How to Prepare for an ASD appointment
1. Have your child’s medical files sent before the scheduled appointment.
If you have your own copies of your child’s records consider scanning them and placing the information on a thumb drive. Please forward this to our office. If the file is large we can have it uploaded to our cloud service, just ask.
This will result in a searchable and inexpensive means of being able to share your child’s records. Consider a 8gig or more sized thumb drive. This will also allow you to save the pictures and video which will document MRI’s , behaviors and more.
If you don’t have your own copies yet, you will need contact your current pediatrician’s office and fill out a HIPAA Records Release Form to get the records. This can be done online.
You can have the office copy and mail the records to the doctor directly which will typically incur no cost to you, however always ask, Alternately you can have them copy and give you the records directly. Typically their office WILL charge you for copies. Up to $1 per page and it’s legal for them to do so.
Due to this cost, we recommend that YOU keep copies yourself and either scan or photocopy whatever you need to give out to others. Always maintain the main file so you don’t have to keep paying for it over and over and it’s up to date.
At no charge, we provide you a secure patient portal and share the laboratory information with you. It can be easily downloaded and we encourage you to have a copy when we review the results.
Also note, that there are a number of types of forms in the file you may or may not want. These may include copies of any school records or private therapist progress notes. They can be helpful and should be requested prior to our visit.
Only if you LEAVE the doctor’s practice and transfer to a new doctor (not an additional doctor) do they have to send your records for no charge to you.
2. Start the gluten and casine free diet, if you haven’t already.
The GFCFSF diet is one of the foundations of most biomedical treatments.
The diet makes all therapies and treatments work better and provides a truer way to evaluate other treatments. Since the changes can be very beneficial *It also removes the stress to the immune system and gut that foods can cause, so we can deal with the other problems
I’m aware of the controversial studies that suggest that this diet is inappropriate and not scientifically documented. The one caveat, I’ve seen it help dramatically in many cases and…. we can always change back to where we were if appropriate.
If your child isn’t already on the diet, TACA has a starter guide here and you can apply for a TACA Parent Mentor to help guide you if you would like 1 on 1 assistance.
3. Get connected.
If you live in a state with a TACA chapter, go to meetings if you can or join their Yahoo group and Facebook page, which are listed on their chapter website page.
If you don’t live in a state with a TACA chapter, you can join the TACA-USA Yahoo group and get lots of support and ideas.
Consider applying for a TACA Parent Mentor who can help guide you 1:1.
4. Start reading.
TACA’s website has hundreds of hours of reading to be had, available for free, 24 hours a day.
Learn about the basics on your own (with the help of TACA, other parents, books and the internet), this allows you to reduce medical charges and most importantly helps you to understand the what and why of testing and treatments
5. Insurance coverage or not.
Most physicians who deal with complex patients will never receive adequate reimbursement from any insurance firm. With that said you can seek reimbursement for the office visit and laboratory services. Many time the laboratory fees can be billed to your insurance carrier, even when the office call is not recognized. We will supply you with the forms and offer reduced cost access to many laboratory tests, please ask.
Some labs that are needed CAN be done through insurance-covered lab companies, like Labcorp or Quest. If you cannot afford the specialty labs that we want to use, let us know. We will order as many through the insurance company designated labs as possible.
Autism treatment is a marathon, not a sprint so learn how to use your money wisely, or you will run out. If you truly cannot afford the costs of biomedical treatment, there are many autism community grants and ways to save money on all parts of this journey.
6. Write down all of your concerns for your child.
List all of their challenges, medically and behaviorally. Make particular notes for poop, sleep, skin, stimming, eyes, speech, safety and behaviors. We will give you an ATEC form to keep track of these and other behaviors at both the start and during treatment.
Print out a copy of the traditional developmental milestones list and mark next to each when your child actually did them.
7. Know where you are headed.
Know what the typical path to treatment looks like so you can know what items you need to focus on first. We will discuss the pathway with you as it’s important to know when to change and move forward.
8. It takes a village.
Bring an audio recorder (your smartphone can record too) to the meeting as we will give you a LOT of information and it’s best to review after the visit so you don’t miss important steps. As an alternative you can bring another person to take written notes. If you can bring a third person to care for the child too, that’s ideal, so you are not distracted. If not, make sure you pack a bag of food, toys, iPad, books, etc. to keep your child happy and engaged. These appointments are often 1.5-2 hours, so pack enough of everything to last.
9. Be on the same side.
Agree with your spouse BEFORE you go in on your roles at the appointment and how much money you have to spend. Doctor Kadish is not a marriage counselor and at multiple dollars an hour, you don’t want us spending time negotiating with you and your partner to be on the same page.
10. Go slow.
When you’re new to the biomedical treatments approach you’ll be introduced to literally 100’s of treatments, all at the same time. However it’s a bad idea to try everything let alone a few at a time. First, if your child has a reaction – good or bad – you won’t know which treatment caused what. We both need to know what causes what reaction so you’ll know whether the treatment should be stopped, adjusted or continued. Therefore, we recommend that you wait 2-3 weeks in between any new treatments, medical, educational or otherwise.11. Go in order.
List things in order of importance and implementation. Know what needs to be on board, before you start something new. When we start prescribing, make sure you take notes on the order of implementation. We make a point of including this information in your patient portal so don’t worry if your not certain or want to review at any time.
If you have budget limitations (and who doesn’t?) evaluate the cost of each proposed treatment and test, then ask then ask us to help you prioritize them, within your budget. You’ll want to start with the items that impact your child’s functioning the most first and work your way to toward those of less importance. This is very important as some treatments may be costly but return only a small benefit to YOUR child’s progress.
13. Be prepared.
We will review with you whats expected when starting a new treatment including: How soon should I see changes? What changes should I expect to see in my child? What would a negative reaction look like? What do I do in the case of a negative reaction? How do I know if I should stop a treatment or push through the bad stage? Who and when do I call in case of emergency?
14. Standard operating procedures.
Learn what medical tests are commonly ordered by reviewing the information in the TACA booklets or online. It can be confusing and no you don’t need to know every one ! We will take the time to explain and detail what tests area appropriate for your family member.
15. Supplemental purchases.
You are not obligated to buy any items from us. Our office offers discounted rates for online access to high quality supplements. Our only concern is that you purchase a quality product and not junk. Please read our take on the differences in supplement products.
16. Ask for emergency contact information and rates.
We will do phone and email consults and will charge for them, even if they are an emergency.
17. Ask about next steps.
Most of the test results, with a few exceptions, are reported within days. We review and post them in your patient portal with notes. Typically we will want our follow-up appointment to be arranged as soon as possible. We will make that appointment today before you leave and verify that the tests are available before that date.
18. Stay in good standing.
Know that you must be seen in person once per calendar year in order for a doctor to write you prescriptions. The rest of the follow-ups can be done via phone and email if you are too far away to go in person. Please let us know if your unable to attend an appointment with plenty of lead time. Our scheduling is intentional to make certain that you get the time needed to have your questions answered and fully explained.
19. Save all your bills and receipts.
You can write off travel and medical expenses, including diet foods and supplements, on your income taxes each year.