Feedback please on young children with AVM

When I have more time I’m going to read some of your stories, go onto Facebook etc. For the moment, I want to be able to give my daughter some information about children who have AVM since my granddaughter has been diagnosed with it and is, at the moment, being kept sedated with her brain cavity being drained of blood. If any of you have experience of children (my granddaughter is 6) with AVM I would appreciate it if you could share. Thanks, Ruth

Hi Ruth! You will find lots of great encouraging stories on this web site. You have come to the right place.
My 10 year old daughter had a bleed from her AVM this past July. It resolved itself, so she didn’t need to have anything done at that time, but we did have a three day hospital stay, to observe her to make sure that it wasn’t getting worse.
Since then, we have had CT scans, MRA, and an angiogram, and are finally scheduled for embolization and craniotomy to remove it, this January. I know how hard it is to watch a child go through all of this. It is tough, but at least kids are pretty good at bouncing back from these things. That is what is great about the young brain, it is very resilient.
Hang in there, we are saying prayers for you and your granddaughter.

Susan

Hi Susan and thanks for replying. It is really hard as, until this happened, Tal was one of the noisiest and most energetic of my grandchildren (and believe me - they are all a bit that way - guess the apple didn’t fall too far from the tree!). Now, to see her lying there, unconscious, hooked up to machinery… Well, I don’t have to tell you! We’re praying that no harm was done to the brain by the initial bleed. They’re talking about waking her up tomorrow or the next day. I’ll keep you posted. I’ll print out your reply and take it to the hopsital for my daughter to read tomorrow (she’ll read it to my son-in-law who is virtually blind).

Susan Troop (Lindsey’s Mom) said:

Hi Ruth! You will find lots of great encouraging stories on this web site. You have come to the right place.
My 10 year old daughter had a bleed from her AVM this past July. It resolved itself, so she didn’t need to have anything done at that time, but we did have a three day hospital stay, to observe her to make sure that it wasn’t getting worse.

Since then, we have had CT scans, MRA, and an angiogram, and are finally scheduled for embolization and craniotomy to remove it, this January. I know how hard it is to watch a child go through all of this. It is tough, but at least kids are pretty good at bouncing back from these things. That is what is great about the young brain, it is very resilient.

Hang in there, we are saying prayers for you and your granddaughter.



Susan

Thanks for your reply Liesa. It’s at times like this when we really understand how helpless we are. Our family has been through a lot of stress over the last year and we have seen a lot of miracles. One of the wonders of the internet is that we can, within seconds, request prayers from people all over the world. No doubt in my mind that this is what has got us so far and with G-d’s help will get us through the future. Tal is being kept sedated until at least tomorrow (Thursday) when the doctors will review her situation. Please carry on with the prayers.

Liesa Dugan said:

I just joined the site today. My 11 year old had an AVM bleed and then removed this october and is recovering. Her doctor says that her healing has been nothing short of ‘miraculous’. I can only add that we immediately requested prayer from family, friends, priests and sisters of three orders! No doubt in our minds that God has answered the prayers. So, as her bleed was discovered they had her in ICU for several days. IT was horrible to just sit there and wait and watch. The first procedure removed the clot. Once that was removed they wanted to let her brain rest and for the swelling to go down. About a week later, they removed the AVM which was in the left frontal lobe. IT was the size of a large walnut towards the exterior part of the brain. AS they went in, they found it did lead deeper into the brain than they had previously seen on the CT. They thought they had it all, did an angio, found another spot and sent her right back in for another surgery to remove the remainder. It was a 12 hour day of surgeries. My daughter celebrated a wonderful Christmas with us, at home, just over two months after the surgery. I will pray for your grand daughter, that she have the same miraculous outcome as well.

Thanks for contacting me. We’re still in a big state of uncertainty at the moment as Tal is being kept sedated. They’re not going to do this until her pressure remains low. When they wake her we’ll at least have some idea of what, if any, damage has been done due to the bleed. Then comes the decision as to the best way to deal with the AVM. My daughter Sarah (i.e., Tal’s mom) has been in the hospital since last Friday night, only going home (a distance away) tonight until tomorrow morning to see the other children. My son-in-law is basically blind so, although he’s fantastic, he can really only take over at the hospital if someone is with him. We’re quite a large family so we do what we can but understandably, Tal’s parents really want to be there all the time. Now that we’ve realised that this is probably going to be a long haul we’re going to get a proper rota going for when Tal is wakened up.

