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Know a provider who really gets it?

ADDboyDad profile image
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I have been a satisfied "customer" of Dr. Craig Liden and The Being Well Center in Gibsonia, PA for over 20 years. Before that, I saw a series of professionals who practiced within clouds of misinformation, and who had little to offer in the way of treatment. They said things like, "If Ritalin didn't help you, then you don't have ADD," and, "Medication doesn't work for everyone."

I met Dr. Liden at a conference. He told the audience that response to any one medication is not a diagnostic criteria for ADD/ADHD. He described his thorough approach to evaluation, diagnosis and treatment, and how it often takes trying many medications and different combinations of medications before seeing improvement. Before long I was traveling a significant distance to see Dr. Liden and benefit from his expertise.

It took a couple of years, but I ended up in a really good place. It was finally a "wow" moment - when we hit on the right combination of medications at the right dosage, I could actually function better! I could follow a conversation without zoning out or interrupting. I was aware of where my limbs were so I didn't trip all the time. I did better at my job because I was thinking before I acted. I started a successful relationship. It lasted. We got married. We had two boys.

When the boys started struggling with attention, we took them to The Being Well Center, too. They got to their own good places. Our home life became less chaotic and adversarial, and their teachers immediately noticed their increased "maturity." Then the boys' pediatricians freaked out. "These stimulant dosages are off the charts! This could be dangerous! It could impair their growth! They could die!"

And Dr. Liden reassured us. He sent us the "white paper" he had written explaining the reasons for such "robust" doses, debunking the growth myth and citing studies on the medications' safety. He reminded us that we all had EKGs before we started treatment, so we could rule out the cardiac complication some had with stimulants. He pointed out the very real health risks that befall teens and adults with poor attention and impulse control: dangerous choices regarding drugs, sex, alcohol, driving. He offered to talk to our pediatricians, but they refused. "He's not going to be able to teach me anything I don't already know. But these doses are off the charts."

We stayed the course. The boys continued to be healthy. The oldest is almost as tall as I am.

Dr. Liden died December 24th.

I am heartbroken, to say the least. Dr. Liden has been there for most of my adult life. It was a tremendous boost of my confidence to have someone so knowledgeable and so understanding in my corner, fighting so relentlessly for me to have a better life. Having him shepherd our kids through their attention struggles made him almost part of the family.

I am reminded of how uniquely talented Dr. Liden was now that I am searching for a new provider. One wouldn't even see us when she saw the doses the boys were taking. "You need to find a specialist." Another hadn't even heard of one of the non-stimulant medications we are taking. Another accepted the boys as patients, but he will only prescribe the "standard published dose" of their medications. I am sad, because my sons' lives are about to get a lot more difficult.

I am interested in your experience. Do you have a MD or DO or CRNP who really "gets" ADHD? Are they open-minded and versatile with medication? Are they willing to go against outdated conventional "wisdom" to provide treatment they know is safe? If you are willing to share their name, I would be very grateful. I won't rule out travel.

Thank you very much,

Dad

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STEM_Dad profile image
STEM_Dad

What a glowing tribute to Dr. Linden! We need more doctors like him who don't take the easy answers, but really get into the research on ADHD and really focus on what is the best treatment for each of their patients. It's too bad that Dr. Linden didn't have a successor lined up. (I'm in the Southern Tier of New York. It wouldn't been a long drive, but The Being Well Center is in close enough to me that I wouldn't have considered it, if I can afford it.)

Welcome to the forum ADDboyDad !

There's also a forum on this site named "CHADD's ADHD Parents Together". Since your boys have ADHD, too, then it should be another good forum for you to join. healthunlocked.com/adhd-par...

(For a few other forums and groups that I'd recommend, see my profile.)

I haven't met a doctor like that yet. I've had my ADHD diagnosis since September 2020, and lucked out that only the second medication that I tried had a great positive effect for me, and almost no side effects. I've been through 4 doctors since getting my diagnosis (due to changing jobs and moving and then my doctor moving to a different office).

There are no doctors or psychiatrists in my area that specialize in ADHD treatment. The nearest to me might be in Rochester or Buffalo areas.

