New to SN forum - Prenatal stroke and CP

[laneysprout]

Hi Mamas,

I have been putting off posting and introducing myself on this forum, since I am still coming to terms with my own feelings about the term "special needs" and how/if it will apply to my DS, born at home in June (I also have a 3.5 yo DD).  I had a fast labor and home birth, and DS was born with his arm across his face and weighing 8.5 lbs.  My DD had also been born this way, weighing 9 lbs., and had no issues, so DH and I didn’t think to much of it.  His left arm seemed a little floppy at first and my MW said it resembled an Erb’s Palsy, except his delivery had not been traumatic – far from it.  By the next day he was moving it just as well as the right arm.  When we saw his pedi at one week, he told us it was probably a little pinched nerve that would work itself out. 

From the beginning, DS was nothing like his sister.  To call him irritable would be a vast understatement.  I kept saying that he seemed “ill at ease in his body” and our homeopath even suggested that he looked a little shocked to be earthside.  We eventually settled on calling it colic, as imprecise as that seemed to be.  We battled thrush, mastitis (twice), and postpartum depression, quite unexpectedly.  Around 4 weeks or so, we noticed he kept his left hand fisted and his fingers (except his thumb) were quite tight.  We were referred to EI, OT, and a pedi neurologist.  The initial “diagnosis” was that it was likely a brachial plexus injury that he sustained when his arm got caught when he rotated into position for birth.  The treatment was OT and an MRI at 6 months if there was no improvement by then.  OT loosened up his hand dramatically, but he did not regain any function in his fingers and so four weeks ago we had an MRI which indicated a massive right side stroke that occurred prenatally.  When I saw the images, I nearly passed out – almost the entire right side of his brain was affected, including the cerebral cortex and parts of the internal capsule and thalamus on that side. 

According to the pedi neuro, the stroke occurred early (in terms of brain development), likely around 30 weeks.  This means that the parts of his brain that were affected did not yet have any specialized function attached to them – and that the rest of his brain could take over those jobs that were destined for the injured area.  So the area where the stroke occurred is now filled with cerebral spinal fluid which will not be reabsorbed.

Prognosis seems good, as far as these things go, I guess.  He will likely have trouble with fine motor skills on the left hand, and those fingers will always be slower and clumsier.  Other than the fingers, the rest of his left side seems to have recovered almost completely.  Since the stroke encompassed the frontal and parietal lobes of his brain, he may have some difficulties with visual-spatial skills – reading maps, following complicated directions somewhere, and possibly with handwriting, at least initially.  The doctor believes that his cognition and language will be normal.

We are continuing with OT and he started PT two weeks ago.  We are also getting cranio-sacral work done (our chiro came to the house when he was a day old to start working on him – how amazing is she?).  Technically, because there is a motor delay involved, this is cerebral palsy, but the doctor prefers to say he suffered a prenatal stroke since it is more specific and since CP encompasses such a wide spectrum.

I am so grateful that we learned what happened when we did, rather than earlier, as it enabled me to continue with my pregnancy and to provide my son with the gentlest possible entrance into the world.  I am also grateful for breastfeeding, co-sleeping, and babywearing as they have enabled me to provide DS with a more connected and nurtured transition.  He is now a happy, fat, 7 mo. old who has reached all of his developmental milestones so far.

I am here to make connections and find support and information from other parents.  I am especially interested in connecting with others who may have children with similar issues.  Thank you for reading this far and I look forward to getting to know you as mt family embarks on this journey. 

[QueenOfTheMeadow]

It sounds like you've been through quite a journey. I'm so glad to hear that your ds is doing well. It sounds like you've got a great group of medical professional to work with. I'm glad you decided to post here. I might be biased, but this is my favorite forum because of the wonderfully supportive and knowledgable women here. Welcome!

[oaktreemama]

Hello!!

My son had an ischemic stroke somewhere between 28-30 weeks (their best guess). Hi is 32 mos now. His affected the right side of his body. His diagnosis is congenital hemiplegia-under the umbrella diagnosis of cerebral palsy.

