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Has anyone had VNS done for their child

My daughter Has LGS and her seizures have been very hard to control. When a med helps she eventually becomes immune to it. We've been through all meds. She is currently on Felbamate and the Keto Diet. VNS are our last hope. So our neurologist tells me.

Comments

Re: Has anyone had VNS done for their child

Hi Abby, my daugther was also diagnosed with LGS and had been also hard to control her seizures. She is on 5 different medications right now and seizures continues. Options we were told are: Horminal terapies (use of steriods) and the VNS. I know both are drastic in terms of side effects and do not control 100% of the seizures, probably only 50% reduction.
We had to take our daugther to Mexico City because she run out of medication options here in the US (due FDA regulations). There are more medication options in Mexico but she is still not showing improve at all.
There are more medication options in Europe before going into the Steriod terapy or the VNS, so we are really considering to move there to have access to a wide range of medications and better medical systems. Also Europe are far more advance in the steriod terapy and VNS.

It is been so hard to deal with this, and everything is getting worse so fast with my daugther that we are running out of options. So I told my wife that we are moving wherever is neccesary to bring all the medical resources to my daugther.

So, talk to your doctor about this steriod terapy. We did not agreed on the Ketogenic diet because we check some statistics that shows it really does not improve to much in the seizure contol and creates an unbalance in child metabolic activities plus the heavy side effects of the medicine.

Good luck, Jorge.

Re: Re: Has anyone had VNS done for their child

Thank you so much for your response. We are meeting with a surgeon on Tues. to discuss the vns. I really hate the thoughts of more meds. Abby is on the keto diet right now. We tried to take her off because we didn't think it was working but her seizures got worse. It seems like everything has severe side effects but LGS is so severe that there is no other options but to risk the effects. I don't know any other parents with children that have LGS so I hope you keep in touch.

Re: Re: Re: Has anyone had VNS done for their child

Hi, this is so difficultu to deal with, all LG patients apperantly respond very bad to all medication, so only minimal control can be achieved. My daugther doctor already told us that she is runnin out of medication options, so the next step is the hormonal therapy I was mentioning: i think the name of the hormone is ACTH, ask your doctor about this. I know there are more severe side effects than with medications, but is the steps to follow. Then, if the normonal therapy does not work, the VNS is kind of the last resource and is also agressive in side effects.
My daugther is still only on medications (5 different ones), she has seizures every day and we know options available and drastic/agresive and very few.
Wish you luck and lest keep in touch.
Jorge.

Re: Re: Re: Re: Has anyone had VNS done for their child

Hi, I know today is your appointment with the doctor to see the surgery option for your daugther. I did not found good references with the VNS in kids in the US. Other references metioned a reduction in seizures activities up to 50%.
In this same group (surgery options) there are some comments about the VNS in adults with very different results (take a look on those comments).
Please, keep me informed about what the doctor told you, please. We are exactly in the same situation apparently.
For us, today there is a Neurological Board Meting in Mexico City to decide starting the hormonal therapy on my daugther this week for 2-3 months probably and (if no progress is achieved), go to the VNS.
There are very few cases of VNS in kids, doctor told us our daugther case is very rare and severe, so, many people (6-8 doctors) are rigth now fully involve in this. I am really overhelmed about the medical attention she is receiving, but I just want to have my daugther back.
Please, keep in touch...and good luck. Jorge.

Re: Re: Re: Re: Re: Has anyone had VNS done for their child

Hi- it's good to hear from you. We did meet with a surgeon on tuesday and he gave my daughter a 65% chance of having reduced seizures. He's a very qualified DR. I feel very good about it- although I cry every time I think about it. But I have to try anything I can to give Abby back some quality of life. Does't that just suck to be in the position of talking about quality of life and not making her better. I'll Pray Everyday that it helps. I don't know what we will do if there is no improvement. There are quite a few cases of LGS at Columbus Childrens Hospital in OH. I have never met any parents though due to privacy policies. Our surgeon has said he's done many VNS surgeries. we are there so much they are like family. They are great. He said if it doesn't work at first we can turn it off and try a few mo. later- that sometimes it starts working. From what I understand the risk is very little. It breaks my heart that my beautiful girl will have to be scared. But we pray for a miracle that it will work. She is very severe too. She can't play anymore and i haven't seen her laugh or smile in months. We just want our girl back too. Good luck and our prayers are with you.