My ex-wife is certain that our kids don't have ADHD, but it's the middle of their first year in public school (they were in homeschool before this school year), and I'm seeing them begin to struggle like I did...but I struggled in silence as a kid, and I don't want them to do the same. I ask my kids about school and encourage them to talk about it, the good and the bad. I'm also starting to teach them self-advocacy.

(I got my diagnosis after 19 years of marriage...she insisted that I didn't have ADHD, even though she had pointed out my inattentive traits repeatedly throughout our marriage.)

~~~~~

If I happen to find anyone remotely like how you've described Dr. Linden to be, I'll make sure to pass along the doctor's info on this forum.

ADDboyDad profile image
ADDboyDad in reply toSTEM_Dad

Hey, STEM_Dad! Thank you for the reply. I think I'll re-post this over at CHADD's ADHD Parents Together.

When I was in high school, my parents took me to a psychologist who did a series of standardized tests and concluded that I didn't have ADD, that I was just overly anxious and had an active imagination that made me prone to daydreaming. This was more than a couple of decades ago, so I can't blame the guy. Irrelevant standardized tests aside, if he had the benefit of the current DSM-IV criteria for ADD/ADHD even he might have diagnosed me.

But since he didn't, I just kept fighting myself and my daydreams for the rest of high school and into college. When college really became a struggle, my parents arranged for some other professionals to do some more tests, since they knew I "didn't believe the results" of the first tests. But these tests said the same thing. I remember telling my then-girlfriend that it was kind of a let-down, because that diagnosis would have explained a lot of things. Now all these difficulties are just my fault.

Then "Driven to Distraction" came out and the understanding of attention and executive functioning evolved enough that even slightly-well-informed professionals could tell that my attention wasn't as it should be, and that it was beyond my control by willpower alone.

I remember how emotional I was when I told our first son's kindergarten teacher that we heard her concerns that he couldn't stay on task, and we were going to have him evaluated over the summer. I said I didn't want him to have to struggle the way I did.

Not to take sides here, but is your ex-wife qualified to rule out ADHD in your kids? Has her skepticism about your diagnosis faded, or does she think the doctor was wrong about you? Are her conclusions based on training and research? Or her needs as a parent?

Dr. Liden often told the story about his own son being unable to sit still and having trouble completing tasks in school. It was becoming a real problem and he was venting his frustration to his colleagues at the office. They asked him, "Do you really not understand this? You see these signs in other kids all day, every day." It finally sunk in, that his son was going through what all of his patients were, and that he needed the same help. And even with all of Dr. Liden's training and experience - as a parent, it was hard to accept that his kid had a problem.

We can continue this conversation over at the Parents Together forum, if that would be more appropriate.

Anyway, thanks for chiming in. Best of luck to your kids in their new school.

Dad

STEM_Dad profile image
STEM_Dad in reply toADDboyDad

Thanks for sharing more about your own struggles to get diagnosed, and more about your son.

From what I read, I gather that you have the Inattentive presentation, like I do. Daydreaming was the first ADHD trait of mine that was noticed; it was my First Grade teacher who made the observation, back in the 1981-82 school year. ADD had only just been added to the DSM-III in 1980. Since I was an early reader (I had to go next door to the Second Grade class for my Reading lessons), and quickly caught up to the class whenever I'd been distracted, I wasn't regarded as having a learning disability. So, I was labeled a "daydreamer"...and life went on.

Later on in elementary school, I regularly forgot to do my homework at home, and so I'd hurriedly do it on the bus to school. So, my parents and teachers never knew about the issue because I didn't know that there was anything wrong with what I was struggling with. My struggles got worse with time (my symptoms remained the same, but school demands increased, and my strategy of doing homework on the bus failed when I changed school districts and my bus ride was reduced from over half an hour to just five minutes).

I was also identified as "gifted" in Fourth Grade, and continued with advanced classes through high school graduation. (In Jr High and High School, I completed my homework during the 10 minute passing period between classes...just minutes before it was due. That same panic-based strategy wouldn't work for me in college.) My memory was my Achilles heel, but I was distractible and inattentive, yet I was also highly interested in school and learning.

• Being both gifted and having ADHD made me twice-exceptional (2e), but I don't think that term was even in use when I was younger. (The closest term back then was "idiot-savant", which was used to describe severely impaired people who had some remarkable gift, like "Rain Man", Dustin Hoffman's portrayal of an autistic person with a gift for numbers.)

My greatest struggles were in college. I went through 5 schools and 5 majors, spread over 22 years...no degree. About 160 credit hours completed (not enough were upper division), of nearly 200 attempted. I also struggled a lot throughout my career.

