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Wednesday, December 26, 2012

Christmas, ketogenic Diet...

We had a nice quiet Christmas at home.  We normally go to my mom's house on Christmas day but she is visiting my sister Mary and her family in VA.  We didn't do anything and ate when we felt like it, didn't even really cook.  It has been a long time since we did that.  Becky brought the kids over to get their gifts and stayed just a little while.  We did the big Christmas Eve dinner with Chuck's family here so we wouldn't have to take Hannah out and get her back in time to do her meds etc.  Our grandbabies had  a lot of fun opening presents.  Thanks to the hospital and RMH while we were there I got a lot of their gifts there.
  Hannah has a UTI so we had to start her on bactrim.  She had ecoli in her urine and it was only sensitive to bactrim.  But, it is low on the ketogenic list so her ketones have dropped a lot.  She finishes it on friday so I hope the ketones go back up then.  She had 5 seizures in a 12 hour period for the nurse on Saturday night.
  I did talk to the NP from neuro Monday and she said that they saw 12 seizures on the 48 hour eeg and from her description, they are her usual seizures.  I didn't see her have that many so some of them must have been subtle.  Thankfully she isn't having as many seizures as I thought, but that is more of those than I realized.
  Hannah has also been constipated really bad and finally had some bm yesterday.  But we can still feel some in her belly, so please pray she can get rid of that herself without being impacted.
Hannah at church Sunday, tried to get a pic of the lace on her shirt but she kept putting  her hands in the way

Hannah with her tie dye peace pillow pet and giraffe she got for Christmas (things I picked out at the hospital.
  Other than those things she has been her usual complicated self...she writes her own rules and doesn't like to follow anyone else's rules  :)

Monday, December 17, 2012

Dial Holiday Foaming Hand Wash


Dial provided  a free sample of their Holiday Foaming Hand Soap for this post.  My participation is voluntary and my opinions, as always are my own.
 What fun decorations on the bottles.  I got one with a snowman on it and looks really looks cute in my bathroom with the snowmen decorations I have.  The other one is candy cane, I have that one in my kitchen.  Both really look nice and bright for the holidays.  I love the foaming hand soap it saves me a lot of money.  the soap inside is red so it is very festive.  I haven't found  a refill in that color for it yet.  I will leave these out all winter since they aren't just Christmas patterns.  I love using cute soap bottles too and these are not expensive at all.  The formula kills 99.99% of germs  which is very important to me.  I have a daughter who is medically very complex and is very susceptable to germs.
  You can find info about the hand soaps on the  Dial website.  Or you can find them on https://www.facebook.com/Dial   Dial, Healthier Skin, Healthier You!
My kit still in the box

A close up of the bottles

The snowman in my bathroom

The candy cane in the kitchen

Sunday, December 9, 2012

Days 9 - now of the ketogenic diet :)

Things have been really hectic since day 8 and the port surgery...first off we are HOME!  Got home about 4pm on friday.
  After Hannah's surgery, her ketones dropped from a high of 160 (good) to a low of almost nothing!  The only conncetion we can find is since she has von willebrand disease, she has to have von willebrand factor through the IV for 4 days to allow her blood to clot.  There must be something in the factor, it says it is a glycoprotein.  The nutritionist said it must have some fat in it or something.  After the last dose on thursday night, her ketones are slowly going back up.  I think they are about 60 right now. 
  She has kept them guessing since we were admitted.  The nutritionist, Nicole, said she knew Hannah would be different than most kids on the diet but she didn't realize how much different  LOL  they had put us on the red team, they deal with neuro.  We are upset that they didn't put us on our gold team (medically complex)  since neuro didn't do anythng for us.  and they had to keep consulting others about what to do...the gold team would know what to do.  I did run into dr M in the cafeteria and told him, he asked if there was anything he could do then but we were going home the next day so I told him we were good right then.
  When she was in metabolic alkalosis, they took her off her sodium bicarb but when we left they put her back on it.
  It has been busy getting all her prescriptions changed over to ketogenic friendly ones.  Every change, medical assistance fights and says it needs to be pre authorized...coming home late friday to find out that 3 of the need pre auth and 1 is no longer avaiable!  Now, I get to make a lot of phone calls tomorrow.  Also  one of nurses took Hannah's folic acid from me and they didn't give it back to me, so they are going to mail it to me.
  She is on 4 feedings a day and overnight only water, that helps keep her in ketosis but the overnight water is running out at 3 am so I need to get that fixed.  Before she was on 3 feedings and overnight.  Making up her formula every morning is so much fun...not!  I have to use a gram scale and it has to be calculated with everything we use...she gets keto cal liquid 327 grams, beneprotein 5 grams and 148 grams of water.  That all has to be shaken really well, it tends to clump.  Each feeding gets 120 ml of formula mixture and 120 ml of water.  The water is important in this diet, they can get kidney stones and we don't want that!
  It felt so good to get in our own beds and the shower felt even better   :)    Today we got to go to church, we missed it the last two Sundays.  Things are slowly getting back to "normal".

