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This is Day 19 in the series: 31 days on Living with ADHD, Autism and Sensory Processing Disorder: What We Have Tried, What Has Worked, What Hasn’t Worked, and Never Giving Up. Click here to see all the posts in this series.
Over the years we have had a number of natural supplements recommended to us by doctors for Mr Rockstar. We have yet to see a naturopath so I do not know what suggestions they might have. I also have gotten plenty of recommendations from friends. All of this can be overwhelming. I actually shy away from telling people about Mr Rockstar’s issues because EVERYBODY has some supplement they want to sell you! I am sure they are good products but it just gets to be overwhelming. There is only so much time and money to try new things it is really hard to sort out. For this post I am just going to discuss the supplements recommended by Mr Rockstar’s doctors. Besides these five supplements, Mr Rockstar also takes prescription medications and we use essential oils. Both of which I will cover in a future post.
BOTH the developmental pediatrician and Mr Rockstar’s psychiatrist checked his ferritin levels. There are multiple ways to check for iron but they both agreed ferritin was much more reliable. The downside is it requires a blood draw which is a pain to get if your child is young. The developmental pediatrician had data showing many of the sleep and behavioral issues children have stem from iron deficiency. He felt strongly that all children need to be on a multivitamin that included iron. FYI there is NO IRON IN GUMMY VITAMINS. So disappointing lol. The only vitamins I have found with iron are Flintstones chewables (also loaded with artificial dyes….Why Oh Why?!?) and Nature’s Plus Animal Parade (which has spinach and we just found out Mr Rockstar is allergic to spinach). Anytime we switch vitamins the kids refuse to eat them. But if I keep putting them out each evening they eventually all start liking the new brand. If anyone knows of another multi vitamin with iron I would LOVE to hear!
One other iron supplement I have tried is Pur-absorb Iron during our elimination diet. Miss Princess was so picky I was worried about her iron intake. The Pur-absorb Iron comes as little pouches of clear liquid that already has the iron dissolved in the liquid. You add the packet or iron liquid to a small cup of juice. None of the kids seemed to notice the taste and this pre-dissolved is supposed to be easier on the stomach and have better absorption.
When Mr Rockstar was first tested at 3.5 his ferritin was quite low (even though he HAD been on a multivitamin with iron for 6 months). The developmental pediatrician prescribed a liquid iron supplement. It tasted pretty awful but Mr Rockstar was able to get it down. He took this for about a year and we did see improvements in his sleep from it. Recently Mr Rockstar’s psychiatrist retested him and his ferritin level was fine.
If your child’s iron is low and they start taking a supplement it might take a few months to get their iron levels high enough to see a benefit. This is a long term solution not something that will help immediately. We continue to give Mr Rockstar a multi vitamin with iron and periodically get his iron checked.
Omega 3 Fatty Acids
Another supplement suggested by BOTH the developmental pediatrician and the psychiatrist was Omega 3 fatty acids. They both said you are looking for high doses of EPA and DHA. Ideally you want to find a supplement with more EPA than DHA since we tend to be lacking EPA in our diets more than DHA. Eating fish and/or taking fish oil is pretty much the only way to get the recommended dose.
Flaxseed oil is a plant based omega 3 called ALA. “The main problem with ALA is that to have the good effects attributed to omega-3s, it must be converted into EPA and DHA. As a result, only a small fraction of it has omega-3’s effects . ” You would have to take 6 times the amount of flaxseed oil as fish oil to get the same benefit according to www.health.harvard.edu
According to Autism Speaks “Several very small studies have suggested that omega-3 fatty acid supplements may reduce autism-related symptoms such as repetitive behavior and hyperactivity, as well as improve socialization.”
A small Japanese study that gave very high doses of EPA/DHA to children with ADHD found “At the end of the eight-week study, supplementation resulted in significant increases in EPA and DHA, as well as a significant reduction in the AA:EPA ratio (20.78 ± 5.26 to 5.95 ± 7.35, p < 0.01). A psychiatrist (blind to supplement compliance or dosage modifications) reported significant improvements in behavior (inattention, hyperactivity, oppositional/defiant behavior, and conduct disorder). There was also a significant correlation between the reduction in the AA:EPA ratio and global severity of illness scores.”
