Raffi's wicks showed no csf

[hydromom]

Hi

Well, my fear happened. The cotton swab test was negative. I waited until today and called and the clinic nursed told me that news.. I then asked what was planned next. She said the ENT is unsure if he will even do anything more at all. I could scream. The other day when Raffi was sitting there with this cotton swab up his nose, the ENT blabbed on about many other conditions,,,,such as many people get sniffy when they wake up and put their feet on cold floor. My reply was o.k and how about when he poops and when it hits 11pm and after he exerts himself, (which is rarely)... and whenever his body decides to do it?? How about after a few hour spell of the sniffles when he grabs his head and says his forehead is on fire and then has to lie down?? This is daily, from bone dry for hours to sniffles and post nasal drip. Is it right that he may not do the next test? I think I may have to ask him to give me another diagnosis, he won't be able to. These symptoms fit no other condition that I have been able to come up with. The nurse told me today that she heard him speaking to a radiologist about this and he may order a ct with contrast. He is scared to do the nuclear study. I am scared Raffi is going to get Menengitis and possibley bleed to death when they try to remove the 3 shunt catheters that are embedded in his head. Sorry , but I think the risk and his symptoms warrant further testing. What do you think?
Thanks for being here
Marilou
Also the cotton test was performed sitting up and waiting for two hours to pass, it was wet form him crying so much. No csf detected, but Raffi doesn't really drip out his nose, he is quick to sniff it back and won't let it flow/

[sadlisa]

Marilou,
I am so sorry you did not get the results you wanted. It is awful not knowing what the problem is. Do you think the pledgets were not placed in there long enough? I am to have them placed with my cisternogram for 24 hours. Because he was crying that probably is why the swabs got wet. It must be difficult knowing something is wrong and not being able to move this forward quickly. From what I have heard the CT myelogram (requires LP) is the best for locating a leak. Meningitis is a scary thing, I was there 7 years ago. I feel strong I am leaking to my sinus and have not had another bout with this disease, but if we are leaking aren't we already at risk of getting it? Is it possible for him to take a round of antibiotics when they do this test to keep his chances of getting it down. Just an idea. They also may be able to sedate him and place the pledgets if the nuclear study is ordered. Working with children can be tricky because they are scared and don't understand. I feel the doctors should listen to your concerns seriously and push the investigation forward! You know him better than they do. My good thought go your way. Stay strong for Raffi. Thia

[hydromom]

Thanks for the concern. I know he is leaking, I see it happening on a daily basis. I am having a freak out day today because I feel if they will not test further , he might have to live with this risk. I had a thought though, if they won't do it here, maybe I will bring him to the states and pay for it to be done . I would hope that it is not too expensive. I also think that the 1mm ct would be less invasive. I am guessing 2,000.00. Any ideas??
This is something that has to be dealt with. Does anyone have an idea of the cost of these tests. Also, would he need to be seen by a ENT or NS in order to get the test. Which one??
Thanks
Marilou

[fish339933]

Hi

I am sorry to hear that the test was negitive & I can also totally understand your concerns.

One thing that I would say about the negitive test is that in my case I tested negitive for csf from my nose the first time I was tested & it wasn't until a month later when my neuro decided that he was not happy with the first test that I got a positive result.

Please keep us posted

Take Care
Claire

[a real drip]

My heart breaks for you and your little boy, hydromom. I have nothing intelligent to add to this discussion. I just want you to know you and Raffi are in my prayers. How old is he? He's such a trooper--and lucky to have you for an advocate. I can tell you will not let this rest until your child is treated.

Hang in there!

[guineapig]

i know next to nothing re testing for cranial leaks. that being said, the neuroimaging diagnostics for spinal leaks are far from being conclusive. i had the ct-myelogram done, it showed nada. 3 hours later, after sitting upright in bed, it showed lumbar leakS. a good doctor knows that the tests are not necessarily conclusive, particularly in the case of false negatives (although i imagine false positives are comparatively rare).

all i can add re that test is, nasal leakers (cranial leakers) will often leak more right after getting up in the morning; more common time for the nose to gush. as you can figure, any csf which has escaped the cranial meninges has had a longer time to build up in whatever sub-dural space before evacuating (via nose, throat, eyes). also, cranial pressure is greatest when one is horizontal. when a cranial leaker goes upright, it is gravity which "forces" the meningeal-escaped csf out; when upright, the top of the head is negative 220 mg pressure. i could imagine that being well hydrated, staying down longer than usual would improve chances of catching a cranial leak in action.

to also increase cranial pressure, who remembers that drug which has the side effect of increasing csf production?

i wonder if a cranial leaker went from long time horizontal immediately to being upside down, say via an inversion table, if that would better induce noticeable, quantifiable leaking. hmmmm.