Just wondering if anyone else had their NICU tell them that their babies head ultrasounds came back abnormal, indicating that they have PVL? They told us that all 3 of ours have the classic signs of PVL, with Mariah's looking the worst and Savannah's looking the best. I know it's WAY too early to be worried, but there is something about Mariah that is much more noticably different from her siblings. Even my Mother, Dh, and others notice it. She is always quite tense -- she doesn't curl into you very easily (you know, how most newborns do), she has always been the fussiest of the bunch, and just generally seems stressed out, tense, spasmatic, etc. By spasmatic, I mean that she flings her arms and legs out like she is having spasms. I hope i'm making sense. My mind is blurry today. I am just worried about my sweet little girl and want to give her whatever I can to make her feel better. We have a well-baby check-up next week and I plan on having the Dr take a look at her. She mentioned something about sending her to a Pediatric Neuorologist. Thanks for any advice/words of wisdom/encouragement!!

Melanie, SAHM to:

Andrew (adopted) 12/2/94
Jeremy 7/25/02
Mariah, Ethan, & Savannah 4/14/04
Born @ 30 weeks-
3lbs, 5oz. 3lb, 3oz. & 3lb's.

Hi,

I know I've typed to you before. I'm sure you're concerned about Mariah. Lauren had a grade IV/IV brain bleed and noticable PVL before she left the NICU. Her bleed was quite large and they gave us a 90-100% of Lauren having cerebral palsy. We noticed things were different from the very beginning of being home. She was slower to track objects. Oddly on time to hold her head and her left arm never unclenched. I was amazed she rolled over at 4 months actual. She was stiffening those arms up and just plopped right over. I should have realized then but I just wanted to be proud of her at the moment. She arched her back, flung her head back and it was darn near impossible to hold her. When she started reaching for toys it was only with her right hand/arm.

Since she was at great risk we had therapists coming to the house from the day we came home from the NICU. We talked about her warning signs and they gave me daily exercises to help keep her muscles as loose as possible. They were rigorous (probably 2 hours throughout the day the first year) but I truly believd they helped a lot. We were officially diagnosed with CP affecting 3 limbs at 16 months. By 10 months we all knew it but it wasn't going to hurt anything to wait until the specialist appointment to get the official title.

Lauren is a beautiful 33 month old who can walk and sing and play with her sister and brothers. Her milestones were rolling over (for real)-13mo, sitting in position- 18mo, crawling on fours-20mo, getting into sit 22mo, knee walking-23mo, walking-28mo.

Hugs,
Gina

Our Olivia has PVL & CP. She too had Grade IV/IV brain bleeds at birth. She has had 2 MRI's since birth, and she definately has PVL. The good thing is she is doing really well. She was a little behind her brother in things such as sitting up, and pushing up on extended arms on tummy time, but that is due to the fact she has had 2 g-tube surgeries and was not allowed to do tummy time for 3 months, once she was OK'ed by the doctor to do it again she caught up quickly. She is ahead of her brother verbally, and is much better at problem solving than he is. She is also alot calmer and easygoing. So far she seems to be tracking along normally for her adjusted age. She does have some feeding issues, thus the g-tube, but she likes to try to feed herself, she just doesn't know what to do with the food once it is in her mouth because she has always had some kind of feeding tube since birth. We are taking her to Kennedy Krieger next month, and have alot of hope she will get the help she needs to learn to eat by mouth like she seems to want to.

I know at first PVL can sound really scary, but like CP the effects can be of such a broad span and variety. Knowing about it and working through issues as they come up and making sure she is getting the assistance she needs is the key.


http://lilypie.com>
Vicki & Pam Lee
Moms of -

Spencer Ryan - Baby B
Olivia Suzanne - Baby C
Born - 10/11/03 32w2d

Our Little Angels
^sweet unknown boy or girl - Baby D^ passed away May 2003
^Julian Willem - Baby A^ passed away 08/25/03 25w4d born 10/11/03 with his brother and sister

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Gina & Vicki,

Thanks for your replies. It is quite encouraging to read about the milestones your children have reached! We have EI working with the girls right now, Ethan did not qualify, but the PT said she'd keep a "left eye" on him while working with the girls. They will start out coming twice each month, beginning in Sept. I guess we just have to wait and see... I know it's too early to get all worried about anything, and really, I shouldn't be worrying so much. Things could always be worse. Again, thanks for your responses. I appreciate it!