Re: Re: Re: Re: Re: Re: Has anyone had VNS done for their child

Thanks for your comments. I think our daugthers are so similar in what they are dealing with. My daugther is going to have 2 months in the hospital. We are also praying for a miracle before going into this steriod therapy or the VNS. Now we have some spiritual help from special people that is trying to help her.
I can not believe all the people we have close to us and to her and how many people is been sentimentally affected. However, I saw my daugther fighting this and dealing with this severe epilepsy with an attitude that I can not describe to you. It is amazing her strenght.
Yes, results with VNS can be good in terms of reducing in some percentage the seizure activity and if the results are not good, they can turn off the unit.
I found some articules from 2005 related the VNS and ACTH therapies in kids with difficult to control epilepsies. I can send them to you by email if you want. My email address is jlango@yahoo.com
We are keeping daugther in our prays. write you latter. Jorge.

Re: Re: Re: Re: Re: Re: Re: Has anyone had VNS done for their ch

Thanks we'd appreciate that. My E-mail is jpttruckingllc@yahoo.com. Not to be rude but can I ask how your daughter is doing? Ours stopped walking back in Sept when her seizures jumped to 40 daily. And she had to have a feeding tube. We Have her on Felbatol now and the ketodiet now shes down to under 10 daily but she doesn't play and rarely smiles. She has never spoke. Is your daughter even compareable? I've not seen another child so severe. I thought we were the only one.

Re: Re: Re: Re: Re: Re: Re: Re: Has anyone had VNS done for thei

My daugther is walking with many difficulties and barely speaking. She was almost 2 weeks unconscious because she entered in a severe myoclonic status epilepticus. 4 of those 15 days she was in coma. We do not know yet is there was brain damage during that period with all those constant-24 hrs seizures ocurring. Now, she is still in the hospital having like 2 seizures a day that last long period of time. She is taking 5 different medications that make her very sleepy. Diazepam is also used everytime the seizures last more than 5 minutes. She has been presenting all kind of seizures.
We are still waiting for the decision of starting the hormonal therapy. She recently came back from the coma so, yes, she was breathing and feeding with tubes, not anymore in the last week. Progress is very minimal and also Drs. are telling us her case is very rare. I this had happen in 8 months: from an active lovely child to her actual condition. Nobody knows the origin of this and why so fast and so severe. "WHY" is always the question in our minds.
Drs. are telling us that her seizure patterns shows a severe mix between Doose and LG syndromes. We do not know nothing, we do not know what to do, where to go or how to escape from this...is so hard to put everything in God's hands when you see your daugther suffering like that. Send you an email latter...Jorge.

Re: Re: Re: Re: Re: Re: Re: Re: Re: Has anyone had VNS done for

We're definately in the same boat. It's very hard to watch your childs life dwindle to nothing and you can't do anything about it. The drs can't tell us anything either. they don't know why. it hit our daughter very quickly. It is hard cause you don't know what to do but Its so bad that the doctors are running out of options that I figured it was time to quit trusting in myself to find help for Abby or trust the drs and give it all to GOD- he will take care of her no matter what. It's hard but we have to accept GODS plan for our lives wether we like it or not. But I will continue to do everything I can for her and just pray a miracle. Maybe something will work but only if GOD allows it. It breaks my heart everyday. I am so sorry for you I thought there was no other child like Abby because no one has any answers.

Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Has anyone had VNS done

Someday I was reading about the epilepsy to be an spiritual "disease", some people use to call it "the bless disease" based on the idea that is God's chanelling to the patient trough a so called "the God's Spot". My daugther woke up from unconseous state after been in myoclonic electrical status (one of the worse epileptic conditions because the risk of permanent brain damage) and the first think she asked after she saw my wike was: "why do you have a crux in your forehead"...mi wife was in shock. The my daugther saw my mother and mentioned: "and you also Grandma, you also have a crux in your forehead...why?
This conditions we are dealing with my daugther is becoming more and more spiritual as the "traditional" medicine is running out of options. Perhaps we should focus more on the spiritual side of side than in the medication side. My daugther is still strugulling with this, but now I know that whatever happened during her unconcious time, makie me fell that she is way more spiritual and closer to God than me and mi wife.
Probably, the day we as parents accept her condition and really be thankfull to God and put everything in HIS hands, she will recover or she will be with HIM. God bless you, Jorge.

