Tuesday, April 14, 2009

Neurosurgeon appointment

And so commences the merging of the blogs!
I called Avery's neurosurgery office yesterday to make an appointment for her because ever since she had that stomach virus last month she's been complaining of dizziness and headaches, which is weird. It doesn't happen every day, but some days it happens several times, and the colour will just drain from her face and she'll tell me that she feels dizzy and she needs to lie down, or she'll say she has a headache and she needs to have a nap. I asked her ophthalmologist about it last week in case it was related to her vision, but he didn't seem to think it was. So I finally got online yesterday to see whether it might be shunt related, and I just found one little paragraph here that said this:
Under-drainage, in which the fluid is not removed quickly enough and the symptoms of hydrocephalus return, is one of the commonest problems. It is usually due to blockage of the upper or lower tubes of the shunt by tissue, though it can be due to the shunt breaking or its parts becoming disconnected from each other. It is rarely due to the valve itself, which usually continues to function in the same way for years. Pressure may sometimes build up rapidly, resulting in loss of consciousness, and treatment is required as an emergency. However, in most cases the onset is more gradual, and can follow a minor illness such as a cold. Headaches increase in frequency and severity, often worse on waking in the morning. Vomiting and dizziness also occur, and sometimes other symptoms which vary from patient to patient. In these cases the parents or carers will be able to recognise the symptoms from previous episodes. Specialist hospital staff are now fully aware of the various presentations of ‘blocked shunt', but non-specialists and family doctors may not be.
So I decided to call her neurosurgeon, just in case. So we saw a lovely senior resident this morning called Dr Qandah, and he was just wonderful! I hope he still treats his patients the same way 10 years down the line - he was attentive, he paid attention to what I was saying and didn't dismiss my concerns, he was fun for Avery to talk to, he was just great.
Anyway, basically, here's what he said. He didn't really feel the need to do a scan of any kind at this point, since it's obviously not a major shunt failure, and he doesn't think it's likely to be a shunt-related problem at all. Good news. He does want us to pay close attention to it though, and wants me to keep track of when it happens and how often, etc. He wants to see us back in a few weeks, and he referred us to a pediatric neurologist because he thinks it sounds like there may be some seizure activity. Not so great news. But at this point I think I would be rather surprised if that were the case. We have taken Avery to a neurologist to test for seizures once before, when Avery was almost a year old, because she'd been having night terrors for several months, but they thought she was too young to be having night terrors so thought it was more likely to be seizures. She had a sleep deprived EEG (it was a joyful experience.....) and it showed no seizure activity, and that was actually the end of the night terrors, oddly and blessedly enough! But don't you think it would be strange for her to start having seizures of any kind now? I mean, she's never had them before, and I haven't seen any thing thats made me think she's seizing - she does sometimes go into little dazes or whatever, but she'll always snap right back out of them if I talk to her. And I haven't noticed anything wierd preceding her little dizzy spells. Of course, I'll be paying much closer attention now. It happened once today after her appointment. We were driving to physical therapy and she said "I feel sick" I asked her where she felt sick, was it her stomach? and she said "No, I have a headache, I need to go to sleep." I asked her where her head hurt, and she pointed to the back right side of her head, near her shunt. I asked her if her shunt hurt, and she said no, it was her head. But then we got to therapy, and she was still a little pale as we were walking in, but by the time we got up there she seemed to be feeling better again. So I don't know what's going on, or whether I should be worried about it, but hopefully we'll be able to figure it out soon! I know that quite a few of you I know from my other blog have children who deal with seizures...do any of you think that this sounds anything like seizures? I just finished reading a little bit about complex partial seizures, which sounds a little tiny bit more plausible than the kinds of seizures I was previously aware of, but I still think that I would have to realise if my child was having seizures....wouldn't I???


Grandpa said...

Thank you for the update. You're dealing with stuff I never had to.

overseas grandma said...

Thank you, darling, for this detailed account of what's going on. The Doctor sounds lovely and would have, as everyone who meets her is, been delighted by the bright little thing she is. The one good thing about all this is that she is old enough to tell you how she feels and where it hurts. No parents could be more watchful and careful of their child than you and Gabe are, which is a great comfort to me since I'm so very far away. Remember Heavenly Father is her parent too and will want to be involved, a blessing can be a comfort not only to her but you and Gabe also.
Give her love and loads of kisses from me, she is already daily prayed for by her Grandma but I shall just open my heart up to the Lord even more.

Kristen said...

Cayman has never been diagnosed with seizures so I can't offer any thoughts on the matter. However, she has had several shunt failures.
It seems to me that if it was a true shunt failure for Avery, the headaches wouldn't come and go. They would remain unless the shunt is getting blocked, and then unblocks, then blocks again, etc. That has happened to Cayman's shunt before.

Lisa said...

Elisabeth has seizures of many varieties......including what you were describing when she goes into a daze and then snaps out of it. So it might in fact be some sort of seizure activity. I'll pray not though... :)

I'm am glad you took her in to get checked out. Better safe than sorry!

pamsnest said...

I find that rather disturbing, as all you are getting is I don't think its this or that. Keep a note of everything she feels poorly over, and what she's been up to just prior to feeling sick etc.Is it car sickness, certain food etc. A pattern may then emerge.
Hope your move goes well. The house looks lovely.

Syme Family News said...

I sure love Avery. Keep us posted on what is decided and if you need anything, but most of all know we are here. I will pray for you.

Stefani said...

Audrey was misdiagnosed with seizures by her old Neuro because her eyes would flutter and jump uncontrollably. Her new Neuro said that by looking at her EEG results, her other doc misinterpreted them and we gradually took her off the meds. Although, he did say that Hydro babies have a 60-70% chance of developing seizures in their lifetime.
I pray though that this is not the case with Avery.

Cassandra said...

Hey there how are you. Kindrid has done this sometimes and spooked me in the past. No seizures that I know of. I think it is a flux in the spinal fluid that may cause it. This is just my opinion.
Take Care.


Katy said...


Honestly, it sounds kind of like she had a migraine headache. Our neuro says that if they can snap out of it when you talk to them, then it's probably not seizures.

My thought on seizure is this--your mommy alarm will be going off big-time. The first time I saw Charlie seize I KNEW it was something bad. Took me a while to figure out exactly what, but my mommy alarm was going full blast. Oher times I feel a little nervous or worried and that usually ends up being a cold or an off day.