Melanie, SAHM to:

Andrew (adopted) 12/2/94
Jeremy 7/25/02
Mariah, Ethan, & Savannah 4/14/04
Born @ 30 weeks-
3lbs, 5oz. 3lb, 3oz. & 3lb's.

Melanie, I was told that about my DD,Abby, when she was inNICU. AT 6 weeks past her due date she was stillinteh step-down unit due to feeding issues and tehy did a follow up MRI. The dev. pedi. tried to tell me Abby had another brain bleed- a grade 1. I thought that was ridiculous when she's now term. Then the DR tried to tell me it could be PVL and to expect my daughter to "be retarded." I almost choked on my tongue when she said that!
Long story short, Abby is now 4 1/2 yrs old and she is neither retarded nor does she have PVL. She had been evaluated by a neurologist when she was 2 1/2 yrs old(for a speech delay) and he noticed she "postured" somewhat when running-which has now stopped- but other than that she is fine.
As for the curling and not wanting to be held-tenseness,spasms, etc. Abby was very much a non-cuddly baby. After eating she would scream and writhe and do what she could to not be held. She would arch so much she would turn herself into the letter 'C'. THAT was severe reflux. Once she was on meds for it, things got better. Has your daughter been evaluated or diagnosed with reflux. Virtually ALL babies, full-term or not, have reflux. It's just a matter of degrees.HTH

Korrie~
^i^B/G/G 24 w 3d,1/17/00
B 10/31/01
B 1/27/03

<a href="http://lilypie.com"><img src="" alt="Lilypie Kids birthday Ticker" border="0" /></a>

Very intersting. I guess I'm a little of a sceptic myself, especially since my twin brother was diagnosed with CP at a young age and they told my mom he might never talk. The Dr's were totally wrong, and his CP ended up being VERY mild. So I've learned not to take every word that comes out of a dr's mouth too seriously. After all, they are not God.

We have Mariah on Zantac for the reflux and Levsin drops for the colic. I can tell that the Zantac has helped out with the spitting/throwing up, but she is still VERY fussy and acts like she's in pain. Tonight it took me 2 hours to get her to calm down! Many times she just cries herself to sleep. I feel like there is nothing I can do. She will see the Dr again this Thursday and I am hoping they will have some new ideas.

Melanie, SAHM to:

Andrew (adopted) 12/2/94
Jeremy 7/25/02
Mariah, Ethan, & Savannah 4/14/04
Born @ 30 weeks-
3lbs, 5oz. 3lb, 3oz. & 3lb's.

P.S. -- I forgot to say, Owen did the same thing Mariah is doing with the fussiness and sreaming at bedtime. We did some logs, and he literally hollered for most of his awake hours. I think his brain issues made stimuli processing much harder for him, and at the end of the day, he had to download a bunch of junk. A quick word of encouragement: He eventually got much, much, much, much happier, and I'm sure Mariah will, too. A few things that helped us: We started making absolutely sure he got good naps during the day, because being overtired significantly exacerbated his sensitivity. We put up a port-a-crib in the guest room, made the mattress nice and cumfy with a crib sheet and blanket, hung a room-darkening shade and put in a white-noise fan. He still takes naps there. We also tried infant massage, although we had to experiment to find parts of his body that didn't recoil from the pressure. And it had to be a firm touch, or it felt like an excrutiating tickle to him. We also would put him in a blanket hammock, and my husband and I would swing him gently from side to side. That was like some kind of calming drug for him. Finally, we made sure that all bottle times were nice and quiet and calm, and the hour or so before bedtime was as calm and quiet as we could make it - no TV, no visitors, etc.

Good luck!


Elizabeth
Mom of a 7-year-old boy and bbb, born 5/23/03 at 30 weeks.