Irene C said:

Hi. i had an AVM bleed and craniotomy when I was 8 in 1959. So, I know what it’s like, I remember, and I also know what some of the results can be. Write me.
beans

Hi Liesa. They woke my granddaughter up yesterday after over a week of being sedated. This is hard! She can hear and see - although we’re not sure exactly how much - and also move arms and legs. Her speech gives me a lot of cause for concern. She seems to have very little control over her lips and tongue and seems to be constantly trying to talk. Most of what she says is inaudible and indecipherable. Perhaps this is something that has to be gone through after being on a respirator for all this time or perhaps it’s a symptom of some brain damage. All we can do is pray and wait!

Ruth

Liesa said:

My daughter who had three crainiotomies in October is back to school today!!! We are still having some glitches with meds I think: speech hiccups and some occassional cognative difficulty BUT PRAISE GOD for his mercy! She is getting back to ‘normal’! There is tremedous hope through prayer and the incredible gift of excellent medical staff and the love and support of our communities…when I took her to school this morning she was smiling and very happy to be ‘back’. Now THAT’s the way to start a new year…
I will continue to pray for all of you. Watch for those little blessings…

Ruth
My 6 year old daughter (then 5) had speech problems and partial facial paralysis after an embolization. The resilience of these kids is amazing. the paralysis is gone and she only has minor issues with her speech but it is getting better. The neurologist at the hospital who had treated my AVM 20 years before made me a promise that her speech would resolve itself. It was the only promise we ever got in the hospital.
Keep your chin up, it will get better. We will be praying for you :slight_smile:

Thanks Christine. My granddaughter, Tal, hasn’t even got to the stage of possible embolization yet! She’s still in the waiting stage to see what, if any, brain damage has happened due to the bleed. Then the big decision will be made as to how to deal with the AVM. We’re just praying that this problem with her speech is temporary. However, your mail gives me hope so thanks again.

Christine said:

Ruth
My 6 year old daughter (then 5) had speech problems and partial facial paralysis after an embolization. The resilience of these kids is amazing. the paralysis is gone and she only has minor issues with her speech but it is getting better. The neurologist at the hospital who had treated my AVM 20 years before made me a promise that her speech would resolve itself. It was the only promise we ever got in the hospital.

Keep your chin up, it will get better. We will be praying for you :slight_smile:

Hi Liesa and yup - all we can do is pray, pray, pray. We are Jewish and so our equivalent of a priestly blessing is blessings from big Rabbis and we have got them and are continuing to get them. I’m so happy that your daughter’s verbals came back. It’s so frightening when you see this little girl who, just over a week ago was an extremely lively and happy child, suddenly in this helpless state - so helpless that she can’t even tell us anything. We’re all keeping up the prayers. Thanks for the encouragement.

Liesa said:

Keep the faith. Mine had the same. It was verrrrry scarey but her verbals came back! Pray, pray, pray! And if you can, have a priest bless her! My daughter was continually getting blessings…it’s all I asked for; and when I look at her now, I know they were answered. She has some temporary verbal difficulties here and there that I think are due to the meds. The neurologist said we can switch meds but this is far better than the Keppra side effects so we hate to risk symptoms that might be worse again. The waiting and watching their discomfort is the worst. In October, She was in the hospital for 3weeks. I felt like my life stopped…now I look back and it was like child birth…I can almost forget it. Concentrate on her completely recovering…avoid looking at the worst case and concentrate only on the best case…God Bless.


Ruth Pepperman said:
Hi Liesa. They woke my granddaughter up yesterday after over a week of being sedated. This is hard! She can hear and see - although we’re not sure exactly how much - and also move arms and legs. Her speech gives me a lot of cause for concern. She seems to have very little control over her lips and tongue and seems to be constantly trying to talk. Most of what she says is inaudible and indecipherable. Perhaps this is something that has to be gone through after being on a respirator for all this time or perhaps it’s a symptom of some brain damage. All we can do is pray and wait!

Ruth



Liesa said:
My daughter who had three crainiotomies in October is back to school today!!! We are still having some glitches with meds I think: speech hiccups and some occassional cognative difficulty BUT PRAISE GOD for his mercy! She is getting back to ‘normal’! There is tremedous hope through prayer and the incredible gift of excellent medical staff and the love and support of our communities…when I took her to school this morning she was smiling and very happy to be ‘back’. Now THAT’s the way to start a new year…
I will continue to pray for all of you. Watch for those little blessings…

Ruth, are you part of the parents of AVM group yet: http://www.avmsurvivors.org/group/parentsofavm

