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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.


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.

Info taken from

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).
  • 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.


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!