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Wednesday, February 1, 2012

Tuesday, January 24, 2012

"ADHD isn't *anything* but a myth."

This dude's nothing but a crock of crap! He is NOT a certified Medical Doctor (and actually ADMITS to such claim). And apparently, so is Depression. It's a "moral dilemma". The ADHD is an "imaginary" medical condition according to this dummy.

Ones like this asshat has NEVER had children most likely. Or never had kids with these disorders.

Friday, January 20, 2012

Medication Station... To Transfer Or Not. That Is The Question.

There went that idea. At least for another 2 weeks. I wanted to transfer B.'s meds to the store that my husband works at, seeing as Walgreen's dropped my girls and their insurance plan.

Although his IS safe, at least for another year, I don't like the idea of having everyone all over town with their meds. I called the store's pharmacy (Kroger), and sure enough (like back when he WAS with them), they have NONE of the Vyvanse in his strength requirement (top dose of 70 mg).

So, this means filling again with Walgreen's, calling Kroger in 2 weeks to ensure that they place the Vyvanse at that dose on order to come in, in time for us to fill it.

You would think though, being it's one of the MOST WIDELY used drugs for ADHD, in all of the available strengths, that it would ALWAYS be on hand.

I have some thinking to do over the next couple of weeks over this and mull the decision over.

To me, it's just plain common sense to keep in stock, the drugs that you as a Pharmacist knows are of popularity in prescribing. To do otherwise, could cause you to lose customers or (potential) ones. And what if the person was to have ran out before you can get more in? That COULD have deadly consequences.

Monday, January 16, 2012

Team Amelia... The Fight For Life and The Debate of Society's View on Human Worth

There is a little girl named Amelia (Mia for short). She is almost three years old and suffers from a rare genetic disorder called Wolf-Hirschhorn Syndrome. Part of the disability is severe cognitive delays and disabilities. But apparently, they don't slow her down.

Amelia can laugh, smile, plays with her family pet and is apparently a little girl that loves to have her picture taken. In most ways, she is a "normal" little girl. With some pretty big odds stacked against her.

She also is going to need a kidney transplant in the next six moths to a year. Or else, she will surely die.

But one doctor, from Nephrology, has flat out refused to help her. Even though the parents do NOT wish to have her on the transplant National Registry. They wish to donate via family members and themselves. Still, the doctor at Children's Hospital of Philadelphia has refused.

What in fact was the basis of refusal to operate and give Mia a second chance at a BETTER and a HEALTHIER life?

"Mentally retarded", and "fear" of the drugs she will need post-transplant to let her kidney survive giving her seizures (she ALREADY has them!) or make her mentally "retarded" (she already IS!). So, how much worse can this honestly get for her, other than a CERTAIN death sentence??

The following is excerpts taken from Mia's mother's blog entry on

"The doctor interrupts. He puts his hands up and tries to take a stern voice with me. “These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.”


“Yes, but it is different for her. She is already brain damaged and mentally retarded.”

He pauses as if he is choosing his words carefully. “I have been warned about you. About how involved you and your famliy are with Amelia.”

The devil himself could not have produced a more evil laugh. “Ha! Warned! That is funny! You have no idea…”"

"“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”

“Yes. This is hard for me, you know.”

My eyes burn through his soul as if I could set him on fire right there. “Ok, so now what? This is not acceptable to me. Who do I talk to next?”

“I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote.”"

"“Well, you can then take it the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won’t be done here.”

They both get up and leave the room.

I look at Joe who is sobbing trying to get the stroller and Amelia’s backpack. I break down with him before we head to the parking garage."

Some people are calling Amelia's parents "liars". Some are saying she is embellishing the story. Some are hitting her for invoking emotional responses from the reader. As a mother, as a mother to a disabled child, and as a TRANSPLANT RECIPIENT *myself*, of course I have an EMOTIONAL response to this outrage!... And my parents had faced a VERY similar situation with me.

What also makes this sad and angering for me is that the Social Worker that met with Mia's parents, along side of the doctor, was rude, insensitive, unprofessional and it sounds like she almost ENJOYED going toe-to-toe with the mother, when Mom became "defensive" in the fight for her child's life.

Here is the statement that CHoP made on their "Like" page last night in regards to the entire situation...

Children's Hospital of Philadelphia

"We have watched with great concern the comments regarding criteria used in making transplant eligibility decisions. We understand your concerns and reactions to the Facebook postings.

We strive to provide the safest possible care for our patients and we make transplant eligibility decisions based on widely-accepted, medically valid methods, with many factors considered. We want you to know that CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status. Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities and impairments.

CHOP’s transplant programs continue to evaluate and perform transplants on some of the most complex cases in the country. We use an established framework for consistent evaluation and transplantation. Each child is evaluated on an individual basis, taking multiple medical, surgical, and psychosocial aspects into consideration. In each evaluation, we consider the possible risk and outcome of the recipient, potential donor options, as well as alternative therapies.

