Hydrocephalus Symptoms - Not by the Book

Hi All,

I just wanted to report that Jessie is doing so much better since her shunt
placement, and her neurologist is beginning to reduce Tegretol again, since it
turned out to not be seizures (even though it looked like seizures).

So, I have made a note of her pre-shunt symptoms, and noted which ones are
influenced by the shunt...or at least the best we can tell. This is not
science, but one parent to another to say "this is what we've observed". I hope
that it is useful in some way.

1.) rocking - Much Better, less rocking, even when she is excited.
2.) nervous hands - no noticealbe change
3.) hand strumming - completely gone (Many of you saw this at the Hemi Family
Retreat. She doesn't do it at all any more)
4.) tummy episodes -reduced significantly
5.) vomiting - reduced significantly
6.) biting clothes - gone
7.) hurts when we rub her neck - I don't think this is related
8.) left bug eye - gone
9.) behavior - Ideal Behavior
10.) ventricle size - Waiting for yesterday's MRI
11.) nose wiping - Gone
12.) lip picking - Still does it
13,) lip / finger preseverating - Less, but not gone
14.) general nervousness - Better
15.) bad short term memory - Better (She recently memorized a 14 line, 4 verse
poem called "I am Responsible for Me".
16.) loses focus - Better
17.) Startled Easily - Gone

So, what looked exactly like seizures a couple of months ago turned out to be
hydrocephalus. Or maybe the pressure was actually causing small seizures as
the brain was compressed. But the bottom line is that things are getting
better.

Thanks for all of your support and encouragement.

Cris
Jessie's Dad (R Hemi in 2008 for RE, L VP Shunt in 2010)
"Hope in One Hemisphere!"

Back Home and Jessie is Doing MUCH Better

Right Now, Jessie is in the living room and I am typing at my desk. The reason that I know that she is feeling much better is because she is giggling like a little girl as she watches iCarley. Well, and also that and she can sit up without getting a headache or barfing...

If you would have asked me 1 month ago what was going on, I would have told you 100% seizures, but the MRI told a different story. It just goes to show you that what you see on the outside, in terms of clinical symptoms, aren't always what you think. The brain is a very complex organ...even a half of a brain.

Hopefully as Jessie adjusts to the new "Normal" pressure, the old symptoms will be a thing of the past.

For those of you looking for Details about the shunt, it was a low pressure shunt and it was placed on the good side of her brain. Not sure of all the logic behind this, but it was what Dr. Carson suggested to Dr. Donahue. There can be many arguments made to put the shunt on the Hemi Side as well as the normal side of the brain. Who knows what might be the best method, best type of shunt, etc....

Thanks again for all of your support, prayers, and thoughts.

God Bless,

Cris

Back at Cook Children's

Unfortunately, Jessie is back in the hospital. We took her into the ER on Sunday after she began to dehydrate. She has been unable to keep much liquid down since surgery on Thursday. Her last meal was on Wednesday. The poor kid has been without food for almost a week. She has kept small amounts of liquid down, but not nearly enough, so she is on IV fluids.

Dr. Donahue says that it is her body getting used to the lack of pressure on the brain. It is possible that this is the case, and we hope for a better day tomorrow. It is also possible that the new shunt is overdoing it's job and draining too much CSF (cerebral spinal fluid).

I wish that I had more information and better news.

Thanks to everyone for the prayers, cards, and gifts for Jessie.

Jessie has all that she needs. I ask that if you feel like you want to do something, please don't send gifts. Instead, please donate to one of the following organizations:

The Hemispherectomy Foundation : http://www.HemiFoundation.org
(Dedicated to children and families who have endured Hemispherectomy Brain Surgery)
or

The RE Children's Project : http://www.rechildrens.org
(Dedicated to finding a cure for Rasmussen's Encephalitis )

God Bless,

Cris

Jessie is Home from the Hospital

Jessie is home from the hospital after a successfuly shunt placement for hydrochephalus. While we had no choice but to have the shunt placed to relieve pressure on her brain, there is now a whole new set of things that we have to watch for.

Right now, she is having a very difficult time keeping down food and liquids. We have to take it very slow, and she mostly has to lay on her back. When she sits up, she will get sick and throw-up everything that we've spent the past hour trying to get her to hold down.

If she doesn't start holding things down better by Monday, we may have to put her back in the hospital. I'm really surprised that they sent her home so quickly, but they did.

Right now, our biggest concern is that the shunt is overdraining and she actually doesn't have enough spinal fluid and pressure.

Thanks for all of your continued prayers.

Cris

Brain Surgery #2

Jessie has been going down-hill lately, as the hydrocephalus continues to get worse. Last week, it seemed like tegretol was calming things down, but now, her episodes are getting more frequent again, even with an increase of Tegretol.

Dr. Carson (Hopkins), Dr. Mathern (UCLA), and Dr. Donahue (Cook Children's) all agreed that we need to go ahead and move forward with surgery to place a Shunt in Jessie's Brain to relieve the increased pressure and build-up of spinal fluid. Surgery is scheduled for Thursday, Aug. 5th at Cook Children's Hospital. Dr. Donahue will be performing the surgery.

Here are a few links if you are interested:

http://www.nlm.nih.gov/medlineplus/ency/article/003019.htm

http://www.umm.edu/ency/article/003019.htm

This video is kinda graphic, but very cool. http://www.youtube.com/watch?v=0h7Xa-Lsnac

Most literature outlines several symptoms of hydrocephalus, which quite frankly, we haven't seen. These are usually things like headache, dizziness, sleepiness, and vomiting. She has really only exhibited some vomiting. She has had none of the other symptoms. We believe that her pressure has built very slowly over the past two years, and therefore, she has been able to deal with it pretty well.

I've outlined the things that we have seen over the past two years, which may be attributed to building hydrocephalus. This doesn't mean that just because your child exhibits these that they may have hydrocephalus, but it may be worth exploring with your child's neurologist.

1.) rocking
2.) nervous hands
3.) hand strumming
4.) tummy episodes
5.) vomiting
6.) biting clothes
7.) hurts when we rub her neck
8.) left bug eye
9.) behavior
10.) ventricle size (obvious on MRI or CT )
11.) nose wiping
12.) lip picking
13,) lip / finger preseverating
14.) general nervousness
15.) bad short term memory
16.) loses focus

Currently, we do not believe that Jessie's symptoms are seizures. That is our prayer. We also pray that the surgeons and staff at Cook's Children's Hospital do the very best that they can to get us through this bump in the road. We pray for no infections, no complication, no over-draining, and a quick recovery.

God Bless,

Cris