PATIENT HANDBOOK
Common Household Exposures to Potential Toxins
Follow-Up Form (must be completed before each appointment)
Welcome to Creation’s Own—a place where you and your family can find answers and hope for your child with developmental issues.
At Creation’s Own we strive to address the needs of your child in very specific ways, utilizing traditional science and medicine as well as recently developed and recognized treatments and therapies. The doctor/PA is not the primary care physician for your child, but many times will work with your pediatrician so as to provide the best possible care for your child.
We consider the biomedical, nutritional and behavioral needs through assessment, testing, and supplementation. As a team and through the grace of God, the parent, doctor/PA, and nurse provide a multifaceted approach to address the many issues that can impact the general health and behavior of your child.
THIS HANDBOOK WAS DESIGNED TO ANSWER MANY QUESTIONS YOU MAY HAVE ABOUT YOUR CHILD’S TREATMENT. PLEASE READ IT CAREFULLY. WE SUGGEST THAT YOU PRINT IT OUT FOR FUTURE REFERENCE AND ADD YOUR OWN NOTES AND QUESTIONS.
The goal of our interventions is to heal the main areas of injury affecting the child with autism or other developmental problems. Four of the main problems that children with autism face are inflammation, metal toxicity, immune dysregulation, and oxidative stress.
The brain is the nerve center for the body, and has two major jobs.
1. Regulating all body functions
2. Processing the stimuli and instructing the body how to respond
If impaired due to inflammation or toxicity, the brain may not perform these vital functions.
The gut (the gastrointestinal tract) has 3 major jobs.
1. Absorption of nutrients
2. Eliminating toxins from the body
3. Immune system assistance
If the gut is inflamed, these jobs are done improperly.
An impaired immune system is the other area we see as a concern in many of our children. Reactivity to food, seasonal allergens and environmental exposures are addressed if this is an issue for your child.
COMMONLY PRESCRIBED LAB TESTS
This list explains some of our more frequently used tests, but should not be considered all inclusive. Because each child’s treatment is individualized, the tests ordered for your child may be different from those shown below.
1. CBC (complete blood count)
Results reflect the number and type of blood cells identified (ie: red blood cells, white cells, platelets). This can reveal an infection, anemia, or other blood related illness.
2. CMP (comprehensive metabolic panel)
Results show the body’s metabolic function and general status of some major organs like the kidney and liver.
3. PRBC (packed red blood cell elements)
This test identifies minerals/elements present in the blood, while indicating if they are deficient, excessive or sufficient for proper health.
4. Cysteine and Sulfate level
These are essential in the process of Glutathione production and detoxification. Checking the levels will allow the doctor to decide which supplements may need to be added or reduced.
5. Anne Connolly
This lab tests for antibodies to brain endothelial cells. If positive, it indicates an inflammatory response in the brain.
6. Ammonia
This by-product of amino acid and protein metabolism is toxic to the brain if is highly elevated. It can be elevated for many reasons, including mitochondrial dysfunction which impairs the body’s ability to properly eliminate the ammonia.
7. Lactic Acid
This is one of the waste by-products resulting from a chemical reaction when the body metabolizes glucose for energy. The amount can be high in the body for various reasons, ranging from extreme exercise to mitochondrial dysfunction.
8. Immune studies
These tests determine the status of the immune system, indicating immune deficiency, immune dysfunction and antibody responses.
9. Anti-Gliadin AB
This test shows the presence of antibodies when there is a reaction to gluten.
10. Testosterone
This hormone is measured because some autistic children have been found to have high levels, resulting in precocious puberty and/or aggressive behavior.
11. TSH (thyroid stimulating hormone)
Testing indicates the level of hormone in the circulating blood.
12. Lead level
This test indicates if there has been a recent exposure to lead. It doesn’t measure the lead stored in tissue or bone, but the lead found in a random blood sample after an acute exposure.
13. Urinary Porphyrin/ Neopterine/ Oxidative Stress
14. OAT (organic acid test)
This urine test shows the presence of yeast and fungal and bacterial metabolites. If elevated, this may indicate imbalance of the gut flora.
15. UTM (urine toxic metals)
This lab tests the urine collected after a chelation dose to determine the effective pull of the metal toxins from the tissues.
16. CSA (comprehensive stool analysis)
This includes various tests to determine the presence of bacteria, parasites, yeast or other metabolites in the gut.
