Epilepsy and tribunal!

​I am going through simlair circumstances, as yourself.  Bit weird also PIP refused me disability benefits.  I then appealed, they declined me again, considering my illness has been extremley serious, also there explanation to why I should not receive PIP, was completely inaccurate.  I contacted the CAB, they are currently now representing me, I  have to go to tribunal now, which is stressful in it's self with my kind of eplipsey.  Have not received a date yet, but any information you can help me with regarding tribunal?  As being there could cause something to happen, due to the stress.  Are they just refusing everyone whom may have epilepsy, also anyone whom understands this illness, relates to stress, tiredness, low sugar levels so everyone whom has eplipsey, there illness now is worse.  As they have to attend the tribunal??????? Any update would be great regarding the tribunal, may relax me a little?

pan  have you heard anything else back 

I am pretty much in the same situation with my daughter. She has POTS Syndrome and EDS 3 - basically she faints and then has seizures randomly. They are not epileptic but the impact on daily life is similar - she needs constant supervision, needs to be communicated to when in the loo, can't cook etc etc.

She has on average 3 attacks a week but can happen anytime, any place without warning.

Please let us know how the tribunal goes as i'm sure I might need to go through the same route as you  

What level did you get ?

I can really simpathise with Kerry also - its difficult to be constantly supervising someone with these sorts of conditions.

I sent the PIP2 form back 2 weeks ago (not heard anything back yet only to say they received it) but I alsi sent Neurologist / consultants letters etc - but I also followed it up with a letter I wrote that explains how her condition affects normal activities.

The letter is below - I know the condition is different from Epilepsy but does the impact on her life sound familiar with you guys ?.

Dear Sir / Madam,                                                                                                          

                                I am writing to you to describe some of the issues < daughters="" name=""> encounters on a day to day basis as a result of her POTS and Joint Hyper Mobility Syndrome, (some people refer to it as Ehlers Danlos Syndrome type 3, which is another name for Joint Hyper Mobility Syndrome).

< daughters="" name=""> is a 17 year old young lady who first experienced POTS and Joint issues in the summer of 2012 when she was 13. Since then < daughters="" name="">’s conditions have gradually become more aggressive to a point where normal activities are not possible without help or supervision.

Her two syndromes have different impacts on her normal day –

Firstly her POTS (Postural Orthostatic Tachycardia Syndrome)

POTS is the most disabling of her conditions as this has most impact on her being able to perform normal day to day activities. < daughters="" name=""> faints on average about three times per week. She completely collapses and can be unconscious from anywhere between 1 minute, and going in and out of consciousness to 30 minutes, or sometimes even longer. There is no pattern to her fainting and this can occur at any time at any location.

< daughters="" name=""> has fainted crossing the road, at school, in shops, and even in the bath. In fact < daughters="" name=""> can faint at any time and in any situation. Her faints are always accompanied by a seizure which leaves < daughters="" name=""> very tied and requiring a lot of rest. She typically requires 2-3 hours sleep after each faint / seizure episode.

As a result of her fainting she is at a very high risk of concussion if she bangs her head when she collapses. As her parents, we have become aware of signs of concussion and we need to monitor < daughters="" name=""> closely post episode.

< daughters="" name=""> has been to hospital about three times this year alone with concussion.

She is unable to go anywhere by herself, for example she needs to be supervised at all times with special focus for the times she needs privacy such as taking a shower or going to the toilet. In these cases either my wife or I (or even her sisters), communicate with her regularly to ensure she is still conscious. She cannot cook a meal for herself. She can make a sandwich if she is accompanied in the kitchen but cannot use the gas cooker or oven as the heat can trigger her to faint.

Secondly her Joint Hyper Mobility Syndrome.

< daughters="" name=""> suffers from severe joint and head pain that can vary from intensity day to day. Some days she is fine and does not have any pain, other days she is totally incapacitated and spends the majority of the day in bed or resting.

The frequency of her pain is increasing – ‘good days’ are around 7 days per month (this is where she has no pain and can move freely), ‘painful days’ are around 15 days per month (this is where she has pain but can still move very slowly but for a very short period of time), and ‘severe days’ are around 8 days per month, (this is where < daughters="" name=""> cannot move freely and needs to spend the full day resting or sleeping).

As mentioned, the regularity of painful / severe days is increasing and this is impacting her ability to perform normal every day activities. Evidence of this can be seen by her school attendance.

< daughters="" name=""> is in her first year of 6th form, but her attendance has now dropped to 24%, this compares to over 60% last year.

Both conditions have disabling elements, but with the two conditions together < daughters="" name=""> requires a lot of support from family, friends and her School.

We have worked with her school, (who have been very supportive), to help manage her conditions and I would encourage you to contact the school to understand the issues she has and how it impacts her.

Some of the management actions the school implemented are:

< daughters="" name=""> must not be alone at any time whilst at school – this includes being supervised when going to the toilet

< daughters="" name=""> cannot use stairs. < daughters="" name=""> has fainted several times when using the stairs which has resulted in ambulance taking her to hospital with suspected concussion

< daughters="" name=""> must use the lift. Although this is preferred to using stairs – using a lift can heighten the risk of fainting due to gravity forcing blood pooling to her lower limbs

< daughters="" name=""> has a school start time of 10:50 instead of 08:00. This is so she can slowly mobilise herself and have any pain medication

Luckily we live very close to the school and if < daughters="" name=""> faints or becomes unwell at school either myself or her mother can go to the school and bring her back home with a wheelchair that we have bought for such occasions.

< daughters="" name=""> is an outpatient and has been a while. We have tried several medications to help with her POTS – such as Midodrine, fludrocortisone, ivabradine, but these medications did not work – and some made her worse, so the only medication she is currently having to help with her fainting is sodium tablets.

As part of pain management for her joints she has been prescribed Naproxen, which she takes when required.

To summarize, < daughters="" name=""> needs a lot of support from family and friends to perform everyday task, although a long term management plan needs to be defined.

< daughters="" name=""> will be unable to drive, will not be able to hold normal employment, requires constant supervision until her condition improves – which it may, or may not improve.

She is unlikely to be able to progress to the 2nd year of her 6th form as her conditions have impacted studies to such a level she will not be able to pass the first year.

As mentioned, < daughters="" name="">’s school have fully experienced the impact of her conditions on a day to day basis, specifically the SSM desk. The SSM desk is the Student Support team who deal with her when she becomes unwell. Please contact the school if needed

Emis Moderator comment: I have removed a couple of other details that could possibly identify the person (school name and consultant/hospital name). Users can use the Private Message service to exchange these sorts of details if preferable to posting in the open forums.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

happy to to hear you won Natalie 😀

 my son has his assessment this Tuesday and slightly worried his will be stopped , he also has uncontrolled seizures and now has a letter from a neuro hospital wanting to to a memory test on him and  other test as just before he has a seizure he tends to turn and turn around and look up and we also notice his right side of the face has dropped and then his lips turn blue then we catch him before he drops to the floor. So he his having to see a professor to see why .my son has a Sen teacher in his classes to help him but he often refuses as he gets teased by other students and also gets teased for the scar on his scalp which gets him stressed and likely to bring on a seizure   Will the the assessment peeps accept letters from these medical doctors my son is under or they just see how he is while in the assessment  plus totally worried as I have left work to apparently being childish and immature by my area manager  for worrying over my child because of the hot weather which also can bring on a seizure