glucose strip turned positive

[hydromom]

Hi Everyone

I have never posted here before , so hi. I think my 7 year old has a leak. He has hydrocephalus. Doc's told us he was not depending on the shunts because the tips were not in the ventricles( he has 2). When he was around 4 I told the nsg that things were not right, but he said let's wait and see. This past August he had a revision and then a bleed and a revision. Two more revisons followed making the grand total of 4 revisons since August. Every time his shunt was malfunctioning he would get post nasal drip. For about the first week post op it would go away. When I mentined a possible leak to the nsg he said noway. "Collect some and bring it in to test". The problem was that we never saw it, only heard it going down his throat. He still does not no how to blow his nose. Well we think his shunt is malfunctioning again and the same nose problem is occuring. This time it does drip, so I bought glucose strips and it does change color. What do you think? Do you thionk the nsg will take this more seriously this time and order more tests?? Does it sound like a leak?
Thanks
Marilou

[GingerLox]

Dear Marilou, first of all, welcome. I am sorry about your child's hydrocephalus. In my opinion, it sounds very likely that he has a leak. My neuro had me check for glucose as a starting point when I first started with my chronic rhinorrhea. It was highly positive for glucose. He was convinced with that finding alone that there was csf leakage present. Of course, the next step would be to get it checked for beta tranferrin protein. Although you said there is not enough to collect. That makes things a little trickier. I would call the doc right away and tell him of your finding. I was told that there should never be glucose in nose drainage and that the only fluid that would contain glucose would be spinal fluid. I hate to think of them doing a spinal tap to insert contrast, but it might be what they have to do to verify the leak. Given the hydrocephalus, does your son get lp's often? Maybe they could combine a future lp with the contrast testing to check for a leak.
The fact that your son seems to leak when the shunt is not working, is another strong indicator. It sounds like his body may have created its own pathway. Does your son get headaches when the shunt fails? If he does not that might be one more indicator that the fluid is finding an alternative route and relieving the buildup pressure.

Please let us know how things go.
Many blessings.
GingerLox

[hydromom]

Thank you for such a reassuring response. We were at the neuro today and he did not even want to see the strips. He gave me a sterile container and asked me to collect it and they will have it tested. To hear someone who believes me gives me a sense of relief. Thanks. Can you suggest any tricks to start it leaking in order to collect some. Also, he has not had a lp for years.
I am on a mission now. I need to collect some of the fluid before I rest. Rafael is 7 and he needs to get on with life. It has been a horrible year for him.

Thanks
Marilou

[GingerLox]

Dear Marilou......................

The very best way that I have found to collect the fluid from my nose is to get a syringe, (like the type you give liquid medicine in for babies), and as it starts to drain suck the fluid out of the nose. It is so hard to catch since my drips always tends to flatten out and they don't often come out in huge gushes, just as lots of drips. I suction off all the fluid I can muster with it. It acts like a tiny vacuum.
Did they tell you all the ins and outs of fluid collection. The fluid must be refrigerated between times. The fluid, if refrigerated, only stays positive for up to 3-4 days. Therefore the hospital's time management is as important as your time management. If the hospital sends it out for testing it must be sent on dry ice as to keep it cold and not dilute the fluid. Without refrigeration, the fluid will not read accurately (positive) after 3 hours of exposure to air. I hope they gave you all that info. I found out through a matter of trial and error.
I am sorry that you and your son must go through this. How often does his nose drain?
I find mine comes in surges. I drain about seven times daily. A way that I get alot of fluid is after a sneeze. My nose drips fluid continually afterward for about 5 minutes. Maybe you could get him to sneeze? Or lay him on his stomach, with his head stretched out in front of him on a pillow. This position is supposed to increase pressure in the spinal column. Another is the valsava maneuver. Have him sit down, put his head between his knees, and lift his head as if looking straight ahead.
One more position that works wonders for me is when I am saying prayer with my daughter at night. I kneel down next to her bed and bend my head forward. Fluid always comes out during this position...........and the prayers don't hurt me either.;)
My fluid doesn't always come on demand. In my case, I believe that my leak comes from what is known as the reservoir sign. My ears drain the fluid into the back of the throat and nose when I lay down at night. It is stored there until I suppose it gets filled up. I do not believe my leak is in the frontal sinuses. Frontal leaks are supposed to be easier to demonstrate. I've never been told that by an actual frontal leaker, they may feel differently!!!!!!!!! Sorry frontal leakers!

Best wishes............and make sure you know the doctor office protocol for their part in evaluating the fluid. That may save you and your son the grief of repeating this test, as well as assure you a true positive or negative result and not one based on faulty handling.

I hope you get answers soon for the little guy. I'm pulling for you!

GingerLox