Tuesday, December 4, 2012

Day 8 of the Ketogenic Diet

Hannah had her port placement this morning.  They called really fast to take her so I didn't have warning...later the surgeon said he moved his schedule around so he could get it done quicker.   She did much better than he thought she would.  i found out this morning because of her bleeding disorder (von willebrands)  she had to have the factor of it before surgery and 3 days after..so we will be her til friday.  but that is kind of a mute point right now, she is not in metabolic acidosis, it is metabolic alkalosis.  So they have are reducing her sodium and stopping her sodium bicarb.  They need to watch that now, in the past without the sodium bicarb she has gone into metabolic acidosis :)
  Her blood pressure has been up since surgery so she seems like she is in some pain.  they gave her some  morphine to see if that would help.  She has been asleep since I got back from dinner. Normally when she has surgery she is already on pain meds, but this was quicker than the rest.
  Thanks for your continued prayers
joan

Monday, December 3, 2012

Day 7 of the ketogenic diet

Hannah's ketones are 160 now!  80-160 is where they want her to be.  Her blood gases today were a little abnormal so she is in metabolic acidosis.  They just need to watch her to see if they need to increase her sodium bicarb.    She has done this before and is one of the things I was worried would happen during the diet.  We won't go home til they get that under control.
  She is probably having surgery tomorrow morning to have a port put in for blood draws.    They were checking her clotting factors today since she has von wilebrands  a bleeding disorder too.  The nurse is going to check for me to make sure.  I will post more tomorrow.
joan

Sunday, December 2, 2012

Days 5 & 6 of the ketogenic diet

Things are about the same, ketones are staying around 80.  That is the low end of where she should be.  Her heart rate is still a little higher when sleeping but neuro said that could be because she is in a fasting state almost dehydrated, so that could be a new normal for her.  It's running right around 100 and usually it's 70's to 80's when sleeping.
  Her eyes are much better with the ointment they are using.  If we go home on them I am asking for drops, the ointment is so messy.
  They said surgery should be coming by to talk to me about a port.  If they can schedule it I would rather stay one more day than have to come back.  We live so far away this will give us extra assurance if her levels are off too much and we need to check her blood.
  Her sodium level was low so they gave her extra and now it's a little higher than usual so they are going to reduce it a little.  They have already cut back on her seizure med, trileptal.  We had talked to neuro and nephrology about getting her off of it since it can cause low sodium levels.
  I think she is doing pretty good considering all that is going on.
joan

Friday, November 30, 2012

Day 4 of the ketogenic diet

So, this morning still not many ketones but this afternoon her level had finally gone up to 40!!  The nutritionist said she was ready to celebrate!  they are giving all her formula in 4 feedings and just giving her water overnight and it seems to keep her in a better fasting mode.  So now we watch her this weekend and may not go home until monday but at least not til Sunday.
  She might have a bug of some sort.  Over the weekend she had a lot of secretions and drainage from her eyes.  we assumed it was allergies, no fever or anything but when we got here on Tuesday, it was better. Allergy said it shouldn't be her allergies right now but they did put her on claritin.  Now she has some nasty looking secretions from her trach and green drainage from her eyes (they started eye drops yesterday) and now some diarhea but that could just be from her meds.  So we are just waiting to see how she does.
  we really want her to get a port for access for bloodwork but they wanted to make sure her sodium levels were ok.  I told them I would rather stay an extra day to get that done than have to come back again and get her exposed to more germs.  At least here she is on contact precautions for her MRSA.
joan

Thursday, November 29, 2012

Day 3 of the Ketogenic Diet...much better!

