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traumatic birth, delayed in all milestones, hyperflexible joints and poorish muscle tone, where from here?

(11 Posts)
fiveisanawfullybignumber Tue 02-Aug-11 15:36:39

DD saw a pead yesterday as she is 15m and not weight bearing, no crawling but bum shuffling and has only just learnt to roll over and can only occasionaly get from laying to sitting. HV and docs were worried about unstable hips, but her xray thankfully ruled out hip dysplasia.
However pead did say she has hyperflexible jooints and lowered muscle tone, he said he could spot it from the minute we walked in from how she was postured while I carried her.confused
I have been worried for a while that her traumatic birth may have caused some minor damage affecting her motor skills. I had two Eclamptic seizures, her heartrate was v fast at times with long decellerations after some contractions. When she was eventually born it was all a bit chaotic. Born through the cord, it was wrapped around her neck a few times (not uncommon I know) but it was also very very twisted, to the point where it looked like an old fashioned telephone wire or a spiralled candle. A combination of all these things surely must have meant some impaired blood and oxygen flow to the placenta and her. The birth hospital denies either of us were at any risk.confused

She was in full uncooperative mode yesterday for the pead, having a meltdown over weighing and seeing him. At least he's seen her in full swing! He wants to monitor her progress, see her again in 3m, at a different time of day to see if he can do a more full evaluation of her playing etc, then see her again at 2 to see how her speech is developing.
Looking back she has missed all her motor skills major milestones, she didn't smile till she was just over 3m, but i blamed that on her reflux pain.sad she's a bright little button mentally, very alert, just giggled in delight when she saw a box of blueberries heading her way.grin
Anyone else go through something similar. She has 4 older siblings, and I don't like to compare, but she is developing very differently to her older brothers and sisters.

hildathebuilder Tue 02-Aug-11 16:14:46

Hi, i don't wat to leave your post unanswered, nor to worry you. You say she is bumshiffling and she can get from laying to sitting. Both of these are good signs for the future even if she is delayed with her motor milestones as I understand that even with delay these things bode very well for thefuture.

My DS is just over 14 months corrected age (he was prem) and has Cerebral Palsy, low muscle tone which is usual for a prem, and hypermobile joints but the prognosis considering that is good. he can sit, crawl and weightbear. But not get from laying to sitting at all ever. He can get from sitting to standing though.

I would try and get physio for your DD in the meantime. the hyperflexible joints could explain things and be no problem in the longterm, or there could be more going on. If you can get physio it will really help whatever the cause of the delay is. Theyw ill also help show you how to help your DD, how to position her and what else to do. Hopefully if she is bright any motor delay may be caught up or will be minor

elliejjtiny Tue 02-Aug-11 16:23:47

My DS2 was very similar to your DD at that age (he was 3 in April) although he didn't have a traumatic birth. DS3 is similar although not as bad.

DS2 started to sit unaided at 16 months and was walking at 2 years 10 months. I second the recommendation for physio.

steelev48 Tue 02-Aug-11 16:40:13

My son was very similar. He was referred to a physiotherapist when he was 10 months old and made good progress. He also had portage for a couple of years which included specialist soft play sessions to help him to cruise and then to walk in a safe environment. His milestones were all late but he did he get there eventually. Hopefully some physiotherapy is all that your daughter needs. Good luck.

blueShark Tue 02-Aug-11 16:54:20

I would advice Retained Reflexes therapy, starting as early as that can do miracles! Most centres deal with babies as old as few months if they had traumatic births, long labour etc.

Agnesdipesto Tue 02-Aug-11 20:28:57

You can ask for copies of your birth records and her neonatal records
You can ask for an appt with an obstetrician to talk through the birth eg explain the CTG traces to you and if evidence of distress
You can ask the paed straight out if he can exclude CP - can assess this by an MRI scan. Scope is the CP charity and have lots of advice (I am not saying it is CP but that is a possibility)

If you have any concerns whatsoever the birth was botched by medical error, then I would speak to a specialist solicitor (Law Society website has list) who can get the notes and look into it / get an independent report. Legal Aid for such cases is on the verge of being withdrawn so if you don't look into it now you might miss the chance to do so for free (legal aid is in child's name).

Try and access physio but if thats not possible quickly on NHS consider applying for DLA etc and paying privately.

You should be able to self refer to portage

survivingsummer Tue 02-Aug-11 20:51:06

My dd had traumatic birth and has some similar motor problems. MRI showed slight damage from hypoxia and so we knew there would be something - although she is also appears unaffected cognitively. Main issues are low muscle tone and hypermobility with very slight stiffness in her limbs when she gets stressed/excited. There has never been an official Cerebral Palsy diagnosis and it mainly affects her fine motor skills now she's older.

