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Additional Support Needs & DAS Help & advice |
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12 Oct 16, 06:51 PM |
#1
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slightly serious Dibber
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Flying if you have a shunt fitted
Hi all I posted last week about cancelling our holiday as my DD was taken in to hospital with suspected meningitis.She has been through a terrible time had to have 2 lumber punctures lost most of her sight which thankfully is starting to come back slowly and last Friday was fitted with a shunt as they couldn't stop the intracranial pressure from rising.She is slowly on the mend.I am so proud of our gorgeous girl she has had so much to deal with over her young life with Aspergers Syndrome Severe anxiety and OCD Rheumatoid Arthritis and a few other problems and now this.We have always encouraged her to live life to the full as much as she can that is.It is very early days yet and this is the last thing on your mind when speaking to the surgeons when we were told that she had to have this operation done.We are now thinking if she will be able to fly or go on rides.Does anyone on here have any experience of living with a shunt and weather you can or can not fly .Only positive advice please not ready for the in and out on what can go wrong yet We hope that we can still take her to Florida as this is the only holiday she will go on as she is not into beach holidays there needs to be lots going on as do a lot of autistic spectrum disorder children/adults do.Thanks in advance
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12 Oct 16, 08:45 PM |
#2
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Imagineer
Join Date: Sep 08
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My goodness Sunny, what a tough time your daughter has had! As a parent of a child with ASD, I can only imagine the additional challenges this has presented her and you... and I am sure you (and her dad) have been invaluable for her in helping her cope.
Now, I totally get the only place for your holiday thing; we have similar issues! It may depend a little on the type of shunt she has (drains into the tummy or big blood vessels) and obviously how labile her ICP is long term, but I cannot see any reason why she couldn't fly... but at this stage it would be too early to know for sure, and it will really depend on your neurosurgeon's thoughts. I do know of children who have been on family holidays abroad who have a shunt, so it is possible. I am sure it is the kind of thing you want to look forward to and I know these are the things that help you through the times when you wonder if life can ever be 'as it was'... because I have done it myself! So, in short, it is possible, but only time and your Drs will know for sure if it is probable. However, I would keep positive... sounds like your daughter has a way to go, which gives you time to read up, find out what the options are and what you would need to put in place if she is able to fly... You are doing a great job being so positive about the future and daydreaming about holidays can be great therapy for us Disneyphiles! Long term hospitalisation is exhausting, scary, emotional and sometimes boring(!) so if it helps, then plan the celebration of your daughter returning to health enough to take a trip to WDW... You may also find some information on the hydrocephalus association website, hydroassoc.org. I realise she did not have primary hydrocephalus, but essentially this covers all reasons for too much cerebral fluid in the ventricles of the brain, so much of it may be relevant, when you are ready of course. I do hope she continues with forward steps to being well again, however small. Hugs to you x
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"I've learned that people forget what you said, people will forget what you did, but people will never forget how you made them feel" |
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13 Oct 16, 01:10 AM |
#3
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Thread Starter
slightly serious Dibber
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Thank you so much hunnybun for your sound advice.I can read in your post that you can understand what we are going through and to some thinking about taking my daughter to WDW would sound so shallow after all she has been through but it's the only place she will go on holiday and I don't want to take this away from her.Bless you for your kind words and understanding they mean a lot.
Sunny x
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13 Oct 16, 07:50 AM |
#4
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Imagineer
Join Date: Sep 08
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Of course you don't, it is no doubt something that you can all do together that allows connections and memories to be formed.
Only you are going through this time, and only you have the right to determine how you get yourself through this period... and if that is focusing on something frivolous for a few short moments, then it is not shallow, it is your method of coping with some pretty draining times... and it sounds as though you have had a fair few. Take care, Hunnybun x
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"I've learned that people forget what you said, people will forget what you did, but people will never forget how you made them feel" |
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13 Oct 16, 10:29 PM |
#5
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Serious Dibber
Join Date: Oct 10
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Sunny - the one thing that will keep you and your daughter looking forward is exactly this! Any parents who have lived through such desperate times will understand your need to make this dream come true for your precious daughter.
We will never stop planning for happy times - it's a way forward and will always live for today. Hoping for a speedy recovery and positive wishes to you both x |
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17 Oct 16, 09:49 AM |
#6
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Thread Starter
slightly serious Dibber
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Thank you both for your kind words.
Sunny xx
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17 Oct 16, 02:49 PM |
#7
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Imagineer
Join Date: Mar 02
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This thread has been automatically closed as it has not been posted on in 365 days.
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17 Oct 16, 02:49 PM |
#8
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New Poster (3)
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As a father of an 18 Year Old who has now had 18 Shunt revisions , we have flown in excess of 20 times including Orlando and only once have we had an issue when the security paddle at Lanzarote airport got a little too close to the Magnetic adjustable valve which dropped the flow pressure , soon rectified and reset the next day but all in all (touch wood)the flights have been fine , We're more concerned with our flight in March to Orlando with recently diagnosed Epilepsy , We have always been firm believers in 'the show must go on' enjoy life , Ask your Neurosurgeons nurses for a card which has shunt serial numbers etc and keep it with you.
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