This morning after 48 hours and almost 24 of fasting, Hannah finally has ketones and her glucose level is going down.  they both have a ways to go but they are trending in the right directions!  No teaching today so it has been a pretty quiet day...except for blood sticks and her blood keeps coming :(  lots of mess..Hannah is a hard stick and her tiny little veins roll but she also has a bleeding disorder so   once it starts, it's hard to stop...can't win.
 At least she is finally headed in the right direction..now we have to pray that insurance covers all the meds and things that she needs...glucometer, vitamins, etc.
joan

Wednesday, November 28, 2012

Day 2 of the ketogenic diet...frustrating!  Hannah should at least be in a a little bit of ketosis by now, but she is not!  So now she is fasting for 24 hours to help that.  So instead of going home on friday it will be at least Sunday.
  She  is doing ok other than that.  Talked to her medically complex dr today and he wants to go ahead and    get a port for blood draws..it was really bad yesterday and today they squeezed blood out of her finger after a blood sugar check.
  As usual, she likes to be difficult!  LOL
   the  supervisor from the nursing agency was here today for teaching of the ketogenic diet and how to use a glucometer to check her sugar levels.  A lot to learn.
Joan

Tuesday, November 27, 2012


Day 1 of the ketogenic diet...very stressful.  They told me to be here at 9:30 or 10:00 to be admitted and if a room wasn't ready, they would send us to day medicine.  When I went to admitting they said I was an hour early and didn't   need to be here til 11:00.  So we went to day   med.  They called and said they had a room..so the elevator stopped at the 2nd floor and when i went to get off the day nurse med said we are going to 3C.  I told her we can only go to 2A since Hannah has a trach so when we got there, they called 2A and they weren't expecting us...so we came to the floor and had to wait for them to move 3 kids around to make room  for us (she is MRSA positive) Finally we got a room, they laughed and said we got upgraded! We are in a private corner room, the only room with it's own bathroom.  We were in this room 2 years ago and were  here for a month.  She had spinal fusion 2 years ago yesterday and while in surgery, she went into kidney failure and had to have dialysis!
  She  just got her first feeding of ketocal...a ratio of 3 to 1. they will watch her ketones and will slowly increase the feeding til it's full strength.  She has to be at her regular feeding schedule and have normal labs to go home.
  The IV team came in and almost gave up on giving her an IV,  they were shocked at how much her veins rolled and how she could wiggle her arms and make them roll more.  so we are protecting that IV.  I think I need to approach having a port put in again.  the ketogenic diet is going to have us doing more labs  than usual.
  They were full at the ronald mcd house and didn't have  a room for me but the social worker called today and they had some check outs so they finally had a room for me, thankfully.
  I will update more as things change.

Wednesday, October 31, 2012

Purex plus Oxi Detergent

PurexPlusOxi.jpeg

I got a chance to try out the new Purex Plus Oxi.
this is an awesome product, it's Purex detergent with Zout stain remover.  You can also use it as a pretreater.  I used it on Hannah's blanket that had some stains on it.  It got it out right away and left a nice smell.  Chuck doesn't like "flowery or girly" scents but he liked this new one.
  Post the link to this post on your facebook page for a chance to win  a coupon for a free bottle of it. "Joan's blog sent me for a chance to win a free bottle of Purex plus Oxi"
Purex is running one of several giveaways right now to tie in with their release of new Purex Plus Oxi, with very nice CASH prizes--
(1) Grand Prize:  $1,000
(250) 2nd Place Winners:  $25
You can enter once daily and the drawing ends on November 30th.  Here is the link to that giveaway--Good Luck!

Purex website:  purex.com
Twitter:  @Purex
Facebook:  @Purex

Thursday, October 11, 2012

Letter of Medical Necessity for the Ketogenic Diet

this is very interesting and explains a lot about the Ketogenic Diet that Hannah is starting.  The date has been changed to November 27.  I just realized that her spinal fusion 2 years ago was 11/29 the Monday after Thanksgiving and this is the Tuesday after Thanksgiving!



RE Ketogenic Diet

To Whom It May Concern:

Hannah Jones is a 17 year old young lady with a diagnosis of static encephalopathy secondary to a chromosomal abnormality (1q21325 deletion) resulting in significant mental retardation, complex partial seizures with secondary generalization, hypothyroidism, deafness and blindness. Hannah's seizures have remained intractable despite being tried on multiple medications to include,Topamax, Dilantin, Tegretol, Depakote, Lamictal, Zonegran, Phenobarbital, Gabatril, Keppra, Klonopin, Trileptal, and  Banzel.  For this reason, our next step is to try the Ketogenic Diet as treatment for Hannah's uncontrolled seizures.

The Ketogenic Diet is a rigid mathematically calculated diet that has been an approved mode of therapy for children with intractable seizures.  The diet has been in existence since the 1920s and it NOT EXPERIMENTAL.  It is a high fat, low carbohydrate, low protein diet designed to maintain a patient in a constant state of ketosis.  It is ketosis that serves to abate seizures.  Statistics from Johns Hopkins University Hospital show that about 25% of the children placed on the diet have their seizures controlled, 50-60% show significant improvement, and 25% have little improvement or are not able to tolerate the diet for other reasons.