In order to determine eligibility for transplantation, a multidisciplinary evaluation is completed by several members of the transplant team, which would include careful assessment of a patient by surgical and transplant specialists, as well as, psychosocial, and neurologic specialists. Parents and family members are very much a part of the discussion.

We wish to emphasize that all determinations of eligibility for transplantation are treated on an individual basis. We make all decisions regarding eligibility using a non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country.

These communications are very important to us and provide us with an opportunity to always re-examine and reassess our approach and process. We hope that we can continue to improve and continue to provide exceptional care for children with organ failure."

Yes, be ANGRY at the Social Worker in question. Yes, be ANGRY with the "Specialist" doctor in question. And I say YES, to be angry with Children's Hospital of Philadelphia for obviously trying to "shut up" those of us in the Disability Community by deleting our posts of concern and shock at the outrage that lays before us. After all, the doctor and their Social Worker are REPRESENTIVES, faces if you will of CHoP.

And here is the face of those with Mental Disabilities who is in her own way, defacing the stigma and dogma of a society against her in the fight for the RIGHT to live as full and as long a life as she can have...

How can we in the 21st Century, in 2012 think of ANY person, child or adult, that is mentally handicapped (in any severity of the term) as just a piece of meat that is more fit for the trash can, than as a HUMAN BEING that have EVERY right as a "normal" person to live their life to the fullest measure and length as possible?

What is happening to this little innocent BABY and her parents is beyond deplorable and reprehensible.

How does a prisoner's "rights" outrank a (disabled) child's "rights" when it comes to LIFE-SAVING surgery? It's beyond my comprehension. To have this type of "backwards" thinking is an atrocity to mankind.

Sunday, January 15, 2012

On The Merry-Go-Round We Go!..Again.

Well, another appointment has come and gone. Another one minus his Case Manager. THIS time, due to a death in the family.

First of all, we talked about B.'s medications and his eating "habits" of BARELY eating. Especially since again, he has lost weight and is showing the visible signs of it.

So, the doctor and I have decided to cut back some on his Vyvanse by 20 mgs. I will be placing the contents of the entire capsule in to a glass of water, pour out 2 ounces of a 7 oz. glass, then have him drink the other 5 oz. of water to consume 50 mg. of the medicine. I should know in a couple of weeks of doing this if it was the right move.

As for the Seroquel and the Intuniv, they are staying at the same dose of 50 mg. and 2 mg. amounts.

If push comes to shove, I will strongly consider a drug that is used in cancer patients to induce hunger and the wanting to eat. This would hopefully counter the unwillingness to eat and help him gain his weight and proper amount of muscle mass back.

His spinning/walking backwards is apparently a compulsive problem. He does this a lot. Like in Sears and the mall, where he almost knocked some things over and almost hit in to people.

And I found out that the noises and the sniffling (constantly most times) is a couple of tics that he has developed. But I cannot say for certain that it is medication-induced, or brain-induced tics. I think that at the next appointment in April (or was that March?), I will ask about that.

Also, his nose bleeds have been more active.

The highlight to all of this? He hasn't been getting in to AS MUCH trouble in school as of late, with his behavior. Homework and attention? Still not that great. But we are working on it.

Wednesday, January 4, 2012

Special Needs Parent Monthly (#1)

Welcome to the kick off of a NEW blog series, where MONTHLY, I will feature a Special Needs Parent. If you are interested in being considered as a featured SN parent in a future posting, please email me at

First up is Robin. In her own words, she will tell of herself, her family, and her life with having a disabled child.

basic info....stay at home mom, married 16 years in Feb., I enjoy reading, photograghy and word games.

have 2 sons Derek 11 and Jacob 13..

life as a special needs parent well, I don't sleep much lol. it's a struggle to balance my time between my sons since Jacob needs so much of my time. Jacob was dxed at 2 years, he was a good baby, well a great baby...only cried when he was hungry. Everyone was jealous but in the back of my mind I was worried. He was To good! He didn't regress, he just reached milestones late. He didn't babble, point, or "play" like other kids his age. He started PT at 8 months, Ot and speech at 18 months and early intervention at 2.

He is in the 8th grade and I'm going to start home schooling next because he will be going into high school and I feel like he will benefit more from one on one and I can pay more attention to the areas that of important to Jacob. He LOVES music, football, water, and food. lol which is a challenge because he is on the gf/cf diet.

He's a good dancer. He has severe IBS and when he is in pain he becomes very aggressive. He doesn't know his own strength. He gives the best hugs in the world! He has a lot of sensory issues and likes deep pressure and massage.

He likes to be petted on his arms some times which gets us strange looks in public. lol Doesn't bother me, I'm outspoken if people are rude I let them know about it.

Autism is just part of our learn to adjust your life accordingly. Jacob is non verbal so I am his voice....and I have a big mouth (hehe)!

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