5 Month old twitching - Sandifer? Seizures?

Kristina052707

I am posting here in hopes that some of you wonderful ladies could chime in and offer advice and/or share your stories. 

 DD2 is 5 months.  She was born via C section due to my severe heart issues at the time, severe polyhydramnios, and high presentation.  She ended up needing vacuu assistance due to being so high in my ribs because of the poly.  She weighed 6 lbs 11 oz's at birth and currently weighs 12 lbs 14 oz's.  She had swelling and bruising until about 6-8 weeks.  If it matters at all she has a hemangioma on her right forehead.  She had a few setbacks in the first few months due to RSV/GERD/ and just viral infections.  Currently, she is just taking Zantac for her GERD although it isn't controlling her symptoms very well.

With the last 2 weeks she has been twitching her right leg during sleep.  When the twitching occurs it last from 3-8 seconds and if I hold her leg the twitching will NOT stop. 

When I took her the pediatrician he did a reflux test, checked other neuro signs and said all looked well on physical examination.  She also has met all developmental milestones to date.  The other issue she currently has is she still flares her arms quite a bit.

  He said he was going to place her on an Apnea monitor due to her reflux and the fact that she does had prolonged breathing at times due to refluxing at night.  He also is sending her to a Pediatric Neurologist for a consultation.  

The pediatrician does not believe it is a full seizure as it only occurs while she is sleeping.  He did mention Sandifer's syndrome which I haven't been able to find too much info on.

Right now I'm getting minimal sleep even with the apnea monitor as I scared to death she will have a seizure while I am sleeping,  I am worried it is something bad... I am just a worried sleep deprived mom I guess. Just looking for information from other moms of what they experienced, what I should expect at her Neuro visit, anything I should suggest/talk to the Neurologist about, etc.   

lazysusan

my DS has a history of seizures, and I can relate to some of what you're going through.  Sorry DD had such a rough start.  After DS's 1st seizure I had a really hard time not over analyzing him.  I was afraid to leave him at night.  After awhile the necessity for sleep takes over.  Your DD needs a rested mom.  You are following up in every way you can.  It sounds like what is happening is relatively short thankfully.  As for her arm control, has she gained more purposeful movement overtime?  Do her muscles tend to be overly stiff, floppy, or uncontrolled?

For the neuro visit just mention all the things you've told us here.  Keep track of how often the tremors are happening and if they are increasing in duration or frequency.  If you could video tape it happening that would help the neuro out.  Depending on what they find they may follow up with blood work, and eeg (looking at the electrical activity in the brain), or a CAT scan.  They will look at the quality of your DD's movement and how she's developing along with muscle tone.  I hope this helps... 

mollybloom

DD had Sandifers. Sandifers is usually seen in babies that have a severe form of GERD. It usually presents as a baby arching his/ her back and holding it rigidly. It can involve a tightening of the leg muscles, although this is rare. It is thought to be a response to the pain of severe GERD.

Her Pedi GI told us that the Sandifers usually disappears when the GERD abates. Once DD's esophogeal ulcers healed and her GERD improved, her Sandifers went away.

I know nothing about seizures, sorry.

smerka

I'm not sure I'm actually qualified to answer this, but here goes.  My younger son did something similar around that age.  It was usually when he was falling asleep and was in his arms and legs, lasted about five to eight seconds, and it didn't stop if you grabbed the limb.  The ped would have liked to have seen a video, but in the end they decided it was not anything to worry about and that babies sometimes do that because their neurological systems are developing.  He grew out of it after a month or two.  I hope that's what's going on with your LO.

pandabear12178

My daughter was diagnosed with Schizencephaly but she also was recently diagnosed with Sandifer's Syndrome because she would arch her back and scream in pain and refuse to eat. Her zantac helped along with thickening her formula. I am not sure what reflux has to do with your LO twitching their leg.

 Because of her DX she is very high risk for seizures as well. That doesnt sound like a seizure to me really but if its hard to say in their sleep since you can usually tell with the eyes rolling back.

I would recommend a 24 hour EEG definitely that way they can see the activity in her sleep.  You could also talk to your neuro about writing a medical necessity to your insurance for a seizure monitor to put in the crib if it would help ease your mind