When I delivered my son his right hand was next to his face, but it was simply labeled a compound delivery-it meant that I experienced a very large tear. But, everything seemed fine.

We noticed at about five months that he was not using his right hand very much and consistently reached across the mid line to get his toys. I mentioned it at his WBV and within 24 hrs we were seeing a pediatric neurosurgeon-a horrible and scary time as they were throwing out stroke or brain tumor.

That began our odyssey. Because it was a clotting stroke we had to rule out all kinds of things-we saw a pediatric hematologist, a pediatric cardiologist, and a pediatric endocrinologist. In the end it was of unknown origin which is actually good-the chance of him experiencing another one is like our chance-and I can't worry about that.

We see a PT/OT and are planning on starting conductive therapy this summer-three weeks, five hours a day of OT/PT on his right hand and arm. My son is doing awesome. The doctor thought he might not walk, or he would walk but drag his right leg behind him. He runs and jumps and climbs-a little stiffly perhaps but he is getting stronger every day.

His right hand is essentially useless at this point so we hope the intense therapy this summer will really help him.

I am happy to share our experiences and what has worked and what hasn't.

[askew]

My DD had a stroke as well. They say between 34 and 36 weeks when she was born. Her damage is in the occipital lobe. She developed Infantile Spasms at 6 months old, and that was the worst part for us. Luckily she responded to the meds right away and outgrew the seizures by a year. The meds really slowed her development. We deal with some hypotonia, but no CP diagnosis at all. I guess her motor centers were not at all effected. We have had the best luck, therapy wise, with Feldenkrais or Anat Baniel Method. (Anat is a Feldenkrais practitioner) My DD is 18 months old. Not walking but doing great. Just a little behind in speech and fine motor. Gross motor is catching up more quickly since she stopped the seizure meds. 

[gsmom]

Hugs to you mama.  What a journey!  I couldn't read your story and not say welcome.  Welcome.  I hope you find some good connections here.  

[laneysprout]

Thank you all for your kind words and the warm welcome.  

oaktreemama - did you or your partner need to be tested at all?  The pedi neuro felt that DS was too young for the blood work to rule out a genetic clotting disorder, so DH and I and were both tested.  It was a lot of blood - 10 tubes from each of us, in all.  We are waiting for them to call us about scheduling an echocardiogram as well to rule out a congenital heart problem.  I'm not familiar with conductive therapy - is it like restraint therapy?

askew - i suspect DS has bit of hypotonia, too. sitting is not his favorite thing and he tends to really arc back when he is unhappy about something.  could just be temperament, though.

PT was here today and wants us to work on sitting with him.  he can do it for brief periods, but really prefers to be on his tummy.  he is rolling and pivoting and bearing weight equally through both legs.  We put a small plexiglass mirror up in our living room, with a small bar 15 or so inches off the ground to give him some support for when he starts trying to pull up.  He has also been squeezing our fingers with his left hand this week, which I am thrilled with.  Not nearly as hard as with his right, but it's progress!

[Sage Green]

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Edited by Sage Green - 11/26/11 at 1:54pm

[beenmum]

Welcome.

My nephew had a stroke also. It has affected the right side of his body. He was dx'd with Hemi CP.

He just turned 4 and is doing pretty well. He is motor delayed, has unilateral hinged AFO and a hand splint. But his verbal skills keep getting better and better every time I see him.

[devon]

Welcome!

My third son had a similar thing as yours - healthy pregnancy, super fast home birth.  He started having some other issues about 2 hours after birth - and at 6 months was diagnosed with Noonan Syndrome.  He has had right sided 'weakness' since he was little - probably 2 months - he didn't cross midline, late to roll on that side, etc.

He started receiving PT/OT (a combination) through First Steps due to the dx of Noonan Syndrome - which has as a big component of it hypotonia.  At 18 months, after not seeing a ton of progress on the right side (he was progressing but the discrepancy was increasing between the right and left) we had an MRI done.

