Low muscle tone

[Albaba]

Hi. I have 13 month old ID twin girls born at 33 weeks due to IUGR and discordant growth weighing 4lb 7 and 2lb 11. At our last reveiw with the Health Visitor she raised concerns that they were behind in their development and not meeting their gross motor milestones. Ironically twin 2, the smaller one is now doing great. She is sitting unaided and can confidently stand and cruise holding on to furniture. Twin 1 has just learnt to sit unaided at 11 months corrected and can crawl slowly. If you try to get her to stand she just folds. Was seen hoping that she was just a late developer or would need a bit of physio to get her going. Was seen at childrens multi disclipanary clinic were the Dr said that she had low muscle tone in her trunk and she would need to go to Physio. Dr then called me back after discussing with another Dr and said that they were sending her for an MRI scan to check to see if she had a bleed on her brain! Surely this can't be good? Dr wouldn't commit herself and said that she could just be a late developer or that there may be some other reason to her being delayed. She spent two weeks in Neo natal and was tested for everything and they all came back clear. Also when she was born they thought that she had Downs Syndrome but a blood test ruled this out. Surely they would have picked it up by now if something was wrong? Also they are going to recall my hospital notes to check for TTTS. We are now stuck in limbo waiting for an MRI scan and physio which could take weeks if not months. Just wondering if anyone else had been in this situation and what the outcome was. Googled so much that I now think that she could have CP but praying that I am wrong.

Gosh - how worrying for you.

DONT GOOGLE ANYMORE

MRI is likely just to double check what they found in SCBU, they could just be ruling things out while you wait for physio.
Did they give you any sort of time frame for either ?

Sorry no first hand experience , but didnt want this to go un answered. Hopefully someone more helpfull will be along soon.

for you x x x

I hope you have some good news soon.

Re: the low muscle tone. I took my (single baby) DD to our GP just before her first birthday because she didn't take any weight on her legs at all & wouldn't pull up. She just kind of buckled if I tried to get her to stand at all. The GP checked her out and then tutted and shook her head. She said that DD had very poor muscle tone & needed to be sent to the development pead.

I was worried sick (and found all sorts on Google!).. About a month later, DD suddenly decided to pull herself up. By the time the apt came through (about 4 months later) she was cruising around the furniture. I had a chat with the Dr on the phone& he was happy to cancel the apt. She now walks well - she's just got a very cautious personality and takes physical things very slowly even now.

I know you are having thorough checks because your baby was prem, but I just thought I'd tell you that to show you that there may not be a bad outcome.

I'm sorry this must be a such a worry for you. My DD1 didn't move at 13months. She never really crawled, more or less went straight to walking a little while after turning one.

I don't have multiples but my singleton DC2 had something called benign hypotonia of infancy.

It basically meant he had low muscle tone of unknown origin. He was late to walk - about 17 months- and crawled from about 11 months. He also had really pronounced head lag.

He had various tests including MRI and nerve conducting tests etc but nothing found and he is now a v active and mobile two year old. Our paed said this happens sometimes for no parsecular tendons.

no particular reason. strange autocorrect i have!

Thanks for all your replys ladies. It's good to know that others have been in a similar situation and have had positive outcomes. We saw a lovely Physio during the week, we went private due to the length of time we were going to have to wait for a NHS appointment. She was very positive and encouraging. Give us lots of useful advice and exercises to get her moving more and to improve her strength. We have her in Nursery two days a week and they have been great too doing her exercises with her during the day. I can see a difference already. She can now sit confidantly on her own when you put her in to the sitting position. Just working on her being able to get in to the sitting position on her own. Literally a couple of weeks ago she just didn't seem to have the strength and if you tryed to get her to sit up she would fall straight backwards. Still have the MRI to get through though but fingers crossed if they do find anything it will be minor. I was literally worried sick about her. Left work in tears last week after the Doctor phoned me and started talking about MRI scans, TTTS and bleeds on the brain. I know its a bad thing but with google you can get so much information and I think that it is easy to convince yourself that you have a condition and to fit your symptoms to it. They had pretty much all of the risk factors for CP. Thanks again. Albaba

Hi Albaba,
I read your message and though my DCDA boys are only 9 months, it could have been me writing the very same thing 6 wks ago. My eldest has been right on(if not ahead)of all his gross motor milestones but my little one is about 3 months behind and seemed to be lagging even further behind all the time. Luckily I put the boys on my BUPA as soon as they were born so we were seen very quickly after our Health Visitor and GP raised concerns. The Paed we saw also said low muscle tone in trunk and legs. We had numerous blood tests (for a muscle enzyme issue - do not google, I scared myself half to death) and were also referred for an MRi.

We started physio and within 4 days our little one started to roll from back to front, which he'd never been able to do before. Within 2 weeks he was starting to sit unaided. A massive improvement in a very short amount of time. The MRI wasn't nearly as bad as we feared and 2 weeks later he was given the all clear. The muscle tone in his trunk and legs has improved vastly and though he still does have head lag, he's improving all the time.

Please don't worry. I was terrified about CP too but if your little one is passing toys from one hand to the other and uses both sides of her body fairly equally, I'd say this was unlikely. I also think you might have noticed that by now.

Our little one had a fairly traumatic birth, having slipped into transverse they had to cut through his placenta to get him out which caused me to lose a hell of a lot of blood and for him to have quite a shock. They were concerned that this may have caused some damage to his brain but it turns out all is fine and he's just a lazy bones!

I really hope you have a positive outcome. Try not to worry too much. If you are already seeing improvements as a result of the physio, then the chances are your little girl is just a little bit too chilled out and needs a little helping hand to get her to catch up with her sister. We will never know why our little one is so behind his brother but they are confident that he will catch up eventually. Best of luck.

Plum