Many centers do not use the diet or are not familiar with it because of its strict requirements and the commitment in knowledge and energy required on part of the Epilepsy Center staff to effectively implement the diet.  At The Alfred I. duPont Hospital for Children we have a team of individuals who have been trained in the use of the diet.  The team includes the pediatric neurologist, an advanced practice nurse, dietician, pharmacist, and psychologist.  Our inpatient nurse staff, who have been trained in the use of the Ketogenic Diet, are also very important to successful implementation.

RE: Hannah Jones
DOB: 7/9/1995
MR#: 10323085

Induction of the diet involves approximately a five day hospital stay.  During the first 48 hours, the child is fasting to deplete carbohydrate stores and achieve ketosis.

Hospitalization is necessary to closely monitor and treat hypoglycemia as well as medical toxicity. The high fat diet is then slowly introduced over the next three days.  Complications during this period may include hypoglycemia, or low glucose, excessive ketosis, nausea, vomiting, and diarrhea. 

In addition, hospitalization provides time for extensive teaching, and impresses upon the parent the seriousness of the diet.  While the latter is not the foundation for why we choose to do this inpatient, it helps to assure success, commitment, and compliance to the diet once the family goes home.

What we hope to achieve through the use of the Ketogenic Diet is complete cessation of Hannah's seizures, or atleast significant reduction of them.  We would also like to achieve an elimination or significant reduction of some of the medications Hannah is on, thus making her more alert throughout the day and improving quality of life.  With the cessation of, or reduction in the number and severity of her seizures, and the possible reduction of anticonvulsant medications, this should ultimately reduce the number of ER/hospital admissions in the future.

Hannah is scheduled for admission to the Alfred I. duPont Hospital for Children on 11/27/2012.  If you have any questions, or if I can be of further assistance, please do not hesitate to contact my office at 302-651-5930.

Thank you for your time and consideration.

Sincerely,



Chief of Division of Neurology


SJF/hgs



Thursday, September 27, 2012

EEG is finally over!


that was the longest 48 hours Chuck and I have ever had...he was nice enough to sleep during the day and let me sleep at night!  Our 5 day vacation earlier in the month seemed like 2 days and this 2 days felt like at least 5!
  I think she showed off a lot.  She had a few of what we know are seizures.  We clicked a button everytime she had a seizure, or we thought she did.  There appeared to be a lot of activity.  The EEG tech only told me that she got a lot of info for the dr to go over.  She wouldn't tell me more although I think she knows.  Hannah wasn't even hooked up an hour and already slipped the gauze off her head!  So they had to come and re wrap it.
Hannah all hooked up, had to add the bow to keep up her reputation! LOL


The bow ended up holding back the piece of gauze by her face.  This morning she got really hyper and started pulling off the gauze, I think she was ready for it to be done!  She was so hyper she pulled on the vent and her trach came out.  Not sure why she was so hyper but will be interesting to see if that is a seizure.
  We had to wait for neuro to come see us after they took it all off.  He didn't come for 2 hours, walked in introduced himself, asked what we had done, wanted to know if we kept a log, no, we were told we didn't need to.  He said you should hear in about a month. didn't even look at Hannah and walked out.  Needless to say, we were all upset!  The attending  dr couldn't believe it.  We finally got out of there about 1:30!
  As usual, we saw a lot of friends and met some new ones among the staff but didn't get to meet any one else since we were stuck in the room.  WE did get to walk the halls for about 1/2 hour while she changed out the machine.
all done, waiting to get her hair washed!
We had to buy the  button down shirts since that isn't her normal style.  They couldn't take anything over her head once she was hooked up.

Saturday, September 22, 2012

Hannah 48 hour EEG...grandbabies and more

Isn't that an exciting title?  We are really looking forward to it....NOT!  :)  The EEG starts on tuesday morning through thursday morning.  thankfully chuck is going with me so I can sleep.  He will do most of the night shift since she appears to have less seizures during that time.  We are at the point where we don't know what is a sz and what is not.  I would like to think that it's more likely not sz we are seeing but sometimes I think she almost has continuous ones...hopefully it's not!  the paperwork says when we think we see a sz we have to take her blankets and socks off and say what she is doing.   I think we are going to be worn out by the time it is over...chuck got invited to go to a Raven's game thursday night after it's over, I am glad he gets to do something fun, it's been years since he has gone to a Raven's game.
  In November Hannah is starting the ketogenic diet.  She will be in the hospital for 5 days while they start it and fine tune it.  Hopefully it will stop some of her seizures and/or allow us to take her off some of her seizure meds.  She is still on 5 sz meds right now and that is too many!
  We had a pretty quiet summer, didn't go out much and didn't go to dupont all summer but now we are making up for it.
Hannah's shirt says Attitude is everything!