I was shocked when it showed that he had a stroke and they said it had probably happened prenatally.  It impacted the area of his brain that dealt with the right sided movement and language (no impact so far with the language).  He was dx with hemiplagic hypotonic CP.

He's kind of a tricky case because he has CP and Noonan's, so sometimes it's tough to say what 'causes' each of his issues - more likely they both contribute.  We're learning now that he is probably not hypotonic CP but hypertonic - but because of the overall hypotonia from Noonans, it didn't initially present that way. 

He is in a AFO - a low one right now - just to the top of his ankle bone.  His achilles is starting to get really tight so we're watching that, as well as his right hip which is at a 45% subluxation.

He receives PT 1 hour a week, and OT 1 hour a week to work on his fine motor things.  He walked at 18 months (although doesn't have great balance) and is doing really well. 

It is a scary diagnosis but he has done so well, and we've found that CP actually qualifies him automatically for a lot of services, so in that way it is beneficial to him.  He was able to qualify for Children's Special health insurance from our state, which pays for a lot of his therapies/AFOs, etc, which is a big help!

Good luck and welcome again!

Devon

[cathy013]

hi laneysprout, how is your child doing now? my son is 3.5 weeks old and i just found out he suffered an in-utero stroke. of course i am unbelievably depressed and hopeless and devastated. i don't know what will happen in the next few months. at the moment, he seems like a normal, healthy baby, moving everything and eating well. how is your child doing? how old is your baby now? did she have any noticeable signs from birth? was there any weakness from the beginning? or did it take a few months to appear? how often id you do PT/OT? did it help? sorry for all the questions. just looking for hope...

[laneysprout]

Hi Cathy,

I know how overwhelmed and scared you must be right now.  Take a few breaths and try to remember that it is a process, and it is on-going, and constantly changing.  My son is now almost 17 months and he is doing very well.  With strokes, the prognosis is different for every baby depending on which area and side of the brain were affected and the size of the stroke.  In my son's case, it was right-sided MCA (middle cerebral artery) stroke that has affected his motor development on the left side.  His cognition and language are intact.

My DS didn't have any noticeable weakness after his birth for about 4-5 weeks, when he started keeping his left hand fisted.  His fingers started to get tighter and more difficult to pry open.  He started OT  (at that time we didn't know it was a stroke, but knew we needed to work on keeping the muscles loose) around 6 or 7 weeks and went weekly.  A few months later he started PT weekly as well.  His hand is VERY loose now, though he doesn't use it for very much.  He does use his left arm to crawl (though he crawled a tiny bit late - around 11 months) and to assist him in pulling up and drinking out of a cup.  He doesn't walk independently yet (he loves to walk if someone is holding his hands to help, though), and we were told he probably will not walk on his own until the 18-24 month range.  He was just fitted for a brace to help support his left foot (he does;t have any leg or foot weakness, per se, but because of the way he is bearing weight they want to keep his foot in a straight line).  He'll need to wear it until he is walking, but will outgrow the need for it within a year or two.  We will be doing constraint induced movement therapy (you can google it for info) in December where they will cast his right arm and hand to "force" his brain into using the left.  He'll be casted for four weeks, 23 hours a day and do intensive OT 3x/week.

He currently receives OT and PT through Early Intervention and he goes to a pool group once a week as well.  We do stretches daily with him at home.  I know it probably seems like ALOT, and it is, but you will get used to what is "normal" for your child and adjust and adapt to whatever comes up.  The hardest thing for me has been seeing other babies surpass him in terms of gross motor development.  Babies who are younger than he is are walking, etc.  But at the end of the day, it seems like his chances for a good and happy life are high.  He will be able to go a regular school, play sports, go to college (if he wants to!), etc.  I think it is easy to get caught up in what the challenges might be, but try to look at your son as a normally developing child who has this other issue you can handle.  

If you have any specific questions or just want to chat, feel free to PM me.  My heart is with you as you embark on this journey.  It isn't one I would have ever chose for myself, but it has been the greatest gift of my life in many, many ways. Hugs.