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Anyone caring for someone with epilepsy? - Page 3 - Carers UK Forum

Anyone caring for someone with epilepsy?

For issues related to specific conditions and disabilities.
96 posts
The trouble is that some professionals believe the hype that says that they are experts and start to think they know everything. With disastrous results, and no checks and balances. We have school inspections, social services inspections - who checks out the consultants?
Wonder if it would be an idea if each consultation was recorded? Calls to various call centres and to emergency services are automatically recorded and no-one questions that. This might make the various consultants/doctors/professionals think maybe twice about their demeanour and how they are treating a patient/carer.

Good Morning to you all my name is sandra i am new to the forum. I am a full time carer to my daghter she is 28 and has Lennox- Gausteaut Syndrome a chronic form of epilepsy. It is impossible to treat so she is on a coctail of meds. She is now having regular status seizures which has to be treated as an emergency situation. Just wondering if there are any other carers who have knowledge of LGS??? how do they cope? any tips? do they feel as isolated as i do because it's quite rare? some professionals do really not have a clue or understanding about it!! surprise surprise.....Not really all doom and gloom we take each day as it comes!
Probably waffled too much. So lets have a nice day!! BFN
Morning Sandra,

First of all welcome to the forum which I hope you find beneficial to you as time goes by.We are not a bad bunch really Image Image but there is one or two you need watch out for Image Image Image .

I had not heard of LGS and just googled it to read up on it.If not too much to ask, could you share a little about your experieces and those of your daughter.It will help us understand more of what you cope with.

Look forward to getting to know you both.

hi Rosemary thank-you for your reply.
My daughters condition started we think when she was about 1year old by the time she was 2 she had regressed and she was being treated for various seizures she does not have any brain damage visible on scans so they have said it is a metabolic disorder. Because she has many many seizures in a day she has not been able to learn so she has severe learning and physical disabilities. She has low muscle tone so has to wear calipers she has a lumber scoliosis, last year a feeding tube,P.E.G was fitted as she found it difficult to swallow fluids. A vagal nerve stimulator to help control seizures has been quite helpful, we get quite a bit of help from Kings Hospital London with a new epilepsy consultant there but it is a lot of travelling, we go by ambulance! She has hydrotherapy once a week at the local hospital when there are staff to assist and she absolutely loves it, rather likes to play than do exercises!!!! I care for her fulltime and she requires help with everything for all her daily living. The status seizures are the biggest nightmare and very worrying i have meds and oxygen i can give her at home or if it dosen't stop then its off to hospital, last resort i can tell you as i have to stay with her as they haven't a clue how to take care of her. My daughter can't speak but does make her feelings known though!
Last year i took her to Lourdes with Across it was wonderful and our first holiday for 12years
i hope to go back we shall see........
Off to get some dinner now for madam, best wishes Sandra
Hi Sandra,

Plain to see you have had your work cut out for you.Your daughter so lucky to have you as her mam.Typed words will no way convey everything you have been through as a family but you have my admiration and respect to have coped as long.
I have no idea if any other members will have experience of LGS Sandra but if they do I hope they post soon.However,you will find us a real mixed bunch on here and we can still offer you support if needed.Likewise I am sure you are going to be an asset to the forum and others will benefit from your experiences.

Did you go in the baths at Lourdes Sandra,was it possible for your daughter to go in?
When my mam went,she said the Holy waters were so warm yet other family members said they were freezing.I am really curious to know if you went in and how it was for you.

I remember when mam got home,she made my middle brother and myself kneel in the sitting room whilst she splashed us with Holy Water....omg....that sure has brought some memories pouring back.... Image I must have only been about 14 yrs old at the time.The things mams put us through.... Image Image .
Just a thought Sandra, as no idea how old you are or your religion ( which is of no importance,each to their own ) but did you ever have to learn and recite the Catechism... Image Image .

I hope you stay with us Sandra and that you enjoy your time on here.
x x x
Hello Sandra

Welcome to the forum!

I have a friend who's 8 year old condition is similiar to your daughters and feels the same about the amount of medication she has to give her to control her seizures. She has undergone 2 operations in the past 2 years to try and stop them or at least to a minimum before she gets older. She has severe learning difficulties due to the amount of seizures she has in a day plus the medication.

I know from my friend how hard it is coping with it so I too have so much admiration for you, glad to have you onboard!

Oh I care for my Mum who has a pegtube, so if you need any advice on them I got tonnes of it...I could even insert them with my eyes shut....Mums pulled them out that many times Image !

Take care
Maryann x
Hi Maryanne,

thank-you for your message, Pegs are quite tricky my daughter,s peg site is over granulating! they tried to put a mickey-button in which was far too big and upset it all so the nurse is coming out x2 a week might have to use silver nitrate?? any ideas? The other issue i have is that they never give you enough syringes... one would think they were paying for them!!

Best wishes to you, Sandra
Hi Rosemary

No we didn't go in the waters at Lourdes apparently the waters are cold but you are only in them for a few seconds!! too long for me we had a different service nearby with our priest who was super.We took part in annointing the sick which was very emotional but very special and a torch light procession of stations of the cross it was all very well organised there and people in a wheelchair took prioity,I would like to go again.

Yes we had a lot to learn to recite when i was younger I'm 51 this year!

Incidentally you have to look around the tacky shops in Lourdes there are statues of Our Lady for example that change colour with the heat we all had a good laugh about it!!

Hello Sandra

Yes at first they are hard to get use to and can be difficult to get the correct tube/button.

Granulation tissue can develop at the gastrostomy site and is a normal occurrence. Granulation tissue is the result of the foreign body (gastrostomy tube or button) which stimulates production of inflamed epithelial tissue. This tissue will be pink-red in color, moist, will bleed easily, and looks like the mucous membranes inside your mouth. Treatment of granulation tissue consists of chemically burning the tissue by topical application with Silver Nitrate sticks. The granulation tissue has no sensation. Therefore, the treatment is pain free. It may take more than one application to eliminate the tissue.

I have found that after the first year Mums site completely calmed down and accepted the gastrostomy tube, we did try the button corflo cubby, but it was too close to her skin as you have to keep re-attaching the extension set.

Did your daughter have the gastrostomy tube inserted initially?

I know what you mean about the syringes, I use to have to sterilise them every night to reuse them for next day, but now I get enough to use only once and dispose. I also use H20 water instead of cooled bolied water and gally pots all this advised by Mums dietican, so our nurses have to supply what we need. So I suggest you speak to your daughters dietican so that she/he will contact your nurse to get you a regular supply of water, syringes and gally pots. Always make sure you have an extra tube/button at home at all times, as you never know when it might come out and it will close up fairly quick!

Hope this helps you Sandra and please let me know if I can help further.

Take care
M x
96 posts