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Children's health

Squint / Head Tilt - Brain Tumour?

21 replies

Bluebella · 15/07/2009 19:21

My little boy is 15 months old. At 12 months I noticed that occasionally one of his eyes rises up and looks up, while the other one looks ahead. Strangley this only occurs when he is sitting in his car seat... not sure if something to do with being tired or relaxed.

Around the same time the Health Visitor noticed a slight head tilt. I went to the doctors and they refered to Eye Hospital. I am going next Thurs (been waiting ages for appointment)

I have been trouling the internet for information on brain tumours, I am so worried that he has one as both a squint AND head tilt can be symptoms...

He also has a very big head,which can suggest an issue.

All I can think of is that he has a brain tumour and is going to die. I know that probably sounds dramatic, but my mind is racing.

I am really praying that the two things are related to perhaps his eye sight being not very good (Although he does appear to see well.

I'm not sure why I am posting - as no one will have the answers but I am just so scared.

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Mintyy · 15/07/2009 19:27

Sorry you are so worried and scared Bluebella. I know nothing about brain tumours or their symptoms but I would say that perhaps you would have noticed other things in your ds if there was something seriously wrong? Many many many children have squints which are perfectly harmless.

Am very sad for the worry you are going through. I am sure he will be fine . Thinking of you both for next Thursday.

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anonandlikeit · 15/07/2009 19:31

Hi BLuebella, it may be that he is tilting his head to compensate for a vision problem.

I know only the appointment will be able to put your mind a tease but just trying to say that there are other less scary causes.

I hope all goes well next thursday.

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chegirl · 15/07/2009 20:24

Sorry you are so worried.

I know there are certain types of squints that are more significant than others but surely if it was one of these your GP would have sent you straight to the hospital?

I say this because from personal experience the NHS does not mess about with childhood cancers.

If you are getting really worried why dont you take him to the optition (sp) asap? You should be able to get an eye test appointment pretty quickly.

Optitions are trained to look out for all kinds of problems including tumours.

I know its not the answer but it may help you feel a little less anxious.

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amazonianwoman · 15/07/2009 20:32

As chegirl said, get an optician's appointment before next Thursday, if only to put your mind at rest. They can detect eye tumours fairly easily just by shining lights in the eye.

DS developed a squint at 2 and I had the same worries - I even tried taking flash photos of him because a red eye (from the flash) will appear white/opaque if they have an eye tumour.

He "just" has a squint and is now wearing glasses which are really helping. The squint was worse when he was tired. He's going to start wearing a patch soon for a few hours a day. It's a "good" age to catch this and start treating it.

He also has a big head (but we all do in our family!)

Please try not to worry - easy to say I know - AND STAY AWAY FROM THE INTERNET, YOU'LL JUST STRESS YOURSELF OUT!!! xx

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Bluebella · 15/07/2009 20:32

Do you know what types of squints are more significant Chegirl?

Thank you for the replies x

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chegirl · 15/07/2009 20:47

No Bluebella I dont. TBH it wouldnt be very ethical of me to tell you if I did (and I really dont know honest) because it would be so easy for you scare yourself demented and convince yourself that he had whatever I decribed.

I hope that doesnt seem patronising, sorry if it does.

I know that terror you are feeling and I know how hard it is to dismiss your fears. I think seeing an optician WILL help you though so why not ring round and see if you can get one? Its ok to explain why you are so worried.

I can become very anxious, very suddenly about my DC's health. I know that I am often beign illogical but when I explain that I lost a child I find that health care professionals are very understanding and accomodating. I just tell them straight 'I know I might sound neurotic but my DD died and I get very scared, please see my DS asap/dont keep me waiting for test results etc'

You can explain to optician that you have become really anxious about your DS, it is making you sick with worry and would really appriciate an early appointment to set your mind at rest.