So what is the recommended dose of EPA/DHA?
Currently there is no established daily value by the US Food and Drug Administration. “Dr. Sears, in “The NDD Book,” recommends different dosages for different ages. For infants, the recommended dose is at least 300 mg per day. For children ages 2 to 3, at least 400 mg per day is recommended. For children over 4, the recommended dose is at least 600 mg per day. Three ounces of salmon twice a week for children under 4 and 6 ounces of salmon twice a week for children over 4 provides approximately the amount of omega-3 a child needs over a four- to six-day period. Some health care providers recommend a higher therapeutic dose of up to 1,000 mg a day for children with autism, ADD, ADHD or learning disabilities.” www.livestrong.com
The developmental pediatrician simply advised us that we should give Mr Rockstar a fish oil supplement and to be careful that it is a source not contaminated with heavy metals. So for years we were giving the kids one or two Lil’ Critters Omega-3 DHA gummy vitamins a day. When we started seeing the psychiatrist he just laughed at how LITTLE omega 3’s are actually in these gummies. There is only 32mg of DHA in these gummies if you take two! and yet they recommend 400-600 mg a day for regular kids and 1000-1200mg a day was the recommendation from Mr Rockstar’s psychiatrist based on recent studies. These vitamins are just a joke. It is shameful that they even advertise them as a DHA supplement.
We eat fish maybe once a week but not enough to get the kids their needed daily fish oil. I started looking for good supplements and it is HARD to find ANYTHING close to the recommended daily dose of fish oil (either kids or adults). The best I found for kids was Nordic Naturals – Ultimate Omega Junior. They say they are chewable….but really the kids “chew” them, the oil pops into their mouths and then they are left with a hard gel capsule in their mouth that they spit out. All the kids agree the fish oil tastes pretty nasty once they “chew” these vitamins. The girls have gotten used to the taste and Mr Rockstar can swallow these capsules. Two chewables have 640mg of fish oil a day plus they have more EPA than DHA which is great. For a regular kid taking two of these a day fulfills their daily need. Mr Rocktsar has to take 4 to get his recommended daily dose.
One other solution I have found is liquid fish oil. I found vitacost.com has a liquid fish oil supplement that comes in orange or lemon flavor. Plus vitacost.com has frequent sales 😉 One tsp of this liquid supplement has 786 mg of EPA and 524 mg of DHA = 1310mg omega 3s. So 1 tsp a day is plenty for Mr Rockstar .
But how do you get your kids to take 1 tsp of liquid fish oil a day? Trying to drink it is gross. The flavor isn’t the worst it is the texture(?) of the oil that makes them gag. I have learned if your fish oil smells “fishy” it means it has become oxidized. “Products with the least amount of fishy taste and smell have undergone the least amount of oxidation and closely resemble fish oil in its most pure and fresh state.” www.ascenthealth.com So your liquid fish oil should not have a strong rancid fishy smell plus you should refrigerate it once open to slow down oxidation. My solution to getting my kids to eat their fish oil is to make fish oil brownies. Yes you read that right. Fish oil brownies….or chocolate chip cookies work just fine too.
Use any brownie recipe you want (here is a nice one from www.100daysofrealfood.com) and replace all of the oil or butter with fish oil. Most recipes call for 1/2 cup oil for a 9×13 tray of brownies. 1/2 cup oil = 24 tsps so if you cut up the brownies into 24 pieces each piece will have approx 1 tsp of fish oil in it. Alternatively you could cook the brownies with 1/4 cup fish oil and 1/4 cup regular oil in which case if you divide the tray of brownies into 12 pieces, each piece would have 1 tsp fish oil. You get the idea. You can easily do the same thing for cookies. First you know how much oil goes into the cookies, second convert this to total teaspoons, lastly divide the total number of cookies you made by the total teaspoons of oil to discover how many cookies it takes to get a tsp of fish oil.
As you can see from the pictures my kids love the fish oil brownies. Mr Rockstar snuck a bite while I was getting my camera ready. Personally I am so used to regular brownies the fish oil ones are kinda a turn off to me….but that means there is no temptation sneak some of the kids brownies! So I’ll take that as a positive. Hubby likes the brownies so of our family of 5 everyone but me likes them.