~~~~~

My ex-wife is very smart in her own right, and pulled herself up by her bootstraps in early adulthood. She thrived for about a decade at her first regular job, doing clerical work at a school. She got to know many of the students (it was a charter school with an interesting model, which ended up increasing engagement between students and school employees). I think that all of the students she knew to have ADHD has the Combined Sub-type (now referred to as a Presentation), and they all also had learning disabilities.

• It was common for people to equate ADHD with learning disabilities in years past. That was the misconception that I had, which long delayed me considering that my issues might be ADHD. (It wasn't until I worked alongside thriving college students who were each open about their own ADHD diagnosis, and recognizing that I shared many of the same traits as them, that the idea began to form in my mind. Still, I didn't seek a diagnosis until I was also struggling with severe anxiety and finally started meeting with a mental health counselor.)

While my ex does acknowledge my ADHD diagnosis, I don't know her true opinion whether she recognizes that I have ADHD. (She also has a tendency to be opinionated about people that she deems as "wanting an excuse " or "just not trying hard enough". I think that's why she also feels like she has to keep insisting that her own health and mental health struggles are real...she doesn't need to convince me, I believe her; I'm sure she's projecting her own skeptical tendencies onto me and others.)

• She's smart and savvy, and I suspect that under the current DSM criteria she might have been diagnosed as Hyperactive-Impulsive ADHD as a kid, but back then she was just considered "difficult" (and the misconceptions that "only boys have ADHD" and "ADHD is a kind of learning disability" were prevalent; but ADHD was also thought back then to be mostly a "behavioral issue", which many people considered to be a product of poor parenting. So which is it, a learning disability or a behavioral issue? Neither, but can exhibit as if it's either or both.)

• I suspect based on some of her most repeated comments about my parents, that my ex has thought that my ADHD tendencies are the result of their parenting. (ADHD is highly inheritable, and my parents each have some ADHD traits, especially my dad...but they didn't teach me to be this way.)

Mamamichl profile image
Mamamichl in reply toSTEM_Dad

Hello! I hope I can help you find a good counselor too. Look at my comment in this post and see if you can find time to do this (after your application and stuff of course 😉). I’m so glad you are teaching advocacy skills for your kids. My bonus kid doesn’t have those skills much at 15, and always struggled with it, especially in 6th during Covid. My daughter advocates hard with us and I think she does some at school too. Its interesting how even with similar diagnoses, these kids are so different in skills and personality.

samami profile image
samami

I have a good doctor in NYC. I found her by looking for psychiatrists who specialize in ADHD in Brooklyn. Take a look on Psychology Today.

Search for ADHD psychiatrists and you can put in your zip code.

psychologytoday.com/us/psyc...

Here is a link to the person I see:

psychologytoday.com/us/psyc...

STEM_Dad profile image
STEM_Dad in reply tosamami

With the more rural areas I've lived in for the last 20 years, it's hard to find a provider near me on Psychology Today... but in general it's a good resource.

samami profile image
samami in reply toSTEM_Dad

Hi STEM_Dad, my psychiatrist, Dr. Abigail Cohen, also does virtual. We met in person the first time but since then, it has always been online. She only provides medication and does not do counseling. I don't think she does regular Insurance so I have to pay out of pocket. We meet every 6 weeks. I decided to go out of pocket as I wanted to be sure to find someone who believes in ADHD. She also gave me diagnosis during our first meeting. She has ADHD herself.

Mamamichl profile image
Mamamichl

I like Lisa fadorsen! She does have the ability to meet virtually. If you know “how to adhd” host, then you will get a similar vibe from Lisa. She also has adhd and will talk with you to process things. I still need a psychiatrist for meds and to take a gene site test, but Lisa is my go to for counseling.

I found her by getting a series of bad counselors and after complaining to an agency she worked with (she has a variety of them), I was told to find a list of providers your insurance covers and then google each provider. Each provider legally needs a synopsis page and specialties list online. Took me 4 hours to do so but I found her and she specializes also in my peas and anxiety. I feel so comfortable with her. If you’re not a talker though, or someone that likes to chat a lot, she may not be the right fit.

