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ADVICE PLEASE baby arm tremors/spasms and regression in babbling
8

saraaa · 17/09/2020 06:25

For some background my baby was born with no complications. Diagnosed with reflux and CMPA when she was four months old. Developed very well in terms of physical milestones - rolled very early at 12 weeks, crawled at was pulling up to stand by seven months. She has always been full of energy and constantly on the go. Smiled, laughed, played peekaboo, cooed, holds hand up to be picked up.

When she was seven months I noticed her arms jerking forward in front of her like she had an electric shock- this happened when she was eating. It happened two or three more times and we went to A and E that evening where we were given no tests, given the all clear and told to go see our paediatrician. Our paediatrician referred us on to a paediatric neurologist.

Whilst waiting for this appointment the arm spasms became a lot more frequent and she also began to have a shiver sensation like the feeling when you get a shudder down your spine. It usually is preceded by certain stimuli for example if my daughter picks up sand or a leaf and squeezes it her arms will jerk about 3/4 times in a row.

During this time I noticed my daughter had this habit of slapping her hands together I had always put it down to normal baby play but of course I began googling and came across some very frightening genetic disorders. I also began thinking that the week prior to her first arm spasm she had learnt how to pull herself up to stand and had a few falls in her cot and playpen. We got to see the neurologist 4 weeks after the first arm jerk incident. During that time I noticed my daughters babbling had also regressed and she was becoming much less vocal throughout the day.

When we met with the paediatric neurologist I voiced my concerns about a possible genetic disorder and she said she did not think that it was a genetic disorder. I also asked if these spasms could be from the result of a fall (brain or spinal cord injury) and asked if we needed an MRI. The neurologist said there was no need for an MRI at this stage and she said she believed it to be infant shudder syndrome which is benign and goes away with no developmental/intellectual impact. She sent us for an eeg and it came back all clear however the eeg was for 30 minutes and my daughter did not do any spasm or jerks during it.

My daughter is now 9 and a half months and has many of these shivers/spasms throughout the day she does not vocalise anymore she is quiet as a mouse- she squeals or sometimes coughs if she wants my attention. She used to babble and now she doesn't. A new element of the shuddering is that she shakes her head side to side involuntarily like she is saying no and sometimes throws her head back and looks up at the ceiling.

She has also developed an extreme phobia of balls which is so bad that she trembles in my arms if she gets near one. (She had no problem playing with balls before).

We noticed just this week that her stranger anxiety is pretty intense she clings to my husband or I if somebody new comes near her.

Her hand slapping has been replaced with hand flapping. She hand flaps throughout the day when shes playing with toys or gets excited.

She hates having her nappy changed and will not lay down anymore and constantly wriggles as soon as we put her down. I understand some of these can be passed off as normal baby behaviour but I just think that as each week goes by there is some new red flag.

What I'm most concerned about is the regression in her babbling. I keep thinking if this was infant shudder syndrome that should not be happening. Our next appointment with the neurologist is in two months and I am so anxious that whatever these spasms and shudders are that they are impacting my daughter each day. I have contacted my neurologist and kept her up to date with all of my concerns however she still believes this to be infant shudder syndrome.

We have of course considered the possibility that this is autism however she still smiles, giggles and has eye contact with us. Also I haven't heard that tremors/arm jerks are a sign of autism?

Should I be looking for a second opinion and asking for an MRI could these spasms be caused by a fall or am I being overly anxious. Could these symptoms be autism? I would love some advice.

Thanks

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Poppywood · 17/09/2020 19:27

Hello. I'm so sorry you are so worried.

I was concerned reading your post and what you described until I read that she had, had an EEG which was all good.

My daughter started having spasms at 9 months old which sound similar to what you describe, and was diagnosed with a rare and devastating form of epilepsy called infantile spasms which does cause regression and is difficult to get under control with medications (although my daughter responded well to treatment). But the fact she's had a clear EEG, would strongly suggest it's not that. My daughter only had a 20 minute EEG but it showed very chaotic brain waves even though she didn't spasm during it.

It obviously doesn't rule out seizure activity completely as some types of seizures do only show on an EEG at the time of the seizure but I think it's very reassuring if the neurologist was happy with the EEG.