Re: Re: Re: Re: Re: Re: Has anyone had VNS done for their child

Hi, I thought I could offer a little help on the subject. I don't personally have seizures but my fiance does (grand mal, tonic-clonic). We started dating roughly 3 years ago. Shortly after we started dating, I began to find out (little by little) about her seizures, her daily struggles, and so on. From what she would tell me, her stories sound very similar to those of your child i.e. daily, multiple seizures and frustration with her condition. She went through a very rough stretch for quite a number of years (her seizures started at 16, she is now 28). Come to find out, just months before we started dating, she had a VNS implanted. To use her own words today, "VNS has been a miracle". She can usually "catch" a seizure with her magnet by swiping her VNS and if she is unable to catch it, the VNS seems to help to limit the severity of the seizure. The VNS has helped her tremendously and as I continue to learn more and more about her condition and how to deal with and treat it, I realize just how important the VNS is to her. I know that if she could, she would go round the country telling all about how the VNS has helped her. She remains on daily meds such as Keppra and the like, but she has made tremendous strides in her health and overall "quality of life" just within the 3 years we have dated. Counseling has also played an important role in her life to help restore her self image and self confidence.

The side effects that you speak of are noticeable, but only to a limited extent. Her voice can become raspy at times, her throat is sometimes irritated by the wire, and she does sometimes sound a little different when she is speaking when her VNS is "kicking on". These effects usually only last the duration of the stimulation though, of course depending on how the VNS is set. I am comfortable in saying though that she will gladly take the discomforts of the latter than the results of the former i.e. not having the VNS. The percentage decrease in seizures is all relative but for her it has been about as dramatic a reduction as one could hope for. Her number of seizures has continued to decline since we have dated and she is now to the point where she rarely is unable to "catch" the seizure. She is not completely rid of the seizures, but to even say the difference is night and day would be an understatement. I think it is important to note though that her counseling along with regular changes in meds and the VNS all seem to work hand in hand with each other in order to maintain the utmost level of consistency.

I hope this provides some insight for you and I hope you are able to find the resources and answers that you seek.

God bless and take care

Jon

Re: Re: Re: Re: Re: Re: Re: Has anyone had VNS done for their ch

Thank you so much for your comment. It's so good to hear positive responses. My daughter was implanted on May 9. It has not been turned on yet. I'm really expecting it to help some. A raspy voice cough or difficulty swallowing is nothing compared to her daily seizures. I think we will manage if it helps her. Thanks!

Re: Re: Re: Re: Re: Re: Re: Re: Has anyone had VNS done for thei

Abbygirl,

first off I hope your daughter is doing better with the VNS. My daughter has 4 different kinds of seizures that we know of. tonic.clonic, granmal, petite, focal. when we meet with her doctor about the the VNS he gave us two options to place her on a 3rd med or to have the VNS installed. long story short we gave her the option. we of course would have Vetoed it depending on what she told us. after the implant it took about 3-4 wks before we had it turned on. her voice was a little raspy each time they turned it up and for a few days there after. she has not had a granmal seizure in just over 1 year now. her quality of life HAS improved, she still is a little of keel but much better now.if you have any questions about the device just email me and ill get back to you.

scott and kellie

Re: Re: Re: Re: Re: Re: Re: Re: Re: Has anyone had VNS done for

My son has partial complex seizures, he would have seizures at least twice a week, he is taking 5 different meds, 16 pills a day. He had the VNS surgery in Feb.of this year and has only had 3 seizures since. He's been seizure free for the past 2 months. It takes a while for the effects of the VNS because they turn up the setting alittle at the follow up visits until they find the right setting. There aren't really any side effects, usually just a shaky voice or cough when it comes on. He will be coming of some of his meds at his next visit. The magnet gives me the feeling of having some control and I love it because anyone who has to watch a loves one seizing knows the feeling of being helpless by wanting to control it and not being able to. I would recommend the VNS to anyone who has tried everthing else with no improvement. I hope you and your daughter will benefit from it too.

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