 We celebrated Taylor's 4th birthday on labor day weekend...she was actually born on labor day, we had joked about being in labor on labor day and she really was (5 days early).  got to see all 3 of my grandbabies that weekend...they are getting so big.

not sure of taylor's expression

Logan, Tyalor and Jonas

 

Thursday, June 21, 2012

Exerbeat - fun exercises

Our daughter Becky has lost a lot of weight and gotten in shape (we are proud of her)  She told me about an exercise game for the wii that she uses...I got it last week and love it.  I can already feel the difference it has made in my muscles..and have lost 4 lbs!  It's fun and easy to do..
ExerBeat  Got it on Amazon, couldn't find it in the store.

ExerBeat

Sunday, June 10, 2012

Ketogenic Diet Info

We are still just considering the Ketogenic Diet for Hannah.  I am waiting for the nutritionist to call about it.  I found this article while looking for info.
Ketogenic diet.  There is a lot for us to consider with this for Hannah since it can cause kidney problems and she has already dealt with that. 

About Seizures from Kids Health

A lot of people ask me about seizures and I found this info to be helpful.  I want to write about things Hannah deals with to help them understand more about her.  This is the first one.
joan

Info taken from
 http://kidshealth.org/parent/medical/brain/epilepsy.html#

Seizures and Epilepsy

If you have a child with epilepsy, you're not alone — 2.5 million Americans have this disorder.
Anyone can get epilepsy at any age, but the majority of new diagnoses are in kids. About two-thirds of all kids with epilepsy outgrow the seizures that accompany it by the time they're teens.

About Epilepsy

Body Basics: Brain and Nervous System
Epilepsy is a disease of the central nervous system in which electrical signals of the brain to misfire. These disruptions cause temporary communication problems between nerve cells, leading to seizures. A seizure can be thought of as an "electrical storm" that causes the brain to do things that the person having the seizure doesn't intend.
Having a single or sometimes even several seizures is not necessarily considered epilepsy. Kids with epilepsy are prone to having multiple seizures over a fairly long period of time (months to years).
Epilepsy:
  • is not the only cause of childhood seizures
  • is not a mental illness
  • does not necessarily affect intelligence
  • is not contagious
  • does not typically worsen over time

Causes of Epilepsy


In less than half the cases of epilepsy, there is a specific identifiable brain problem that causes the seizures. These include:
  • infectious illness (such as meningitis or encephalitis)
  • brain malformation during pregnancy
  • trauma to the brain (including lack of oxygen) due to an accident before, during, or after birth or later in childhood
  • underlying metabolic disorders (chemical imbalances in the brain)
  • brain tumors
  • blood vessel malformation
  • strokes
  • chromosome disorders
In kids, more than half of epilepsy cases are idiopathic (meaning there's no other identifiable cause or visible problem in the brain). In most of these, there's a family history of epilepsy or the condition is believed to be genetic (kids with a parent or other close family member with epilepsy are more likely to have it, too). Researchers are working to determine what specific genetic factors are responsible for these forms of epilepsy.

Understanding Seizures

Seizures vary in severity, frequency, duration (from a few seconds to several minutes), and in their appearance. There are many different kinds of seizures, and what occurs during one depends on where in the brain the electrical signals are disrupted.
The two main categories of seizures are generalized seizures, which affect the whole brain all at once, and partial seizures, in which only part of the brain is mostly affected. Some people with epilepsy experience both kinds. Also, the electrical problem in a partial seizure can spread to cause a generalized seizure.
Seizures can be scary — a child may lose consciousness or jerk or thrash violently and may appear to stop breathing or have difficulty breathing. Milder seizures may leave a child momentarily confused or unaware of his or her surroundings. Some seizures are so brief and minor that only careful observation or an experienced eye will detect them — a child may simply blink or stare into space for a moment before resuming normal activity. Even in those cases, it is usually obvious to parents that a child is having episodes of concern.
After seizures that last more than 30 seconds, most kids are exhausted, tired, sleepy, disoriented, confused, or even combative and agitated for minutes to hours. This is known as the postictal phase.
During a seizure, it's very important to stay calm and keep your child safe. Be sure to:
  • Lay your child down away from furniture, stairs, radiators, or other hard or sharp objects.
  • Put something soft under his or her head.
  • Turn your child on his or her right side so fluid in the mouth can come out.
  • Never stick anything in your child's mouth or try to restrain him or her.
Do your best to note how often the seizures take place, what happens during them, and how long they last and report this to your doctor. Once a seizure is over, watch your child for signs of confusion or the postictal phase. He or she may want to sleep and you should allow that. Do not give extra medication unless the doctor has prescribed it.
Kids who experience partial seizures may be frightened or confused during or after the seizure. Offer plenty of comfort and reassure your child that you're there and everything is OK.
Most seizures are not life threatening, but if one lasts longer than 5 minutes or your child seems to have trouble breathing afterward, call 911 for immediate medical attention.

