View Full Version : need help with non verbal child
05-06-2007, 07:24 PM
I am hoping someone out there can help me put into words what is going on with my son post new shunt placement.He is 12 years old disabled boy. He has the first shunt placed at birth then redone at 1 and now he just had a new strata medtronic placed 10 days ago. He is not acting himself or even close. He keeps putting his fingers in his ears poking at his eyes and clench his teeth. Bu most alarming is that he is trying to bang his head on any and every hard object he can find! I mean the floor the tub the counter whereever he can even another person's head! Developmentally he is very young and can not talk. Neurosurgery says he just needs to adjust. Okay I would disagree this can not be normal. He won't smile at all and still is not relieved with oxcycodine or ibuprofen (that was there solution instead of figuring out what was wrong with him) any insight would be so appreciated.
05-06-2007, 09:21 PM
I'm no expert on hydro. I'm sure one of the experienced parents will be along in a few minutes.
It definitely sounds like he's having pain -- A LOT OF PAIN. Your son tearing at his eyes makes sense 'cause his vision might be affected.
What kind of a doctor are you seeing?? The surgeon??
There could be any number of things. Has anyone checked the Medtronic to make sure it's even turned on??
I'm surprised -- actually horrified would be a better word -- that they haven't done a flow study to make sure the darn thing is working.
Just from my limited understanding of hydro which I've just picked up from hanging around the forums -- the thing could be malfunctioning or over-draining. If the shunt is overdraining, the lining of his skull could be pulling away which I understand is painful. On the other end of the spectrum, if it's not draining enough, that can also cause pain.
You need to go back and DEMAND -- even if you have to kick holes in the walls -- DEMAND that they find out why your kid is in so much pain.
Are you in the US or another country. I would take your son to urgent care and tell them that he just had a new shunt placed and he's demonstrating incredible pain and visual and hearing disturbances.
Someone with more knowledge and experience will be along soon. I'd definitely say though that it sounds like your son is demonstrating vision and hearing problems and pain.
PS: Do you normally have any way at all of communicating with him. Does he understand "ouchies"?? Can he normally communicate in some way that he hurts?? This really concerns me, Susan -- I wouldn't be waiting until office hours in the morning. I'd be going to the emergency ward immediately. One thing that does come to mind is I know a woman who's daughter has been in and out of hospitals a lot because of hydro and other issues. They actually 'forget' to turn the darn thing on sometimes. I'm wondering if this would be the case for your son... It's like two steps: the surgery, then turn the thing on. Sometimes step two doesn't get taken.
05-07-2007, 12:50 AM
More notes on NIck and Answers to Barb's questoins.
We spent the whole day yesterday in ER, Never actually talked to Neurosurgery but the attending ER Pediatrian did. They think it's normal scar tissue pain and someother BS. they did an CT scan and said that his ventricals were within the normal range. They also did an abdomen Xray to make sure his constipation issues were not backing up the shunt. I know whatever they think is normal and okay isn't and I don't actually trust neurosurgery at CHRMC in Seattle as the past weeks they have failed us on several occasions. But thats a story for another time. He also has taken to hitting his cheekbone on the left side since is right hand is better functioning. He is taking his pain meds but they are not the cure! Thanks for your quick reponse and I will be dealing with Neurosurgery tomm ( umm ya they think they maybe can fit me in Tomm!) unbeleivable. I will be in ER if they can't and then they will have to see me anyway. I just want him to be better. THe ER doc's have been great here though.
05-07-2007, 02:37 AM
This is breaking my heart if he's still not well,i don't know your issues
but he really needs to go back to ER. Unless he is finally resting.I know
it's awful but sounds like you have,the Dr. they called just does not or did
not do his job.If he conts take him to the office please don't worry about
a appointment. Or if you can't wait take him back to ER..
I wish i could be of help.I am a retired ER (truma) nurse the idea of kicking a
wall or 2 just might get the help he needs..Many Blessings Sue
05-07-2007, 07:10 AM
:hug: :hug: :hug: Susan :hug: :hug: :hug:
I'm so sorry you're having to watch your little guy go through this. :( Barb is right on, I think. Pain, especially so soon after surgery, is a major problem, and it's very possible his shunt isn't working as it should, especially if his behavior is very different from his usual, and most especially if it's worsening since surgery. Check his incisions carefully for any swelling or redness, and note any fever or other symptoms you can see (e.g. change in gait, anything that may be even minor seizure activity).
Barb is right about insisting that they take your concerns seriously, too. Stay as long as you have to, and refuse to leave until they go over him with a fine-tooth comb to rule out any possible problems. (I don't know how else to say this, but if his father is involved in his life to any degree, have him stand up for you both, too. Doctors are much more likely to listen to men than to us. :rolleyes: )
Good luck, and please keep us up to date.
:hug: :hug: :hug:
05-07-2007, 09:05 AM
Get in touch with the Hydrocephalus Association:
For personal, one-to-one support, call our office directly: 415-732-7040 or toll-free 888-598-3789. Tell them you need HELP.
Call one of the neurosurgeons listed in the Hydrocephalus Association registry and BEG/CRY (use your "Hysterical Mother" voice) for them to come in on a consult for your son:
These programmable shunts fail -- they fail sometimes as soon as they're installed.
A total 360 degree change in behaviour in a child indicates that that change in behaviour is probably caused by whatever is different in his life -->> that is the shunt.
