Special Needs
any other Hydro moms??
Hi, I'm Sherri, my son Miles is 10 mos. old and was dx'd with hydrocephalus prenatally.His shunt was placed the day he was born. He was also born with and encephalocele which was repaired at 2 1/2 mos.
He is now doing great and just learned to sit. We are still working on crawling, etc- but he is pure joy!
If you want to read his story our blog is https://sherrilee.wordpress.com
click on the tag that says Miles or the tag that says Hydrocephalus.
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Re: any other Hydro moms??
OK I'm a hydro mum of a different kind, I have the hydro not my DS. Sorry it is not really what you're looking for but at least I'm a pretty good success story lol!
I am treated as if its "congenital hydrocephalus" because that's the nearest best fit but really it is suspected I didn't have it in utero but acquired it in the first week of birth. Who knows why? Ideopathic they call it, though just maybe the forceps delivery was part of it as I had no illness at all in that first week. I was dx at 10 days by increasing head circumference (and my mum nagging the doctors to check that!).
FWIW they told her (this was back in the 1970s) that the CT showed sooooo much damage that there was little chance I would ever walk, talk etc. She was literally told to put me in an institution and move on. She wasn't married to dad and he wanted her to marry and go overseas so in a way the expert advice would have been "convenient" but she refused and made them shunt me and nursed me through 2 very hard years of 23+ revisions, infections, manual fluid drainage and 2x meningitis.
After I was 3 it was a lot more stable, they finally got a VP shunt to work. Then they started correcting the squint. I had 1 revision aged 9 when I grew out of the tube (which was shortened by adhesions), it just broke off in my chest area. Though it was a little premature they replaced the shunt then too not just the tube, probably just as well as it is still going strong. As I put it my shunt is even old enough to drink in the US!
I won't bore you with the complications that are girl specific but suffice to say that prior to DS's birth I got checked out and they said keep praying your shunt lasts many years yet because we can't reproduce what it is at the moment...its probably full of debris and calcified silicone and if they put another one in it would be hard to make it work, but not too efficiently to produce the same pressure. They suggest I might even be non-shunt dependent these days though its unlikely, I have the blockage at the 4th ventricle (ie inoperable and unlikely to resolve). Still, my mum who is quite religious thinks this could explain it. And as the Doc says "we aren't taking it out just to find out if you need it!". You bet you're not!
Apart from my optic nerve damage and some hypothalamus damage (leading to myriad hormone problems and pregnancy issues as well as being chronically overweight) I've been very healthy all my life. The only drama was breaking my leg and getting appendicitis.
Mum was told all along I'd need special ed etc etc. She took me to a special ed preschool. After I got frustrated with the kids with real difficulties and took all their toys away (forgive me, I was too young to understand) she took me out for everyone's best interests. So the Docs admitted I could go to mainstream school if she accepted I'd be bottom of the class. She was thrilled.
Then I topped grade 1. Then grade 2. Then grade 3. Did well all through school. Graduated high school in the top 1% of the state and got into law at university (in my country there is no college and you go to law school straight from high school but it is a 6 year course). AT that point my neurosurgeon wryly said "ok she might be as smart as my kids" :-)
My message for people about hydro is do not pander to expectations. Be prepared for the worst but aim as high as you can and you never know what you can achieve. I was really mad once when I was about 8 and in my Dr's office I saw a poster about hydro kids "who may find handwriting physically difficult so introduce a keyboard early". Bugger that I thought. *I* didn't, and I had about a truly awful prognosis as an infant. So while obviously parents need to know possible upcoming problems, I think you also need to ignore them on a day to day basis. Make the most of what you have and you might end up proving them all wrong.
Check out some of the stuff by Susan Greenfield about regaining brain function and you'll see the potential for infants to overcome!?
GL with everything!
Jane?
Thank you so much for your reply! It is great to hear from an adult who has lived through hydrocephalus. Fortunately, we have an amazing neurosurgeon who always makes it a point to tell us to ignore all of the MRI's, CT's and expectations that go along with hydro/ ACC, etc. Our son is doing so well! His hydro was very severe and he is blowing away people's expectations!
Thank you for the info on Dr. Susan Greenfield. I read a couple of excerpts from her books- are there any specific books you would recommend?
Miles has had no revisions or infections so far, so we have been very blessed!
I do have one question for you...were you "developmentally delayed" at any point? I mean, as far as milestones go?
Cognitively and socially, Miles is right on track- but he is a little behind on some of the physical milestones.
It is so encouraging to hear about how successful you've been thank you SO much for sharing!
Sherri
Hi there!