Diagnosis

Talk to your doctor if your child has seizures, staring spells, confusion spells, shaking spells, or unexplained deterioration in behavior or school performance. The doctor can refer you to a pediatric neurologist, who will take a patient medical history and examine your child, looking for findings that suggest problems with the brain or with the rest of the neurological system.
If the doctor suspects epilepsy, tests will be ordered, which may include:
  • an electroencephalogram (EEG), which measures electrical activity of the brain via harmless sensors secured to the scalp while the child lays on a bed. Usually the doctor will ask that a child be sleep-deprived (put to bed late and awakened early) before this painless test, which typically takes about 1 hour.
  • a magnetic resonance imaging (MRI) test or a computerized tomography (CAT) scan of the brain, both of which look at images of the brain

Treating Epilepsy

Your doctor will use the test and exam results to determine the best form of treatment. Medication to prevent seizures is usually the first type of treatment prescribed for epilepsy management. Most kids are successfully treated with one medication — and if the first doesn't work, the doctor will usually try a second or even a third before resorting to combinations of medications.
No medication for epilepsy is perfect and side effects are possible. The most common include tiredness, decreased alertness, and mood or behavioral concerns, so parents should watch for these and discuss concerns with the doctor.
Nowadays, many choices are available and most kids treated with antiseizure medications do not experience worrisome side effects. Nevertheless, discuss any concerns you have with the doctor so that dose adjustments or appropriate changes can be made if appropriate.
Rarely, blood tests might be needed to monitor a medication's level in the bloodstream or to watch for side effects.
If your child still has seizures after the second or third medication tried, it's less likely that subsequent medications will be fully effective. In this case, more complicated treatments may be recommended or tried. These include:
  • combinations of medications
  • a special ketogenic diet (a high-fat, low-carbohydrate, low-protein diet that's often difficult to follow)
  • implantation of a vagal nerve stimulator (an electrical pacemaker-like device placed in the chest and neck)
  • surgery to remove the affected part of the brain, if possible. In the right situation, epilepsy surgery can be very effective or may even cure a child of seizures, but overall it is done in less than 10% of seizure patients, and only after an extensive screening and evaluation process.
Even people who respond successfully to medication sometimes have seizures (called "breakthrough seizures"). These don't mean the medication needs to be changed, although you should let the doctor know if they occur.

Living With Epilepsy

To help prevent seizures, make sure your child:
  • takes medication(s) as prescribed
  • avoids triggers (such as fever and overtiredness)
  • sees the neurologist as recommended — about one to four times a year — even if responding well to medication
Keeping your child well fed, well rested, and reducing unnecessary stress are all key factors that can help manage epilepsy. Common-sense precautions to take (based on how controlled the epilepsy is) include:
  • Younger kids should always be supervised in the bathtub (a responsible adult should always be within arm's reach) and older kids should take showers with the bathroom door unlocked — and only when there is someone else in the house. (It's also wise to lower the temperature of hot water so a child cannot be accidentally scalded during a seizure.)
  • Swimming or biking alone are not good ideas for kids with epilepsy (although they can certainly enjoy these activities with other people). A responsible adult within arm's reach is recommended during swimming for kids with epilepsy. A helmet is required during bicycling, as it is for everyone.
With these simple safety precautions, your child should be able to play, participate in sports or other activities, and generally do what other kids like to do. State driving laws vary, but teens with epilepsy will probably be able to drive with some restrictions, as long as the seizures are controlled.
It's important to make sure that other adults who care for your child — family members, babysitters, teachers, coaches, etc. — know that your child has epilepsy, understand the condition, and know what to do in the event of a seizure.
Offer your child plenty of support, discuss epilepsy openly, and answer questions honestly. Kids with epilepsy might be embarrassed about the seizures or worry about having one at school or with friends.
Unfortunately, many kids with epilepsy have other neurological problems. In particular, learning and behavioral problems are common and can create more hardship for a child than the epilepsy itself. In some cases, the medication's side effects can aggravate these problems. Such difficulties might require the help of other specialists, teachers, and social workers. Consider having your child talk with a mental health counselor or psychologist if he or she struggles with these feelings or problems.
Parents caring for a child with epilepsy also might benefit from advice from specialists such as psychologists, social workers, or specialized educators. For those whose kids have more severe epilepsy, this help is critical. Specialists can help parents plan for the future (transition services) by identifying social, financial, and other community resources that will improve the child's well-being.
Reviewed by: Harry S. Abram, MD
Date reviewed: November 2010
Originally reviewed by: Fran Filloux, MD

Thursday, June 7, 2012

More seizures...

