Hello world!
Hello Everyone, This is our first official post and I think I am going to give a little background on our most recent visits to the IWK in
Halifax
Canada. Destiny was diagnosed with Hydrocephalus at 2 weeks of age and has had six VP shunt revisions with her last one being just a few months ago. I knew she needed a new shunt in January 2007 after we returned from a vacation to Disney World. She started getting bad headaches, dizziness, and a general feeling of unwell. Although I knew she was having issues with her shunt it wasn’t showing up on MRI’s, CT scan’s, even an ICP Monitor for two days came back with normal pressure levels. Eventually after multiple trips to a hospital 4 hours away you feel like maybe, just maybe your gut instinct is wrong this one time. Thankfully I didn’t listen to her pediatrician say it was childhood constipation, the flu, and well basically tell me she is faking it and I am absolutely mad. I just couldn’t shake the feeling it was her shunt. She normally is very active and healthy. To see my child hibernate to her bedroom because she was too dizzy to get out of bed or the light bothered her eyes and the sheer pressure she felt with the constant headache killed me. When I was about to give in to what all of the specialists we telling me we once again got the dreadful news. We had a follow up for her post ICP Monitor. Two weeks prior to this appointment in another province a MRI was ordered. She was having a very bad day when the did the mri. When we arrived for our appointment we were told again that it must be migraines and that it is quite common in girls her age with the begging of puberty. When I asked how the MRI looked he asked when it was done. When he viewed it he saw what I have suspected for 8 months. Her shunt was not working. He then ordered a MRI to check to see what it was looking like at that moment. Well it was confirmed, her shunt was not working, and she needed to have it replaced the next day in emergency surgery. Surgery went very well, she recovered quickly as usual and here we are now. Four months post shunt revision #6 and still unsure of everything. I do think she has migraines but her last MRI was not perfect. So we are heading back to the children’s hospital for another check up. This will make 15 four hour trips each way in one year. I am so grateful that what I saw on a daily basis finally showed up on scans. Through all of this she still keeps a very positive outlook on life, even with her new “snazzy haircut”. So hear we are, full of questions and hoping and praying that this shunt will give us more then two years this time.
December 28th, 2007 at 6:34 am
I am so glad that I am not the only parent who knows when her child’s shunt is malfunctioning. My daughter started having days when she couldn’t get off the couch, slept all day, sometimes vomited, and then the next day she would be fine (she too is very active, and for her to lay on the couch all day and sleep is unheard of). She started doing this in about March or April. It would happen once a week. By August, it was still happening once a week. Calls to pediatrician, even neurosurgeon’s office… must be headaches or the flu or absent seizures. Went for EEG, no seizures. By December, she would have these episodes two to three days in a row. Went for CT, no change. Finally by January, she was still having two to three days of lethargy every week. The neurosurgeon’s office agreed to move up her April appointment to have her checked out and low and behold, her shunt was intermittently malfuctioning. And she was in the OR the next week having her shunt revised… a full nine months later.
It’s so ridiculous that parents are not always taken seriously until very late. We know our kids and know when something is wrong. Instead we had to endure nine months of not being able to commit to many activities because we never knew if Claire would have a day on the couch.
Thanks for this post!!
January 4th, 2008 at 7:27 pm
Thank you for posting your stories ladies, I was beginning to think I was the only one dealing with the same situations. The Dr’s offices made me feel like I had a screw loose every time I called about Lea’s behavior or symptoms.
Our daughter was 2 wks old when she was shunted. She is now 3 and we think of ourselves as very lucky to have not needed a revision yet. We are told it will be soon since the tube that goes from the shunt into the ventricle is getting to short as she grows. She has had 12 CTs, 4 MRIs and 3 shunt studies (nuclear med).
She would have days where her eyes had a distant stare and dark circles under her eyes. I knew it was her shunt, mom’s instinct. I began reading everything possible and watched her (like a mom does) to see if I could see any kind of correlation between her head position, weather, food, body temp (her cheeks turn real red when she’s dehydrated or hot), etc. Here is what I discovered.
Even though we can’t get a CT or MRI to show her shunt is malfunctioning, I have found that when she sleeps and her pillow is too flat she wakes up vomiting, dark circles under her eyes, pale, irritable, etc. So I make sure her head is elevated when she takes a nap or goes to sleep.
The other thing that has made a tremendous difference is making sure she’s not constipated. I read a very small research paragraph in the HydroAssoc newletter last year that said there are 2 documented cases that children with constipation can constrict the abd cavity and put too much pressure on the drainage tube which in turn will make the shunt not operate correctly. Which makes sense. As soon as I started paying attention to her abd and bowel movements (she’s still in diapers, so it’s easy to monitor, give her prune juice a couple times a week if needed) we are having less days of irritability, vomiting, etc.
Lea has done a great job with everything she’s been thru. She goes to preschool, knows her alphabet, numbers, colors, loves to run outside and jump over anything in her path.
I’m praying that when the time comes (for a revision) I can keep it together and make the ER staff, Dr’s offices, etc listen to me. We are 2 hrs away from the childrens hospital which adds to the frustration and concern.
January 18th, 2008 at 5:07 am
Hi,
I have Hydrocephalus and I would like to thank you for chasing this up with your doctor. I have been lucky compared to some stories you hear.
When I was 12 (I am now 27) I woke up one day with a headache that lasted constantly for a month. I also had the other symptoms you describe, dizzy and lethargic these were also constant. My mother went through the same problems with doctors as you had.
At about the month mark I was hoping that I would die so the pain would go away (even with all the pain meds which did not help at all), eventually my neuro sent me to get a CAT scan. It was discovered that my VP shunt had detached in my neck (due to me growing taller than they though when they put it in).
When I woke up from the operation I was so pleased that I no longer had a constant headache, even though of course there was pain from the op sites.
Since this time I have not had a problem with the shunt.
feel free to email me.