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
Saturday, August 7, 2010
Tuesday, August 3, 2010
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
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
Thursday, July 22, 2010
Good News!! Hydrocephalus?!?!?
Hydrocephalus is basically the build-up of cerebral spinal fluid (CSF) pressure in the brain. If you are interested in reading more, here is a link in Wikipedia, but it is very frightening stuff, most of which doesn't apply to Jessie. http://en.wikipedia.org/wiki/Hydrocephalus
So what does that have to do with Jessie? Well, the neurologist (epileptologist)/neurosurgeon at Cook Children's Hospital now believe that Jessie has Hydrocephalus. Evidently, the MRI that was taken yesterday (Wednesday) was very telling. Also, Dr. Perry (Epileptologist) was nice enough to call us immediately after he read the MRI, and let us know his finding.
What he said, was that their diagnosis of seizures was only from the clinical presentation of episodes that looked very much like seizures, and that the EEG didn't show seizure activity after a close look. The MRI, on the other hand showed signs of Hydrocephalus that could explain all of her symptoms. The main thing that they noted was that the ventricles were significantly large than they were a year and a half ago. Indicating increased fluid and pressure.
So why is tegretol slowing down the episodes? We'll evidently, the soothing effect of Epilepsy medicines can do that when the brain is irritated from the pressure. The interesting thing is that Jessie has had the tummy episodes since immediately post surgery, so she has probably been dealing with this mild hydrocephalus for a couple of years. There is really no way to know for sure.
What do we do next? Well, Dr. Hunnicut said that he needs to put a shunt in. A shunt is like a tiny tube in Jessie's brain that helps regulate the pressure. Many hemi children have one, but we hoped that Jessie would not, because they can malfunction and need adjustments, etc... Without it, however, hydrocephalus can cause brain damage.
So, now we have an opinion from Cooks in Fort Worth. Next stop Johns Hopkins and UCLA. Luckily we don't have to actually go there. We are having all of Jessie's tests sent to Johns Hopkins and UCLA. The Doctors at Hopkins (Mathern/Sankar) and the Doctors at Hopkins (Carson / Vining) will look over the data and come up with their opinion. If they all agree with Hydrocephalus, then will will schedule surgery sometime in August for a shunt.
Shunt surgery is a short brain surgery and not nearly as invasive as a Hemi Redo. You can read about them online if you are interested. We plan to stay at Cooks for the shunt surgery if needed.
So if the hospitals don't agree??? We'll cross that road if we have to.
The take away from this confusing blog post is Good News. Things could have been much worse had Jessie needed a Redo Hemi Surgery to get missed tissue and connections. And things would have been really bad had she had seizures originating from the good sign of her brain, or God forbid, Bilateral Rasmussen's Encephalitis.
Hydrocephalus?? Who would have thought it?
Thanks to everyone for reading and keeping up with Jessie. I want to let you know that she is in GREAT spirits and still has that great smile on her face all the time.
Cris
Jessie's Dad
So what does that have to do with Jessie? Well, the neurologist (epileptologist)/neurosurgeon at Cook Children's Hospital now believe that Jessie has Hydrocephalus. Evidently, the MRI that was taken yesterday (Wednesday) was very telling. Also, Dr. Perry (Epileptologist) was nice enough to call us immediately after he read the MRI, and let us know his finding.
What he said, was that their diagnosis of seizures was only from the clinical presentation of episodes that looked very much like seizures, and that the EEG didn't show seizure activity after a close look. The MRI, on the other hand showed signs of Hydrocephalus that could explain all of her symptoms. The main thing that they noted was that the ventricles were significantly large than they were a year and a half ago. Indicating increased fluid and pressure.
So why is tegretol slowing down the episodes? We'll evidently, the soothing effect of Epilepsy medicines can do that when the brain is irritated from the pressure. The interesting thing is that Jessie has had the tummy episodes since immediately post surgery, so she has probably been dealing with this mild hydrocephalus for a couple of years. There is really no way to know for sure.
What do we do next? Well, Dr. Hunnicut said that he needs to put a shunt in. A shunt is like a tiny tube in Jessie's brain that helps regulate the pressure. Many hemi children have one, but we hoped that Jessie would not, because they can malfunction and need adjustments, etc... Without it, however, hydrocephalus can cause brain damage.
So, now we have an opinion from Cooks in Fort Worth. Next stop Johns Hopkins and UCLA. Luckily we don't have to actually go there. We are having all of Jessie's tests sent to Johns Hopkins and UCLA. The Doctors at Hopkins (Mathern/Sankar) and the Doctors at Hopkins (Carson / Vining) will look over the data and come up with their opinion. If they all agree with Hydrocephalus, then will will schedule surgery sometime in August for a shunt.
Shunt surgery is a short brain surgery and not nearly as invasive as a Hemi Redo. You can read about them online if you are interested. We plan to stay at Cooks for the shunt surgery if needed.