Hi Ruth,

I will pray for little granddaughter. She must be so frightened and confused right now. The following was sent to me in an email from a lady at my church who prayed with me prior to my having gamma knife treatment, maybe this can provide strength to you and your loved ones as well:

Here are a few things out of the book Fear Fighters:

"When God has asked me to do something that seems impossible for me, I have to preach to myself to defeat the fear and uncertainty that try to control me. I have to preach these three things to myself. They have become myfear fighters. I encourage you to make these declarations over your; situation.
1. Jesus is with me and He has all power.
Matt 28:18-20 “Lo, I am with you always, even to the end of the
age.” So, when you need to step out in faith for whatever challenge you
face, preach to yourself, “Jesus is with me, and He has all Power!” Don’t
back up. Don’t you tremble. Don’t be afraid! Fear not! I have all
power! Remember be like the 3 Hebrew boys in the fiery furnace…when
Nebuchadnezzar looked in and saw 4 men, the fourth was the Son of God. Dan
3:24-25
Remember God Has All Power over your situation… your situation doesn’t
have power over you!!!

2. God is at the bottom.

    • No matter how low the trials of life take me, God is at the bottom.
      When I feel I have hit rock bottom and that the challenges are too great to
      overcome, God is there. Moses was talking about how mighty and what
      miracles God did on the mountain top, but that God is with people not only
      when things are going right. Deut. 33:27 “The eternal God is your refuge,
      and underneath (bottom) are the everlasting arms” also translated…God’s
      arms are underneath you at the bottom. No matter how deep the valley you
      have to walk, God’s presence is deeper. Look for God at the bottom of your
      situation.

*3. God has given to everyone a measure of faith. God has dealt to each one a measure of faith Rom 12:3 There is; nothing that god will require of me for which I don’t have the faith. He
has given me the measure of faith I need to please Him. So whatever the; challenge I am facing, I preach to myself, I have the faith for this! Jesus was saying to Simon Peter "When Satan is attacking you, the most; important prayer that I can pray for you is that your faith will stand
through this process you are going through…that your faith will not fail! It just takes faith the size of a mustard seed to start your faith to grow

Dear heavenly Father,
I come to You to declare the truth that Jesus is with me, and He has all
power. I declare that You are the God at the bottom when I feel like life
is over and I cannot go on. I choose to believer that I have faith for
this…that You have given me a measure of faith to become an effective
fear fighter ---- and win! I submit my life completely to Your lordship Jesus. I choose to face off with my fears and learn to use Your supernatural fear fighters to live a life of victory over all fear. In Jesus Name, Amen.

> **
> 2 Tim 1:7 " For God has not given us a spirit of fear, but of power and of
> love and of a sound mind."

> **
Your grandaughter will feel your prayers, trust me on that and pray earnestly for her well being and healing. I pray God will bless her and keep his arms around her giving her the peace that he only and only he can give. She is not alone. Dawn-

Hi Ben. I haven’t joined this group because I’m not a parent of AVM. I’m the grandmother! My daughter is in the hospital all the time with my granddaughter so I was delegated to join the AVM Survivors Group!!

Ben Munoz said:

Ruth, are you part of the parents of AVM group yet: http://www.avmsurvivors.org/group/parentsofavm

That’s close enough. Parents/Grandparents of AVM…:slight_smile:

Ruth Pepperman said:

Hi Ben. I haven’t joined this group because I’m not a parent of AVM. I’m the grandmother! My daughter is in the hospital all the time with my granddaughter so I was delegated to join the AVM Survivors Group!!


Ben Munoz said:
Ruth, are you part of the parents of AVM group yet: http://www.avmsurvivors.org/group/parentsofavm

Thank you Dawn for your good wishes and your prayers. We are religious Jews and thus very connected with G-d - although not with Jesus. We have utmost faith that however hard the tests we are given, they are for the best and a part of G-d’s plan. We are praying all the time that Tal will have a complete recovery and we thank everyone on this list and throughout the world who is praying for Tal. She is definitely frightened but we are trying to reassure her. We see tiny improvements but we still have a long, long way to go.

Dawn said:

Hi Ruth,


I will pray for little granddaughter. She must be so frightened and confused right now. The following was sent to me in an email from a lady at my church who prayed with me prior to my having gamma knife treatment, maybe this can provide strength to you and your loved ones as well:



Here are a few things out of the book Fear Fighters:



"When God has asked me to do something that seems impossible for me, I have to preach to myself to defeat the fear and uncertainty that try to control me. I have to preach these three things to myself. They have become myfear fighters. I encourage you to make these declarations over your; situation.