We ended up being in the hospital for 4 days for the seizures.  Time has been running together since then.  Now, she continues to have more seizures, sometimes as many as 50 a day.  We started another new sz med, Onfi and it helped for a couple days and we had to increase it again after having to give her diastat (valium).  She is now on 6 seizure meds and that is ridiculous!.  If you follow me on facebook, I update there because it's easier and totally forget to update here.  That was memorial weekend and we wanted to avoid the hospital.  That only helped for a couple days and this past Sunday we went to the ER again.  That was a total waste of time and the only thing they did was draw some blood to check her phenobarb and trileptal levels.  We were there from 11:30am til 6:30 pm.  I did all her meds, feedings, neb treatments.  They never called Respiratory therapy to let them know they had a trach/vent child there.  they never even asked why we were there (they knew she was having seizures)  The main reason I took her was so we could give her some valium or something to break up the seizures.  But I guess since she wasn't in status it wasn't as important.  they called her neuro because he was on call and made it sound like the seizures were worse on the reduced gabitril (we started weaning that a couple weeks ago) so all he said was to start that back.  He wanted to see her this week but they were really busy with one dr in a car accident. Tuesday she slept all day long and was only awake for a couple hours.  Wed, she was awake and I didn't see any seizures that morning so we hoped that they sleep had broken the cycle.  But that afternoon they started back again, in a couple hours so had 12 of them. I called to give an update like Dr F asked.  The NP called back last night and said they had a cancellation for this morning at 10am.  I had to cancel my drs appt to take her.  It was a quick appt, he said to go ahead and stop the gabitril, he said they made it sound like things were worse because of the wean but it didn't make any difference.  I asked about changing the times of some of those meds since most of the seizures are in the afternoon so we are changing her trileptal from 9a and 9p to 1a and 1p.  he thinks that is the best med for the type of sz she is having right now.  I asked about the ketogenic diet and he said it's worth trying so he is having the nutritionist call me about it. He also pretty much confirmed the the inappropriate laughter is szs too..she has been doing a lot of that.
    Talked to dr M (medically complex) about possibly getting a port for blood draws, I had to take her 3 separate days and 3 tries each to finally get blood last week, her arms are all bruised from the bloodwork.  In the ER they could only squeeze the blood out of her thumb and she wiggled that and got blood everywhere, looked like an accident.
  For good news, we sold our old van to a wonderful family I met at dupont and the AC is fixed on the new one.  Our very first nurse that came to work for us 13 years ago, left the agency and came back but we could never work it out for her to come back...until now!  Pam started working for us on tues and thurs and we are so excited.
  Hannah also got her new sock monkey this week form Secret Ninja Monkey Operations on fb.  it has a trach, gtube and even a mitrofanoff (her cathing stoma).  help us think of a name for her monkey!

Friday, May 4, 2012

Hannah in the hosptial...ER visit

tues afternoon  I had to run to dover because my cell phone screwed up...Hannah kept looking like she had a seizure but it was quick.  the nurse said she was fine for her but when she  got up wed morning she started having seizures again,  a lot, every 5 minutes.  I called neuro and they said to give her diastat (rectal valium) to stop them but they just kept on.  When the nurse came in she slept all night and seemed to be doing better so when she woke up, she started again.  So I packed up stuff for a couple days and took her to the ER at Dupont, wednesday morning.  At first they weren't  bad and then she went into status.  At that point they admitted her...no matter what they did they wouldn't stop.  Finally last night they just seemed to stop like when   a fever breaks.  There was no apparant cause, no fever or signs of infection.  She did this twice before 2 years ago and they lasted for 3 days and stopped.  The drs think it's just part of her syndrome and can't find a cause.  We had started a new seizure med while she was in the hospital and her seizures had actually gotten better...til now!  They are going to make some changes to her neds and try to get her off of two of them, but not today :)   She is sleeping a lot today.
  So once again, life with Hannah is very interesting and unpredictable :)  We were supposed to pick our new van up today with the new lift in it below Salisbury and my cell phone is in the store in Dover but I can't get it now .

