4 year old lennox gestaut syndrome

[goldenbaygirl]

I am so terrified. My 4 year old started having drop attacks and probably absence seizures in feb and has been diagnosed with epilepsy and put on epilim/sodium valproate. At the moment they have greatly reduced her seizures (7 days seizure free today). we saw a paediatric neurologist today and he said she probably has lennox gestaut syndrome. He seemed fairly positive about her managing it with drugs etc and i came away feeling positive.

However i have just googled it and and am now in tears. Most of what i have read says patients never recover and cant control seizures and have psychological and development problems. My daughter has no developmental delays and is very smart and active. She is a little hyperactive which seems to match the description?

Are there different types or severity of this syndrome? Could she control and grow out of it?

Please tell me about your experiences

Thanks,
Very distressed mum

[youarekiddingme]

I have come it across it before and all the children are different. There is a certain brain wave pattern that can indicate LGS and also something called pseudo Lennox syndrome (or something similar).

My advice would be to ring and ask for neuro to call you and explain his thinking and reasons behind it. Otherwise you'll drive yourself mad on google and your already dealing with the shock of epilepsy.
Great news at 7 days seizure free.

[Anomia10]

I can't give you comfort as every child is different, but I agree with yourarekiddingme that you should ring the neurologist's secretary and ask if you can have a discussion with him on the telephone (preferably) or failing that another appointment asap, as you need more information on his diagnosis of probably LGS - you are in shock! I guess he made the diagnosis on the basis of the characteristic EEG? (Ask him).

I will give you some basic information on epilepsy management, in case you don't have paediatric epilepsy nurses where you, and it saves you having to reinvent the wheel all by yourself! I sincerely hope drugs do work for your daughter, but beware of the honeymoon effect in a difficult to control epilepsy:

www.epilepsy.com/article/2014/3/tolerance-and-honeymoon-effect

Just in case the seizures reappear at some point:

1. keep a diary of the seizures - note what happens and how long each one lasts. (There are online apps too, if you have a smartphone such as seizuretracker and Young Epilepsy have one)
   
2. Using the seizure diary, try to work out what the triggers for seizures are - common ones are hunger, tiredness, boredom/inactivity, medication time approaching (as the effects of the previous dose wear off), being too hot/cold, pain, etc. It is better to eliminate the triggers where possible and prevent seizures. Ensure dd gets food and drinks regularly, a good night's sleep - ie lives in a routine, and makes sure triggers above don't happen.
   
3. Get an auditory monitor for dd's bedroom, linked to yours, so you might hear seizures in the night
   
4. There are safety pillows for epilepsy (don't know anything about them other than they are for sale)
   
5. Sheet monitors - mixed results for these, as normal movement in sleep can set them off (not tried these either, but that's what we've been told)
   
6. Safety in the home where possible to minimise injuries from drop attacks - choose carpets, instead of vinyl flooring except in the kitchen; move furniture to the edges of the room (such as coffee tables, etc), make sure potentially injury causing items like 3 pin plugs, glasses, etc are not left on the floor, in future don't buy glass tables, always supervise dd in the bath (safer than showers for drop attacks). Guess you can't help toys on the floor with a 4 year old, but just try to eliminate unnecessary risks!
   
7. Ketogenic diet - if a tolerance does develop to Epilim, the neurologist will probably want to try three drugs, before considering other treatment options. However, with a 4 year old, you could ask him if you can try the ketogenic diet sooner rather than later. Look at Matthews Friends website, a forum for parents of children with intractable epilepsy and who have tried different versions of the ketogenic diet. I don't want to get your hopes up and I can't remember the statistics for how effective it is, but some children with LGS can achieve seizure freedom, and even when they come off the diet after 2 or 3 years, the seizures don't come back. Its worth a good try - however, you can't do it by yourself, as it is not a balanced diet. There has to be a dietician supervising it, and prescribing dietary supplements. Matthews Friends can give lots of other good advice such as side effects of drugs, as many experienced and knowledgeable parents go on there.
   
8. If the seizures are under control, there may not be enough evidence for a request for an assessment for an EHC plan yet, but IMO many children with epilepsy not under control, can have special educational needs due to poor attention (absences interrupt concentration), the need for 1:1 supervision for safety reasons, etc. Just bear it in mind. Young Epilepsy has a helpline, IIRC about education and epilepsy. Also, IPSEA and SOS!SEN can give advice on how to navigate the SEN system.
   

Finally, be knowledgeable about epilepsy, but don't think too much about the future, Google can be very depressing. Take each day as it comes. Don't wrap her in cotton wool; it can cause behavioural problems (IIRC) - she has to live a normal life.

[goldenbaygirl]

Thanks so much for your thoughtful and really helpful answers. I was driving myself nuts and called the neurologist. This has helped really reassure me as he says he expects her to develop normally and that her ' kind' of this syndrome is really nothing like the more serious end of the spectrum. Still a bit confusing as all the information on the web is extremely scary and there seems to be no information about children with Lennox gestaut who have normal development and seizure control. Still I am cautiously very hopeful now, but thanks for your advice anomia, thats super useful. Will try and keep her well rested, fed etc. might also put the baby monitor in her room to make sure we don't miss any possible night seizures.

[Anomia10]

I asked an experienced epilepsy nurse why my dd had not developed behaviour problems, as per info on the internet. She told me its also down to genes, personality and upbringing.