Would definitely recommend the physio and an OT referral. DD also struggled to get into sitting from lying down and was probably only able to do it consistently from 16 months or so. She shuffle crawled at 15 months and walked at 20 months and physio definitely helped with exercises to move her forward with her milestones!

rabbitstew Tue 02-Aug-11 23:17:50

Yes, ds1 has low muscle tone and hypermobility and at 15 months still couldn't roll over or get himself to sitting. He is now 7 years old and takes full advantage of his photographic memory, phenomenal imagination, unusual abilities at mental arithmetic, reading and writing to make up for his need to rote learn physical skills and his comparatively poor visual manipulative skills. He was late talking, as a result of low tone in his mouth, but by 3 was clear enough to be understood and well within normal bounds.

I would thoroughly recommend physiotherapy - not just as a one-off until your dd is walking, but again when she is a bit older, to increase her strength just to be able to enjoy playground games, more, and to make physical tasks easier, particularly if it turns out she does have difficulty with working out physical skills for herself (it's hardly going to be easy to work things out for yourself if your body doesn't, in any event, have the oomph to carry a task through properly, so low tone left untreated will merely serve to exacerbate the symptoms of poor motor planning, otherwise). The physio taught my ds1 how to roll, get to sitting, pull to stand, crawl, climb stairs and walk... and in the last year, has provided very useful exercises to increase his muscle strength around his hips, knees, shoulders and core. Other things that have worked with ds1 have been: spending hours at soft play areas and in playgrounds shoving his bottom up and down things and physically manipulating his body to help him learn how to, eg, climb, skip, hop, jump, pedal a trike or bike, walk along a beam; subsequently, swimming lessons (individual worked best); keeping him active so as to build up muscle strength; painstakingly teaching him anything physical, including dressing skills; not letting him give up on physical things before he'd gained some degree of mastery over them; piano lessons (these have been hugely successful - at last, we found something he enjoyed doing with his hands); and some retained reflex therapy.... Ironically, he never needed help learning to write - I guess the formation of letters can be pretty quickly rote-learned, and as I say, his memory is unusually good, fortunately, since it takes the place of instinct... Basically, as he gets older, things have got easier, because he has acquired more and more physical skills that help him towards independence and once he can do something, he can do it quite well. At the beginning, since most of what most babies seem to learn relates to movement, it seemed like a huge task to help him, but it doesn't seem too bad at all any more.

One big thing I did learn was that worrying about whether my ds1 was the way he was because of his hospital treatment, or events during my pregnancy, was the biggest waste of emotional energy in my entire life. He was and is the way he is, and panicking about whether things could have been different if this, that, or the other had been done differently, was a huge hindrance to getting on with dealing calmly with the adorable little boy I had. If I had a child with severe, lifelong physical or cognitive problems that would be one thing, but I don't, I just have a totally adorable, eccentric, extremely clever little boy who will grow up to lead an independent life, even if it will require a bit more input from me to help him reach physical independence (and gain a modicum of common sense!), so the initial quest to find out why was a bit of an emotional drain of a waste of time in the end and did not result in any answers, just lots of prodding, poking and upsetting situations for ds. And it is rather lovely to be able to get all excited about what for most children would be irrelevant achievements, but for my ds1 are another example of huge strides towards being able to do everything that other children of his age can do (plus a lot of things that other children far older than him still cannot do).

rabbitstew Tue 02-Aug-11 23:25:49

Sorry, I should say investigations didn't result in any helpful answers and certainly didn't result in anything that changed the treatment/help we received in any way whatsoever.

hildathebuilder Wed 03-Aug-11 06:42:03

I would also add that although DS has a diagnosis of CP, we haven'y had invesitgations etc. We were advised that an MRI wouln't help to either confirm cp or rule it out. DS could have a clear brain scan and still have cp.

fiveisanawfullybignumber Wed 03-Aug-11 09:15:23

Thanks for all your replies, lot's to take in. Rabbitstew, you talk lots of sense, thank you!
Birth hospital are very defensive, saying she suffered no hypoxia at all, and neither of us were at any risk of death or anything. I really don't know how they can say that, as many babies don't survive Eclamptic seizure, I feel we were very lucky to both come out of it all relatively unscathed.
I suppose i am worried about mild CP, yes. Think I will ask if it can be ruled out when i next see peadiatrician in 3m.
DH was bundling (our version of gentle playing/playfighting) with DD last night, and she actually pushed up on her legs to play with him. Think we'll do lots more of that as she was giggling away but really working hard at moving and rolling around with him.grin

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