But does Frying, Baking or Canning affect the Omega 3?
Omega3innovations.com says “One study from India examined the omega-3 content in fried tuna. Researchers found that a shocking 70 to 85 percent of the EPA and DHA omega-3s were destroyed in the frying process. Study investigators also explored several other ways of preparing the tuna. The verdict:
Canning destroyed virtually all the omega-3 content in the tuna.
- Cooking the tuna, as opposed to canning or frying or microwaving, preserved the greatest amount of EPA and DHA fatty acids.”
“Another recent study from Greece also compared different ways of preparing fish – this time working with anchovies and sardines and an oven. The researchers found that when they baked sardines rich in EPA and DHA for 20 minutes at200°C (about 400°F), the fish retained its rich EPA and DHA content. However, when they fried the fish, researchers noted that the fatty acid profile changed completely. It no longer resembled the fatty acid structure of the original fish!”
“baking or boiling the fish best preserved the omega-3. Combining the fish with olive oil also seemed to add extra protection to the omega-3 fats.”
So it appears we all should be eating baked or boiled fish. All the data I could find indicates that you still get the nutritional benefit of the omega 3’s even if you bake with it.
For now I am making fish oil cookies or brownies and the kids get their one brownie a day at snack time. Mr Rockstar’s psychiatrist said it takes a MONTH or two to see improvement from increasing fish oil intake. Mr Rockstar has been taking the higher fish oil supplement for 3 months now. He has had so many med adjustments in that time I really couldn’t tell you how beneficial it is. But since all the data shows kids need much more fish oil than they typically get we are continuing with the supplement.
I had never heard of N-Acetylcysteine (NAC) before Mr Rockstar’s psychiatrist mentioned it. NAC comes from the amino acid L-cysteine. Amino acids are the building blocks of proteins. “NAC has been used in conventional medicine for more than 30 years, primarily as a mucolytic (mucous-thinner) inhaled to manage conditions such as cystic fibrosis, in which mucous is abnormally thick and tenacious. ” www.lef.org
http://evolutionarypsychiatry.blogspot.com has a great article to explain how NAC helps bring balance to the brain as well as being a strong redox balancer (think antioxidant). The author has a very in-depth explanation of how NAC works and why doctors think it might be helpful for autism. Here is an excerpt…if it is confusing as an excerpt please read her article since reading the whole thing it made sense to me!
“if autism spectrum disorders (and other neurologic and psychiatric disorders) are a result of an excitatory:inhibitory imbalance, with overabundant excitation, NAC will bring the players more into balance. At the same time, if autism spectrum disorders (and other neurologic and psychiatric disorders) are a result of redox imbalance, with reactive oxygen species terrorizing the delicate neurons, NAC will help the body make plenty of glutathione to help clean up those bad boys. There’s no single cause of austim, but NAC might be a way to kill several birds with one stone, as it were. AND, in the brain the two pathways (excitatory:inhibitory and redox) come together, as glutathione can displace glutamate at its receptor.”
She also reports a recent study with kids with autism and NAC:
“Symptoms of irritability in autism were much improved in 5 kids, minimally improved in 6 kids, no change in 2, and one child got worse (though after the trial and on no NAC the subject had the same symptoms which were eventually found to be due to constipation). In the placebo group, two were much improved, five were minimally improved, five had no change, one was minimally worse, and one was much worse. In the placebo group, two were much improved, five were minimally improved, five had no change, one was minimally worse, and one was much worse. Positive trials for NAC have also been reported for certain symptoms of schizophrenia, bipolar depression, cocaine craving, smoking cessation, trichotillomania, and gambling.”
Mr Rockstar’s psychiatrist said since NAC is a safe amino acid to take with virtually no side effects and there is all sorts of data coming out that it helps with autism irritability as well as other neurological disorders, he thought it would be a good thing to try. He suggested 600mg in the morning and 600mg in the evening. Like the other supplements it takes a while to see the effect of taking NAC. For example, the autism study cited above lasted 12 weeks. Just like with the fish oil, Mr Rockstar has had so many med adjustments over the past few months I am not sure how effective the NAC has been in reducing aggression and anxiety in him but there doesn’t seem to be much downside to continuing to take it.
