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Old 08-17-2010, 11:19 AM   #1
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Daughter just diagnosed with Periventricular Leukomalacia and Chiari Malformation

My daughter, who was born 11 weeks early, was just diagnosed with Periventricular Leukomalacia and a Chiari Malformation. She just had an MRI done to look for CP because her heel cords are tight and this is what we found out. Any information and help on these conditions will be greatly appreciated. My daughter is 20 months and I feel like these conditions should have been discovered when she was in the NICU for 55 days since we were told they have been there since birth.

 
Old 08-18-2010, 01:49 AM   #2
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Re: Daughter just diagnosed with Periventricular Leukomalacia and Chiari Malformation

Hi, My son is 2 1/2, he has spastic diaplegic CP. He was 7 weeks early and spent 4 weeks in nicu and on transitional care. He was oxygen starved before birth. This caused his Periventricular Leukomalacia. He had an MRI while he was still in nicu. They found two abnormalities, one they called a cavity and one they called a cyst.
The Periventricular Leukomalacia, as far as I'm lead to believe means brain damage due to oxygen starvation. The words represent or describe the perminant change in the brain after the damage. I don't fully understand them but I had them described as a way of describing the brain of a child with CP or another condition related to brain damage. The words are not the diagnosis, the CP is the diagnosis. the physical manafestation of the changes in their brains.

I don't know about the other one you mention but I hope this helps.

 
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Old 08-20-2010, 06:09 AM   #3
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Re: Daughter just diagnosed with Periventricular Leukomalacia and Chiari Malformation

Hi there,
With regards to Periventricular Leukomalacia (PVL for short) it's basically an injury to the brain caused by decreased blood flow or lack of oxygen. It would have been there either before during or after birth. I am surprised it was not picked up earlier as having had three prems myself I know that they do a series of 3 ultrasounds to the head to try to pick up these things. Prems are more susceptible to having PVL's and they are graded, one being a small lesion/scar. It is not a definitive diagnosis for CP but lots of people with CP have PVL's. Confusing but the grade of PVL does not neccesarily determine what degree of CP a person has either. Lots of factors come into it like grade of PVL and where it is. I know that my son who has mild/mod CP has a PVL of 1 on the left ventricle and they doctors have said it is unlikely that that caused his CP. More than likely it has affected his auditory processing skills. I am not familiar about Chiari malformation but hope this has helped.

Last edited by KarimsMUM; 08-20-2010 at 06:10 AM. Reason: add info

 
Old 08-23-2010, 01:49 AM   #4
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Re: Daughter just diagnosed with Periventricular Leukomalacia and Chiari Malformation

My daughter has PVL but was born full term after a very traumatic delivery for her. I wasn't delivering for long, but the midwives failed to moniter me with the Fetal Heart Monitering machine so they didn't have a clue how long she was in distress for I was in labour for 2hrs so from the point of admission where they put the moniter on me to check her (all was well) and then they took it off, so somewhere in that 2hours in between she got wrapped up in the cord and was starved of oxegen.They only discovered her distress when they did an episiotomy to help her head out - I was only pushing twenty minutes when she was delivered, black and non responsive from oxegen deprivation and she had to be resuscitated. However, according to the consultant.. this didnt cause her PVL ?
Somehow I don't think so, and I think they were covering their asses for medical negligence.

 
Old 08-23-2010, 03:04 AM   #5
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Re: Daughter just diagnosed with Periventricular Leukomalacia and Chiari Malformation

EddieVedderFan,
I don't see how the birth didn't cause the PVL. My son was getting decreased oxygen flow in the 20 hrs prior to birth and then not breathing for 3 minutes when he arrived, he was ventlated. The specialist health visitor said it was a combination of the two, more likely the 20hrs, but the brith certainly would have made matters worse. The consultant said the 20hrs was the damaging time, but they cannot say what damage the 3 minutes did. If you look at the stats, the higest percentage of brain damage in under 2 yr olds happens before birth. Then a medium amount happens during birth and then a very tiny amount get brain damage after birth.

I think my thoughts as regards support on this matter, don't worry about the PVL, worry about the physio and treatment. The CP itself manafested is what needs to be concentrated on. Its good to do research and find out what it is but then better to move on.

If you can't move on and you feel you need to find out more there are companys out there who will help you look into medical negligence and most of them will do it no win no fee.

