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Since then I've seen parents describe this on this forum occasionally.
I think you're doing the right thing taking her to the doctor. But first, get good video of her doing this because its hard to picture with just a verbal description. Video is a GREAT thing to have at the docs office!
Best wishes.
Much appreciated
Malcolm
I took a video on my camera thee days ago, 1 minute and a half long, with 19 spasms, and he was doing it again so I called his pediatrician yesterday. She had me bring him in, she rotated his shoulders, had him hold something in both hands to see if he could hold things normally, she even felt around his stomach, and then she told me to take him to the hospital today and have an X-ray done to check his joints... ? Which confuses me. I asked if she had ever seen something like this before and she said no, she didn't even know what diagnosis to write on the scrip to take to the hospital.
We decided to wait a day or two and see if he keeps doing this... He's such a healthy baby, there were no complications with my pregnancy or birth, and he hasn't even had a cold. Right now we are going to wait and see.
My daughter is 9 1/2 months now and just started this shoulder twitching a few days ago as well. It is worrying us a lot. It initially was just a couple of times a day, now it seems to be happening quite often..maybe because we are watching her closely now. The twitches does not seem to bother her and it last just a few seconds then stops. Sometimes her shoulder will go up to her cheek, sometimes is just a tiny twitch. Mostly happens on her right shoulder. Going to take her to see a Paed this week.
Has anyone got any results back from their visit?
My sons seizures are less severe than Maddies but very similar. Maddie is a cutie! All the best.
She would lock her arm in an outstretched position and do an alarmed expression during these 'spasms', which lasted for a good few seconds.
Sometimes she would do it repeatedly, many times over a few minutes.
As first time parents we'd never seen anything like this and were fearing something serious.
But after videoing her/seeing a specialist and having an EEG etc it was suggested that this was a voluntary action rather than an involuntary spasm. Basically our daughter exploring her body, stretching her arm out as far as it would go to feel whatever sensation it was giving her.
A good sign that it was voluntary rather than involuntary was that we could distract her from it - calling her name loudly mid-'spasm' would mostly stop her doing it immediately.
And in the end she stopped doing it herself - she's now over 16 months and hasn't done it at all since she turned one.
It was 'just a phase of experimentation' and of course we're super thankful for that, cos it was very scary for a while.
Anyway, just thought we'd add what happened to us, cos this forum was one of the only places where we found people who'd experienced similar things to us at a very stressful time.
What I learned from this experience:
If your baby has these symptoms I would urge you call your doctor and to get your baby to an ER at a Children's Hospital right away as these can be symptoms of a much more serious condition. In some cases delay in treatment can lead to brain damage. Have someone else drive you there so you can watch your baby and be prepared to have the driver pull over if your baby goes into a seizure so you can get your baby out of the car seat and put them on their side in case they vomit and so the driver can call 911. (A friend of mine that has a baby with frequent seizures just has her older daughter flip the car seat upside down, I don't know if the doctors would be okay with this or not.)
Try to get a video of your baby's symptoms because if your baby in like mine they will only have spasms when the doctor is out of the room.
Ask about having an EEG and seeing a neurologist. I'm glad we did because now we can put all our fears to rest.
Follow up with your pediatrician. I felt a little silly keeping our follow up appointment with the pediatrician today since we now know for sure that our baby is okay but I figured that it was good to keep him in the loop. While I was there I mentioned that when they did our baby's blood work at the ER they found that our baby's iron level was a little low. The pediatrician ordered another blood test and found that he is anemic and prescribed an iron supplement.
Try to get everyone you can praying for your baby. I am so grateful for the many people that were praying for us. When people started praying his symptoms started going away and we were more at peace.
And of course always remember that the internet can be helpful but it should never replace the advice of your doctor.