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mummytopebs · 15/07/2009 21:59

I was googling about brain tumours in october as my dd had various symptoms and it is very scary. If the gp was concerned they dont mess about, my dd was under general anasthetis having an emergency mri within 24 hours of the gps appointment, and the scan was clear. She is still having problems which they are unsure what is causing them but it is not a tumour. If the consultant has any concerns on thursday it will be dealt with immediatly. Try not to worry, easier said than done as i am papping myself cos my dd goes back to eye consultant on wednesday to check on her right eye which she is losing sight in

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Bluebella · 16/07/2009 08:44

Thanks for your messages x

If you don't mind me asking, mummytopebs, but when you went for that initial appt, what were your little ones symptoms that prompted the emergency scan?

I had the GP appointment about 6 weeks ago. They then referred me to the eye hospital. That is the appointment on Thurs. My Health Visitor is coming this morning so I am going to stress my concerns to her.

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chegirl · 16/07/2009 21:33

How did it go with the HV Bluebella?

Hope she could put your mind at rest and offer you some advice

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mummytopebs · 16/07/2009 22:07

Bluebella my dd was having flashing sensations in her eyes (still does but not as bad), she had them about 10 times a day and would just collapse to the ground shouting flashing flashing,she says its black, white and red flashes. She was also having headaches, was very tired and clumsy.

They found some scarring on her brain which was prob caused at birth because she was emer section due to fetal distress. The flashing sensations still have not been diagnosed but some rare focal irregularties were found on an eeg and she is being investigated for autism and the flashing might be a sensory issue.

She has also had a squint/lazy eye since birth and is losing sight in her right eye, but has been given the all clear for brain tumours.

I know how concerned you will be i was exactly the same and waiting 3 hours for he mri results was the worst of my life. I still worry now as nothing has been found x Hope your appointment goes well and keep in touch, dd goes back to eye consultant on wednesday

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ShirleyL · 16/07/2009 22:30

I really don't want to scare you but I felt I had to post.
Has your ds been sick, clumsy, seizures or anything like this? I only ask because my dd was diagnosed with a brain tumor 2 months ago and these were her symptoms. She was sick for about a month before being diagnosed and then took 2 seizures. After the second seizure she had an MRI and they found a tumor. She was being clumsy due to her losing the sight in one of her eyes. We had no idea at all.

I know how worried you must be at the minute but please let us know how you get on x

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Bluebella · 20/07/2009 19:41

Oh Shirley I am so sorry to hear that.... can your little girl be operated on? I feel so sad about it, why are there these horrible illnesses. Its not fair. Olly hasn't had any sickness, but he's does fall over and have accidents quite a lot.

HV took me seriously and said to get advice from doctor. I got an emergency doctors appointment later that day and the doctor said she did not think it was a brain tumour, she thinks all of the symptoms are unrelated. She thinks i'm putting 2 and 2 together and getting 5.

I'm not so sure...I know it's unlikely, but i know it's also a possibility.

Will update on Thurs after the appointment at the eye hospital xxx

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mummytopebs · 20/07/2009 20:40

Good luck on thursday Bluebella we are there on Wednesday to see if dd sight has detriorated anymore

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ScarletBear · 21/07/2009 11:05

Bumping this with my support!
Let us know how it goes. . .

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Bluebella · 25/07/2009 12:45

Hi all,

Following the appointment with the consultatnt at the eye hospital. Oliver has been diagnosed with 4th Nerve Cranial Palsy. A fairly rare condition, that the consultant says that he only see's around 8-10 children a year with.

The head tilt that he has, is to compensate for diploplia (sp?) which is vertical double vision. By tilting his head he is aligning his eyes better, and therefore improving his vision.

The 4th cranial nerve is the nerve that makes the eye move downwards from what I understand, and it has some how been damaged, so when Olly is reclined (i.e. in his car seat) his 'squint' appears very noticbly. Because he is trying to gaze down wards, but his eye cant do it as the muscle/nerve won't work.

It can be in the family (which is not in mine or his dads) or it can come from having a traumar to the head/ head injury. I am freaking because the amount of times this little boy has banged his head is unbleiveble, and I wonder if this is all my fault... However the consultant said that it is usually as a result of a severe trauma where the patient has become unconsious. This, to my knowdlege has not happened, his father insists he has not had such an accident in his care.. I am worried he is not telling the truth.

