My grandson has Lennox Gastaut and CP. Dr has recommended Corpus Callosum surgery. Anyone had this? — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

My grandson has Lennox Gastaut and CP. Dr has recommended Corpus Callosum surgery. Anyone had this?

CaryforJojo
CaryforJojo Community member Posts: 11 Listener
edited May 2021 in Cerebral palsy
I am Jojos grandma and he has Lennox Gastaut and Cerebral Palsy. He has continuos seizures and we have tried various combinations of meds with no luck. After several VEEG and MRI’s his Epileptologist has recommended a Corpus Callosum surgery. Jordan is non verbal and becoming a teenager this month. I am here to read, learn and maybe speak with others who’s child has had to go thru this. Thank you

Comments

  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
    Hi @CaryforJojo and welcome to the community! I've not heard of Lennoz Gastaut before, if you are comfortable, would you mind explaining a bit about the condition? I will also tag our Cerebral Palsy Specialist Information Officer @Richard_Scope who can hopefully advise too :)
    Disability Gamechanger - 2019
  • chiarieds
    chiarieds Community member Posts: 15,889 Disability Gamechanger
    edited May 2021
     Hi @CaryforJojo - & welcome to the community. With you saying about your grandson having continuous seizures, this made me think about another disorder called Dravet Syndrome, where children may also have multiple seizures daily. It's probably because I take cannabidiol (CBD) for chronic pain that I'm aware of such things, & altho I'm a long-retired physio, I have remained interested in neurological problems. CBD is cannabis without the element that gives you a high called tetrahydrocannabinol (THC).
    My point is, that Epidiolex, a purified form of CBD 'may' help those with both Dravet & Lennox-Gastaut Syndromes. Please see: https://www.nhs.uk/conditions/medical-cannabis/ I knew that there have been test cases in the UK for the use of Epidiolex in Dravet Syndrome, but have found there now seems to be guidance from the National Institute for Health & Care Excellence (NICE) too that it can be used in Lennox-Gastaut, as well as Dravet Syndrome.
    Now nothing can replace the care your grandson's specialists give him, & they know him best, but perhaps mention Epidiolex 'just in case.' If his specialist hasn't considered this, please give them this link: https://www.nice.org.uk/guidance/ta614/documents/1
    I wish yourself & Jojo all the very best.
  • CaryforJojo
    CaryforJojo Community member Posts: 11 Listener
    Hi sorry I am not sure how to reply to each individual lol help. ?
  • CaryforJojo
    CaryforJojo Community member Posts: 11 Listener
    @chairieds yes he has been on Epidiolex for years. He was one of the lucky ones to do the trial before it was FDA approved. We have been thru so so many different meds and nothing is helping him. He has between 20-50 seizures a day. Some days are better than others but meds are not cutting it. 
  • chiarieds
    chiarieds Community member Posts: 15,889 Disability Gamechanger
    edited May 2021
    Hi @CaryforJojo - as I have done with your username, you put the @ sign in front of theirs.....so to reply to myself, you would put @chiarieds :)
    I'm sorry Epidiolex hasn't helped, I just would have felt awful if I hadn't mentioned it. Hopefully Richard_Scope will know more.
  • CaryforJojo
    CaryforJojo Community member Posts: 11 Listener
    @Ami2301 thank you ? Lennox Gastaut syndrome (LGS) is a type of epilepsy. Patients with LGS experience many different types of seizures including: Tonic - stiffening of the body. Atonic - temporary loss of muscle tone and consciousness, causing the patient to fall. Atypical absence - staring episodes.
  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
    Thank you for explaining @CaryforJojo and i'm sorry that your grandson has to endure these, it sounds horrible! :( If you need anything at all, please do reach out even if it's for a chat or if you have any questions then we will do out best to help you as much as we can :)
    Disability Gamechanger - 2019
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Hello @CaryforJojo

    Welcome to the community, I'm sorry to hear what your grandson is going through but I'm glad he clearly has a very loving and supportive family around him :) 

    I hope you are getting used to how the community works, but if you have any questions then you are always welcome to ask, it's good to see that one of our other members helped you out with replying to people directly :) 
    Online Community Coordinator

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Did you receive a helpful reply to your discussion? Fill out our feedback form and let us know about it.
  • CaryforJojo
    CaryforJojo Community member Posts: 11 Listener
    @Ross_Scope thank you so much you all are so nice ? I am so grateful to have joined. You all are very supportive and it’s appreciated 
  • CaryforJojo
    CaryforJojo Community member Posts: 11 Listener
    Hello everyone my grandson is 13 yrs old and has Lexxox Gastaut and Cerebral Palsy. Suffers from daily seizures and after trying many different meds, Med combinations, MRI’s and VEEG his Epileptologist has recommended having surgery. They call it split Brain (Corpus Callosum) 

    Has anyone here had this surgery before? This is extremely difficult for me to go with but I hate to see him seize so much during the day. 

    Anyone? 

