My loves

My  loves
Our family

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.