The nurses recognized us from last year! We were a wreck Dec.2010 and still are today.... I guess it wouldn't be hard at all to point us out from the crowd.
First thing is first they took her vitals, her blood pressure was in the upper 120s... Luckily it dropped... for now.... They did another enema and this time it helped out so much...... She felt much more comfortable.
The on call neurologist, Dr, Matthews was in and wanted to DRASTICALLY CHANGE ALOT OF THINGS!!!!!
Other than Aliyah's constipation I have been calling her neurologist's nurse and letting her know my daughter's seizure activity have increased DRAMATICALLY ... about 40 head drops a day. Sean and I concluded it was due to the weaning off in Topomax to 0 mg/day. (Dr. Joshie did this because she strongly thinks Topomax wasn't doing anything for her, and keeping her delay in speech/communication, Aliyah has been on Topomax for over 9 months in high dosage and the seizures were still occurring)
Dr. Matthews wanted to increase to topomax 130mg, decrease keppra , and introduce clonazepam. I asked her if it would be okay to put herin 50mg of topomax because that is the dose that Sean and I saw most improvement on, she argued we needed to forcefully attack her seizures with high dosage. Dr. Joshie was not in because she was on vacation... So we had to listen to what all the other neurologist on staff were suggesting.....
Sometimes I think they are not human and are insensitive to the parents and children. Reason being I wanted to know her opinion over Aliyah's case... She started to lecture me as if I didn't know what her diagnosis was. And asked me to be realistic that my child may be disabled. She was so negative over my baby girl .... She was verbally picturing my daughter's future for me..... She was beginning to shred my dreams for Aliyah... Dr. Mathews was ripping my hopes of my baby leading a normal life..... After she was done "verbally hurting us" I let her know Aliyah formal neurologist and current neurologist who was at vacation told us Aliyah still has a very good chance to lead a normal life or as close as we can get it. She argued that she needed to be the one to tell us what might be..... I felt she backed away because I let her now two other neurologist who have actually sat down and read and studied Aliyah's case disagreed with her .
The next day Dr. Matthews let us know of our plans during Aliyah's stay at the hospital.
She was to have several types of x-rays
1. to check for enlargement of her heart.
2. her stomach to see if there is a problem in motility
3. hip decay due to the use of ACTH
several blood tests and checking on her levels of ions, and a kidney ultasound.
Her heart, kidneys, and hip looked normal. They determined there was a problem in motility in her tummy, and her potassium level was low.
Dr. Matthews said once they fixed her constipation problems, by enamas and miralax they will begin to put her on the Ketogenic Diet on Monday, August1st. The nurse were letting us know from the beginning we were going to stay in the hospital for 7-8 days. In order to start the diet, they need to monitor her for 3 days in the hospital.
"The ketogenic diet, consisting of high-fat foods and very few carbohydrates, is believed to trigger biochemical changes that eliminate seizure-causing short circuits in the brain’s signaling system. Used as first-line therapy for infantile spasms and in children whose seizures cannot be controlled with drugs, the diet is highly effective but complicated and sometimes difficult to maintain. It can temporarily raise cholesterol, impair growth and, in rare cases, lead to kidney stones, among other side effects.....The evidence is based on a study of 101 patients ages 2 to 26 years treated with the ketogenic diet for a minimum of 16 months and for up to eight years at Hopkins Children’s between 1993 and 2008. At the time of the follow-up, patients were off the diet anywhere between eight months and 14 years. Nearly 80 percent of the patients remained either seizure-free or had their seizures reduced by half. Most patients’ seizures did not worsen even years after stopping the diet." (http://www.hopkinschildrens.org/high-fat-ketogenic-diet-to-control-seizures-is-safe-over-long-term.aspx)
