

Same as usual here. However we visited Bibic in June, who among other things said he needed body brushing, so we are eventually doing this after waiting over 2 year for the OT's to show us what to do!!
Dunno if you remember my dd, 13 ADHD and ODD, (cos it's usually all about ds). Her behaviour in school has deteriated and she has started to have absences.
Don't worry about the paed, you will do it when you are ready.
You still doing your brushing etc?
Did you get on facebook?
Take care x

Is the body brushing helping? We only do the brushing as part of our BIBIC therapy now rather than the deep pressure/joint compressions that the OT gave us. DD2's tactile sense is pretty much within normal range now. Did you find BIBIC useful? We're back there in November for another stint!

Sorry about your DD, I do remember you mentioning her. What's happening about her absences? Is the behaviour due to her absences because they can medicate for this can't they?

I hope you're ok, you have so much on your plate. Email me anytime

Still not on facebook, I'll do it one of these days.

Hi MGC,
Although the brushing is a battle and he's not very tolerant as yet, I do feel it is helping. Dressing is slightly easier though teeth brushing etc is still not happenening!!
Bibic were great, not too mention the nice little holiday we had with the gorgeous weather. We are going to go back also. Did you get the frequency sweep cd?? OMG!!
TBH and I know this sounds terrible I haven't as yet put an appointment on with the doc RE dd!!
I know it's no excuse, though my son who I really struggle with has refused to go to school since starting back in September. Not a new problem though, he has always been reluctant and hitty missy wether he has gone or not.
Are you any further forward in your own mind Re dd??
As for so much on my plate....maybe if I didn't have as much I would loose weight lol . No seriously, all us mothers have hectic lives!! As for being ok, we all have to be! Likewise on the email. Or better still, facebook
Take care x