Elizabeth
Mom of a 7-year-old boy and bbb, born 5/23/03 at 30 weeks

That reminded me that Abby was also "fisted." Her therapists and the developmental DR kept pointing it out. She kept her hands balled into fists well past her first birthday. My Mom said I did the same thing as a baby and she had pictures to prove it. You might want to talk to your parents and in-laws and find out what you and your husband were like as babies. Were either of you colicky, that type of thing? My ex-DH didn't talk until he was 3 years old and my Mom said I was talking by the time I was 2-a bit delayed but not much. The neurologist, in fact, said that was probably why Abby wasn't
talking; 1. it's genetic b/c both parents were late talkers and 2. environmental b/c she is a multiple. She didn't have to communicate b/c I anticipated her needs or attended to them as part of an assebly line.If one child neede a diaper change, they both got it, if someone was hungry they both got fed,etc.
Abby was also (and still is) a lousy sleeper. She would have trouble falling asleep and once she woke during the night she played and made noise for HOURS until she dozed off again. And her naps are still hit or miss! It's 9:30 here now and I think she may have just fallen asleep- but by 2ish, she will be awake and in my bed....*sigh* still a lousy sleeper 4 1/2 years later! But that can be attributed to her having ADHD. Again, there's a genetic link-I ahve ADHD too. I realize your baby is still very young but you might want to think about that as a possability too. Especially if anyone in your families has ADHD. She's also sensitive to loud noises.
Just some more thoughts. I hope it helps. Let us know what the DR says! God Bless,Korrie

Korrie~
^i^B/G/G 24 w 3d,1/17/00
B 10/31/01
B 1/27/03

<a href="http://lilypie.com"><img src="" alt="Lilypie Kids birthday Ticker" border="0" /></a>

Hey Melanie,

I WISH someone had told us earlier that my son might have some brain issues. My triplet boys were born in May of 2003 at 30 weeks. Owen had lots of issues throughout his hospital stay. When he got home, he displayed all the symptoms you describe. Crying all the time. Stressed out. Sensitive to noise and activity. Strange body movements (constantly balled-up fists, leg spasms, etc.). We worked with Early Intervention and our pediatrician and pressed our concerns, but everyone told us to wait, that it might just be normal developmental delays of prematurity. Our parental gut told us what yours is telling you - something's not right. After a year, the person who finally got our ball rolling was his pediatric opthalmologist, who concluded that Owen's chronic eye problems were probably brain related and ordered an MRI. That's when we got the PVL diagnosis, and it was the first time we'd ever heard of the condition.

To be fair, my husband and I didn't press terribly hard against our therapists and pediatrician, because we were desperate for him to be just delayed or just colicky - to snap out of it at some point. In hindsight, though, I wish someone had been leading us a little more firmly toward the brain-damage thing, because it would've relieved months of stress and not-knowing. It's not that the diagnosis isn't a punch in the stomach, it's just better than worried ignorance.

I think it's good that your children's doctor is talking to you about it now, and if you haven't already decided to do so, I'd heartily encourage you to see that neurologist. A diagnosis can help you put the fear behind and start working on action. And I TOTALLY agree with everyone who's said you can't listen to the docs who try to tell you how limited your child(ren) is/are going to be. Owen's neurologist told us he has catastrophic brain damage and probably will have seizures and won't be able to walk, might be retarded. But my child is rolling all over the place, working hard to sit up by himself, feeding himself finger foods in his high chair, communicating with us visibly...we have tons of hope for him.

If you wind up with a PVL/CP diagnosis and need anyone to talk to, holler!


Elizabeth
Mom of a 7-year-old boy and bbb, born 5/23/03 at 30 weeks.

Elizabeth
Mom of a 7-year-old boy and bbb, born 5/23/03 at 30 weeks

Thanks for sharing that with me. Well, all 3 of our babies were diagnosed with PVL already. It's just the CP diagnosis we wait for. Like I said in my 1st post, Mariah's head ultrasound looked the worst. Many white spots, which the neonatologist indicated dead brain cells. Like you, I just have this gut feeling that she has CP. I can tell by her movements, behavior, etc. etc....

Anyhow, I will definitely keep you guys posted. We are going in to see our Dr tomorrow for their 4 month well-baby visit. At this point we will discuss seeing a Neurologist. Should I request that all 3 be seen by the neurologist, or just Mariah since she's the one that we visibly notice having problems/concerning behavior?

Thanks so much for the support, ladies!!

Melanie, SAHM to:

Andrew (adopted) 12/2/94
Jeremy 7/25/02
Mariah, Ethan, & Savannah 4/14/04
Born @ 30 weeks-
3lbs, 5oz. 3lb, 3oz. & 3lb's.

Can any of you tell me exactly what causes PVL in the 1st place? I know that it is damage to the brain - but is that in-utero or during the actual birth itself? This has always confused me. I've also heard that multiples are at a higher risk of having PVL than other preemies (singletons) born at the same gestational age - have you heard this also, and if so, is this true?

Thanks!

