connection between CP and PVL

[nastursim]

I know i have asked you many a question about my daughters diagnosis, but i still have some queries. I find it confusing to work out the connection between things, the CP and PVL, although i have read that infants with PVL do later go on to develop some form of CP. If the only noted damage on the MRI is to the white matter of the brain, how does this relate to CP, as I  thought CP was an injury to a specific area, like the cerebellum or the cortex. Given that she has low muscle tone, what area of that brain would that signify the injury being at??? Is that the PVL?? I just don't know how it all connects, or am I just stressing too much over this point?? What type of CP does that mean she has, or is it still "mild" CP? How rare is the hypotonia type?? And what is it??

Again, and I know you answered this, but just for reference, the report says:
"Myelination appears slightly delayed for the patients age with relatively high signal in the region of the arouate fibres in the occipital lobes on FLAIR and T2 weighted imaging. Note is also made of prominent terminal zones adjacent to the trigones of the lateral ventricles. The cerebral sulci and sylvian fissures appear slightly prominent consistent with relative reduction in white matter volume.Everything else mormal Features are consistent with delayed myelination, particularly posteriorly."

"The pathways that signals for extension might not work well and the fingers can't open very well or some of them can and some can't. That means when the brain tells the hand to "do it's thing" the only muscles which work well are the flexor and the hand or fingers will flex instead of extend.

The other possibility is that the pathway for the inhibitory signal is damaged. In this case the hand has to work very hand to extend out, because the tone in the flexing muscles never gets the signal to relax. "   In your last message you said this in relation to my asking the possibility of the weakness she seems to have in her little fingers. Is it possible that this could be  caused by the disruption of the signals going from the brain to the muscles resulting from the PVL?

In your opinion, is it possible to have hypotonia without having CP, as being a result of the PVL?? I am just all confused.

[Quixotic1]

Can you believe it!?  I got your name right.  My eyes dancing often juxtapsoe words and letters, I'm sorry for all the prior misspellings.

I'm afraid I have added to your confusion about the terminology.  I'm going to state it a little more bluntly.  Here are several statements.  Read them all and see if there is more sense.

Her MRI shows brain scarring (PVL).  Early brain damage causes CP

Your child has CP with mostly features of low muscle tone.


Cerebral Palsy just means the "effect of early brain damage on the ability of the body tomove."  Period.  In my mind your daughter's hypotonia is her effect of the brain damage she suffered.  Hypotonia is the way her CP shows up.

We always picture a stiff, spastic uncoordinated person when we think of CP, but that is just a stereotype.  CP has thousands of ways it can show up (hypotonia, hypertonia, weakness, paralysis, uncoordination, crossed eyes, drooling, mild or severe clumsiness ---anything and any problem may be very mild or very severe) depending on the kind, extent and location of the early brain damage.  Every child with CP is different.  Some have barely noticeable problems,
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Here is a definition of Cerebral Palsy from the National Institutes of Health:

What is Cerebral Palsy?

""The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don’t worsen over time. Even though cerebral palsy affects muscle movement, it isn’t caused by problems in the muscles or nerves.  It is caused by abnormalities in parts of the brain that control muscle movements.  The majority of children with cerebral palsy are born with it, although it may not be detected until months or years later. The early signs of cerebral palsy usually appear before a child reaches 3 years of age.  The most common are a lack of muscle coordination when performing voluntary movements (ataxia); stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a “scissored” gait; and muscle tone that is either too stiff or too floppy.  A small number of children have cerebral palsy as the result of brain damage in the first few months or years of life, brain infections such as bacterial meningitis or viral encephalitis, or head injury from a motor vehicle accident, a fall, or child abuse.""
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One cannot know what the final picture of a child's CP will be until (I'm guessing here) 4 or 5 years of age.

CP - doesn't refer to damage in just one area or in a particular location of the brain.  CP is the final physical effect of WHATEVER damage happened.  

You cannot look at the image (MRI) of the damaged area of brain and make definite predictions about the child's future, except that you can suspect there will be some problems.  In your daughter's case the PVL (PeriVentricular Leukomalacia)  just says there was some diffuse damage to the brain.

A child with CP might be have low tone mostly, but one limb that shows tone that is too high - spasticity.  Also, many kids with low tone, improve as they grow, getting a little stronger, maybe a lot stronger in some areas.

Does this help at all?  I almost need to be speaking to you face-to-face.  

Quix

[Quixotic1]

I should say that what I gave you is "my" definition of CP from my experience and from what I was taught.  You daughter's doctors may disagree and not want to label her.  That's okay.  Using the label of CP or not using it doesn't change the essential facts.  Your daughter has a problem and you are doing everything you can to deal with it no matter what name you put to it.

May I ask, after she was born, how did it happen that she became so dehydrated and lost 30% of her weight?  If that's too sensitive, of course you don't have to answer at all.  Quix

[nastursim]

Thankyou for all your time to explain the terms to me, and for any frustration I may have caused, it is just all so confusing and our paediatrician never really took the time to explain it all or the connection, just that it was a static brain injury. I do guess it does come down to how we see people with a disability, and I have only ever heard of spastic CP. It is becoming much clearer to me now though, so I thankyou for helping me to understand.

How did she become so dehydrated?? It is a little hard to believe isn't it?? I didn't actually know, until discharge, and even then, they didn't seem concerned. She lost 400 grams in 3 days though!! She was very sleepy in hospital, she didn't wake for feeds, I thought it was a result of the medication I was on, they didn't say any differently. She was discharged on day 3, and when the home nurse came on day 5, I think, she said she was very badly jaundice, which they never mentioned at the hospital. She just slept all the time, she could sleep for 6-8 hour periods if left without waking up, and even then she wouldn't feed. I had to wake her every hour to feed her, which was impossible because it was like she was unconscious, of which they said was normal for jaundice. They said her jaundice didn;t need treating.I had her weighed every couple of days, she gained weight incredibly slowly, sometimes not at all, and the jaundice didn't fully resolve until 4 or 5 weeks, which is when she finally woke up, and when she was back at her birth weight.

It sounds really dumb probably, but I didn't know. I did all they told me and they said there was nothing to worry about, until at around 6 months when they said she needed a pediatric review because she wasn't reaching her milestones. I was very concerned then and I drove for 4 hours to take her to a paediatrician because the wait locally was 3 months.

Is it possible that the injury could be a result of this??? They told me no, that it would have happened in the womb, or maybe that is just to cover their arses??  I hope it wasn't in any way my fault, that is terrible, I did all they told me to do. OMG, I should have known better, she was my 4th baby, a mother should know, but I honestly didn't.

[Quixotic1]

Oh, sweetie, there is no evidence that you missed anything.  They were weighing the baby and the excessive weight loss and slow weight gain should have sent alarms off in each nurse's head - or in the doctor that reviewed their notes!!!  It does you or your daughter NO GOOD to feel any guilt for this!!  (though I know one always feels responsible for anything, anything that happens to our kids.  That's what makes you a Mom!)

Your daughter's MRI doesn't show the kind of damage seen in brain damage from high bilirubin.  Nor does she have the characteristic stiff, writhing muscle movements usually seen from bilirubin damage, a condition called "kernicterus."

But, your story about how it all happened really does sound like something happened in utero.  That she was limp and fed poorly from the very beginning is the best evidence of this.  Term baby's may be a little sleepy or worn out for 12 hours or so after labor and delivery, but when they get hungry they demand food!  A huge number of mothers are on meds (like narcotics for pain) that could make the babies