OK first of all, all my books are on a boat somewhere near Japan (we just moved from the US to Australia so the removalists are by boat!). So I can't pull out my Susan Greenfield collection. But Brain Story I think is the one that had it. Maybe it was the Private Life of the Brain. I met her once in Melbourne (she came for a centennial of federation event) and she was very impressive irl. We chatted for about 30 mins after she finished signing books. She doesn't look at hydro in detail but if you can grab the name of the woman she talks to in that part of the book I'm sure you can look up more about her elsewhere. I am pretty sure hydro is in the index.
There's also some stuff around about infants who have had a stroke for some reason and we KNOW part of their brain is dead from that, and we know what function should be done by that part of the brain yet they very often learn to do it anyway by co-opting another part of the brain to do the job. At an early enough age we know this is possible and there's no reason we know that hydro babies can't do the same. In fact that's what they think my brain did because on the CT it literally looked like the rind on an orange with all the ventricles taking up 80% of the space with fluid, I've seen the CTs!?
OK I would say I was ahead on verbal/cognitive milestones from about 2 years on. I read early, spoke better than my peers, etc. But I was considered behind on some physical things and in fact I'll alwaysbe behind on some because you know what? They're not hydro related, not directly at least. So I'll never have good eye hand coordination or perfect gross motor skills because I have very little depth perception in my eyesight. You can't be great at catching a ball if you can't tell how far away it is KWIM? If you like that's a hydro related developmental delay. But seen another way it is just that hydro caused the eyesight damage (to the optic nerve) and its a sight issue not a development issue.
Another part of that is that you can compensate for it. My mum was very proactive. She didn't want me not to get a drivers licence just because I couldn't tell how far away things were. So I did tennis from a young age even though I never made it out of C grade fixtures. My coach was great, never made me feel bad for being in the grade with younger kids. Always told the whole team upfront that I was "practically blind and it was a miracle I could hit the ball" (he had that kind of sense of humour) so that I was accepted.
As a result I am a crappy tennis player but a decent cautious driver.?
Also back when I was a baby a LARGE part of reinforcing the prognosis ws that I did not lift my head, roll over or crawl until WAY after I should have. In fact I didn't really crawl at all, I used to drag my legs until finally I walked. For a start a lot of totally normal kids skip crawling. For a second thing, because my head was enlarged as an infant it was not suprising I couldn't lift it and my body when my body was only normal size. As I got older my body caught up with my head size! This seems like the bleeding obvious but at the time the physiotherapist, social worker and Drs did not think of that explanation.
I was always being tested for balance too and not until adulthood did I get into normal range for "walking the line". Basically my neuro said it was an acquired skill for me rather than a physical trait, so that's why it took so long.?
?I guess in part there is a domino effect, if you are bad at gross motor skills due to eye damage you tend not to do things that hone those skills and you end up being perceived as behind on developmental levels.?
That said on fine motor I was always fine. I could touchtype at 200wpm at age 11 when my aunt lent me my first computer. She was a science teacher asked to teach a grade 8 computer class (way back when there weren't such classes) so she lent it to me for the holidays and then I taught her how to use it! And now I expect my son will be teaching me whatever technology comes up with next.
I believe I walked on time (or close to it) and I talked before I was 2 so pretty much on time. It was a huge deal when I said "Taxi!" because no one thought I would talk for ages if at all. I have a tape dated Christmas 1978 (so I was not quite 3, where I am really fluent and singing songs and so on). DS has some catching up to do if he's going to be doing that at hte same age in a couple of months.
?You have 2 kids right? That probably helps a lot socially for Miles. I was an only child raised by my Mum and her parents so I didn't have much contact with other kids except in hospital (not the same). I did not mix well with other kids at all until high school. I hated preschool so they took me out (as in I used to steal and hide the car keys so they could not leave). My gran was a retired kinder teacher so after a month as the unpaid aide without carkeys she decided it wasn't worth it. I didn't really make close friends and fit in until high school, I think a lot of that was that I didn't get much unstructured exposure to other kids so that won't be an issue for Miles.?
Oh and a funny story - every single time I had a shunt revision I would wake up and just want to TALK for HOURS. I mean like 5-6 hours STRAIGHT. No matter what time of night. I would talk about ANYTHING. This started as soon as I could talk really. My neuro said that the part of the brain where the catheter was happened to be a known speech centre and he conjectured it got stimulated every time they had to operate!
GL with everything and page me (probably best on parenting) if you want to chat!?
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large part of reinforcing
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Wow! I can not thank you enough for sharing with me
They have said things like a "thin ribbon of brain tissue" around the outside of the skull to describe Miles' brain. I don't care what it looks like, he is a smart little boy!