Friday, April 20, 2012

Hannah update, long overdue, sorry

Hannah on Easter Sunday



Hannah 4/12

Hannah came home from the hospital on April 2 (monday)  when we were leaving the NP Susan noticed that the catheter was kinked...I should have known that would cause a problem :(  She came home on blood pressure medicine (enalapril) 2X/day and a prn BP med.  We also were supposed to continue her new seizure med (vimpat) and Vit K (aquadeks)  but they both had to be pre authorized, we finally got the vimpat but over 2 weeks later, still waiting on the Vit K...that affects her blood coagulating.
  She has healed well, just like her spinal fusion, but it's all the extra things you don't see that are here problems, like bp, low sodium levels, clotting issues etc...On  Easter Sunday morning, the catheter tip broke off, we super glued it back together and it held for over a week.  Urology said it wasn't a problem as long as it was draining and the catheter didn't come out.  this week on Monday, it broke again and I reglued it..but I got tired of fooling with it and it looked really fragile.  So instead of waiting for our followup appt on thurs, they fit us in on tues...Instead of replacing the catheter he took it out..they said it had healed really good.  She showed me how to cath her but suggested as few people as possible should cath her right now so the nurses and I decided it would  just be me so I do it during the day and at night attach the catheter to a bag and let it drain overnight, we just tape it to her leg.  That is working good.
 We left the appt and had some bloodwork done but it was a very ling wait so Mom and I got some lunch.  We were just finishing and Susan saw us again.  She suggested we come back and cath her again before we left. I am so thankful I did, as I finished, she had a large liquid bm all over the table..thankful that if we hadn't cathed her that would have happened in the car :)   We got home without incident after that.
  since then she has been doing ok, but still has bp issues.  we need to pray for the vit K to be approved.
 We had a new nurse start this week and she seems like she is going to work out really well. 
  Thanks again for the continued prayers for Hannah.
Taylor made a castle just for Grami!

Monday, April 16, 2012

New Non-Permanent Hair Color from Nice 'n Easy


New Non-Permanent Hair Color from Nice 'n Easy lets you date a new hair color before you commit. It gradually washes out within 28 shampoos so you can flirt with a handsome new shade...or two...or three.
vocalpoint.com/FlirtWithHairColor

Pringles Tournement Of Flavors

Watch, Vote and you could Win!
http://bit.ly/H7Ctjl

Friday, March 30, 2012

Hannah surgery update

I am going to combine a few  days into one post.  It's hard to get on here at the hospital.
Hannah is doing better, they might move us to the floor (2A) if there is a bed there today...still in some pain and guarding her belly...they are waiting for bowel sounds to feed her.
It's cool, we have 1 nurse shadowing the other today annd she goes to church with my in laws...chuck's dad told her she might see Hannah today!

Hannah is doing good, now waiting for more bowel sounds so they can start feeding her so far just a few gurgles...she was sleeping so sound when I came in they weren't sure why her monitors were going off...

Hannah is now sound asleep on a regular floor, finally on 2A...feels like home. :)

still waiting for Hannah to have a bm...a few more bowel sounds today but nothing signific ant...they said it's according to Hannah's plan but I told them I don't always like her plans LOL she can't get out of bed yet, too many tubes...foley catheter, mitrofanoff catheter (both draining in bags) and a drain bag for her gtube! she is just chillen though and doesn't appear to be in a lot of pain...

Hannah update...she started 5cc/hour of pedialite last night and increased it to 25cc this morning (one dr wanted to increase it to her rate of 160 from 5...I told him no way..the NP did the 25...now they are going to add some formula to it 1/2 strength to see how she tolerates that. so far so good, some gas but no bm yet. Since she has been here they do a lot of blood pressures, maybe every 1/2 hour..she gets agitated everytime so the #s looked high...then last night we realized she is not agitated and her blood pressure is really high, 146/113 is the last one. The medically complex dr thinks there is a connection between high blood pressure and a rash/hives thing she gets a lot...don't remember what he said, will ask when I see them again...I thought the rash thing was some type of stress..nephrology is consulting with the medically complex..whatever that connection is they are doing urine and blood cultures for it

Hannah update...the thinking now is Hannah has had high blood pressure for a while, they are going to do an echocardiogram to see if it shows that..so now we are going to have to go home with blood pressure meds...so thankful that we had this surgery to find this out. I just told her she can't be inpatient here anymore, we always leave with a new diagnosis or new dr (although we already see nephrology) They have to watch her for 48 hours since the new med can cause high creatinine levels. So we should be going home on Sunday...and they are increasing her feedings some more today and started her miralax...
Today: After a little help she finally had a blowout but in her wheelchair :(  She is still having blood pressures issues. She is now up to her normal feedings and we got to walk around the unit for a while.  Sodium levels are low so they are working on getting them up, so hopefully that won't delay us going home. 
  It's really nice having the medically complex team following her now.  Dr M handles everything and this hospitalization has helped him get to know her better.  Hopefully we are still on track for Sunday.