I just also wanted to say I also have a nearly 12 month old baby boy, who was very vocal with lots of babbling until about 6/7 months and then he also went very quiet and stopped talking for a good 3 months I reckon. But suddenly it started again and now he's saying a few words.
I think sometimes when they are working on another area of development it's all too much for their growing brains and they stop doing other things. So in that time, when he was quiet he started doing lots more in terms of gross and fine motor skills and he also learnt to eat proper food! That's a lot going on for a little bubba so I think it was just that he was busy doing and Learning other things!
Also he hand flaps too, when he's excited and happy - I'm not worried about it (not that autism particularly worries me anyway, I know some pretty fantastic kids and adults with autism) but I think doing it at this age when excited is very typical. If she did it a lot of the time and not in situations where something has made he excited it might be an early sign of autism, children with autism do it as a way of calming themselves and self stimulating, so you might find her doing it when she's on her own or upset - not just when she's excited.

I don't know if any of that helps of reassures you but I hope so xxx

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saraaa · 18/09/2020 05:16

@Poppywood

Thank you so much for replying to my post. I am relieved to hear that infantile spasms would appear on the ECG even if she didn't experience a tremor during the ECG. I hope your little girl is doing well.

I have come to terms with the fact that there is something up and absolutely would have no problem if my dd had autism. I know that early intervention is important so I have ordered the more than words book by Susan Fernman it seems to be highly regarded for developing communication skills.

My concern is that the tremors/arm spasms combined with the regression in babbling and autistic traits may indicate a genetic disorder :(

There is so little information about infant shudder syndrome online and it never seems to indicate a loss of babbling. If anyone has experienced this or tremors/arm spasms with their baby before I would love to hear from you?

Thanks

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Poppywood · 18/09/2020 07:12

I hope you find some answers soon. I found the time during which I knew something was wrong but we didn't know for sure what it was and what it would mean for her future the hardest time. Much harder than actually getting a diagnosis because at least then you can start treatment and as you say early intervention.

The incessant googling, worrying and wondering if there is something wrong is really hard.

If you have a good and understanding GP then they may refer her straight to genetics, it's worth maybe asking? I know others who have managed this. Personally I have always found GPs to be less helpful when another consultant is involved (especially neurologist) preferring they make the referral, if necessary. But they are referring doctors so if you can convince them they can do it.

You may also be able to get an initial microarray
done privately. Also if you haven't already, it might be worth joining the SWAN (syndromes without a name) Facebook page and posting on there as well as having a look at their website. You might find more parents with a similar experience.

That book sounds great, and very helpful. Even if your daughter doesn't have autism I imagine it will still be an interesting read.

It's tough being a mum - so much worry all the time! I try to gain perspective and just think in 20/30 years time, (hopefully) I'll wonder why I worried so much and that in the end it will all turn out ok. No matter what their challenges, strengths and weaknesses are.

My daughter has cerebral palsy, epilepsy and a vision impairment - she can't walk, she mostly likely never will independently, but that's ok - she's 3 and does the best Scottish accent I've ever heard, which is just HILARIOUS - on good days I feel sure she will be ok, and find her own path in life.

Good luck finding answers xx

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Gilmartin89 · 05/01/2022 19:28

Hi I have a 9 month old just been for an EEG any chance you could say how things went? Xxx

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Firsttimeasdmom · 05/01/2022 21:07

Hi there, hope you get answers soon,

My little boy presented with hand and leg flapping as a baby and he also did a full body shake while clenching his jaw. Not sure if it would have been considered a jerk, and it did not look like a seizure. He went on to present more autism signs. He is diagnosed autism now and the full body shake changed over time, now he just likes to be squeezed so for us its a sensory experience he seems to enjoy.

Hope this helps

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testy1997 · 06/01/2022 13:48

@Firsttimeasdmom how old was your baby when he would shake?

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10187Mummyof2 · 17/05/2022 19:37

@Gilmartin89 Hi, my 8 month old is going for an EEG. For same symptoms as above, just wondering how things went with yours? X

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Louiseemily90 · 29/05/2022 10:14

Hi,
sorry to hear you’re going through this is absolutely terrifying. If you’re still concerned keep going back - we have had lots of issues with our son and it’s frustrating not being listened to however we do feel like we’re coming out the other end now. The fact she’s had an EEG is reassuring as if it was infantile spasms the brain activity is always in some form of seizure I was told and therefore even if he wasn’t spasming at the time of the EEG it would still be picked up. Have you got the movements recorded? I made sure to try and get evidence to show professionals and this really helped. My son is starting to catch up to his peers now which is amazing but I feel like there will always be a part of me that will worry ant watch out. But you’re mummy there’s no harm in chasing things up if you aren’t happy.

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