    Thanks ? 
  • Sandy_123
    Sandy_123 Scope Member Posts: 43,924 Disability Gamechanger
    Hi @CaryforJojo sorry to read your grandson has daily seizures, can't be easy to deal with. Have the specialists given you any information on the operation? 
    I have a link you may find an interesting read, I hope every thing goes well with your grandson and we are here if you need to chat. Good luck.

    https://www.gosh.nhs.uk/conditions-and-treatments/procedures-and-treatments/corpus-callosotomy/
  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,488 Disability Gamechanger
    Hi @CaryforJojo :) Welcome to the community.

    Just to let you know, I've merged your two discussions. This is because they appear to be about the same topic, and it might be easier to keep the responses in one place. 
    National Campaigns Officer, she/her

    Join our call for an equal future.
  • andersf
    andersf Community member Posts: 3 Listener
    Hi,
    My son had this surgery at the Epilepsy surgery unit in Bristol aged 6 due to intractable epilepsy and multiple severe seizures daily.
    Unfortunately we had a lot of complications after the surgery so it was a long recovery period. However the surgery definitely improved the length and severity of his seizures so we ultimately saw it as a success. Good luck with your decision.
  • CaryforJojo
    CaryforJojo Community member Posts: 11 Listener
    @Ami2301 thank you so much. I
     am hoping to chat with all that has any info that can be helpful. Thanks for the warm welcoming :smiley:
  • CaryforJojo
    CaryforJojo Community member Posts: 11 Listener
    @Sandy_123 Hello and Thank you very much for the link you provided me with. Yes they have but I almost feel like he is saying there is no other option than keep medicating him or surgery. The info they have provided me with is exactly what I read from the link u provided me with. I just wish I can speak to parents that have been thru this already. I am hoping I will find that here. I really appreciate you guys.
  • CaryforJojo
    CaryforJojo Community member Posts: 11 Listener
    @Tori_Scope Hi there and thank you for merging the posts. lol I will soon get the hang of this. :blush:
  • CaryforJojo
    CaryforJojo Community member Posts: 11 Listener
    @andersf Hi there. Wow I am so glad to hear that your sons seizures have gotten better. I have so many questions for you and I totally understand if there are things you won't talk about. :smile: my baby is a special needs non verbal so it makes it that much worse to go thru with this. Would you mind explaining the complications you faced? My grandsons seizures are about 25-35 seconds long. He doesn't breathe while in a seizure and he has the tonic/clonic myoclonic and absent seizures. He gets between 20-50 a day.  He was taking Briviact, Keppra, Onfi, Epidiolex, Vimpat and Gabapentin while we were seeing his neurologist. I was referred to see an Epileptologist which was not happy he was on so many seizure meds and was still not getting any results so now he has weaned him off of most meds leaving him with only Onfi, Fintepla and Vimpat. We were admitted this weekend to do a VEEG and this is when he tells me Jordan qualifies for this surgery.              

    I'm sorry for this long message but what ever info right now helps me so much

    Thanks
  • andersf
    andersf Community member Posts: 3 Listener
    Hi, happy to answer questions. My son is non verbal, non ambulant and has severe mental and physical disabilities too. Before the op his seizures were up to 4-5 minutes long where he would stop breathing and go blue ? he had a range of seizure types and anywhere between 10-40 a day. I can't remember the meds he was on at the time sorry. 
    Op went well and we were discharged after a week. A few days later we were readmitted as H was obviously in pain and after scans they realised he had fluid build up on his brain. Another small op to drain it went well. Following this op H wouldn't eat and drink properly and lost a lot of weight and developed a movement disorder. We were in hospital for about 3 months in the end and he had to have a PEG feed tube fitted.
    Positives - the movement disorder stopped, he put weight back on and most importantly his seizures reduced in length to a max of 30 seconds long, no blueness and about half as many. He's currently on Keppra, clobizam and rufinimide. His seizures have increased a bit more recently but he's in puberty so this is expected.
    Hope that helps. Feel free to ask anything else.
  • CaryforJojo
    CaryforJojo Community member Posts: 11 Listener
    @andersf I first want to thank you for responding in details to me. Yes it does help me a bunch! It sounds like a lot to deal with and I'm sorry H had to go thru so much. My Jojo will be the big 13 on 5/29 so he also is in puberty although I feel as his seizers have gotten worse because the doctor has taken him off of so many meds in such short time. So there is a lot of changes he's going thru. We had the G-tube installed at 9 months old n that does help to keep them healthy and keep feeds down. Did they explain why he had the fluid build up? Do you know if that is a side effect of the surgery? I was told that obviously like with any other surgery there can be complications but that really sounds very frightening. 

    I am just non stop trying to get informed as much as I can to know what to expect although not a single patient is the same but this is just really stressful and i am hoping that his seizures reduce.  :(  

    I really appreciate u and your story u shared.
  • WestHam06
    WestHam06 Community member, Scope Volunteer Posts: 1,396 Pioneering
    Hi @CaryforJojo,
                               Welcome to the community and thank you for joining us. How are you? Firstly, I'm really sorry to read of what your Grandson is going through and I can imagine it must be a very difficult time for you and your family. Though I am unable to offer personal insight or advice regarding your situation, I wanted to share that if you feel there is anything you would like to ask or talk about, please do just reach out and we will do our best to support you. I really hope that you receive the information and support you need to help you. Best wishes, thank you. 

Brightness

Complete our feedback form and tell us how we can make the community better.