Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Tuesday, February 28, 2012

Looking For a Fix

I used to think that the two worst words for a parent of a child with special needs to hear were...

"Prior Authorization"

Lately, I have discovered a more loathsome word pairing.....

"Drug Shortage"

In the past 6 months, I have called and visited more pharmacies and doctor's offices than a drug rep from Pfizer.

I am the mother of a child diagnosed with severe ADHD.

I have searched the Internet, the neighborhood and the state for the last remaining handfuls of Ritalin.

Since ADHD medications are narcotics, Massachusetts law requires me to physically pick up a presctiption each month from our pediatrician. Phoning or faxing presctiptions to the pharmacy is not allowed.

With all supplies of Ritalin on back order, only a few pharmacies have any in stock. Those who do have it available, have only a few dosage strengths left. As a result, I must first find a pharmacy that has meds available and then visit with our primary care doctor again so he can rewrite prescription after prescription for the "most available" dosage.

I am in his office so often, his staff is beginning to think I am a hypochondriac.

I have frequented so many pharmacies, my photo is on their list of potential drug abusers.

I feel like a crack addict.

But my efforts have been futile and it is my child who is suffering.

I am overwhelmingly aware that many folks do not recognize ADHD as a real disorder. Current dogma persuasively perpetuates the belief that ADHD is nothing more than a label used by lazy and delinquent parents to disguise what is just the end result of poor parenting.

Instead of providing my child with dangerous medications, all I really need to do is cut out sugar and dyes from his diet, add vitamins and fish oils, outlaw video games, employ stricter punishment tactics and my son would be miraculously cured.

It is surprising to me, how this distorted philosophy is so often regurgitated by those who do not have children diagnosed with this condition.

ADHD is a real disorder.

I have seen firsthand what it can do to a child.

It is not caused by parental failure or an inherent "badness" in a child.

It is caused by a brain that is not functioning properly.

It is inherited.

And it is indeed real.

My son has struggled to be successful in school. His restless energy and lack of impulse control have effected his ability to maintain friendships and build long lasting relationships. He is judged, scorned, disciplined and outcast by the world.

Students, teachers, administrators, and parents alike, often do not embrace Weston's unique personality. He is not valued. He is not understood. A steady stream of punishment and negative feedback has transformed my once happy and carefree spirit into a sullen and moody pre-teen who questions his worth in the world.

My son's meds have saved his life.

They have enabled him to learn, to succeed and to live happily in this world.

I have witnessed this successful transformation and the overwhelming positive results of what an appropriate medication treatment can do for a child who struggles from mental health issues.

Denying him treatment, is to me, nothing short of child abuse, no worse than a parent who denies their child treatment for cancer or diabetes.

And so, as his mother, I continue to search for answers.

Why are medications that will help my son being withheld?

Ask the drug companies and they will tell you that in an effort to control illegal distribution of ADHD meds (to college students and the like) the Drug Enforcement Agency (DEA) sets a "quota" for distribution. Once the yearly quota is met, no more meds are distributed, regardless of pulic demand

The DEA will tell you that they need to set these quotas to control the illegal distribution and misuse of ADHD medications. They blame drug companies for convincing physicians to unnecessarily prescribe these substances thereby inflating their markets and increasing their profits.

President Obama will tell you he has asked the FDA to look into it and has worked with Congress to sign legislation to prevent this issue.

Ask the FDA and they will tell you they do everything "within their legal authority" to prevent drug shortages.

ADHD experts like Dr Russell Barkley and Dr. Ed Hallowell will tell you that ADHD is actually under diagnosed in this country with many children and adults suffering from the effects of untreated illness.

They will tell you that currently there is no blood test or brain scan tool to use as a means of diagnosing this disorder. The only way to determine if a child (or adult) has ADHD is to treat them with medication. If medications work, the patient has ADHD.  Predicting a yearly quota of just who and how many will seek treatment is an unrealistic expectation.

Does this all sound like madness to you?

Are parents of children diagnosed with ADHD and cramming college students really our biggest drug threat?

All these departments, companies, and federal agencies are talking, but no one is telling me anything.

In the meantime, my child has not received the medication he deserves to treat his illness.

How can this happen?

What would public outcry look like if supplies of insulin were withheld?

And what do you suppose is going to happen once medications are available? The fear of stockpiling now becomes a reality.

I was told that all supplies would be back to normal by the first of the year.

It is now almost March, and I still cannot find the appropriate "prescribed" medication for my child.

I am beginning to consider using these "illegal" distribution channels and perhaps even a few college campuses.

Of course I can just see the headlines now.....

