Intro and PVL question

kristenavt · March 2013

Hi Mamas! I recently delivered my daughter at 27w6d. We are currently riding the NICU roller coaster and I'm already ready for the ride to be OVER! Anyways, my daughter may have a small PVL (docs are still not convinced its actual PVL based on an atypical presentation) but I am preparing for the potential implications that accompany the diagnosis. She, thankfully, does not have IVH and has been doing quite well thus far, all things considered. Either way, I'm curious if any of your LOs have been diagnosed with PVL and, if so, are you dealing with any symptoms as a result? It's my understanding that it is very hard to predict if, or how severe, her motor function will be affected in the future. Any insight on what may be coming up from those who are/were in a similar spot would be helpful. TIA

thishappyhouse · March 2013

How did they diagnose it? MRI? Ultrasound? I ask because the docs kept coming back to PVL for my daughter because of inconclusive ultrasound and clinical signs until they finally did a MRI which ruled it out.

JennZK · March 2013

My 26 weeker has a bilateral PVL and was diagnosed when he was about 2 months old. They found it when they did the 2nd head ultrasound. So far we haven't had any signs that it is effecting his development. He's 6 mo now 3 adjusted and is between 3 and 4 months developmentally. All his doctors say he's perfect and doing everything he should be. PT comes once a month just as a precaution and she has no worries. What we were told is the earlier it happens almost the better because the brain can reteach itself and move the information from that area of the brain somewhere else. It does worry me what the outcome could be and it's always in the back of my mind, but we just take everything day by day and that's all you can do. I wish you the best of luck on your journey. If you find out any interesting PVL info please share.

DrRx · March 2013

Congratulations and welcome! I'm sorry that I don't have any advice on PVL.

Pips09 · March 2013

No advice, but congrats on the birth of your daughter!

kristenavt · March 2013

thishappyhouse:
How did they diagnose it? MRI? Ultrasound? I ask because the docs kept coming back to PVL for my daughter because of inconclusive ultrasound and clinical signs until they finally did a MRI which ruled it out.

They caught it on her first ultrasound, she will eventually get an MRI when she's older (closer to discharge) but for now they're just monitoring it to see if it gets bigger. The reason they're not quite sure if its PVL is because it usually doesn't present until some time after the "event" (which, if I understand correctly) is usually birth. Since it showed on her first ultrasound after birth, it means the "event" happened way before she was born..meaning even if she were a term baby, it would have been there. Anyways, we've gone from "this is most likely PVL" to "this could be just a variant of normal" to "well...it may still be PVL". My husband and I are at peace with the possibility of PVL. I'm actually a PT so I feel blessed to have some insight on motor dysfunction...but I'm all for being as educated as I can on what others have experienced. Do you know why MRI ruled PVL out? Did she have cystic structures on ultrasound?

thishappyhouse · March 2013

kristenavt:
thishappyhouse:
How did they diagnose it? MRI? Ultrasound? I ask because the docs kept coming back to PVL for my daughter because of inconclusive ultrasound and clinical signs until they finally did a MRI which ruled it out.

They caught it on her first ultrasound, she will eventually get an MRI when she's older (closer to discharge) but for now they're just monitoring it to see if it gets bigger. The reason they're not quite sure if its PVL is because it usually doesn't present until some time after the "event" (which, if I understand correctly) is usually birth. Since it showed on her first ultrasound after birth, it means the "event" happened way before she was born..meaning even if she were a term baby, it would have been there. Anyways, we've gone from "this is most likely PVL" to "this could be just a variant of normal" to "well...it may still be PVL". My husband and I are at peace with the possibility of PVL. I'm actually a PT so I feel blessed to have some insight on motor dysfunction...but I'm all for being as educated as I can on what others have experienced. Do you know why MRI ruled PVL out? Did she have cystic structures on ultrasound?

In the end they determined what was inconclusive on the ultrasound was probably 2 choroid plexus cysts. I guess they were positioned in funny way or hard to see or who knows maybe just a bad technician which is part of why they pushed for an MRI. I think the bigger reason is that they had no other explaination for her depressed neurological state (she was super sleepy, agitated, and a poor eater). I really just think they wanted to label it something. The MRI at discharge showed no cysts at all.

I hope you get some clarity at the MRI. Like you said and based on my knowledge of PVL it is pretty surprising to have PVL show up on her first set of ultrasounds.

How is she doing otherwise? I hope the rest of your stay is as short and uncomplicated as possible.

kristenavt · March 2013

thishappyhouse:
kristenavt:
thishappyhouse:
How did they diagnose it? MRI? Ultrasound? I ask because the docs kept coming back to PVL for my daughter because of inconclusive ultrasound and clinical signs until they finally did a MRI which ruled it out.

They caught it on her first ultrasound, she will eventually get an MRI when she's older (closer to discharge) but for now they're just monitoring it to see if it gets bigger. The reason they're not quite sure if its PVL is because it usually doesn't present until some time after the "event" (which, if I understand correctly) is usually birth. Since it showed on her first ultrasound after birth, it means the "event" happened way before she was born..meaning even if she were a term baby, it would have been there. Anyways, we've gone from "this is most likely PVL" to "this could be just a variant of normal" to "well...it may still be PVL". My husband and I are at peace with the possibility of PVL. I'm actually a PT so I feel blessed to have some insight on motor dysfunction...but I'm all for being as educated as I can on what others have experienced. Do you know why MRI ruled PVL out? Did she have cystic structures on ultrasound?
In the end they determined what was inconclusive on the ultrasound was probably 2 choroid plexus cysts. I guess they were positioned in funny way or hard to see or who knows maybe just a bad technician which is part of why they pushed for an MRI. I think the bigger reason is that they had no other explaination for her depressed neurological state (she was super sleepy, agitated, and a poor eater). I really just think they wanted to label it something. The MRI at discharge showed no cysts at all.
I hope you get some clarity at the MRI. Like you said and based on my knowledge of PVL it is pretty surprising to have PVL show up on her first set of ultrasounds.
How is she doing otherwise? I hope the rest of your stay is as short and uncomplicated as possible.

So far she is a trooper. She was actually transitioned from vent to high flow cannula within a week. We had a setback yesterday that required re-intubation..but she seems to have recovered nicely and we're already looking at extubation. She is still very small so the road ahead is long, but we are thankful she seems to have avoided a lot of major early complications. Thanks for asking!!

jbranden12 · March 2013

Hi and welcome to the world of micro preemies! We are still in the NICU, but my daughter has a grade 4 IVH on the right with PVL and porencephaly ant grade 2 on the right with non progressive hydrocephalus. It was discovered by ultrasound but as soon as she could go on HFNC we did an MRI to get a better idea of the extent of damage. You are right that it is very hard, if not impossible to predict how the damage will affect our babies. Our neuro said that our Anna may never walk, talk, or eat on her own, or she could be the clumsiest kid on the soccer team. We are hoping for the latter. We already see PT and OT weekly and do baby exercises to help stretch and strengthen her muscles.

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