Where do I start?

with No Comments

So if you’re like me and most of the parents out there that were told that the only hope you have is that a stranger can come work with your child, yes a stranger, you know the type of people that you’re child so deeply loves to be around, and then lay the rest in the hands of hope… while the items listed below are generally the process flow to expect, some of these items may vary from state to state. Please read all of the steps first because some items should be done in conjunction, for example setting up appointments for evaluations. Waiting lists are long so it is important to set those up as soon as possible.

So, where does it all start? Where do you begin?

1) Spotting and Confirming the signs yourself:

See a some signs/symptoms of Autism Spectrum Disorder

2) Getting A Diagnosis:

Getting a diagnosis can be a long long process. If your hearing test (#2) comes up fine, then you will want to act quickly and schedule your Developmental Pediatrician eval. Some waiting lists are up to 18 months!!! While this is ridiculous, don’t sit and wait around for that appointment before doing anything else. Schedule your Speech and Language (#4) as well, Schedule Early Intervention Services for evaluation.

  1. Pediatrician/Family Doctor – If your family doctor hasn’t noticed anything by now (like ours never did), then you must let them know your concerns and they will most likely recommended a hearing test first…
  2. Hearing test (ABR) Sedated or Standard – We did the standard test but Finn was uncooperative and therefore we had to have him sedated to test his hearing. After you get the results from your hearing test (same day), you will know whether or not you need to proceed to the next step.
  3. Developmental Pediatrician/Child Neurologist   Your family doctor will refer you to a developmental pediatrician/child neurologist .(This is your long wait) Call your local dev ped or if referred by doctor and start the process to get paperwork and on the list.
  4. Speech & Language Evaluation – While this may not be accepted as an offical diagnosis it is an important and necessary step in the process and you will need to get this evaluation done to see where your child stands. Look up your closest hospital/children’s hospital or local specialist for this. We went to CHOP and/or affiliates for all of our evaluations. You will most likely seen for this before the dev ped appointment.
  5. Early Intervention Services – These are only covered until your child is 3 years old! Try and get these services as soon as possible. They will come out, do an evaluation, establish costs (based on income), and assess what therapies are right for your child (Speech, Occupational, Development, etc). Then they will work with your schedule to have therapists come out and work with your child and you on specific set plans for your child and your family goals. They will give you an “unofficial” diagnosis based on their evaluation and experience.

So my child may have Autism, now what?

Now you have or are on a list to be seen to get your diagnosis. In my option I see two routes, CONVENTIONAL AND NON-CONVENTIONAL and they should parallel each other, both are important for similar and different reasons…

3) Treatments/Options to Begin Recovery:

  1. Biomedical Doctor (This is every bit official in my mind but is not recognized as official). Find your DAN Doctor at generationrescue.org. Research their protocol. Read reviews. Find Real Testimonials. Schedule an appointment. We use Dr. Neubrander. This can take time!
  2. Testing & Labs – (While ASD is a known as a neurological disorder or at least is established as one, no blood tests are going to state a child is Autistic). However, through genetic mutation (MTHFR Panel test reveals that virtually all ASD children have a genetic mutation) you can get some actual proof of what is going on with your LO, This is an important start to begin treatments. Your DAN doctor will order this along with other necessary tests based on your case (iron, vitamin, etc) . He will set forth a plan based on those results for what your regimen will be (we are doing mb12 shots currently) and what supplements are needed.
  3. Diets: With your DAN doctors blessing (so as not to interfere with any clinical trials of shots or treatments) you can begin a special diet. There are many diets to choose from. You can start with the most popular (GFCF) or simply choose one you feel is right for you. To name a few*
    • GFCF (Gluten Free Casein Free): Foods and nutrients can impact the symptoms of autism. Autism is a whole-body disorder, the gut-brain connection is an important area for parents to understand. The foods and substances that children eat directly impact what happens in their brain—and parents’ food choices can have a direct affect. These GFCF basics can help you get started with this important dietary approach. With a little practice and familiarity, GFCF can easily become a regular part of your family’s health and healing program.
    • Specific Carbohydrate Diet (SCD):Removes all complex sugars and starches in addition to gluten and casein.  Eliminating sugars and starches starves out the yeast and bad bacteria (which feed on complex sugars) and therefore helps alleviate side effects created by yeast and bacteria overgrowth, which include gastrointestinal issues, headaches and hyperactivity.
    • Body Ecology Diet (BED): Based on the concept of a natural balance of microorganisms that are involved in a range of functions in the body, and that this balance might be lacking in individuals with autism.  The three basic elements are adding cultured foods (such as yogurt and fermented vegetables), integrating “good” fats (flaxseed and extra virgin olive oil), and significantly reducing carbohydrate and sugar intake.
    • Low Oxalate Diet: Limits or eliminates foods with high oxalates.  Oxalates are sharp crystals that can lead to oxidative damage and contribute to gut inflammation in individuals with issues processing them.  High oxalate foods include beans, potatoes, spinach, berries and chocolate.
  4. Super Vitamin – MB12: In shot (most effective) or nasal spray form if you absolutely can’t do shots, but it is the best way to get mb12 into the child. This will start out as an every 3 day regimen of subcutaneous shots to the buttocks with a small diabetic needle. Applied after Lidocaine numbing cream. This is necessary for success!
  5. Supplements: These will be based on your child’s tests. Some examples are …
    • Folinic Acid
    • Vitamin D3 Liquid
    • Liquid Biomax Series
    • Glutathione
    • Vitamin Powder Mix
    • Calcium Citrate
    • ProEFA Liquid
  6. Some Alternative Supplements to try out, not recommended w/o suggestion by doctor:
    • TMG
    • DMG
  7. Additional/Next Steps Treatments:
    • HBOT (Hyperbaric Oxygen Treatment)
    • Chelation (Heavy Toxins Removal)
    • Anti-Fungals
    • Anti-Allergy
    • PANDAS
    • Gastrointestinal

