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recurring acquired head tilt to right & left ptosis
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recurring acquired head tilt to right & left ptosis

What is the cause? My daughter is currently 9m. Since xmas last year she has had problems. Currently she has a head tilt to the right which has ranged from slight to moderate over the last 2 months. When head tilt is only slight, she has a slight left eye ptosis. When head tilt is moderate, ptosis is not noticeable. It all started on Christmas day 09 with temp for 3 days, 2 seizures, followed by 'drunken' state with poor coordination and balance which improved overtime, left ptosis immediate & remained, whilst head tilt started 14 days later. Remaining symptoms are head tilt & left ptosis. Opthamologist said OK. 2 xMRIs  indicated 'lesions/cysts' in cerebellum which imaged similar to CSF. Cysts in 2nd MRI imaged smaller than 1st MRI. 3rd MRI due at end of April which will include spine. All blood work to date was negative. Neurologist unsure of cause of problems. Currently facing a return of the head tilt, loss of balance, irritable child, NO answers, and long waiting lists to see specialists. I will take her to an ENT doc in April to ensure head tilt is not caused by infection...then wait for 3 MRI. Any comments.        
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1083596_tn?1313398276
Dear Friend,
Any progress in the present scenario?
9 Comments
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1083596_tn?1313398276
Dear Friend,
Well if there is a cyst noticed in the first MRI and now in the second MRI it's smaller in size, then we are in less of stress.
We will have to wait for the 3rd MRI to know what's the present situation.
However still i would like you to meet a pediatric orthopaedician to rule out "Torticollis", which is causing head tilt to one side. Since i have not examined your child, i will not be able to give a pin-point diagnosis, hence am requesting you for an orthopaedician's opinion.
At the same time, i want you to relax, as the second report was better than the first.
Feel free to discuss further, for any doubt clarifications
Regards..
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Avatar_f_tn
Thank you for your reply. Having a sick child with no answers is quite scary, so I appreciate you taking the time to respond.
Just recently I received a copy of one of the hospital discharge reports. Regarding 2nd MRI it notes 'Ill-defined areas of linear T2 hyperintensities are seen in left cerebellar hemisphere. Previously round lesions are now not visualised. No diffusion restriction is noted. Subtle ehancement is seen in these lesions. A 3mm choroid plexus cyst is seen in the right lateral ventricle posterior aspect.'
That was the first time I heard about a choroid plexus cyst. I presume this CPC is nothing to worry about. I presume this is why it was not revealled to me at the time.
I will look into an orthopaedician's opinion re torticollis.
Regards
Xmas09
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Avatar_f_tn
Her head tilt improved dramatically with in a 24hr period on 18-19/3/10.

My child is 9 months old. Since the 19/3/10 she has been very tired and sleepy. For Slept 18hrs 25 mins /24 hrs period:

Sleep    7.50 pm 19/3/10 till 8.00 am 20/3/10 (12 hrs 10 min)
Awake   8am - 10 am (2 hrs)
Sleep    10am - 1.15 pm (3hrs 15 min)
Awake   1.15 pm - 2.15 pm (1 hr)
Sleep     2.15 pm - 5.15 pm (3 hrs)
Awake   5.15 pm - 8.50 pm (2 hrs 35 min)
Sleep     7.50 pm 20/3/10 till 8.10 am 21/3/10 (12 hrs 20 min)
Awake   8.10am - 10.10 am (2 hrs)
Sleep    10.10 - Currenlty sleeping

When awake she eats, drinks & plays. Gets irritable before going back to bed. Rubs her eyes and her head & ears. Maybe her balance is 90% i.e. not quite 100%; but thats it. Any comments welcome.
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Avatar_f_tn
From 8 pm on the 20/3/10 till 8 pm on 21/3/10 she slept approx 18 hrs out of the 24hr period.
In the last 24 hrs period she slept about 17 hrs which included the time in which i went to the doctor today.
I spoke to the health line today and over the weekend. They suggested i should go to town for check up. They felt she was sleeping excessively. GP at hospital looked in ears, eyes & mouth, took temp, he was not concerned greatly about the sleeping, said she is fine. I hope he is right. As a parent i have down what i can. I have left a message with paediatric neurologist; hopefully she has the same conclusion as the GP & i have nothing to worry about.
  
  
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Avatar_f_tn
My baby slept well last night but more irritable today & did not sleep as much during the day. Her head is slightly more tilted today. She is still scratching at the sides of her head and her ears. She had her first tooth pop out finally too.

Spoke to paediatric neurologist tonight. Like me, she felt that the changes in her symptoms means there is something going on i.e. head tilt & irritable, no head tilt & excessive sleeping, tilt back & more irritable again. I told her that she had not vomited in the morning since last Friday when the head tilt went away. She advised to give pain relief to see if it settles her irritablity. She felt that if there was any other presenting symptom, we should bring her to the city & try and get the MRI scan done quicker. In the meantime what for the peadiatrian to examine her next week.
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Avatar_f_tn
It is frustrating to live so remote from good medical care.  You are doing the best you can under the circumstances.  Take this detailed record with you when you see the paediatrician; it should help him recognise that your concerns are valid.
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Avatar_f_tn
On 3/4/10 her head tilt to right came back quite noticeably, she was also irritable. 4 days later and her head is still tilting to the right.

I was able to see a paediatrician last week. They thought it could benign paroxysmal torticollos (BPT), although some of the symptoms do not fit, while other symptoms do. Basically everyone is saying 'let's what and see what the MRI says at end of month'.

I was interested in the relationship between BPT and benign paroxysmal vertigo (BPV). My daughters cousin had BPV diagnosed, which he subsequently grew out of by about 3 years of age.

At the moment I am thinking that maybe my daughter had an infection/auto immune issue at xmas 09 that affected her cerebellum. This has subsequently distrupted the vestibular system and results in the intermittent torticollis. Possible she is genetically more inclined to this sort of thing.

As you said, i need to see the orthopaedician to see if it is true 'torticollis' or she is just tilting her head. (That will not be an easy task, might try and see one when we are getting MRI). We will be seeing a ENT doctor next week; she still scratches at her ears alot and i am not convinced her ears are happy. The doctors seem to think she is fine although they can not put all the pieces together under one diagnosis. I am concerned, I do not believe she is 'fine'. I guess we will all have to wait and see.        
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Avatar_f_tn
Seen the ENT specialist the other week. No abnormality detected.
Next Wednesday is the 3rd Brain MRI and 1st Spinal MRI.
The head tilt she got in early april went away after about 1 week.
Sligth head tilt to right began again yesterday, 24/4/10. Clear snot from nose indicates possible mild viral infection. Inflammatory torticollis? She is active and a little irritable despite slight head tilt.
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A related discussion, Undiagnosed was started.
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