Thank.you Minda. What a lovely positive message to read. I am so pleased to hear you have recovered well.
I honestly think my daughter is a miracle. My husband, her stepdad, keeps saying she had someone looking over her and she is here for a reason. I just need to try amd stop tormenting myself daily about it. I feel so traumatised by the whole thing. It just baffles me how this can happen, and yet to so many people.
I spoke to one of the neurologists the other day and they said that they had had two more child AVM cases in.
I do have to keep raining in on the positives. They were able to operate on where it was and remove the AVM.
She has made an amazing recovery with little or no deficit. She sometimes gets niggly but that may be a side of the keppra, or just being completely fed up that this has happened to her.
Best wishes to you and thanks again for messaging me.
Hi @MILLIE0981
Iām another mother of a child with an AVM.
My daughterās was found prenatally. Itās located in her right frontal lobe. She had a craniotomy at 4 months old. She was ok until age 6 when it resurrected. Sheās monitored since then, but the AVM has always been viewed as too compliant to treat. Sheās now 14 and has become a candidate for treatment which will hopefully happen in the near future.
The role of a mother in all of this is really hard.
Itās hard to watch your child suffer. Itās hard to watch your have seizures or cry because theyāre different or canāt do the other things that their peers can do.
You wish you could take it away but you canāt.
And theyāre so young!
You should have lots of strength for yourself and your daughter.
May she have a continued recovery without complications.
Awww thank you for reaching out to me. My daughters was the right frontal lobe too. Luckily the surgeon said there should be no long term development issues, and as far as i can see, she seems herself pre AVM rupture.
Its so hard like you say seeing them go through it. The hole experience has completely traumatised me if being honest.
Did they say why your girls AVM resurrected? I had it in my mind that its very rare for reaccurence after having it removed?
My girl is on Keppra and has not had any seizures since the day it ruptured.
I hope your daughter gets the treatment needed to obliterate the AVM.
Hi, not to completely stop them but potentially wean her down on the dosage. Nothing been set in stone yet. I will likely know more when i see the neurologist on 31 August on our first follow up.
Hi Millie, I am sorry for what your daughter and your family has gone through but very happy that she is recovering well!
My daughter had a bleed when she was 11. The location of her AVM made surgery not an option, so she underwent Gamma Knife. I am happy to report that she recovered well, has no deficits, and her angiogram this week showed that the AVM was completely gone (three years after her bleed).
Some learnings from our situation that I hope can be useful to you:
My daughter was on Kappra but never had seizures. The dose was slowly reduced until she did not need to take it any more (one year after the event). Most likely the doctors will take her off the medicine if they donāt see any seizure activity. We wanted to be prepared in case a seizure happened and trained everyone around us on what to do / not do
I agree with one of the earlier comments in terms of treating your child as normal as possible. We have two other kids and she received no special treatment. Sometimes it is difficult as a parent but the ātough loveā has paid off in the long run. We are very present and compassionate with her but so far avoided her becoming a victim.
We took our daughter to see a psychologist once she was out of the hospital and it really helped her to talk to someone other than her parents. She was also admitted to make-a-wish foundation and chose a dog as her wish (if you are interested, find out at the hospital if this is an option for your daughter), the dog did wonders for all of us. My daughter first had feelings of anger (why me?) but then it become guilt when her doctor would say how lucky she was. I have no doubt that surviving what she went through will be her superpower when she grows up.
As parents we never sought professional help but looking back I wish we did because itās been more difficult and longer than expected. PTSD is the right way to describe it.
Best wishes to your daughter, stay strong - things will be better every day
Pabs
Welcome @pabs, its great to hear your daughterās gamma knife was successful and she is doing so well. Thanks for being here with us, you have a lot of experience and perspective to offer. Take Care, John
Pabs, thank you so much for sharing your story/experience with me. I am so pleased to here of your daughters recovery. It sounds like she is doing amazing. Its so good to read such a positive outcome.
So pleased to hear your daughter has made it through. I know how devastating it can be to have a child have a serious rupture at that age. My son was 9 1/2 when he had his first rupture, we were told to say goodbye. He was slipping away. His body was shutting down. He was raced from one hospital to another as well for the same emergency surgery. He survived and then had a second rupture 6 months later at his 10th birthday party. He survived that one too. Kids are tough.
For us we knew the AVM was there from the age of 5, it was predicted to rupture by the time he was 10, and I lived every day and night in fear. To some extent I still do. For him it can still happen again. Heās 15 now. But, in time, and this might sound strange, it becomes your new normal. Itās a part of your daily life. I do get edgy and go on watch mode whenever it rears it head or something strange starts to happen though. Everything else is segregated to the category of unimportant until things settle again and then itās back on with daily living.
I canāt say that this wonāt be a concern for you again in the future but I can say that it would be a rare occurrence. I can also say that it would likely be identified because your daughter is being monitored.
How you are feeling now is natural. Youāve been through a major trauma. In time things will settle. Good luck and best wishes to your daughter, you and the rest of your family.
Christine, thank you so much for sharing your sonās story with me. I am so sorry you and your son have been through this awful experience too.