He adores his big sister and tries to mimic her. He is a very happy, social baby.
It gives me such hope to hear that you were delayed with crawling, walking, but have gone on to be even better than average! Of course, I worry about every little thing and I just want him to be able to keep up with his big sister who is extremely bright.
Miles does have some vision issues. He has strabismus in his left eye which has caused him to favor using one side of his body more. Basically, the eye Dr. said that his left eye has poor vision, so he is ignoring it and the vision is decreasing. But, we have been doing things like botox treatments and patching to treat the problem and he is actually doing much better. It is truly amazing how resilient babies are!
I just thought of a few other questions...
-Have you had any problems with seizures or memory?
-Have you noticed that weather changes effect you?
Thanks again!
You are an inspiration!
I'm so glad to help.
While some physical things (like climbing and inquisitiveness) are seen to be signs of intelligence, especially for boys who tend to do those sooner while girls get verbal skills sooner on average, i think with hydro kids you need to be a bit flexible and treat physical and cognitive development as interchangeable for the most part. I guess I mean that there could be physical reasons (like a big head) that put off physical milestones. There could be overinterpretation (like if he didn't have hydro not crawling wouldn't be thought unusual). And also there's the extra care that can distort things. I never climbed or explored dirt or did some of the crazy things that the child psychologist and physiotherapists thought I should be doing as a toddler. I'm sure part of that was that I was always being protected so the shunt wouldn't get hurt. Kids get an instinct for safety after a while. Not faulting my mum for that, I really do not feel deprived of climbing or dirt and don't think I missed out on anything. Also it is totally understandable as I did a somersault when I was about 2.5 and pulled the tube out of the catheter! That was a revision she was determined not to repeat! After that somersaults, monkey bars and such were out of bounds. Also rollercoasters, flying foxes and anything that radically altered the inside-outside pressure difference. I'll never scuba dive or go on a space flight but I think I can live with that! It used to make her sad that I would miss out on these things but really, if you don't know what you're missing you don't miss it that much. Rollercoasters scare me and they probably wouldn't if I'd been on them, but it all worked out conveniently.
I wonder if it will be harder for a boy though to miss out on the rough and tumble. It is true that contact sports were a big deal when I was a kid, mum constantly struggled with the risk v experience equation. I played netball (a more aggressive form of basketball that primarily girls play in Australia, very hard on the knees as you cannot travel with the ball at all). I played volleyball for a while and I was actually quite good at hockey (stocky build) though I didn't play fixtures because in my first season a classmate got a fractured skull on the field. So I just did it as my choice for HPE class which was much more amateur.
Instead I did things like ballet and tennis which were less dangerous :-) so I thought until I broke my leg at ballet but that is another unrelated story! My biggest risky activity has been horseriding. I'm very cautious and will never be brilliant?but it is great fun and I think satisfied my risk-taking needs as a teenager without too much angst.
My stabisbus was treated the old fashioned way with a patch when I was very young, which was pretty traumatic. Maybe because I was older than your son at the time. My poor grandpa who minded me during the day (my gran was my mum's dental assistant and receptionist for a while) had to make cardboard tubes to go over my elbows so I couldn't pull it off every 5 seconds. He was very traumatised by that and pushed to get a second opinion which led to a young gun dr of the time operating to correct it.
But the sight and depth perception were damaged esp in my left eye. I didn't get glasses until the common deterioration around age 14 (and my dad was short sighted so it wasn't surprising) but I found 1 eye is always worse than the other and I am TOTALLY binocularly dependent. My left eye is about -3.25 and my right about -4.25 in lenses, but tested SEPARATELY they are much worse. Covering 1 eye I can hardly see anything in 1 eye (big light/dark blur) and very blurry in the other. But together they do ok. There is a description for that but I can't recall it, I don't think I've seen my opthalmologist since my last strabismus correction in 1991 (and he's retired now so I really need a new one!). The strabismus is likely to need correcting every 10-15 years or so and he did it twice already, in the 70s and 91. It is way overdue again, and it does affect my sight without glasses because when it wanders I don't get both eyes working together. Glasses help keep it focussed unless I'm really tired. Interestingly he told me you can correct either eye and it will work. So he did it both times on the left (my weaker eye), both because 1 eye is left unscarred as long as possible and also because it avoided risk to my best eye.
OK your questions, sorry to be so longwinded.