Melanie, SAHM to:

Andrew (adopted) 12/2/94
Jeremy 7/25/02
Mariah, Ethan, & Savannah 4/14/04
Born @ 30 weeks-
3lbs, 5oz. 3lb, 3oz. & 3lb's.

I may be wrong, but it's my understanding that PVL is happens after birth. It's due to severe brain bleeds- the accumulated blood in the ventricles saturates the surrounding brain tissue and destroys it. And I think the ventricles get stretched out of shape sort of. Like the brain kind of mushes in areas like oatmeal? Sorry, hope that wasn't too graphic or inane! Just how I could think to describe it. It wouldn't hurt to get all 3 of your babies evaluated.

Korrie~
^i^B/G/G 24 w 3d,1/17/00
B 10/31/01
B 1/27/03

<a href="http://lilypie.com"><img src="" alt="Lilypie Kids birthday Ticker" border="0" /></a>

Korrie is right, a lot of PVL is caused by brain bleeds. Once blood goes into the brain it "kills" the tissue that is there. But PVL can also happen in kids that don't have brain bleeds. I have a friend with twins who left NICU with clean bills of health. One has pretty severe CP and a MRI shows pretty severe PVL.

Lori --
Mom to Zac (9/91) and triplets Noah, Karissa & Jazmine (5/98 at 27 weeks)

Lori --
Mom to Zac (9/91) and triplets Noah, Karissa & Jazmine (5/98 at 27 weeks)

Did some searching last night & I found this to be very helpful in understanding PVL, just thought I'd share it with any of y'all who might be interested:


Periventricular Leukomalacia


What is periventricular leukomalacia (PVL)?


"Peri" means near; "ventricular" refers to the ventricles or fluid spaces of the brain, "leukomalacia" is softening of the white matter of the brain. Periventricular leukomalacia is softening of the brain near the ventricles. The softening occurs because brain tissue in this area has died.


Why do premature babies get PVL?


PVL is thought to be due to too little blood flow to that part of the brain either when the baby is a fetus in the womb, at delivery, or after delivery during the first days of life. Usually doctors do not know exactly when this occurred.


How will my doctors know if my baby has PVL?


Most often the baby has no signs or symptoms. PVL is diagnosed by a test called a cranial (head) ultrasound. It is a painless test, performed at the bedside, in which sound waves are used to give a picture of the baby's brain. Because PVL usually takes a few weeks to become detectable, babies at risk for PVL are tested 4 to 8 weeks after birth. Sometimes this test will first show a suspicious area which may or may not turn out to be PVL. With serial tests it will become more clear.


How is PVL treated?


There is no specific treatment for PVL.


Can my baby have both IVH (intraventricular hemorrhage) and PVL?


Yes, it is common for babies who have grade III or IV IVH to also have areas of PVL.


What are the complications of PVL?


Because PVL results from loss of brain tissue, babies with PVL are at very high risk for abnormal development later on. The more severe the PVL, the more likely a baby will develop mental or motor (movement) problems. Even babies who just had suspicious areas need to have their development followed closely.


How do I know if my baby will be abnormal because of PVL?


This can be determined only over time. Near the time of discharge, the baby may be less responsive to his/her environment or to peoples' faces than babies without PVL. Serious abnormalities appear gradually. These may include:


motor (movement) problems - legs often worse than arms


tight or stiff muscles

holding legs straight and crossed most of the time

difficulty sitting

slow to crawl, stand, or walk or inability to do these

abnormal crawling, toe walking

frequent arching of the back (not just when angry or at play)



slow mental development


does not listen to your voice by age 3-4 months after hospital discharge

does not make different sounds by 8-9 months after discharge

doesn't seem to understand or say any words by one year after discharge



seizures - not common


poor hearing or deafness


poor vision


Less serious problems appear more slowly, are more difficult to detect, and may not be obvious until preschool or grade school. These can include:


poor coordination or balance

specific learning disabilities (math or reading)

very short attention span

behavioral problems

difficulty with activities that require coordination of the eyes and hands; for example, catching a ball or copying a simple drawing



It is very important for babies who have PVL to receive close follow-up of their development. If your baby has PVL, s/he may be eligible for a developmental intervention program, please visit Family Village . Anytime in the future if you are concerned about something that you think might be abnormal, have it checked out by your baby's doctor.