I really appreciate your kind words and positivity. I know your son had surgery, but can i ask what surgery they did? Just heartbreaking to read he had another rupture when he was 10.
Thought Iād do an update as itās been a little while since the last one. We went back to Alder Hey childrens hospital (UK) today for our first follow up appointment. We took some thank you letters and chocs. The team there are made up with Millies progress. She will be invited back at some point in October for another angiogram just to fully check the AVM has completey been obliterated by resection. Plan after this is to have an MRI after 1 year and then another MRI at 5 years providing they are clear she will be fully discharged. Millie will be kept on the keppra medication for atleast another 6 months and if no seizure activity they will wean her off them slowly. A bit of an anxious wait now until angiogram in October and if honest I am worried about her having another angiogram as i know they do get done with risks. Thanks everyone for your love, support and kind messages over recent weeks. Iām hoping the darker days are now over, well until the winter starts drawing in anyway
Wasnāt surgery but two different forms of radiation. Stereostatic Radiosurgery (Linac) and Gamma Knife. In his particular instance he would have been far better off if heād had Gamma Knife only. Linac was wrong for him with his particular AVM.
All of this sounds excellent! A road back to freedom.
The way I look upon the risks in these things are to question, āIs it necessary?ā In this case, the purpose of the scan in a few weeks time is to check that everything that needed to be closed off is properly closed off. You can see some of this via a less invasive scan but in reality, the level of detail you want to see is much closer: the angiogram allows the surgeon to see even the tiniest vessels conducting erroneous flows.
The other thing I remind myself of is that there is almost nothing we do in life that is without risk. We think nothing of crossing a road or jumping into the car to nip to the shops for something weāve forgotten, yet the risks involved in doing either of these things are just as injurious as an angiogram. Through familiarity, we have put away the dangers greatly. They are not dangers we should ignore or become complacent about but they are ones we accept.
The difference is that when we cross a road or drive, the vast majority of the responsibility for our safety sits with us: we look both ways, we pay attention and we get there safely. When we go into theatre, we have to give up that role to the surgeon: that they will take similar care of us. I think thatās the bit thatās a little unsettling: the releasing of control. But in talking to the surgeon, you get that assurance that they are expert at what they are doing and can be trusted to look after you.
Honestly, sounds excellent and I hope each step continues to go in the right direction. Well done all of you!
Thank you Richard, what you said makes a whole lot of sense. You are so right. I guess we wouldnāt do anything if we thought too much about the risks.
The neurology team are happy for Millie to return back to school full time too. Its amazing how far she has come. 6 weeks ago she was fighting for her life.
Thank you for your kind words and support.
I hope you are keeping well too.
Iāve just spent the last hour re-watching this film because I think it is relevant to a patient in another community; and what the various participants say at the end of it is just spot on. It is such a blessing to be able to show people that, although stroke in particular, is something that takes a lot longer to recover from than any of us feel is fair, with a bit of luck and hard work, good outcomes can be had with the right inputs.
That I might encourage you a little, or others, not to give up, not to find the recovery from these things so hard, is the most wonderful thing. To be able do that using bare, written words astounds me constantly.
Welcome to the family & Iām so sorry to hear about your precious daughterā¦ I can only imagine what it would of felt like as a parent & someone who has suffered an AVM bleed & had it surgically removed.
Please stay positive as it will help her be strong & fight whatever comes her way in the futureā¦ she may or may not have any issues again but she definitely needs to live life now she has overcome this.
Keep us updated on her progress & if there is anything we can help with please donāt hesitate to askā¦ we have the best members from all over the world from survivors to parents etc etcā¦ God bless!
Hi Greg, thank you so much for messaging me to see how Millie is doing.
Millie is nearly 8 months out following her rupture on 21 July. She continues to amaze me with how much she has overcome, but shes doing brilliantly. She is off to high school in September. Eeek.
She is still on keppra but touch wood no seizures since initial presentation of rupture. They will review her medication in July once she has gone a full year with no episodes. She still gets fatigued and looks pale on occasion but other than that shes pretty much back to her pre rupture self.
How are you doing? I hope all is well!
Weāve woken up to a covering of snow this morning. Millie is very excited.
I hope you are all keeping well? Its been a while since i have posted.
Having spoken to Millieās neurologist theyāve came up with a plan to wean her off keppra. She had a few accute seizures when her roght frontal lobe AVM ruptured, and had been on 750mg keppra twice daily since, with no breakthrough seizures.
The plan is to reduce her keppra by 100mg every 2 weeks, until she has been on 150mg twice daily. She will then do two weeks on 150mg once daily and then nothing!!
Needleas to say my anxiety has gone up again as im so scared of her having a seizure with coming off the meds.
Has anyone successfully come off keppra with no seizure activity??
I know i will be watching her like a hawk again, just as Iād started to relax.
Her AVM ruptured 21 july last year so she has been on keppra for 11 months.
Her last angiogram did show signs of necrosis/scar tissue and haemosiderin deposits.
Thanks for listening and any input you can provide.
