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Parents of AVM

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Ruth Pepperman's Discussions

Feedback please on young children with AVM
23 Replies

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…Continue

Started this discussion. Last reply by Liesa Jan 7, 2010.

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Gifts Received (3)

Red Ribbon From Suzy E Red Ribbon From shelly clarke-harvey Red Ribbon From Teresa Whobrey

Ruth Pepperman's Page

Latest Activity

Ruth Pepperman commented on Ben Munoz's group 'Parents of AVM'

Don't feel bad. The consultant who saved his life probably doesn't even have a clue that you have been having problems. You're a victim of the "dragon at the gate" who treats all patients like they're just numbers.…

Feb 6

Ruth Pepperman commented on Ben Munoz's group 'Parents of AVM'

I hope this other doc calls you back on Monday. Ask her to push the other hospital for an update. I agree all the way with Erin Lyn. Keep us posted.

Feb 4

Ruth Pepperman commented on Ben Munoz's group 'Parents of AVM'

hch - you say: "i have even thought about ringing his paed at another hospital." Can you do this under the terms of the National Health? If so, then go for it. You need a sympathetic doctor who can explain things to you. I'm assuming…

Feb 3

Ruth Pepperman commented on Ben Munoz's group 'Parents of AVM'

I bet the neighbours loved you for taking a baseball bat to a statue at 4 in the morning!!! :-) Go for it!!

Dec 21, 2011

Ruth Pepperman commented on Ben Munoz's group 'Parents of AVM'

Rosemary - check things out with the docs and with a pediatric psychiatrist. My granddaughter (around the same age as your son) had an AVM and resultant embo and craniotomy. Physically she recovered apart from slight peripheral vision problems.…

Dec 20, 2011

Ruth Pepperman commented on Ben Munoz's group 'Parents of AVM'

Praying for a good result for Ethan's surgery Jason. Keep smiling!!

Dec 14, 2011

Ruth Pepperman commented on Ben Munoz's group 'Parents of AVM'

I'm so sorry to hear about Taitlyn. I find it difficult to find words to try and console you. May G-d go with you in this tragic time.

Nov 17, 2011

Ruth Pepperman commented on Ben Munoz's group 'Parents of AVM'

Mickie - sorry to hear your news. Please, please try not to feel guilty. We all have to make decisions about important things in our lives and we do so based on the information that we have at the time. You made the decision to go with the radio…

Nov 7, 2011

Ruth Pepperman commented on Ben Munoz's group 'Parents of AVM'

So happy to hear your news Mickie. May Nico go on to have a fully healthy life.

Oct 1, 2011

Ruth Pepperman replied to Rich's discussion 'Aphasia - Trade secrets'

This was very interesting Rich. I don't have the problem but I would suggest EVERYONE ask for e-mail confirmation of EVERYTHING. Tell the other party that you like to have everything in print so that you can always refer back to it. This is a…

Oct 1, 2011

Ruth Pepperman commented on Ben Munoz's group 'Parents of AVM'

Well Erin - it sounds like you got at least one sensible doctor along your journey!! :-) Tina - Erin is right - better safe than sorry. Get in touch with the surgeon.

Sep 19, 2011

Ruth Pepperman commented on Ben Munoz's group 'Parents of AVM'

So sorry that you're having such a hard time with the doctors Erin. I really hope that you find a good one soon. There are caring doctors out there. Best of luck.

Sep 12, 2011

Ruth Pepperman commented on Ben Munoz's group 'Parents of AVM'

Very very happy to hear that Kelly!!!

Sep 3, 2011

Ruth Pepperman commented on Ben Munoz's group 'Parents of AVM'

Hi Kelly. Very happy to hear that the surgery went well. I hope that the surgeon is right in saying that he got it all this time. Be well. Ruth

Sep 2, 2011

Ruth Pepperman commented on Ben Munoz's group 'Parents of AVM'

Kelly - I'll be praying for Ryan and all of you.

Sep 1, 2011

Ruth Pepperman commented on Ben Munoz's group 'Parents of AVM'

It must be so hard for you Lisa. Somehow you've just got to hand everything over to the Almighty and let Him deal with things. I have Erin and all our kids in my prayers.

Aug 27, 2011

Profile Information

Are you an AVM survivor, a relative, a friend, or a medical professional? (Required): Relative

When did the AVM bleed or, if there was no bleed, when was the AVM first discovered?: December 25, 2009

What is the status of the AVM?: Active

Please share your AVM experience. (Discovery, symptoms, treatment, recovery): My 6 year old granddaughter, Tal, suddenly complained of a severe headache and then vomited violently several times. She then fainted (or passed out in some other way). The paramedic who came with the ambulance saw that her eyes were not in control and that she was non-responsive. He made the decision to take her to the Haddassah Hospital, which is world-renowned for treatment of neurological and brain problems. After a number of CT scans she had a siphon put in to drain blood from the brain cavity and was kept under sedation. Yesterday evening she underwent an angiogram and is still under sedation. The doctors were talking of keeping her sedated for 48 hours but now say that if the pressure remains low they may wake her tomorrow and then decide the next step. We are praying that her pressure remains low, that her brain should not have been damaged by this and that she not need an operation.

Would you like to recommend a surgeon, therapist, or a hospital?: Haddassah Hospital, Ein Karem, Jerusalem, Israel

Comment Wall (18 comments)

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At 10:15am on August 22, 2011, Suzy E gave Ruth Pepperman a gift…: Red Ribbon
Happy Birthday!!!
From the Gift Store

At 1:47pm on November 19, 2010, Rachel D. said…: Thank you . I hope all turns out well with the angio. I'll be praying for your gandaughter

At 2:28pm on November 06, 2010, shelly clarke-harvey gave Ruth Pepperman a gift…: Red Ribbon
thank you Ruth
From the Gift Store

At 2:53pm on July 6, 2010, Debbie Schurr said…: Thank you Ruth. I'm glad I found this group. Wish I had found it sooner, but better late than never. Dillon who is now 11 is doing very well. We had his follow-up with the Radiologist last week for a neuro check. He looked good. We won't know anything until his MRI/MRA in December. 6 months post radiosurgery. I hope your grandaughter is doing well.

At 7:09pm on May 25, 2010, Teresa Whobrey gave Ruth Pepperman a gift…: Red Ribbon
Red Ribbon
From the Gift Store

At 7:54am on May 10, 2010, Deb C. said…: Praying for Tal, too.

Take care,

Debbie

At 7:11pm on May 8, 2010, Erica said…: Dear Ruth, my son was 7 years-old when he had a bleed and first craniotomy. I know how hard it is for the all family. I will pray for your grandaughter. Everthing will be fine soon and this nightmare will be over. Lost of love. Erica

At 2:08pm on May 4, 2010, Ruth Pepperman said…: Thanks everyone for all the good wishes and prayers. I just heard that they have now brought the craniotomy forward and it's scheduled to be on Monday 10th May. I'll let you all know how it goes.

At 1:36pm on May 4, 2010, Lynn Lederer said…: Hi Ruth,
Well done to you all. Continuing to wish lots of light, love and good health.
The Leds

At 1:10pm on May 4, 2010, Susan Troop (Lindsey's Mom) said…: Glad to hear things went well with Tal's embo. We are definitely praying as the "big day" approaches. Please keep us posted!