shunt infection-help

[Phoebe's Mom]

Hi everyone,

My 10 year old daughter has had her same shunt since she was 5 months old. It is perfect...well was perfect, until she developed a strep infection that was not promptly treated (oh, we were in the hospital, but they were going down some hair ball roads and missed the strep.) To make a long story short, she now has a psuedocyst around the lower shunt tube and a bit of streaking along the tube in the abdomen (as per CT scan.)

The same hospital is ready to yank out the shunt tomorrow, put an external drain in her head until the infection clears and then replace her beautiful reliable shunt with a new one.

I know this is protocol, but I am so FREAKED OUT. and scared. and I wonder if anyone has had a shunt infection and how was it treated? Anyone ever hear of infection in a 10 year old shunt before?

We've worked a long and hard to bring our daughter back from the ravages of seizures. She as been seizure free for 5 years ... :( I am so worried.

[Nat Hyland]

the only real option in Phoebe's case is to remove the entire shunt. This is because once an infection has started, the whole length of the shunt can then become contaminated. I can understand how you feel though, because I had my first revision when I was three, and then didn't have another one until I was 13 - I then had a further 4 over the following 14 years :(! Luckily it has been over 7 years since my last replacement.

But you need to do what is in Phoebe's best interests. While the thought of another operation may be scary, the consequences of not having it may be much worse.

Nat.

[gill105]

Hi Phoebe's Mum,

Im so sorry to see your beautiful daughter is going through this. I can also understand why you are feeling as you are, but if the drs feel that an operation is the best option for your daughter I think I would listen to them.

Gillian

[MegNJaxMom]

First of all, congratulations on the seizure control!

Second, welcome to our "family". I hope you find us helpful.

Third, sorry about her infection. Shunt infections do require an external drain to clear the infection. My daughter had 2 infections when we started this journey. We were in the hospital for about 3-4 weeks with each. They overdrained her, and that is when her seizures started... not sure if it was because of the overdraining or just inevitable (she was 3 weeks old). I would suggest that you request them to put in whatever kind of shunt she has now... for my daughter the programmables were the ones that repeatedly got infected. She has a low-tech medium pressure valve and it has been tickin' away for almost 4 years now.

Good luck, and if you need anything let us know!

[GTF]

I've been through that. My shunt became infected once.
It's not as bad as it might seem. The external shunt doesn't hurt.
It's a little obstacle for sleeping. No worse then having an ICP procedure.
The IV antibiotics are a little tough.
The biggest obstacle is the boredom of living in ICU for a week and a half.

[Jess]

I have had three shunt infections in my life, the most recent a few months ago. I too had a strep infection that came on becasue i got mono and my immune system was not functioning. In my case the doctor said that it was not the invading type (staph). Meaning, that it was not eating into my shunt tubing, so if i wanted i could just have antibiotics or have it taken out and replaced with a new one. I had been having pain with it, so i chose to have it removed, thinking the infection might return if i didn't. Like others have said, it is about a three week ordeal in the ICU, but will get rid of the infection. Talk to the doctors about all possible options and do what they think is the best for your daughter, because each case is different. Sorry she has to go through this. Hope all goes well.

[Phoebe's Mom]

Thanks everyone...you're wonderful!

She is going in this evening for the external drain to be put in. The good news is that the shunt tap revealed no virulent strains of staf, so we can go the "easy" route (tubing out of the side of her abdomen.) Whew! I'm feeling more optimistic.

Heather - It is really amazing that you mentioned over-draining and seizures. I've been wondering about that since this happened since at her last CT her vents were normal and when she was seizing her vent were always small. Thanks for the advice re: programables. I'm already wary of them just because of the metal factor. How the heck do you get an MRI or bone scan or...well any of the tests that my kid seems to go through. In fact...how do you get through the airport security! :-)

Nat - 4 years! Big up to you!!

Thanks again everyone. I'll keep you posted.
best,
Alex (Phoebe's mom)

[LIZARD]

We've worked a long and hard to bring our daughter back from the ravages of seizures. She has been seizure free for 5 years ... :( I am so worried.

She may continue to be. :) I had a shunt infection at 4 yo and have had occasional szs since, but on medication, they are nearly completely controlled (GM completely; simple partials about 80%).


*hug *hug *hug


LIZARD :)

[alizesmom]

Alize has been through 2 shunt infections. Waiting out the 10days of antibiotics till you can get the new shunt in is very boring since your child feels great. Good luck. Karen

[Suecr]

Hi and welcome, there is great group of people here, sorry to hear about your daughter's infection. Hope she recovers quickly and without incident. Hayley is lucky enough to escape a shunt infection. She only had a near infection after a crainitomy and they were about to cut out a piece of shull to "clean it", however it cleared in the nick of time. Anyway, not much advice, but welcome.

[MegNJaxMom]

I saw on here that some people were in ICU while externalized... Megan wasn't, but was under "contact isolation" so they all came in in the gowns, gloves, masks. Scared her because they looked weird.

I am anti-programmable until they either get better or something grand changes my mind.

Good luck, and I am glad to hear that she doesn't have a nasty infection. I lucked out on the boredom thing cause Megs was only a small infant when she had infections. She didn't care. I cared that I couldn't hold her much...