Weak left side: Could you help with understanding meeting with paed, I'm rubbish on the spot!

[UpsideRaspberryAround]

I always have a million questions after an appointment and listen like a lemon at the time.

DD was first referred to a paed for stiffness on one side, couldn't lift her arm, weight bear one side, fisting one hand and so on at 6 months. a Lot of rigidity on one side.

She's come on leaps and bounds, at 12 months starting to crawl, a little wonky but doing it. Her right hand isn't quite as good, she can't hold larger objects with it and uses her left as a preference.

Her MRI was clear, and the paediatrician said she has some weakness on her left side, it's not her hip or anything as it's both arm and leg involved. He said though she's clearly compensating and the MRI is clear so he's not worried about hemiplegia but something must have happened at some point, that's unknown to cause weakness. He said he won't need to see her again but will get physio to phone about exercises.

I was fine, I'm not hugely worried as it's not proving to be a big problem, she's a bit delayed/ wonky but corrects. Her crawl for example has gone from dragging one leg to a little stiff. She can't roll though or cruise as she doesn't coordinate her leg to do so, she'll tiptoe one foot when standing and doesn't alternate legs.

However I've thought hang on....will she always have an issue or will it correct further? I should have asked. Now I'm worried she'll always have a weak hand/ leg and I'll never know why if that makes sense. Should have have asked more? Will I get a letter about findings? It feels a bit odd to just say oh that's how she is.

I know this sounds useless!

You should get a letter detailing the visit.

So your DD has weakness on the left side but struggles with her right hand? Is that right?

I'm muddling left and right, her left but on the right side to look at. Keep doin that at appointments which makes me look very clever.

Thanks zzzzz, I guess I'm just wanting an answer. It would have been easier if the scan showed a small issue in terms of an answer but then outcomes would be the same I guess

I'm a senco an I've learnt a diagnosis leads to help, but exactly the same issues presenting without a diagnosis normally get nothing! I'm tad worried if she needs a little help at school shell have no access, for example if it affects handwriting or fine motor a bit. Neurotic maybe but I'm always struggling with securing assessment or outreach for this reason, madly for example my statements children in yea five for example are not in the lowest ability group nor are they the ones struggling the most. Disgusting really (obviously as a school we support them but I worry for high school)

The last visits did not result in a letter.

Zzzzz, my daughter was very unwell with jaundice, unresponsive and in a week. Does sound similar. She was though not having seizures very stiff limbed with an arch to her back, I always think she was changed after a little, sleepier, stiffer and short term feeding issues

They won't be able to tell you about the long term with any certainty I'm afraid. Often it's a 'wait and see' with these things especially as MRI was clear. It sounds like she's doing well and making progress which is the most important thing. Physio will help maximise her potential I'm sure.

My 6 yr old DD has a few difficulties after lack of oxygen and seizures at birth. It's been a waiting game for us too so I do understand the frustration with not knowing what to expect in long term. She hasn't needed a DX to gain additional support at school.

Despite the clear MRI she clearly needs physio and OT. Just ask about this and don't be fobbed off.

Zzzzz, I'm just shockingly bad at left and right in general! For some reason I have a block on it.

I agree its a good outcome... But I'll admit to not regarding it lots. I teach children with huge pproblems and clear scans and others showing big problems, such as my sister, with next to no impact.