By Laura Heuer

Answers by Nannette Ohman, Executive Director

Autism Alliance of MetroWest, Inc.  

 First can you tell me how long it usually take to get an Autism diagnosis and the approximate age? 

It usually takes 6 to eight months to get an appointment with a doctor that can diagnose autism.-Typically between 2 and 4 years of age.

Are there any tell tale signs of Autism?  

Yes, No eye contact-appearing to be deaf, no language or loss of language- repetitive  play- social ineptness.

What are some steps a parent can take to help the process in getting an accurate diagnosis?

Making sure that they get a team evaluation/diagnosis is critical-making sure the doctor is reputable.

What are some of the best tips you feel will help a family once a family member has been diagnosed?

Get on with good services- do not get hung up on the labels. Call it whatever you want but make sure your getting appropriate services in the home and at school.  Early Intervention is key.

How do you feel is the best way to get your family and friends to understand this diagnosis?

There are several different ways- videos, books, support groups and talking to them. It depends on whom you are telling and how well you tell.For more information go to http://www.autismalliance.org http://www.autismalliance.org

This is for local Metro West families –in MA Call us at (508) 652-9900. 

http://www.dougflutiejrfoundation.org/ Doug Flutie Jr. Foundation For Autism 

Go to www.jakoter.com for organizing your health journeys and for expert medical advocacy and consulting. Order products and donate 25% of the proceeds to the Doug Flutie Jr. Foundation.

By Laura Heuer

Answers by Sharon Gacki of The ALS Association, St. Louis Regional Chapter

How long it usually takes to get a diagnosis of ALS?

ALS is often a difficult disease to diagnosis and can take some time.  There is no one test for identifying ALS. The diagnosis is made by ruling out many other possibilities and by observing the continuing loss of muscle over a period of months. Most patients are diagnosed by a neurologist and have undergone an EMG, a nerve conduction test, and a muscle biopsy for confirmation.

Are there any tell tale signs of ALS?

Because the disease is difficult to diagnosis and symptoms mimic other diseases, there are not many tell-tale signs of ALS.   Typical symptoms may include:  fatigue, respiratory concerns, muscle weakness or stiffness, muscle spasms, poor fine-motor coordination, swallowing difficulties, tongue weakness, speaking difficulties, and/or mobility difficulties.

What are some steps you can take to help the process along if there are any in getting an accurate diagnosis?

The diagnosis of ALS is usually done by a neurologist through a careful examination of the medical history, a neurological examination, and the routine tests used to establish a diagnosis of ALS.  By getting to a neurologist as early as possible and having the medical history in place, a person can help with the diagnosis process.

What are some of the best tips you feel will help a patient once they have been diagnosed?

Once a patient is diagnosed, he or she should contact their local ALS Association.  The St. Louis Regional Chapter offers a comprehensive network of in-home services, at no cost, to patient and family members. Additionally, a strong alliance exists with other not-for-profit organizations that are familiar with ALS. Lastly, a community partnership program with multiple local service providers offers specialized medical services to patients and families. Through these collective efforts, the chapter has created a solid continuum of care for ALS patients in Eastern Missouri as well as Central and Southern Illinois.

How do you feel is the best way to get your family and friends to understand your diagnosis?

Most ALS patients appreciate when their family and friends take the time and opportunities to

learn about ALS either though written material supplied by local ALS Associations or by using reputable Web sites.  In addition, family and friends should not be afraid to ask the patient questions about what is happening to them as well as letting the patient discuss their feelings about the disease and its progression.  Patients will tell the person if they are uneasy about discussing their diagnosis and symptoms. 

For more information

For more information about ALS, please visit www.alsa-stl.org.

Go to www.jakoter.com for organizing your health journeys and for expert medical advocacy and consulting.

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By Laura Heuer

Q- First can you tell me what a Certified Health Summary can do for a person   who is having difficulties getting a proper diagnosis?

A-The Lynx Certified Health Summary™, being developed from a person’s actual medical record, provides a complete, concise and reliable, summary of a the medical history so that all health care providers, the patient, and any caregivers can be using the same information for making decisions, and directing care.Typically, people with complicated or undiagnosed medical conditions see several doctors and care providers. The various reports quickly become lost in a stack (either paper-based or electronic) of records that often contain errors and incomplete or missing information. The patient rarely knows what is in their records and their care providers rarely examine the case history carefully in their limited treatment time. Being in pdf form, the Lynx Summary is quickly incorporated into any practitioner’s own medical record – either electronic or paper-based.   The Lynx Certified Health Summary™ affords people the chance to make sure the best available information is getting to their doctors and care providers. It also includes information not found in a typical medical record that can be invaluable for crucial decision-making.Additionally, the Review-by-Two process used to create the Summary means that a physician and nurse team is actively involved in examining every detail of the person’s care and are able to guide the development of problem lists and other essential questions to discuss with their providers.Finally, this concise Summary can be easily sent to experts for additional and often crucial medical opinions.

Q-How can someone determine if this of service might be right for them?

A-The Lynx Certified Health Summary™ is useful for nearly anyone to effectively organize their medical history and to manage ongoing changes and information. It is particularly useful for people who see several doctors; have a complicated condition or health history; change primary care providers; have difficulty finding a diagnosis or effective treatment; fill out many lengthy forms for procedures, doctors or clinics; are caregivers for another person; experience dementia or intense pain-related conditions; or anyone who wants to better spend their time and energy doing what brings them pleasure and joy rather than engaging in the frustrating and complex task of managing their medical condition.