So if the hospitals don't agree??? We'll cross that road if we have to.
The take away from this confusing blog post is Good News. Things could have been much worse had Jessie needed a Redo Hemi Surgery to get missed tissue and connections. And things would have been really bad had she had seizures originating from the good sign of her brain, or God forbid, Bilateral Rasmussen's Encephalitis.
Hydrocephalus?? Who would have thought it?
Thanks to everyone for reading and keeping up with Jessie. I want to let you know that she is in GREAT spirits and still has that great smile on her face all the time.
Cris
Jessie's Dad
Saturday, July 17, 2010
Complex Partial and Simple Partial Seizures Confirmed on EEG
During the past 24 hours, the neurologist at Cook Children's caught enough on the EEG to Confirm that Jessie is having Complex and Simple Partial Seizures. Weekends at the hospital are slow, so we don't have a detailed report yet, but we hope to find out on Monday more info such as origin point of seizures, and how many subclinicals seizures are going on.
We pushed the button (seizure button) 10 times just in 24 hours, so there are a lot that we saw and probably more that we didn't.
She is on Tegretol again, started today, and the seizure activity immediately went down. We'll see what Tegretol does over the next few weeks, as we get a new MRI, and as 2nd/3rd opinion.
Right now, we don't know the next steps, and that could take weeks to determine. We appreciate all of your prayers as we work through this difficult time.
On the positive side, Jessie is in GREAT spirits, as always. She loves life and is still the happiest kid that I know.
Blessings!
Cris
We pushed the button (seizure button) 10 times just in 24 hours, so there are a lot that we saw and probably more that we didn't.
She is on Tegretol again, started today, and the seizure activity immediately went down. We'll see what Tegretol does over the next few weeks, as we get a new MRI, and as 2nd/3rd opinion.
Right now, we don't know the next steps, and that could take weeks to determine. We appreciate all of your prayers as we work through this difficult time.
On the positive side, Jessie is in GREAT spirits, as always. She loves life and is still the happiest kid that I know.
Blessings!
Cris
Thursday, July 15, 2010
Seizures or Not? Unfortunately it Looks Like Seizures
Over the past two years, Jessie has been seizure free. Occasionally, she would have an upset stomach, but for the most part, we attributed this to GI issues. They were short, and didn't disrupt her ability to live a normal life.
Starting last Sunday, she began to get a twitch in her right eye during these episodes, so we immediately went to her pediatric epileptologist at Cook Children's Hospitl, Dr. Malik. We were so thankful that he got us so quickly. Jessie also underwent a 30 minute EEG. Nothing showed up on the EEG, and so Dr. Malik suggested that we wait and see what happens. We agreed.
Yesterday, we captured a video of one of Jessie's Eye episodes. She is now having them a couple of times per day. They start with an upset stomach and she sometimes vomits, then this right eye twitching begins.
Click Here to View on YouTube : http://www.youtube.com/watch?v=LUIu5TUFllU
The only reason that she is touching her nose, is because we ask her to do this to try to suppress the activity. It obviously doesn't work.
After seeing this video, Dr. Malik believes that they ARE seizures, so Jessie has been scheduled for a Video EEG and some time at Cook Children's Hospital's Epilepsy Monitoring Unit. She will be there starting 1st thing Friday morning.
I have always been very honest on this blog, and I will continue to be so. When things are going good, it is fun to read, but when things are bad, not so much.
Thanks to all of you for your prayers over this difficult time. Please continue your prayers for Jessie and God Bless you for your words of support.
Cris
Jessie's Dad
http://www.hemifoundation.org
Starting last Sunday, she began to get a twitch in her right eye during these episodes, so we immediately went to her pediatric epileptologist at Cook Children's Hospitl, Dr. Malik. We were so thankful that he got us so quickly. Jessie also underwent a 30 minute EEG. Nothing showed up on the EEG, and so Dr. Malik suggested that we wait and see what happens. We agreed.
Yesterday, we captured a video of one of Jessie's Eye episodes. She is now having them a couple of times per day. They start with an upset stomach and she sometimes vomits, then this right eye twitching begins.
Click Here to View on YouTube : http://www.youtube.com/watch?v=LUIu5TUFllU
The only reason that she is touching her nose, is because we ask her to do this to try to suppress the activity. It obviously doesn't work.
After seeing this video, Dr. Malik believes that they ARE seizures, so Jessie has been scheduled for a Video EEG and some time at Cook Children's Hospital's Epilepsy Monitoring Unit. She will be there starting 1st thing Friday morning.
I have always been very honest on this blog, and I will continue to be so. When things are going good, it is fun to read, but when things are bad, not so much.
Thanks to all of you for your prayers over this difficult time. Please continue your prayers for Jessie and God Bless you for your words of support.
Cris
Jessie's Dad
http://www.hemifoundation.org
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