OTHER: _______________________________________________________________________________________________________________________________________________________________________________________________________________
These may be considered, or your doctor/PA may add other things to this list.
· Supplements including vitamin and mineral replacements, amino acid replacements, digestive enzymes, probiotics, etc.
· Medications including Methyl B12, anti-fungals, antibiotics, anti-seizure meds, etc. Some over the counter medications may also be used.
· HBOT - hyperbaric oxygen therapy
· Sauna
· Chelation
· IVIG
· Dietary changes
· Occupational/ Physical therapy
· Speech therapy
· ABA or other behavioral therapies
· DO call ahead for an appointment as schedules fill very quickly.
· DON’T call for a 15 minute appointment and expect to go to 30 minutes unless the schedule allows for it. It is better to schedule for enough time to go over all of your questions or schedule for shorter appointments more often so that all of your questions can be answered.
· DO call us as soon as possible if you must cancel an appointment. Late cancellations and no-shows may result in a bill for that time slot. Our Appointment Cancellation Policy explains our requirements for cancelling an appointment without incurring a charge. We suggest that you read it carefully and print out a copy for your records.
· DON’T fail to call us in the event of a missed/cancelled appointment to reschedule. Follow up is very important.
· DO email the nurse with brief concerns or questions, but limit them to things she can respond to quickly (such as prescription refills) as she is assisting the doctor/PA in seeing patients throughout the day.
· DON’T email the nurse with multiple questions or severe concerns that only the doctor/PA can address. Please call for an appointment to discuss this with the doctor/PA as the nurse is not equipped nor is she permitted to do “consults” for you by email. If your child is acutely ill, do not wait for us. Take him/her to a local physician, or if it is an emergency, call 911.
· DO fill out and send in your follow-up form. Our doctors require that this form be completed and returned prior to each office or phone consult. This enables you to organize your concerns and questions, and saves you time and money at the time of your consult.
· DON’T forget to list all current meds and supplements and the pharmacies you use with their phone number.
· DO hope, DO try, DO dream.
· DON’T ever give up!
AVOID COMMON HOUSEHOLD EXPOSURES TO POTENTIAL TOXINS.
· Tap water - Have your tap water tested for metals and bacteria.
· New clothes or linens - Wash all new clothes and linens before using to remove chemicals that may have been used to treat them.
· Additives, preservatives, and dyes in food - Please read your labels and be on the lookout for offending items.
· Fish - Many fish remain high in mercury and can be a source of repeated exposure.
· Cleaners, dish soaps, etc. - Read your labels. Avoid ammonia products.
· Bug repellent - DEET is not a recommended repellent as it is a neurotoxin.
· Sunscreens, lotions, bath products - Again, read the labels and avoid the products that have long lists of ingredients. Also, avoid “thalates” in the products.
· Swimming pools - If you take your child swimming, use precautions to avoid extreme exposure to chlorine. These include rinsing well after swimming, use of Mag Sulfate cream and activated charcoal.
READ THE LABELS ON ALL FOOD ITEMS TO ENSURE THEY ARE PERMITTED ON YOUR CHILD’S DIET.
These are some websites that may be helpful when implementing a new diet:
· GFCF - www.autismndi.com with Karen Serrousi and Lisa Lewis
· Specific Carbohydrate Diet - www.pecanbread.com
· Low Oxlalate Diet - www.lowoxalate.info
1. I have received a kit in the mail after a phone consult. What do I do with it? First, look at the box and see which lab it is from. Look at any prescriptions that have come in the mail for you and it should refer to the kit if it is a blood test like “cysteine, sulfate or PRBC.” If it is a urine test, full directions accompany the test. We usually include a price and instructions for insurance also. If you have not gotten that information and need it, call the office. Most urine tests are a first morning urine, but if it is a UTM (urine toxic metal) test kit, it is usually done after a chelator is given either by mouth, rectally, or by IV. It is important to indicate on the requisition if this test is “post” chelation, and what type was given. Finally, once your sample has been collected, most kits have a shipping bag included that is to be used to transport the specimen to the lab. It is very important that you follow the directions for preparing the specimen for transport so that all safety precautions are taken to ensure proper handling. If you can not send the test kit the same day it is collected, store the specimen in the refrigerator until it can be sent. There are a few kits that you may encounter that do not include a shipping bag, (i.e. Anne Connolly kit). You may transport those specimens using the carrier of your choice.