1. Jesus is with me and He has all power.

Matt 28:18-20 “Lo, I am with you always, even to the end of the

age.” So, when you need to step out in faith for whatever challenge you

face, preach to yourself, “Jesus is with me, and He has all Power!” Don’t

back up. Don’t you tremble. Don’t be afraid! Fear not! I have all

power! Remember be like the 3 Hebrew boys in the fiery furnace…when

Nebuchadnezzar looked in and saw 4 men, the fourth was the Son of God. Dan

3:24-25

Remember God Has All Power over your situation… your situation doesn’t

have power over you!!!



2. God is at the bottom.

    • No matter how low the trials of life take me, God is at the bottom.

      When I feel I have hit rock bottom and that the challenges are too great to

      overcome, God is there. Moses was talking about how mighty and what

      miracles God did on the mountain top, but that God is with people not only

      when things are going right. Deut. 33:27 “The eternal God is your refuge,

      and underneath (bottom) are the everlasting arms” also translated…God’s

      arms are underneath you at the bottom. No matter how deep the valley you

      have to walk, God’s presence is deeper. Look for God at the bottom of your

      situation.



      *3. God has given to everyone a measure of faith. God has dealt to each one a measure of faith Rom 12:3 There is; nothing that god will require of me for which I don’t have the faith. He

      has given me the measure of faith I need to please Him. So whatever the; challenge I am facing, I preach to myself, I have the faith for this! Jesus was saying to Simon Peter "When Satan is attacking you, the most; important prayer that I can pray for you is that your faith will stand

      through this process you are going through…that your faith will not fail! It just takes faith the size of a mustard seed to start your faith to grow



      Dear heavenly Father,

      I come to You to declare the truth that Jesus is with me, and He has all

      power. I declare that You are the God at the bottom when I feel like life

      is over and I cannot go on. I choose to believer that I have faith for

      this…that You have given me a measure of faith to become an effective

      fear fighter ---- and win! I submit my life completely to Your lordship Jesus. I choose to face off with my fears and learn to use Your supernatural fear fighters to live a life of victory over all fear. In Jesus Name, Amen.


      > **

      > 2 Tim 1:7 " For God has not given us a spirit of fear, but of power and of

      > love and of a sound mind."


      > **

      Your grandaughter will feel your prayers, trust me on that and pray earnestly for her well being and healing. I pray God will bless her and keep his arms around her giving her the peace that he only and only he can give. She is not alone. Dawn-

The main thing I was told is that for children, if surgery is an option, that is the way to go. Research, research, research for the best doctor who performs specifically vascular brain malformation surgeries. Never give up hope, as bad as it seems, the brain and body are amazing with her age recovery maybe long, but very promising.

Thanks Janice. I’m thinking that they’ll probably go for surgery but we’re not sure at the moment. We have excellent neuro-surgeons at the Hadassah Hospital in Jerusalem. At the moment, however, we’re getting through the trauma of Tal having been taken off sedation and trying to get her speech back to normal. It’s a long journey. Baby steps!

Janice Brown (Andrew’s Mom) said:

The main thing I was told is that for children, if surgery is an option, that is the way to go. Research, research, research for the best doctor who performs specifically vascular brain malformation surgeries. Never give up hope, as bad as it seems, the brain and body are amazing with her age recovery maybe long, but very promising.

Dear Ruth,
My son was 12 when he had his AVM bleed. We endured many of the same things you have been going though with your granddaughter. My son had issues with speech and swallowing when he first woke up. He also had problems with recalling words. Like many others have mentioned here children can be amazing healers. Youth is on their side. I know how hard it is to wait to see these little improvements. Hang in there. I’ll be praying everything continues to improve. If you need us we are all right at your fingertips.
Take Care,
Marla

Hi Marla,

Thank G-d Tal is now much more clear with her speech. She’s not saying too much but when she does speak it’s clear. At the moment she’s fighting sleep. I think that she’s perhaps afraid to go to sleep and just dozes off for about 20 minutes at a time. We make sure that there’s a member of the family or close friend with her at all times. She’s due for an MRI on Sunday so we’ll see what happens.

Thanks so much for your reply,

Ruth

Marla Post said:

Dear Ruth,
My son was 12 when he had his AVM bleed. We endured many of the same things you have been going though with your granddaughter. My son had issues with speech and swallowing when he first woke up. He also had problems with recalling words. Like many others have mentioned here children can be amazing healers. Youth is on their side. I know how hard it is to wait to see these little improvements. Hang in there. I’ll be praying everything continues to improve. If you need us we are all right at your fingertips.

Take Care,

Marla