I'm sorry this is so hard for you, Susan. Liz (AKA "my favorite Lizard") is right, if you can find a male to come with you and your child to the doctor (husband, Rabbi, Priest, friend), it helps.
Stay in touch. Let us know how it goes. BIG HUGS (and praying for relief for Nick).
05-07-2007, 11:28 PM
WE went to Neurosurgry clinic today and were seen by the neurosurgery nurse whom we first met in the ER 2 weeks ago. She agreed that this was not normal. WE changed his setting from 1.5 to 2.0. SHe also did a CT xray series to check that the shunt was connected and at the right setting and to check the tube extending to his perinatal(sp?) cavity. Everything checked out okay. He has been extra sleepy all day even before the shunt change. Later we came and he was weepy for no reason. I think he can not figure out what is going on with his feelings, but the head banging was much less today. They told me sometimes pressure can be to low and his ventricles were showing very small on the CT. We will be able to judge better tommorrow as to how and if the changes worked. thanks for your concern and thoughts how grateful I am for the internet it makes me feel not alone.
and yes his dad is around but we own several restaurants and we are opening our 5th tommorrow so dad has been dealing with that.
I'll keep you posted.
05-08-2007, 06:38 AM
This may be a weird question to you, but...how's your weather? Is it hot and sticky, or raining (or trying to)? I think there's always a reason for any behavior, even if it's not evident on tests. If you have hot and humid weather, or you're getting ready to, he may be in pain from it. This is not a joke! Many of us experience severe changes in CSF pressure that result in pain, and they aren't necessarily obvious on test results. He may also be having some type of mild seizure. For 25 years, I had these annoying things several times a year for several days that went unIDed until I realized they were auras to bigger szs and they were then properly dx'ed as simple partial szs. They generally coincide with radical changes in the weather, such as season change and other things, such as hormonal irregularities or sleep disturbances.
Also, you say he's behaving this way for "no reason," but keep in mind that CT won't necessarily tell you everything you need to know. MRI is always better, and it can even take pressure monitoring to get to the bottom of what's going on. CSF pressure changes all the time, according to things like weather, body position, or illness (even minor ones, like colds or allergies). If he's super-sensitive to pressure changes, it would explain his behavior. This does not necessarily mean something is wrong with the shunt. Depending on the degree or impact of the hydro before treatment and the effectiveness of shunting, among other things still being IDed, pressure sensitivity can feel like shunt failure to some in certain situations. I will never drive (or even be a passenger) through a mountain range again, which is sad, because I used to attend college in the valley in the middle of the Blue Ridge. :( Last time I went anywhere near it, I was sure my shunt was failing. I was utterly miserable! :(
Just some things to consider...
05-08-2007, 09:28 AM
...his ventricles were showing very small on the CT..
I've just begun to breathe again -- that might very well have been the reason why he was having so much discomfort/pain.
I hope -- I pray -- that they get Nick balanced out again.
Oh, congratulations on your new restaurant!! That's a wonderful accomplishment http://chocolate-moose.p5.org.uk/MINIS/highfive2.gif
I'm glad you found us here, Susan. It's hard to raise a child with medical problems and run a business and have a life and have enough time to do all of it.
We grow to love the kids that are brought here by their parents. And the connections that we form with the parents are pretty wonderful too. It's much easier to cope when you feel like someone (a HERD of someones :D ) is supporting you.
05-09-2007, 10:01 AM
his ventricles were showing very small on the CT.
Sorry...been writhing in agony from an extracted wisdom tooth for the past week and completely missed this. If they are unusually small, he may have something called "Slit Ventricle Syndrome," which involves excruciating headaches and can act a lot like shunt failure. I don't doubt that's it, now that I have seen this. :( Poor kid...:( Even slight constriction in vent size can make pressure excruciating. Please pound the docs on his behalf for any answers you can get on ways to relieve his symptoms.
05-14-2007, 11:02 PM
We have been riding the roller coaster ride since he got home. He had the shunt setting changed to 2.0 but each day has been insconsistant. He is acting like he is on sedatives but is not. he is still very tired and lacking of general energy and not interacting or connecting to us much. He is unusually snuggly though. He still has his head banging episodes and is not making progress. THe docs still don't have the answers. They think he could have caught a bug in the hospital but we have been home 17days now. oh and one even suggested he was having behvoir issues due to puberty! Which just conicided with his surgery! Are you kidding me? Yeh its hard to have faith in the neurosurgerons with talk like that. I really need to see him get better! WE are doing our internet research and still searching for answers because his quality of life is not good right now.
05-15-2007, 06:21 PM
I'm sorry your son is still suffering. I think you need another opinion.
Dr. Harold L. Rekate is one of the top doctors specializing in hydrocephalus (among other things).
Call his secretary (the number's at the bottom of the page):
and find out what you need to send to him. I'm assuming MRIs, CT scans, and records probably. But, the secretary will tell you. Make sure that you stress that this is an EMERGENCY.
This guy is one of the best in the country. He'll tell you what you need to do.
I'm hoping (more than that, praying) that we get Nick balanced back to his old self again.
05-20-2007, 01:47 PM
I just found Dr. Harold Rekate's email address: Harold.Rekate@bnaneuro.net.
If you haven't contacted him yet, email is the fastest way.
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