Amanda Isabella's Abnormal Movement Disorder 6

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

[mrdozerdog1]

Hi, my son is almost 2 1/2 and he has the same symptoms as your daughter. He only has these movements when he is sitting and laying down. Hes seen a neurologist only once and we go back in a couple of weeks. Have you found a diagnosis yet?

[rballeto]

@mrdozerdog1 I'm sorry to hear it. My daugter is now 3 and is still having daily episodes. And NO diagnosis yet. I think everyone has pretty much given up. She goes back to the genetist in a few months, but I'm not sure what he can do for her considering the blood tests all came back normal. :( It's hard to see her this way. I wish you all the best for the long road you have before you. Please keep in touch.

[aussiegirlonamission]

Hi, have you checked out cortical dysplasia? Your daughter is gorgeous and the symptoms are similar. Best wishes

[rballeto]

@aussiegirlonamission

Thank you for the suggestion. Her neuro transmitters were checked in her spinal tap and all the genetics test came back normal, so no congenital issues here. We are still looking. :(

Thanks again.

[aussiegirlonamission]

@rballeto wow then that has to be a good thing then. Maybe she will just grow out of them like so many other children. I always wonder if these problems come from vaccination. Best wishes with everything and please keep us informed of her progress. She is gorgeous :)

[rballeto]

@aussiegirlonamission

We'll see. Nothing else we can do right now but wait and see if she gets worse or develops a new symptom.

I am with you on the vaccines. My 6 year old started getting seizures right after his first vaccine at 24 hours old. After months of battling with doctors and tests, I just decided not to give him any more, or at least none until I felt his little body could handle it. After the first 6 months, and no more vaccines, no more seizures!

[rballeto]

@rballeto

Since Amanda started getting these episodes I have stopped her vaccines as well. I know they are needed, but I don't trust them either. Can't win.

Thanks for the compliment. She truly is my little princess. :)

[gitanamericana]

@rballeto Hi there, I put a comment on one of your other videos, do try the bentonite clay baths, even ingesting it internally, may give you some relief

[sherristonenyc]

I think I might have read in your comments somewhere that you mentioned that you had her tested for strep to rule out PANDAS. My daughter was tested for strep several times, negative. I still had her tested for PANDAS. She was positive. It seems that is was not strep that brought on the unusual movements but a mycoplasma that had caused pneumonia earlier. Just like your daughter all her painful and time consuming tests came back negative. Google Dr. Cunningham at U of OK for more info.

[IsThisTourettes]

does she have a diagnosis?

maybe dopa responsive dystonia. it is very cureable. :)

[aussiegirlonamission]

@rballeto Yeah I worked in a daycare centre in Australia and there were soooooooooo many children with autism who their parents strongly agree were related to the vaccines. The vaccine has changed now and instead of one massive dose of the MMR they are given it in smaller doses at intervals. This has reduced the number of bad reactions. I cannot believe the amount of children under 5 on utube with the seizures etc which stop after a couple of months/years. This seems to me more so in America. ??