 
Old 08-23-2010, 04:12 AM   #6
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Re: Daughter just diagnosed with Periventricular Leukomalacia and Chiari Malformation

At the moment the whole medical negligence thing is on the backburner. We are taking Kayley to St Louis in October for Selective Dorsal Rhizotomy and we are concentrating on making her stronger and fighting the effects of the Diplegia as best we can.
Thanks for taking the time to reply. There is no doubt in my mind that her CP was caused by the oxegen deprivation as she was strangled by the cord for so long but law suits take money that we don't have!

 
Old 09-10-2010, 02:06 PM   #7
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Re: Daughter just diagnosed with Periventricular Leukomalacia and Chiari Malformation

My daughter was diagnosed with PVL during her stay in the NICU (she was 11 weeks premature). She has quadriplegia CP and is now seventeen years old. We started her in PT and OT right away. She has undergone several surgeries and about six years ago we went to PA to meet the doctor who invented the Baclofen pump- wonderful man! My best advice is to do your own research. I allowed a doctor to convince me my daughter needed a hip replacement at age 3- he terrified me. I was a 20-year old mother and simply heard the words "dislocated hip and surgery needed." I didn't realize there was no need for the surgery, at least not at that point, because she was not mobile nor in any pain. Be your daughters very best advocate and don't be afraid to change doctors as often as you need to for her well-being. We have had several neurologists because I begin to feel we were just a number or did not agree with a course of treatment.

Let me know if you ever want to chat. My thoughts are with you!

 
Old 01-22-2011, 06:18 AM   #8
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Re: Daughter just diagnosed with Periventricular Leukomalacia and Chiari Malformation

Quote:
Originally Posted by Tamica View Post
She has undergone several surgeries and about six years ago we went to PA to meet the doctor who invented the Baclofen pump- wonderful man!
I couldn't agree more!!! The baclofen pump my son had changed all of our lives!

(p.s. the ITB inventor is in Madison, WI now...where my son was followed for 15 years, with the exception of his ITB surgeries in Pittsburgh)

 
Old 04-13-2011, 08:55 AM   #9
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Re: Daughter just diagnosed with Periventricular Leukomalacia and Chiari Malformation

Our daughter just had a MRI (headaches and dizziness) to check for hydrocephalus. It did not show hydrocephalus, however it did show findings of "multiple small periventricle cysts". We adopted her when she was four, she is now ten. She has several issues...Intellectual Disability, hip joints are backwards and severe knee contractions (webbing in the back of her knees). We do not suspect CP, but maybe another disorder...still searching! If anyone has any thoughts, please let me know.

 
Old 04-26-2011, 09:35 PM   #10
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Re: Daughter just diagnosed with Periventricular Leukomalacia and Chiari Malformation

Quote:
Originally Posted by Savannahsmom13 View Post
My daughter, who was born 11 weeks early, was just diagnosed with Periventricular Leukomalacia and a Chiari Malformation. She just had an MRI done to look for CP because her heel cords are tight and this is what we found out. Any information and help on these conditions will be greatly appreciated. My daughter is 20 months and I feel like these conditions should have been discovered when she was in the NICU for 55 days since we were told they have been there since birth.
HELLO MY NAME IS NICOLE I KNOW EACTLEY HOW YOU ARE FEELING ? FIRST OF ALL YES YOU SHOLUD HAVE KNOWN THAT YOUR DAUGHTER HAD PVL BEFOR SHE LEFT THE NICU BECAUSE MY SON HAS PVL AND KNOW CP AND I FOUND OUT IN THE NICU WELL LET ME TELL YOU SOME ADVICE GET HER IN THEREPY NOW NOW I CANT EXPLAIN HOW IMPORTANT THAT IS WELL I HAVE SO MUCH I WANT TO TELL YOU BUT MY SON DOESNT LET ME HAVE ALOT OF FREE TIME IF YOU NEED TO TALK TO ANYONE OR WOULD LIKE TO KNOW MORE ABOUT IT CALL ME PLEASE PLEASE 540-313-2198 LOTS OF LOVE NICOLE

Last edited by matthew2008; 04-26-2011 at 09:42 PM.

 
Old 04-26-2011, 09:41 PM   #11
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Re: Daughter just diagnosed with Periventricular Leukomalacia and Chiari Malformation

Hello eveyone my name is nicole and i am new to this but i have a 2 yr old son with pvl and cp its mainly in his legs but i have read and done alot of research myself just looking for some support and talking to other parents who know what iam going through please reply it will be much appraciated sorry my spelling stinks

 
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