Q-Did you get a Certified Health Summary?

A-I do have a Lynx Certified Health Summary™ for my middle son who has a very complicated medical history.

Q- How is it working for you?

A-Great! My son’s doctors and care providers are able to spend appointment time focusing on what my son’s current concerns and needs might be. Also, he had neurosurgery out-of-state last year and we were able to be completely relaxed throughout the whole experience. We had very little paperwork to manage because the Summary answered nearly every question the many new doctors and facilities had to ask.Also, we were confident, (including my son,) that the necessary research, investigation, and asking the right questions of the right experts had been done in advance. We knew we were doing the right thing, so there was really no stress or concern.

Q-Do you still keep your Certified Health Summary up to date?

A-We have the Summary updated as often as after every office visit, depending on what the issues are. When he’s doing well, we update usually two or three times each year.

Q-Do you feel it was worth it?

Each of my son’s doctors and care providers have said that managing his complex condition is made much easier because of the Summary. It acts as an ongoing ‘virtual’ care conference, so it feels to all of us involved like we are continually in good communication with each other through the Summary.  

A- Did you get a better diagnosis because of it?

Q-Absolutely. My son has an unusual combination of conditions. Having the diagnostic studies, procedures, results and the many experts and previous diagnoses (active and resolved) listed makes his situation credible and traceable. This helps current and new doctors have the details readily available to sort through options and thoughts and to know what has been already done or ruled out.

A What are some steps you can suggest if someone wishes to have a Certified Health Summary done?  

As far as we know, Lynxcare provides the only Certified Health Summary or professionally prepared summary of this type. People can contact us directly at 888.670.5969 or by email:  info@lynxcare.net to speak with someone about Lynxcare’s summary or services. Please let us know you heard about us through Jakoter!http://www.lynxcare.net/hlthrec.html

Thank you! I like the idea of having a ‘virtual’ care conference.

Dare Devil  

My son who is active and allergic to antibiotics, latex and a host of other things took a tumble. And I mean a tumble! He rode with no hands with his feet on the pegs of his bicycle down the biggest hill in our neighborhood. Both my husband and I have told him never ever to do this. But, I guess being a twelve-year-old dare devil with no fear and in the infallible stage, our “NO” did not mean too much. From what his brothers said, he flew over the handlebars and just skidded on rocks and pebbles.  

Trip to the Acute Care Center

So here I am not trying to say I told you so and keeping it together knowing if he gets an infection, we have a problem. So, I gather our belongings and off to the acute care center we go. Now I am the expert and all, I should know what to bring ~ bring the health organizer with all of his information and the insurance card and that’s that. Well with everything racing in my mind I forgot the organizer! All of the important information is in there about antibiotics and tetanus shots etc. Now I have to go by memory! i did have the insurance card because that is in my purse. 

Learning Experience 

This trip was just routine. I had the answers because I knew my son would be okay. I was calm. No broken bones, he could breath, he was conscience. Of all the things that could of happened that day, they did not. He learned that hard way that Dads and Moms say no for good reasons and I learned something too.

Put the Most Important Information In Your Purse or Wallet

Have important information in wallet or purse1. Emergency cards2. Health Tag / Medic TagThis should contain allergies, medications, doctor phone numbers and any illness. Cover yourself always! Even put an emergency card in your car if you think it will help. Being over prepared is so much better than being under prepared and lets face it, we will never get in a jam for being prepared. 

What is Next 

As always, as we teach my son in return he keeps teaching us. He thanked his angels and so did we. 

Jakoters Healthy organizers tip of the day- Keep all health-related documents including family medical history, symptom journals, test results, immunization charts, list of prescriptions taken, insurance coverage, blood work, question/answer sheets, etc. in one organized binder.  Having the information at your fingertips can be a real timesaver and it can also help ensure everybody involved in the care of a family member has the information that they need.

Finding that there is a problem with your health can be devastating, heartbreaking and definitely unsettling. But, what do you do when you know something is not right but you and your doctors cannot find an answer? 

Do not give up.

§   Find new doctors with a fresh look at the situation they may have new information that another doctor in the past did not have. A new doctor may have the key you have been looking for.

§   Do not give in to “it is in your head”or the nay sayers. You know how you feel. But be realistic. Write down all your symptoms and medications. This will make you a more reliable patient.

     .  

Write down your symptoms daily.

§       When you have solid symptoms and daily writings of your symptoms then the doctors have more to go on to figure out the puzzle.

§       When you are writing you may even find patterns that you may have not seen before.

Have all your questions written out ahead of time.

§       Everything you need to ask should be written out ahead of time.

§       Once you ask your questions make sure to write down your answers.

§       Write down your next steps.

§       Write down how to take any new medication.

§       Write down where to go next (directions, phone numbers, etc.)

     .  

If at all possible take someone with you to your doctor appointments.

• They will give you support in remembering what was said and what to do next.

§       They also are good for support in asking questions you may not think of.

§       Your support person also can have a different perspective then you and a lot of times this is good!

Follow through.

• When you do get a doctor that you feel is on the right track then follow through.

§       Do what needs to be done to get the “right” diagnosis.

Support.

 If you need support make sure to ask!

 There are several support groups in almost every category of illness.

 If you still cannot find a diagnosis you are not alone. There are more than 6,000 rare disorders that, taken together, affect approximately 25 million Americans. http://www.rarediseases.org/

http://jakoter.com for organizing your health journeys and for expert medical advocacy and consulting.

http://media.EveryPatientsAdvocate.com/ Another great source for information.