2. I have a prescription for chelation in suppository form. How do I use them, and what do I need to know about the use of suppositories? The use of rectal suppositories to deliver a medication is a very effective way to give medicine. The medication is absorbed quickly and efficiently by this route. When inserting a suppository, it may be helpful to lay the child on his/her right side with the right leg bent slightly and open the buttocks to expose the anal opening. The suppository should be removed from the foil or plastic packaging, and lubricated using petroleum jelly or KY lubricant. Gently insert the suppository and push slowly until you feel the sphincter (the circular muscle that closes the anus) close around the suppository. Try to stay with the child for a period of time (30-60 minutes) to ensure he/she does not bear down to expel the suppository. After a few minutes, that sensation of “having to go” will subside and your child will be more comfortable. Keep the suppository in as long as possible. If it slips out after only a few (0-20) minutes, reinsert if possible. If it has gone into a potty, and is not retrievable, you may want to insert a new suppository. If the suppository has been in for 30 minutes or longer and is gone down the toilet, do not insert a new suppository.
If you are collecting a UTM, collect for 6 hours after the chelator. If the chelator is a suppository, you may want to insert the suppository late at night (around midnight), and collect the first morning urine (around 6AM), which is fine. The key is to collect the urine for a 6 hour period. If the chelator is oral, the doctor or PA will direct you as to when and how long to collect the urine.
3. What do I do if my child develops a rash or illness and we are out of town patients? The first thing to think about when a child develops a rash is if there is something new in the house—new food, clothes, detergents, soaps, carpet, etc. If everything else is the same, how about a new medication or supplement? Is the child otherwise well or does he/she have a fever, nausea or vomiting? Is anyone else in the house or classroom sick? If you can, write these details down and call your pediatrician’s office. It is very difficult for our doctor to be able to know how to treat a rash if he can’t see it. Most often it is something minor that the pediatrician can look at, and treat very easily. The same goes for minor illnesses and viruses. If you have an emergency, please call 911, or contact your local emergency room or poison control center. If you think that your child is having a reaction to a supplement or medicine that our doctor/PA has ordered, call and talk with a nurse or call for an appointment to talk with the doctor or PA. However, if it involves difficulty breathing or any other emergency, again, contact 911 or an emergency room for help.
4. What do I do if I need something like a letter or verification form for school or insurance? Call the office and ask for Tonia, or email her at tonia@icdrc.org. She can help with getting forms and letters for you in a timely way. Please give as much notice as possible as she has numerous patient requests daily and takes them in the order received. When a request for a letter of medical necessity is brought to our staff, it is important to recognize that the tests that are needed and ordered may or may not be covered by insurance. It is unfortunate, but a reality that insurance companies cover very little of what our children need related to their diagnosis of autism. That being said, we will attempt a letter if the request by the insurance company for justification is brought to us. We are obliged to charge a nominal fee, usually $15, for letters. We cannot do multiple letters to appeal an insurance company’s refusal to pay a claim.
Regarding new meds ordered after a consult, if they are able to be filled at a commercial pharmacy, we will fax the script to them and you can pick them up from there. Please give us a name and phone number of your local pharmacy. If the medication is compounded, we will fax the prescription to the pharmacy, and they will contact you regarding shipping and payment. Give them a few days to receive the order and get in touch with you. If you have not been contacted within 3-4 days after the consult, contact our office and we will call the pharmacy to clarify things for you.
6. When do I need to call or come back to see the doctor/PA? As your visit comes to a close, your doctor or PA will tell you when he wants to talk with you again. Generally, 6-8 weeks is recommended for follow up as this gives the doctor/PA an opportunity to hear about progress or problems with the current plan of care. It is important to note that those children who follow up regularly generally have a higher level of progress than those who do not follow up regularly. That is the only way your practitioner will know if the treatment plan is working, or if it needs to be changed. If your child is chelating, you must make sure to check labs every 3 months (or more often if the doctor directs it), as these medications are ones that can affect the liver, so close checks should be made to ensure your child’s safety. Please call us if they are due, and we are happy to send you a prescription for the tests and kits if necessary. If you are local, you can talk with your nurse or MA and schedule your blood work at the office. It is extremely helpful to our staff if the parents keep track of when the labs are due and proactively seek to get them when needed.
7. Why do I need to complete a follow up form every visit? This allows you to organize your questions and identify areas of progress, concern, or regression in a way that will help the doctor review the items of importance before visiting with you. The more organized the visit, the more money and time you will save. Please list on each follow up form all medications and supplements, their doses, and when you give them. Also include a current weight and a local pharmacy that we can call if the doctor orders a commercial brand medicine.
8. My child was ordered Methyl B12 injections. Is there a video or website I can look at to teach me how to give these shots? There is a website (www.drneubrander.com) that has a section called “videos.” Click on “examples of giving a shot.” You can find videos that show the technique to use and offer helpful information when learning how to administer MeB12 injections.
9. My doctor says I need to give the injections every 3 days. Does that mean I give it on day three, or does it mean there are 3 days between injections? The easiest way we use to describe “every three days” is to take a calendar. On Monday write 1, on Tuesday write 2, on Wednesday write 3, on Thursday write 1, on Friday write 2, on Saturday write 3, etc.—and on each day with a three on it, give the injection. If the doctor wants a different schedule, mark it on a calendar accordingly.
10. How do I get the numbing cream for the shots? Your doctor can order this cream with the injections at the compounding pharmacy, or you can get it by prescription at a local pharmacy. Just tell the doctor or nurse you need it and we can get it ordered.
11. My child has been ordered several supplements. Where do I start? Generally, it is recommended that you start one supplement at a time and in a reduced dose. Start with one quarter to one half of the full dose and gradually increase it over 4-5 days before starting the next supplement. The reason for this is to ensure that the child tolerates the supplement or medicine well, and you can observe the child for positive reactions as well. If you give too many things at once and the child does not tolerate it, you have no way of knowing which supplement or medicine he/she did not tolerate.
12. My child has just started chelation; how quickly should we expect him/her to demonstrate improvement? Some children respond favorably right away after starting chelation treatment. Other children may demonstrate irritability, fatigue or hyperactivity. Reponses vary from child to child. If your child demonstrates difficulty breathing, or any other severe reaction, call 911. If he/she develops a rash or other mild reaction, you can stop the medicine and try oral Benedryl. It should be noted that improvements are generally seen over months.
13. My child has started antifungal therapy for yeast overgrowth in the gut. Why does she look sluggish and grumpy today? When there is an overgrowth of yeast, and an anti-yeast medicine is started, you may notice the child’s behavior gets a little worse before it gets better, or he/she may become sluggish or irritable. This is typically due to “die-off” of yeast and release of exotoxins. This can last from one day to 3-5 days, at which time you can expect an improvement in behaviors. Hydrating the child may help as well as use of activated charcoal. Talk to your doctor if you have any questions about how to give activated charcoal.
14. How do I get copies of my medical records from Creation’s Own? Fill out the Request for Release of Medical Records (Medical Release Request) and return it to us by mail or fax. Please allow up to fifteen business days for us to process your request.
We recommend that you take many notes between visits so that you can track how your child does from visit to visit. Note trends in behavior, weight gains or losses, and whether you notice more language or eye contact, etc. We also suggest that you record your consult and take notes as well. Many times it is hard to remember all the details later.
There will be questions we have not addressed here, and when those come up, write them down so you remember to talk about them with your doctor/PA. We are happy to help as much as we can, and offer as much support as we are able.
Our office requires that you fill out and return a follow-up form prior to every office or phone consult, thus letting your doctor know your concerns and questions ahead of time.
After you download the form and complete it, please email or fax it back to our office no later than 48 hours prior to your appointment. We suggest you save your completed form on your computer so you can copy and paste some of the information to the form for your next appointment.
For a Dr. Bradstreet consult Follow-Up Form Dr. Bradstreet
For a Dr. Rossignol consult Follow-Up Form Dr. Rossignol
For a Scott Smith consult Follow-Up Form Scott Smith
Phone 321.259.7111
Fax 321.259.7222
To schedule appointments jessica@icdrc.org or rosa@icdrc.org
For brief concerns or questions between consults
Patients of Dr. Bradstreet esther@icdrc.org
Patients of Dr. Rossignol rossignolnurse@icdrc.org
Patients of Scott Smith teresa@icdrc.org
To order supplements or to ask about your account michelle@icdrc.org
To ask about doing HBOT in our office chrystal@icdrc.org
To ask about purchasing or renting a hyperbaric chamber jack@icdrc.org
For letters or questions about medical records tonia@icdrc.org
For all other questions info@icdrc.org
NOTES:
________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________