"Special Needs Mother Wanders Streets of Boston Looking for a Fix"


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6 comments:

Giulia said...

I am in France, but I could have written the same thing about persons' scorn and ostracy of ADHD.
Some physicians even told me that if my mom gave me to social services, it would have had never happen, and that I would have been a better fit.

Thankfully, we don't have the system of quotas, but we still have to fight to make adult ADHD recognized in France.


Lisa, I can only be sorry for your son. I can only feel for you.

What you can do is : write to everyone you can.
Write to your depute and congressman.
Write to Obama if you feel like it, but it would be best if you can.

Reach researchers and grab the studies. Phone them before, then write an email to them.
Explain to them why do you need these studies.

With all those papers, contact the medias, the local and national medias.

Yes, you need these papers, otherwise you will confirm their prejudices about the poor lazy parent. Because physicians, pharmacists, journalists... will find everything they can to confirm their prejudices. Don't let them this pleasure.
These papers are indispensable if you want to be believed by the medias.
I did the same for my legal fight (driving license, but the basics are the same).

I wish I could hold you tight from France, and give you some energy to make your dream become true.
But all what I can is writing this comment.


Take care of yourself

Luvmypeanut said...

I had the pharmacy not have alex's risperdol in stock. As they hemmed and hawed about it, we were dwindling down to nothing. I finally called them and told them that if they did not get it by tomorrow, I would bring alex down there and they could babysit him til they got it, cause I wasn't going to deal with him off his meds. Lo and behold it came in the next day!!! ROTFL...

Lisa said...

Yes, I was thinking of dropping Weston off at the DEA for awhile!

Merci beaucoup Giulia, it is so interesting to learn that the same stigma persists in France too. Thank you very much for your support and your suggestions!

Giulia said...

Je t'en prie, Lisa.

Well, I have been fighting for making a law change during two years and such. So unfortunately, I perfectly know what it means to see politicians making crazy decisions.
And to convince them that their decisions are crazy ones, get up early ! Because it's neither quick nor easy, and you have to be rock.

Why don't you try to make this political decision change ? I know that it's not easy, even and especially when you are alone to make the whole job (believe me or not, I have enough work for 10 people), I know for living it first hand that it's exhausting, but it worths the effort.
With a good good basics of knowledge, you can manage.
But I won't lie to you, it's exhausting, a full time job by itself. And judgmental people are in their heaven :(

Lisa said...

Giulia,

A l'ecole, j'etudie le francais mais....it has been a long time! Je parle en francais aussie....tres lentement and tres mal!!!!

I have sent a copy of my post to our local senator and to the media. It is at least a start!

Thanks again for your suggestions! Au revoir mon ami!

Giulia said...

Lisa,

Don't worry for your French : it's very understandable despite being rusty. I'm sure that your skills will come back very quickly when you start practicing some more in a French speaking environment.

Good that you sent a copy of your post to senators.
But you didn't tell me if you sent the studies with them. If you didn't, you have very little chance to catch your targets and convince them.
Politicians want to feel like they speak to an expert in the field of ADHD, not a patient or caregiver. The studies are very important to justify your views and convince them that something is wrong, that ADHD is a real disorder and so on.
They want you to be in your expert's skin, not your mother's skin.
Understanding the studies, the proof levels, what do they mean and so on are basic knowledge you need to advocate with politicians when it deals with a matter of health.
You have to be able to explain what these studies say, what are their interests and what are their bias if requested.
So when you speak up with politicians, dress with your expert pitbull skin if you want to obtain something.
I know that it's much easier said than done, but it's the only road if you want to make things change.

You can also speak with your son's psychiatrist, if he accepts to help you speak up about this problem.
He can also be willingful to help you obtain the studies you need for this job.

Studies are a master piece of your file. It's like you ask an expert to witness in front of the Court.
You have to think about your blog post like if it were a digest of what you think and ask, and why you do so. The studies provide the whole details about it. They are not obliged to read the studies, but the studies credits you as "expert mom".
Act like if you were writing a practical guide like "ADHD for dummies". Your blog post is a digest of the guide, the studies are the whole details they can read if they want.

I know I insist a lot on these studies, and sorry if it seems to you like I am too heavy on them.
But remember, politicians speak with MDs, some of them can be psychiatrists. A psychiatrist in the political field would always consider a patient or caregiver as "liar until otherwise proven". So if you want to be believed, you have to add these studies, because they are your evidences in front of them, like a fingerprint is a legal evidence.

I know that it's hard. I know that it's a lot of energy for a small move.
But really, these studies will save you a lot of being considered as "unreliable caregiver for her child because she is a lazy parent". It will be the greatest help to go ahead with this battle.

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