Melanie, SAHM to:

Andrew (adopted) 12/2/94
Jeremy 7/25/02
Mariah, Ethan, & Savannah 4/14/04
Born @ 30 weeks-
3lbs, 5oz. 3lb, 3oz. & 3lb's.

Melanie,

I have three boys born close to your's (4/24/04) and two of them have also been diagnosed with PVL and it is supposively very extensive.

The two that have the PVL definately act differently than my other son, but you can drive yourself crazy evaluating every little action, as you probably already know.

They are getting early intervention 1x a week. They have been seen a few times by a ped neurologist, but they don't seem to tell you much. From all I have learned from other parents with kids with PVL is that you have to wait and see how they develop. There are kids with severe cysts that develop fine and ones with hardly any damage that have severe problems. My neurologist told me there is nothing to do, just wait and see. I disagree with this! There are many treatment therapies out there that are worth looking into and trying if they can possibly help. I am currently taking my boys for hyperbaric oxygen therapy.

My Zakary has terrible "reflux" supposively, but is constantly arching his back and stiffining. When I took him to the GI doctor today, she said I should see the neurologist because it kind of looked like he might be having a seizure......who knows. Of course I am always thinking nerurological, but it can just be reflux!

My two with PVL are definately ALWAYS fussy too. They are either sleeping or awake and screaming or fussing. Zakary was having hours of screaming constantly for a few hours every night. I have found that the two of them have to be put in their cribs in a dark room by 5-6pm at the latest to try to calm them down so they are not stimulated anymore. It has been working.

If you want to talk more, please email me! It sounds like we have very similar situations!

Dawn
mom to Zakary, Tyler and Matthew 4/24/04 at 30 weeks

hi!

i was looking for info's about PVL and i run into this website. it said triplets. i dn't have triplets but my son have severe PVL and cerebral palsy. he was born august 23, 2004 at 29 weeks. he had a grade 1 IVH.

my husband and i are looking for a support group or anybody with the same situation. did your child/children have problem with feeding and swallowing? his now 37 weeks and yesterday he was able to finish the whole bottle. that was the first time.

he have 5-7 neonatologist and 2 of them have asked us how far do we want to go. they told us about all the effects of PVL & cerebral palsy. his goin to have a lot of problems, mental retardation, motor skills goin to be affected etc. that it's goin to be hard on us. they actually wanted us to just give up on him. that was last week. now that they put him back on the CPAP his been doin good and feeding very well. next week they will take him off the CPAP and see what happens..if he's still goin to have breathing problems.

Oh, and I forgot, check out yahoo groups on the internet, they have a PVL group of parents of kids with PVL. I have got a lot of great information and support from these parents!

Dawn

Dawn,
Thanks so much for your message! It is so nice to talk with someone who is going through the same thing. Wow, we do have a lot in common! I love the names you've chosen for your boys, too.
Our girls have not even started PT yet. They will start this month on the 15th. It is for one hour each time and they are supposed to get it twice a month. They said they could increase the time if I decided I want more. Do you feel that the PT is helping your boys? Do they teach you exercizes to do with them? What is hyperbaric oxygen therapy?
Sorry! so many questions... When you described your son and the screaming and arching back, etc- it sounds just like my Mariah! She has gotten a little better just this past week, but still has her episodes. The part that kind of makes me sad is that she just doesn't seem happy like the other two. Rarely will she smile for me, but when she does it just melts my heart!
I was suprised when EI told me that Ethan does not qualify for PT at this time. He and Mariah are supposedly the ones with the more severe PVL, with Savannah's being the most mild. I guess you just don't know.
I think I know the yahoo group you're talking about. I just joined it yesterday! Haven't had the chance to check it out yet- but plan to do so soon.
I'd love to keep in close touch with you. I think it's great that we both have babies so close in age, gestational & actual!

My email is: 07evans@adelphia.net

Hang in there, Dawn! It sounds like you are doing an EXCELLENT job at doing your research and doing everything you possibly can to best help your babies.

Melanie, SAHM to:

Andrew (adopted) 12/2/94
Jeremy 7/25/02
Mariah, Ethan, & Savannah 4/14/04
Born @ 30 weeks-
3lbs, 5oz. 3lb, 3oz. & 3lb's.

Hello,
I didn't get the chance to read the other responses so forgive me if I am repeating what someone else has already said. If you haven't done so already have you babies evaluated by early intervention, and get therapy started if its needed. My dd started therapy at 2 1/2 months old!