4) Got my Diagnosis, we’re getting treatment, now what?

Therapies… You will most likely have 6-month follow-up evaluations, hopefully by that time you will have seen some improvements with the changes above. Continue your therapies, if using Early Intervention Services, they will run out at 3 years of age (as stated above). They will assist you in transitioning to the next stage, pre-school, special schooling, private schooling, or more specialized services. There is no way this could ever be a bad thing for your child. Therapy is an important part of progress.

Treatments…Continue to take supplements/shots. This will be something you may need to do for a few years. I some cases your child may always need the mb12 and/or vitamins to help a deficiency. I read that some are life-long battles testing for this level and that, always trying to balance our the gut flora. Save test results to compare for later results. Not only experience the changes but see them with proof!

Diets…Continue with diets. Some diets, like going gluten-free can take around 6 weeks to see benefits from and clear the system of gluten. Do not give up without being completely gluten-free for at least 4-6 weeks. Your child may not ever be able to process those food items. Some children can get off the diet or at least partially (only removing gluten, but starting up milk-based products). There are enzymes a child can take to help get them back on it gluten if you choose although if GFCF works and you get it down pat and it is helping your child I don’t see why you would do that unless they are recovered.

4) Additional Services:

Local Support Groups
Generation Rescue
Autism Insurance in NJ

5) Gaining Family/Friends Support

It can be hard to finally allow yourself to come to terms with an ASD diagnosis. It may be a struggle letting people know that your little one has and may always have problems. You will encounter people who pretend they care but secretly mutter under their breath, “thank god it’s not them”, you will have people stare at you in stores and restaurants, odd awkward silences at introductions because you have to give every new person a few moments to resolve in their minds why your child didn’t look at them when they said hi, didn’t talk, was repeatedly jumping instead, etc. All that before decided you should do a long or short version of “whats wrong with my kid” and even if you aren’t seeking pity, it might feel like you are, because honestly it is just too sad of a thing. It a rough road. You may feel guilty, and helpless and alone. It is a struggle. Every night before I go to bed I have a lump in my stomach and burning in my chest. When will this nightmare end? When will I awaken to find my little guy will greet me when I say good morning at him in the morning. When will I say I love you or give him a kiss and get that reciprocated? When will he know what I’m saying to him and be able to respond? It is brutal seeing my son locked up in his own body. With all that said however, there are many parents dealing with the same. There are parents dealing with worse. There are many understanding people and family members that are there to support you and listen. If you can’t seem to find support in real life, reach out online, heck message me. There are entire sites, blogs, boards dedicated to helping parents with this horrific growing epidemic – Autism. Don’t give up, your child is worth it…

Leave a Reply