STEM_Dad profile image
STEM_Dad in reply toMamamichl

Well, Lisa isn't listed as a provider for NY, so I guess I'll do what you did Mamamichl and start searching though provider profiles manually.

I really think it would be good to get help from someone who really "gets" ADHD. (The counselor who first diagnosed me is a mom to kids with ADHD, so she understood very well, but couldn't fully relate to the struggle.)

Mamamichl profile image
Mamamichl in reply toSTEM_Dad

They don’t usually have a synopsis that says what conditions they have, but some are comfortable to share that info in the first couple meetings. It’s a way they build rapport. Also, she’s in Florida, but I’m in Michigan which is why I’m confused where she works and doesn’t. I hope you find someone that works well for you. 😊

Flurble profile image
Flurble

G'day ADDboyDad,

I hope this message finds you well. While I am unable to recommend a doctor here in Australia, I would like to share some insights into my current medication regimen and its impact on managing my symptoms, which might be of interest to you.

My treatment includes a combination of Ritalin, taken at a low dose of 5mg daily, and Modafinil. The reduced dosage of Ritalin helps in mitigating anxiety, a side effect I've experienced. Modafinil, on the other hand, affects a different part of the brain and causes less anxiety for me. This combination, along with a supplement called Alpha GPC, has significantly improved the management of my debilitating symptoms.

It appears that my body lacks not only Dopamine, Norepinephrine, and Serotonin but also Acetylcholine. Interestingly, Ritalin provides me with clarity rather than a stimulating 'buzz.' For a gentle lift, I use a 1mg Nicotine spray instead of coffee, as it allows me to control the dosage and avoid anxiety triggers.

Additionally, I've recently incorporated fish oil into my regimen, taking three triple-strength capsules daily. This change enabled me to reduce my Ritalin intake from 30mg to 5mg daily. I complement 150mg of Modafinil with a few extra shots of Nicotine spray (up to 6 times a day), which helps alleviate symptoms without the anxiety.

Furthermore, the value of physical exercise in my overall health and symptom management cannot be overstated. It plays a crucial role alongside my medication and supplements.

Diet also matters. Mine is mostly fish and vegetables along with probiotics such a Kimche for good gut health. I also use Align which I get from the US to manage IBS. A healthy gut helps my symptoms overall.

I hope this detailed account of my regimen offers some useful insights.

Paizley profile image
Paizley

ADDboyDad, Hello! This is my 1st time writing & being on this forum. I myself have been a patient of The Being Well Center owned & operated by Dr.Liden himself for over 10yrs. I had the same thought about Dr.Liden until I realized I had been brainwashed. If you would like to speak to me personally I’d love to share with you the ABUNDANT amount of Interesting facts that has been hidden about him & how he was a fraud. I’m trying to retrieve over 10yrs of my records that they won’t give me. Have you had trouble getting 20yrs of your records I'm wondering? Any Dr. that passes & every family member cousins, kids, wife have shut off ALL lines of communication tells me somethings wrong. I’m also owed a credit of $600.00. Do you know this man had family members working for him that have zero degree, his wife got in trouble for practicing to be a Speech pathologist for 30 some yrs with no degree or credentials.. (This is all public knowledge) I’d love to state everything I know because people like Dr.Liden should not be getting credit! Did u notice how before X-mas his employees went down to him & Sh at the front desk. Do u know a lot of pharmacies won’t fill his prescriptions? Why do u think he wanted you to use XYZ pharmacy, because of an in w/ones family member that owned a pharmacy that worked for him. Do u know NO ONE in the Gibsonia area would take his referrals after his death, because they know all about him. He used his Harvard degree to run that show! Why does one have insurance through Canada? I’m only trying to help u see what was hidden from our eyes to help you get some answers, as I was brain washed like u until I started digging when his practice went from a staff down to Less and less employees until their was 2.. He was a pediatrician that pushed Adderall & many caught on. He rebranded his name by moving to adults. He was 1 mean soul. Towards the end his behavior was so unprofessional & corrupt! This is my opinion & straight facts. He made the bed now he must lie in it! Thank you & good luck.

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