1. ?seizures and memory
Memory was never a problem - I have an almost photographic memory we think. My gran used to read poetry a lot to me in hospital (soothing, rhythmic) and she knows a LOT by heart too. I used to pick it up and remember long bits from a fairly young age. Like songs it is a good way to strengthen memory. Anyway, then at primary school I used to pick up all kinds of things and just remember them, like that long poem The Lady of Shallott. In grade 6 we had to learn a poem to say for the class and I chose it because I was a bit of a lazy student really :-). Turned out I needed to brush up on 2-3 verses, and when I got the book from the library I got TOTALLY messed up because they were not on the same place on the page as in my gran's old book I'd originally used and which was lost somewhere. So clearly there was some kind of photographic element.
Seizures. I have 2 incidents worth telling. In 1985 in the lead up to the last shunt revision I fainted in church. Not surprising you might say in a hot humid summer (record temps) in the subtropics. But I didn't feel it coming as a faint turn, I actually felt myself go into a kind of trance like I couldn't tell anyone I was going to fall, and when I fell I was very stiff. It wasn't a classic seizure, but to my gran beside me it looked wrong, and a classmate's dad who was an ambulance EMT in the pew behind it looked like a fit he said. I went to the neuro but he said you couldn't tell now what it was, they did CT and nothing odd came up. He said he didn't want to talk about medication until there were at least 2 repetitions, so watch and wait.
About 6 months later I felt a bit odd and went to go downstairs to lie down and fell down the stairs. Again, it wasn't a classic faint and was probably a seizure. Again it wasn't a full on classic seizure. I was fine afterwards and again the neuro said watch and wait. When I had the shunt revision a couple of months later they conjectured that the broken off tube had allowed some drainage, and so took a long time to show up as broken, but pressure had been building up and the 2 fits were part of the lead up. Who knows? I've never had anything resembling them since though.
?Probably the only restriction on my life that every really annoyed me was mum's paranoia that I could get a fit like that, or a blockage overnight and be too groggy by the time I woke up to get help. So she would call me every morning for years to check I was up! Gosh that was annoying. But I have always been careful and someone at work always knew that if I didn't come in to check I'd given warning and if not to call me. I always left a spare key in my work desk so that someone could come round. I still take those kinds of precautions when DH is travelling for work.
Nevertheless every shunt blockage/failure I've ever had has actually been dramatic onset (vomiting and pain) or slow build up but very obvious (no way I could have slept through the 12 hours leading to the lst revision when I was 9).?
Weather - not really, at least I didn't think so before I moved to Melbourne. I used to live in northern Australia where it is very hot and humid. The pressure is usually much higher. I found moving to Melbourne (can be very hot but is a dry heat with lower pressure and is usually temperate) really helped. I used to get headaches quite a bit, like once a week or so, and then in Melbourne I wouldn't get them more than every few months. Not severe headaches, just the kind that a couple of soluble aspirin fix, but still.
Still, New York was pretty humid in summer too (in fact reminded me of Queensland) but I never had any problems there. So maybe it became less of an issue as an adult.
?An encouraging note on the durability of shunts - DH and I were travelling in Europe in 2003 (actually we got engaged on the trip) and I accidentally stood up under a window sash and banged my head really really hard right on the shunt site. I saw stars and staggered to the bed. I had a mighty big headache for 2 days and was really worried about breaking the shunt. And we were overseas. DH rang my neuro and he said not to worry, they're really tough, and not to do anything other than ice unless the headache moved to the classic between the eyes spot. It never did and I got away with it. So maybe I was being overcareful about sports as a kid after all :-) Still, I don't regret being careful!
I hope there is something helpful in all that. FWIW I would get a second opinion on whether surgery to correct the strabismus is worthwhile, the patching therapy has been very much criticised in the last 20 years because you can diminish the sight in the patched eye and basically make the body forget to receive any signals from it. This is espeically a risk for babies because they're still forming neuroconnections so its probably reversible now, but in a year's time might not be. JMO based on what I was told. I don't want to gainsay your specialist. But the surgery is honestly no big deal. It's a day procedure and I flew through it at 3 and again at 14. The only reason we waited until age 3 was that I had an old opthalmologist originally who didn't believe in surgery for it, and that until not long before the shunt was unstable so that was a bigger issue.
All the best!?
My son has hydrocephalus due to a brain tumor. We've had one big revision (about four weeks after initial shunt placement), and we also had to have a subdural shunt placed last month because when they took part of his tumor out and when his ventricles shrank down, it left a cavity that just wasn't draining.
It's scary to have a child with hydrocephalus, especially a baby who can't tell you anything. We've, unfortunately, had many, many CT scans to be sure that his irritability at times wasn't from shunt malfunction. I am always worrying about it. Signs for my son's was scratching his head, irritability, vomiting, and crying a lot.