Amanda Isabella's Abnormal Movement Disorder 5

My 2.5 year old started having very mild and infrequent abnormal movements at about 8 months of age. Since about Sept 2009, they have progressed rapidly. She is now having clusters of episodes several times a day. They can last anywhere between 5 sec to 5 min.

She usually does not do this when she is standing/walking, only when sitting/lying down/at rest. Only twice have I noticed her doing this while standing, and that was only just recently. She also usually doesn't talk through her episodes, but again, she just recently did this as well. As far as walking is concerned I do not see any funny gaits. She is pigeon-toed, and flat-footed and will more often than not, walk on her tiptoes.

She doesn't have these episodes when hyper, excited or stressed. Though I do wonder if the episodes arent triggered by her hyperactivity. She doesn't do it if "startled". Lately she has also been crying a lot in her sleep and talking too. I do not sleep in the same room with her, so it is hard to say if she is doing this in her sleep. When she falls asleep she does twitch a lot, but I just dont know to what extent she is doing this during the night, and if that is contributing to her waking up and crying.

She isn't overly sociable with strangers; she usually just clams up and doesn't say a single word or makes a single sound (selective muteness). She rarely speaks when around her therapists as well, and she has been seeing most of them for over 2 years now.

Speech, even though slightly delayed at first, is pretty good; says many words, uses 2-3 word sentences.

She has had a 4 hr and a 48 hr EEG, which show no seizure disorder. All blood tests and urine tests appear normal. She has had 2 clean MRI's. Yet, she continues to have these episodes and they are progressing. She has also had an abdominal ultrasound to rule out neuroblastoma. And a strep antibodies test to rule out PANDAS. Everything is negative thus far. She is scheduled for a genetic test on 3/29/10.

She is being followed by:

Shriner's Hospital for Cerebral Palsy, Tibial torsion, Pigeon-toe, Clonus, etc.
Endocrinologist for Premature Thelarche / Precocious Puberty.
Gastroenterologist for GI / constipation issues; they say she has a slow digestive system, and they have had her on Miralax for about a year. I took her off of it in Feb 2010, just in case the Miralax could be contributing to her episodes. She is now on Ranitidine for Reflux.
ENT - Her first year, she used to get frequent ear infections and was on antibiotics a LOT. During this time, I rarely saw her disorder. But then she had tubes put in her ears 7/22/09. She stopped being on so many antibiotics then about Sept 2009 these episodes started progressing. I dont know if that has ANYTHING to do with it or not.
Allergist for her eczema/rashes.
Pediatric Neurologist for this movement disorder.
Nutritionist for Failure to Thrive.
Physical Therapy, Speech Therapy, and Occupational Therapy for all delays. (Her speech therapist is currently working on her oral aversion / texture feeding issues, as well as her immature suck and getting her to talk more.)

She was a 28 week old / 2.8 oz preemie and had pretty much all the delays that come from being premature. She did need to be resuscitated at birth (10/07). She did not get a blood transfusion while in the NICU. She was on a ventilator when she was first born. And she also had an IVH1 bleed on the right side of her brain. She did not leave the NICU until 12/07. She was on breast milk fortified by Neosure, then just on Neosure, and is currently on Pediasure.

I have uploaded several videos on youtube because it is so hard to get all her movements in just one of her episodes.

She does have staring spells while doing this. I used to be able to talk her out of it, but sometimes that does not work. She will look right through me and won't answer when I speak to her. Sometimes touching her helps, but again, other times she doesnt respond to that either.

I can see her episodes coming on because she will have this wide-eyed look in her eyes. I don't know if she is in pain or not; or if she is getting a warning or premonitory sensation, as she is too young to describe what she is experiencing. If she is sitting on me, I can feel them coming on because sometimes it starts with her back slowly arching and twisting. Sometimes I can tell by her eye blinking or her tongue movements.

Speaking of which, she is doing a lot more weird things with her mouth. She does this tongue-in-cheek thing. It's almost like her mouth is always full of something and she is chewing away at it. Her tongue is usually hanging out of her mouth a little. She has been drooling an awful lot lately. I haven't caught that on video very well yet, but I'm working on it.

As I mentioned before, she has started doing a lot of blinking just before her episodes. FINALLY got it on video! Please see video #3!

Category:

People & Blogs

Tags:

• abnormal movement disorder
• Myoclonus
• Athetosis
• Chorea
• Athetoid
• Dyskinesia
• CP
• Cerebral Palsy
• Autism
• Tourette Syndrome
• premature thelarche
• miralax
• PNKD
• PKD
• PED
• PHD
• paroxysmal
• nonkinesigenic
• dyskinesia

[2282Jen]

It does look like a mild form of Dystonia. Is it getting worse?? I m in medical field and got interested in Amanda's involuntary movements. ...I hope she gets Better :)

[rballeto]

@2282Jen The movements themselves have not gotten worse. The frequency has. She pretty much does it all the time now. Or should I say, all the time that her mind is not otherwise "engaged". As long as she is up and moving, she is fine. If she sits or stands still for a second or two, we'll start seeing the hand gestures, the staring and the smiling.

[maria22284]

she is beautiful!

[rballeto]

@maria22284 Thank you very much. She is definitely the apple of my eye.

[rballeto]

Update 6/12/10: Spinal tap also came out normal. Waiting for genetic test results. Episodes continue to progress. Starting to do something just a little different, will have to try and catch it on video. Still no diagnosis.

[rballeto]

In her own little world again. You can see a little of the wide eye'd stare. A little head nod. And like nothing as soon as it is over.

[melissajane1895]

This is what my son does. At the moment they are treating him for Paroxysmal Dyskinesia as this is something i found on the net. They first thought it was Juvenile Myoclonic Epilepsy and the Stereotypies. He is on meds for it now but they don't seem to be helping much except sedating him at night so he doesn't wake as much.

[Kirstey6]

My daughter been having similar movements, on my video (near end of video - was filming her playing when caught minor spasm type thing she does) Wasnt until come across your video wondered if might be something like CP? Though she seems normal in her movements an activities, she cant speak yet and am having huge difficulties with toilet training er too. Doctors tomorrow...

[GreenGirl444]

I'm sure this has already been mentioned, but Tourette's maybe?

[se7enspeaker]

@2282Jen I agree with you, Jen, it does look a bit like dystonia.

[Ritterrit]

Have you had her tested for Huntington's Disease? (chorea?)

[GalacticSystemBuster]

As soon as she reaches an age and awareness of what is going on, she will begin to control it on her own, and tell you things that will open your mind to the truth about "reality" and what you and I and her and everyone else really is, and why your here in this particular time/space reality to begin with.

Buy her some nice crystals, like a lumerian seed crystal. Get some "orgonite" and let her play with it and keep it in the room where she sleeps. Its not dangerous or anything its just science.

[GalacticSystemBuster]

When we transition (die) we go back to our higher dimentional awareness, the 5th dimension or higher which is commenly known as "heaven" because compared to the 3rd dimension, it literally is. No sleep food pain suffering or any would be negative experiences possible because of such high frequency energy. Everything is energy, even our conciousness or "personal id of our own self".

Anyway, look more into "crystal children" and learn how these children are actually more advanced than we are.

[GalacticSystemBuster]

She is very multi-dimensional. Although everyone is multi-dimensional, she seems to have a stronger connection to her other dimensional awareness.

You see, we all exist in multiple dimensions all of which we are aware seperatly in each own perspecitve of a lifetime in this dimension. You and I are fully aware right now of the 3rd dimensional reality. In our dream state our awareness is taken to another dimension while our cells rest and do their rejuvination cycle