Looking back at old pics hoever I can see that in all picks Ollys head IS tilted to the right. Oh dear... the amount of time I have spent looking this up and googling so much...

Anyway, I told the consultant how worried I was about a brain tumour. He said it was unlikely as I had noticed the symptoms for 3 months now, and his health has not deteriated in any way. But to help to reasure me he dilated Ollys eyes with drops and looked at the back of them with a light. He said they looked fine with no signs of pressure. He said I shouldn't worry and he will be fine - but guess what - I am still worried and cannot stop reading about this fairly rare condition and contemplating that it may be a early sign of something more serious.... like aneurysms/tumour/MS. etc...

The consultant said that he will want to see Olly again in three months. He said that surgery would be likely but they like to see how it goes for a while first.

I just feel awful. I mean, of course I am glad that it is not necessarily a brain tumour but I still am worried about it. What a horrible feeling that your lovely son is not perfect. I am scared that something else is wrong. Am i being over paranoid?

xxxx

P.S Mummytopebs good luck for Wednesday, and post back here how it went xxx

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anniebear · 26/07/2009 21:14

I am pleased that it was not a brain tumour, but obviously you dont want your child to have any illness

dont blame yourself, it wasnt your fault xx

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gaschick · 17/02/2013 18:21

My Two year old daughter has just been diagnosed with a right superior oblique palsy (4th CN palsy). I am very worried about her. The squint seemed to happen quite suddenly.

We are trying glasses to see whether this gives some extra strength to her eye.
What results did you have from treatment? I realise that your posting was 3 years ago!

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sausagesandwich34 · 17/02/2013 18:37

Hi gaschick

I know this is an old thread so you are unlikely to get a reply from the original posters but I just wanted to say that both my sister and I have this

no one else in the family at all are affected

I only found out recently -it's always been in my notes, obviously I was aware I have a squint but didn't know the name for it

I have had a number of operations to cosmetically correct my squint

i don't have 3D vision as my brain pretty much ignores the vision in one eye so I don't get double vision -I have good sight in both eyes, they just don't work well together

it has had no impact on my life what so ever other than not being able to get the 3D effects in films but that's no great loss
I drive and everything :)

I know it feels like a total whirlwind of appointments etc but I'm now late 30s and my sister is 40 and it has caused no issues that we can't completely manage

the only thing I would say is when she starts to learn to read, words can jump up and down on the page making it easy to lose your place -this is something that you learn to compensate for but when learning it's helpfull to cover up the lines above and below the one you are trying to read

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gaschick · 17/02/2013 21:36

Thanks so much for the reply. I have also posted on the 'squint' posting set up by Cheekyginger. The vision in both of her eyes is ok - but she is slightly long sighted (+1.5). The Opthalmic squint surgeon has prescribed glasses with +1.5 right eye (squinting eye) and +1 in left. I think that this is in the vein hope that this might make some sort of difference.

interestingly, her elder sister had what I can only describe as a 'wandering' eye. We went to see the Optometrist when we lived in Leeds, but she didn't really get on well with the test. He eye now seems to be completely resolved and she doesn't squint. I had what my mother described as a 'lazy' eye when I was a toddler, and I don't have a squint.

Sadly, DD looks like she will be heading towards an op. I am just worried that this could be as a result of something more sinister ( I am a mother after all!) as such problems are supposed to be so rare

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sausagesandwich34 · 17/02/2013 21:47

the team at Leeds are fantastic -did you get screened at the hospital or one of the community clinics?

both my DDs were under their care for 3 years, absolutely nothing wrong but due to the genetic link they were both screened avery 6 months between the ages of 2&5

the op is a much bigger deal for the parents than the children

I've had a total of 6 ops as following the op the squint was shown to be bilateral and as I grew required a number of corrections

when I was little is was an overnight stay but the policy has changed now and it's done as day surgery with a follow up visit the next day

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gaschick · 18/02/2013 11:44

We now live in Wiltshire, my eldest daughter was seen at St James's. I am an anaesthetist, so know the score when it comes to squint ops. I think I might speak to the surgeon again to lay my mind at rest. Thanks for your support.

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