HI, my name is Barbara and I am the mother of a 5 year old with Hydrocephalus. She was diagnosed at 5 months, and a VP shunt was placed. We had no problems whatsoever until this past June. The tubing in her chest started to bother her, the area became all red and painful, the pain and redness started to move up her neck. She was put in the hospital, shunt removed, tried third ventrical (?), you know what I mean. Didn't work so she had a new shunt put in. That was 3 months ago. All of a sudden she is getting headaches almost daily, they come on fast and then she sleeps. Any idea what this is? She has no fever and nothing else hurts. The headaches are throwing me because it's not all the time and it's not every day. Is it malfunctioning? I'm going to call her doctor and take her in for a CT Scan tomorrow, but my mind is all over the place. The last time we were in the hospital we were there for 2 weeks because it was infected. If it's malfunctioning do you still have to stay in the hospital that long to replace it? Help, I'm losing my mind. I work, I have 2 other children and I'm just so confused. We have all been sick recently with bad colds, she's loaded with phlem but not in her head, more in her chest. I read yesterday that a lot of people get headaches when they are sick, would they be like this?

I look forward to any insight anyone can give me.

Thanks Barbara

Hey, Barbara.

I think you put your finger on it. If she has a cold/upper resp thing going on, it can certainly increase her intracranial pressure enough to trigger a headache that may seem to mimic shunt malfunction. If she has no other symptoms, that's probably all it is. Severe congestion can bring on killer headaches for us because they raise ICP in everyone, but since we have a greater sensitivity to it, the consequences are far greater. An annoying headache from such congestion for someone who doesn't have hydro can quickly become one that could kill a horse for us. The immunity system's effort to fight the illness off can also, as you probably know, be exhausting. Add the ICP increase to that, and it's the brain's way of saying, "UGH...I can't work under this pressure!!" so fatigue and malaise set in. As long as she improves over time and her awareness (when she's awake) is good (i.e. she knows where she is, what day it is, etc), she should be okay. If she worsens, or other symptoms such as confusion, seizure, or persistent vomiting occur, call the nsg and get her checked out.

((((((((((((((HUGS)))))))))))))))),

LIZARD

Thanks so much for your response, I have been reading this website all weekend looking for some insight. It's so nice to have you people here to help. People who know what it's like. Jenna was very sick 5 days after birth, she had a really bad infection, they didn't think she would live. She spend 3 weeks in ICU. She had Septic Shock and DIC, many adults can't survive that but she did. She is truly a miracle. So at 5 months when they told me she had Hydrocephalus, I was just glad it wasn't anything worse. I was comforting the doctors. I look at it like as long as she's here it's all good. We were blessed with the fact that she had no developmental problems whatsoever. No other problems at all. She is by all means a normal 5 year old and brings joy to our entire family. So when I see her in pain, it kills me. I never gave it a second thought as to what living with Hydrocephalus the rest of her life meant. Now I am starting to realize. I am glad you are all here to help.

Much appreciated

Barbara

hi barbara,
ive too got a vp shunt, mine malfunctioned 3 weeks ago and i have it replaced immediately.

i was sick all night, constatly i was unable to keep down medicine and liquids and had a blinding headache. also it was very had to wake up and open my eyes. these are all signs of a malfunctioning shunt...i was lucky enough to have been in hospital that night, otheriwse i probably would have been dismissed as having a migraine.

i had my shunt revision in the morning and i was out the next day, as a typical revision patient is out 24 hours after surgery =]

im sorry to hear about your daughter and hope this is sorted out sooner than later, best of luck to her, you and your fmaily. take care x

Hi:

I have had a VA shunt for 50 years. The infection that you speak of was meningitis and it takes 14 days of IV drugs to clear it from the system and the shunt is often replaced as the result of the infection. Shunt replacement surgery is serious surgery and most will stay a few days to insure that the new shunt is functioning properly. The headaches and the sleeping you talk about could be symptoms of a malfunction. The ct will tell whether the shunt is over draining or under draining. It has happened to me in the past. Sometimes it will clear up on its own and go away. The best thing to do is get the ct and see if they can determine the nature of the problem and go from there. I wish you and your family well and hope all works out for you.

I totally understand your frustrations. I have also been there. My child had a shunt placed when he was 3 months. He had brain hemorrage after having his valve opened due to a congenital defect. His shunt was ok but it was blocked just after 7 months. He had shunt revision in 3-07 and has been ok but last week, we had taken him to er for ct scan since he had fever and headaches. Ct was normal but he still had headaches and we were scared and confused as to if this is just a viral infection or what? I know how you feel because any time he complains of headaches, my husband and I are literally on our toes. My 5 year old like your 5 year old is a very happy and active and bring so much joy in our life but to see him suffer tears me apart. I know that the shunt has saved my child's life but the malfunction symptoms mimic the cold symptoms at times and I am always worried when he has a cold and complains of headaches, I totally fall apart. I wish you and your family all the best. Hope she gets over it.