Questions about vague symptoms
 

Hi there,

I am new here and I have a daughter with hydrocephalus. She is now five and had her VP shunt fitted at four months. We are very fortunate to have had no issues with her shunt since it was fitted.

We are visiting a new surgeon in two weeks for her annual review (original surgeon retired).

I am wondering about some vague symptoms she is having and wondered if any of you might have some thoughts. She falls over a lot, she is a bit uncoordinated, but not so terribly that it requires intervention. She is bright and doing well at school. She recently got glasses and that seems to have solved the headaches she was having, so we think that was eyes related rather than shunt related.

I have noticed recently that her eyes look weird, as if they are beginning to sink into her skull, in a downwards direction. I am hoping that I might have some suggestions from any of you as to what this might be caused by so that I might have some terminology to use with the surgeon. We have to travel a six hour round trip to see him, so I want to make sure we get some answers.

So, is this eye thing a 'thing'? My other kids do not have the eye thing, it isn't typical of our family's face shape. Could it be that her shunt works too well, so to speak, and she now has too little fluid?

I don't want to mess with things since we really aren't having any significant issues as such and when we last saw this guy (thinking he was a fill in) he seemed very gung-ho wanting talking about fluid studies etc, but I don't want to not mention this eye issue and then find out it was a problem and it has been left too late.

Hi Miffy,

Clumsiness and loss of gross motor skills is a big red flag for my child, pressure is too high or the shunt is temporarily obstructed. Eye problems are something I really pay attention to, and glasses are on the horizen, but the sudden changes are not minor symptoms even tho' they are very transient episodes for her (have had four revisions, two years this month since the last one but this summer had issue that luckily resolved so shunt failure is always in the back of our minds). But it is hard when these failures are happening in slow motion, least determining which is a problem and what is within the child's normal. I understand about not wanting to do testing sometimes, it can be more traumatic for the child with little to show.One kind of less invasive testing we do every 6-9 months for our almost 8 year old is get her eyes checked out, where they dilate the eyes and look at the optic nerve and do some extra neuro checks. The surgeons at our hospital put more value in checking eyes than shuntograms (see a good ophthalmologist or better a neuro-ophthalmologist to best catch neuro issues). Consider how often your child has had imaging, that is another check on things if the child still is has some compliance (imaging is not conclusive for determining shunt failures for our child and that can become a problem for some kids shunted as infants). Be honest with the surgeon that his approach has unsettled you, he should be able to dial it down ok. Catching over and under draining has made our life more difficult as one learns on one's child, I think it has made a huge difference in our child's quality of life that we've not settled for really poor shunt settings/configurations.

Welcome Miffy. :Wave-Hello: