***Any changes to supplementation or diet should be discussed with your doctor***
1) WHAT ARE PARENTS SEEING IN THEIR CHILDREN USING THE RESPEN-A™ DISC?
Many parents are reporting in the first month of using the Respen-A™ Disc increased concentration, better eye contact, more socialization, less irritability, decreased anxiety, and some children who were unable to speak are now trying to verbally communicate once again.
2) WHAT ARE THE SIDE EFFECTS OF THE RESPEN-A™ DISC?
Some parents have reported hyperactivity in their child with the Respen-A™ that has resolved by decreasing the dose to a ½ disc. Some parents have reported increased aggressiveness and irritability, which may be an indication that the child is not getting enough calcium or inadequate absorption of the calcium. Some parents have reported a lessening in the aggressive behavior or irritability by changing the form of calcium from calcium citrate to calcium carbonate or vice versa.
Generally the duration of wearing time of the Respen-A™ Disc is from morning until bedtime, but this can vary depending on the individual child. If you see a regression in behavior after applying the disc or wearing it for a few hours, remove the disc, as it may be that your child doesn’t need to wear it any longer that day.
other side effect noted is a loosening of the stools. If the stools are loose, it may be that our cal/mag capsules, which are in a 5 calcium to 1 magnesium ratio may be too much magnesium for the child. The best thing to do is to have the child take only 3 of our cal/mag capsules (1000 mg) and then supplement the other 1000 mg with a straight calcium carbonate supplement that has no vitamin D or magnesium added. The stools should become more formed and this irritability should subside within just a few days if it was a case of too much magnesium.
However, if the child’s stools stay loose and the irritability doesn’t subside after doing so, then it simply means that the child cannot fully absorb calcium carbonate and needs to be switched to 2000 mg of a calcium citrate that has no added vitamin D or magnesium. (This is sometimes the case if the child is on many supplements, which are creating the child to be on a more alkaline level instead of acidic level.)
3) DOES THE DOSE NEED TO BE ADJUSTED DEPENDING ON MY CHILD’S WEIGHT?
We have not found that body weight has any bearing on the dosage.
4) WHERE IS THE BEST PLACE ON THE CHILD TO ADHERE THE RESPEN-A™ DISC?
We suggest the Respen-A™ Disc be placed on the child’s torso. Many parents have placed the disc between the shoulder blades, so that the child cannot reach it to remove it..
5) WHY IS IT SO IMPORTANT THAT MY CHILD TAKE 2,000 MG OF CALCIUM DAILY WITH THE RESPEN-A™ DISC?
The active ingredient in the Respen-A™ Disc is reserpine. Reserpine has been shown to significantly decrease the storage capacity of calcium in the cells and it stimulates the excretion of calcium in urine and movement of calcium into the bones. These actions can lower the blood and intracellular calcium levels. Low calcium levels can cause symptoms of irritability, aggressiveness, numbness and tingling in the hands, feet and face, muscle spasms and stiffness.
Calcium is necessary to get the best effect from the Respen-A™ Disc. Reserpine stimulates the activity of MAO-A, a mitochondrial enzyme. The activity of MAO-A is enhanced with calcium.
Thus, to get the best effect of the Respen-A™ Disc and avoid symptoms of low calcium we recommend 2,000 mg of elemental calcium be taken daily with breakfast. We have found divided doses of calcium taken throughout the day to be less beneficial than taking all of the calcium at once with breakfast.
Research has shown that only 4-15% of calcium ingested is absorbed. Calcium requires the calcium binding protein, calbindin D9k, in the intestine for absorption. This calcium binding protein is activated in an alkaline environment in the intestines. This may explain why most patients have reported the best results with calcium carbonate, as this is an alkaline product. Calcium must be taken with food, preferably containing saturated fat for the best absorption.
Fructooligosaccharides (FOS) may be beneficial in facilitating the absorption of the calcium. FOS is a prebiotic and has been shown to increase the calcium binding proteins calbindin D9k and calbindin D28k if given in 2,000 –3,000 mg concentrations all at once. FOS is a soluble fiber that we can’t digest but it provides food for our intestinal bacterial flora. As the bacterial flora utilize the FOS, a chemical is produced by the bacteria that stimulates calcium binding protein production. These calcium binding proteins assist in the absorption of calcium and minerals from the intestines and the calcium binding protein, calbindin D28k protects our cells from too much calcium influx into the cells that can cause inflammation.
Please be sure to look closely at the label on your calcium supplement. You need to take into consideration the serving size listed (how many capsules per serving) and how much “elemental calcium” is in each serving size and adjust appropriately to reach the full 2,000mg of calcium.
6) DOES IT MATTER IF I PUT THE RESPEN-A™ DISC ON BEFORE MY CHILD TAKES THE CALCIUM SUPPLEMENT?
Most parents have reported the best results giving the calcium supplement before putting on the Respen-A™ Disc. If your child is displaying symptoms of aggression, irritability, or a worsening of his core symptoms shortly after applying the Respen-A™ Disc, then he or she may need to have the calcium supplement at least one hour prior to applying the Respen-A™ Disc.
7) IF THE DOSE OF RESPEN-A™ IS REDUCED TO A HALF DISC SHOULD THE CALCIUM BE DECREASED?
The calcium requirements are the same whether a full disc or a half disc is used.
8) WHAT IS THE BEST FORM OF CALCIUM TO TAKE WITH RESPEN-A™?
There are several types of calcium products-- Calcium Citrate and Calcium Carbonate are the most common. We have found that most people absorb the calcium carbonate better than the calcium citrate. Again perhaps because calcium must be bound to the calcium binding protein in the intestines to be absorbed and calcium binding proteins are activated in an alkaline environment. Therefore, we suggest you try calcium carbonate with your child, and if you see any increase in irritability or aggressiveness, then change to the calcium citrate or calcium lactate, as they may not be absorbing the calcium carbonate effectively. The pharmacy includes a month of calcium carbonate free of charge with your first prescription of the Respen-A™ Disc to get your child started on the calcium, as this is so important. After the first month, you can then continue to buy your calcium from the pharmacy with each Respen-A™ Disc prescription refill or you can purchase calcium from a supplier of your choice. We suggest however if you buy calcium from another supplier, that you buy it WITHOUT vitamin D added.
9) WHY DO YOU NOT WANT VITAMIN D INCLUDED WITH THE CALCIUM?
We found, in talking with parents of children using the Respen-A™ Disc that high doses of Vitamin D may decrease the effectiveness of the Respen-A™ Disc. Therefore, we suggest the child take no more than 400 IU’s of Vitamin D a day, the amount that is in most multi-vitamins.
10) WHY DO YOU SUGGEST THAT CHILDREN USING THE RESPEN-A™ DISC NOT BE ON THE ESSENTIAL FATTY ACIDS IN THE OIL FORM?
We found that the oils such as fish oil, flaxseed oil, primrose oil, codliver oil, etc will negate the effects of the Respen-A™ Disc. The oils are made up of double bonds, and once the body breaks down these double bonds, it creates lipid peroxides. Lipid peroxidation will decrease monoamine oxidase-A (MAO-A) and we are trying to increase MAO-A activity. Therefore, we suggest that the child not use the oils and instead eat a serving of fish weekly.
If the child has been on these oils for several months or more, it may take up to three weeks for the effects of these oils to be cleared.
Also Tumeric (also called Curcumin) supplements will negate the Respen-A™ Disc. Tumeric inhibits MAO-A.
Also Papain and Licorice Root (Anise) that is often in some digestive enzyme supplements will inhibit MAO-A so it should not be taken with the Respen-A™ Disc.
11) WHY DO YOU SUGGEST NOT TO TAKE DOSES OF 30 mg OR HIGHER OF VITAMIN B6 IN THE FORM OF PYRIDOXINE HYDROCHLORIDE? BUT PYRIDOXAL 5-PHOSPHATE IS OKAY?
After gathering data from patients using the Respen-A™ Disc, we have found that some patients taking vitamin B6 in the form of pyridoxine hydrochloride in doses of 50 mg or greater have seen a loss of some of their improvements from the Respen-A™ Disc such as decreased speech and attentiveness. Upon stopping the pyridoxine hydrochloride supplementation, the improvements seen with the Respen-A™ Disc were regained. Pyridoxine hydrochloride is the common form of vitamin B6 in most multivitamin supplements, but the dosage is usually less than 50 mg and this has not been reported as causing a problem. The more active form of vitamin B6, pyridoxal 5-phosphate (P-5-P) has not been shown to interfere with the Respen-A™ Disc.
12) WHY DO YOU SUGGEST NOT TAKING SUPPLEMENTS OF L-GLUTAMINE or GABA?
Glutamine and alanine are the most abundant amino acids generally in the body. Glutamine and alanine are associated with the MAO-B pathway. MAO-B is the counterbalance to MAO-A, and can decrease the activity of MAO-A. Glutamine and GABA may possibly increase MAO-B activity therefore decreasing MAO-A activity, which counteracts the Respen-A™ trying to boost MAO-A.
13) DOES THE RESPEN-A™ DISC REQUIRE A SPECIFIC DIET?
A vegetarian diet is not recommended when using the Respen-A™ Disc. It is necessary to eat a serving of meat every day when using the Respen-A™ Disc as meat is the primary source of tryptophan in the diet which is needed to produce serotonin. If a person doesn’t get enough tryptophan in their diet, they can become depressed when using Respen-A™. If the child cannot handle meat in their diet, we suggest they take 5-HTP. 5-HTP is the supplement of choice, however, 100-150 mg will need to be given 3-4 times a day as it doesn’t store in the body. If this is not feasible for your child, you can supplement with L-Tryptophan 500 mg daily, one time a day, as it does store in the body.
Some children on the gluten free diet have seen a return of symptoms after seeing good improvement on the Respen-A™ Disc and some children have seen no results or even a worsening of their symptoms when starting the Respen-A™ Disc. One parent noticed that if her child had a small amount of gluten, the symptoms resolved. A few more parents have reported the same findings with incorporating some gluten back in their children’s diet. Researching the scientific rationale for this, it was discovered that L-Tryptophan, 5-HTP, increase the production of serotonin. This newly synthesized serotonin is put into storage vesicles in the cells. The Respen-A™ Disc turns over the serotonin in the synapse (the junction between nerves). The serotonin needs to be released from these storage vesicles into the synapse so that the Respen-A™ Disc can stimulate the conversion of the serotonin into the active aldehyde. Research shows that gluten will stimulate the release of serotonin from the storage vesicles.
If your child is on a gluten free diet inositol supplementation may be necessary. In most cases, 500 mg to 700 mg a day of inositol has been adequate in the release of serotonin to keep up with the turnover stimulated by Respen-A™ Disc. Inositol is available in a powder or capsule from various manufactures. It virtually is tasteless and dissolves well in water. Early reports show that a once a day dosing has been adequate, but depending on the child, you may find that dividing the dose up into three servings a day may be beneficial. The inositol has a long acting effect in stimulating the release of serotonin and norepinephrine so if your child will not be wearing the disc for several continuous hours one day (i.e. one day at the beach and in and out of the water several times in which the disc gets removed and replaced several times throughout the day) then it is recommended to not supplement with inositol that day but rather use small amounts of gluten instead that day.
If you have not previously been on the Respen-A™, it is then recommended to start the Inositol 500mg/day after about 5-7 days of being on the Respen-A™ OR starting the Inositol prior to this 5-7 day period ONLY IF the child exhibits an increase in autism symptoms. (The reason for this is that we need to decrease the serotonin with the Respen-A™ BEFORE giving Inositol, otherwise the child’s serotonin will actually become too high and symptoms of autism will arise). The inositol should be given at least 15 minutes after applying the Respen-A™ Disc, not before applying the Respen-A™ Disc and the Respen-A™ Disc should be worn for 2-3 hours after taking inositol.
14) WHAT IF MY CHILD’S SYMPTOMS RETURN ON THE RESPEN-A™ DISC?
Some children on the gluten free diet have seen a return of symptoms after seeing good improvement on the Respen-A™ Disc and some children have seen no results or even a worsening of their symptoms when starting the Respen-A™ Disc. We thought that this may be due to a depletion of their serotonin by the Respen-A™, so we recommended that they take 5-HTP or L-Tryptophan to replenish the serotonin. Several of the parents reported that this made no difference, but one parent noticed that if her child had a small amount of gluten, the symptoms resolved. A few more parents have reported the same findings with incorporating some gluten back in their children’s diet. Researching the scientific rationale for this, it was discovered that L-Tryptophan, 5-HTP, increase the production of serotonin. This newly synthesized serotonin is put into storage vesicles in the cells. The Respen-A™ Disc stimulates the turnover of the serotonin in the synapse (the junction between nerves). The serotonin needs to be released from these storage vesicles into the synapse so that the Respen-A™ Disc can stimulate its conversion into the active aldehyde. Research shows that gluten will stimulate the release of serotonin from the storage vesicles.
If you see some return of symptoms on the Respen-A™ and your child is already using inositol then it may be that your child needs inositol more than once a day or it may be that your child isn’t converting well the L-tryptophan in the meat into 5-HTP that is then converted into serotonin. How to determine if it is a case of needing more inositol; if your child does well in the morning after taking inositol but is exhibiting more symptoms in the afternoon, then try giving your child a second dose of inositol in the afternoon. Be sure to keep the Respen-A™ disc on for 2-3 hours after giving the second dose of inositol. If this increase in the inositol doesn’t resolve the symptoms then it may be that your child isn’t easily converting L-tryptophan from the meat he/she is eating into 5-HTP; try supplementing 5-HTP 100 mg 3-4 times a day and see if this improves the symptoms.
Ultimately we are trying to achieve a balance in the amount of serotonin produced from the L-tryptophan/5-HTP that is then released from the cells storage into the nerve junctions by the inositol. The serotonin that is released into the nerve junctions is then converted by MAO-A into the active aldehyde and it is the Respen-A™ that is stimulating the MAO-A activity. Think of it as an equation: A + B + C = D, where A equals the amount of L-tryptophan/5-HTP to make the serotonin; B equals the amount of inositol to release the serotonin into the nerve junctions; C equals the amount of Respen-A™ needed to activate the MAO-A to turn over the serotonin into the active aldehyde which is D. It takes a little bit of trial and error to get the equation balanced for each child.
15) WHAT IF MY CHILD’S IMPROVEMENTS ON RESPEN-A™ HAVE REACHED A PLATEAU?
If you feel that your child’s improvements have reached a plateau or that there seems to be some hurdle they just can’t get over, it may be a co-existing condition called pyroluria. Pyroluria is common in autism, ADD, ADHD and depression. Pyroluria is the result of a buildup of the waste products called kryptopyroles from the production of hemoglobin. The symptoms of pyroluria are very similar to many of the symptoms associated with autism. The treatment for pyroluria is supplementation of zinc, vitamin B6 in the form of pyridoxal 5-phosphate (P5P) and eating foods high in arachidonic acid which are eggs, butter, red meat and liver. If your child won’t eat these foods, you can buy a supplement of arachidonic acid from Molecular Nutrition called X Factor. It is available in 250 mg soft gel caps at www.mnbody.com. A website to learn more about pyroluria is www.primalbody-primalmind.com/?p=398.
16) HOW LONG IS THE SHELF LIFE OF THE RESPEN-A™ DISC?
Each Respen-A™ Disc has a shelf life of 180 days in its original package. Therefore, we can ship 3 month’s supply of the Respen-A™ Discs at a time to decrease the cost of shipping if you desire.
Once the Respen-A™ Disc has been activated on the skin, it is active for 20-24 hours. This is why we suggest you put a disc on the child in the morning and then remove it when they go to bed at night. If your child wants to go swimming or take a bath, just remove the disc, place it in a ziplock baggy and then after the child has been dried off, re-adhere that same disc with a new adhesive bandage.
17) DOES INSURANCE COVER THE COST OF THE RESPEN-A™ DISC?
Many insurance companies have begun to cover the Respen-A™ Disc. We will include a Universal Claim Form filled out by the pharmacist with your prescriptions. You will need to fill out any additional information, sign it and send it into your claims department of your insurance.
18) HOW CAN I RECEIVE ADDITIONAL INFORMATION ON THE RESPEN-A™ DISC?
Elaine DeLack, RN, the developer of the Respen-A™ Disc, is doing monthly webinars for patients and doctors regarding Respen-A™. She will be covering her research regarding Respen-A™ along with new information we learn as time goes on. If you are interested in participating in these webinars, you can contact us at 360-652-2816 or toll free at 1-877-963-3338 or email us at firstname.lastname@example.org and we will email you an invitation.
If you have any troubleshooting questions about Respen-A™, or any testimonials you want to share of results using the Respen-A™ Disc, please call us at the same number 360-652-2816 or toll free at 1-877-963-3338 as we would love to speak with you.
We also recently have a Facebook page relating to Respen-A™. The blog discusses many topics, not only regarding Respen-A™, but other Autism treatments and how they react with the Respen-A™ Disc. You can visit both of these sites by visiting our website at www.respen-a.com and clicking on the link buttons to these at the bottom of our webpage.