Autism Speaks cited a study that found “in all cases, a nightly regimen of melatonin (1 – 6 mg) helped with sleep onset within a week’s time. The benefits generally lasted for the length of the study, with no significant side effects. Parents also reported improvements in their children’s daytime behavior and reductions in their own stress levels.”
“More than a trivial matter, disordered sleep can worsen autism symptoms such as repetitive behaviors and social difficulties. In addition, parents and other caregivers report that autism-associated insomnia can take a toll on the entire household. ”
“However, Malow and other experts caution that families and individuals dealing with autism-associated insomnia should consult a physician rather than try melatonin on their own. “There are lots of causes for sleep disturbances,” she explains. “It is vitally important to first identify and treat any underlying medical condition.”
Melatonin has been considered safe to use by all our doctors. I agree it shouldn’t be a first step but at some point the toll (on both the child and the caretakers) of disordered sleep is too high a price too pay. Compared to other sleep aids melatonin seems like one of the best options to try. Here is my list of things to try first before trying Melatonin. Melatonin only seems to work when it is taken sometime at or after dinner time. If taken too early or too late it does nothing. Most studies suggests 1-6mg at dinner for children is best for re-establishing a good sleep rhythm. The few times I have tried giving it to Mr Rockstar when he has woken up in the middle of the night it has done nothing. If I give him 6 mg (sometimes as high as 9mg depending on how the last few nights have been) at dinner time or right before bed it definitely helps him fall asleep. I usually give him 3 mg in immediate release and 3 mg in time-released form. Since Mr Rockstar’s meds recently changed he is no longer taking melatonin at this time.
Valerian root extract is an herb that is sold as a supplement either as a tea or capsule you can swallow. It has a very strong smell/taste that takes some getting used to. Mr Rockstar’s psychiatrist suggested it to help him fall asleep and stay asleep. He didn’t recommend a dosage. The bottle I bought said 1-5 capsules (450mg) at bedtime. I started Mr Rockstar at 1 capsule and that didn’t seem to do much so I moved him up to 2 capsules and that did seem to help. I tried taking two myself and it did make me feel drowsy.
A study published in the American Journal of Medicine reviewed and analyzed data from 16 different studies on the use of Valerian root for insomnia in adults. The authors concluded “The available evidence suggests that valerian might improve sleep quality without producing side effects. Future studies should assess a range of doses of standardized preparations of valerian and include standard measures of sleep quality and safety.” though “there was evidence of publication bias in this summary measure.”
Another study published in the Sleep Medicine Review Journal was also a meta-analysis of research studies done so far but their conclusion was that Valerian root was safe but ineffective at treating adult insomnia. “Most studies found no significant differences between valerian and placebo either in healthy individuals or in persons with general sleep disturbance or insomnia. None of the most recent studies, which were also the most methodologically rigorous, found significant effects of valerian on sleep. Overall, the evidence, while supporting that valerian is a safe herb associated with only rare adverse events, does not support the clinical efficacy of valerian as a sleep aid for insomnia.”
I could find no data on safety of Valerian root and children. The European Scientific Cooperative on Phytotherapy suggests children under the age of 3 shouldn’t use Valerian Root because there have been no studies to show its safety or lack there of with young children. This summer Mr Rockstar had severe insomnia. Besides helping him maintain good sleep hygiene (consistent bedtime, soothing routine no caffeine, no electronic media in evenings, etc), we gave Mr Rockstar up to 900mg of valerian root a night along with melatonin (be careful. A number of melatonin supplements include valerian as well. Just make sure you aren’t double dosing) for a number of months. Both helped him fall asleep and had some success in keeping him asleep but even using both supplements he had ongoing sleep issues. Eventually we switched his medications and he no longer needs the melatonin or valerian root.
There is reasonably good data to support:
- Iron deficiency can cause sleep disturbances and other issues so it is good to get your child’s ferritin level tested and supplement if need be. In our experience this supplement may only need to last for a year or two before the child outgrows the need.
- Most children aren’t getting enough Omega -3 fatty acids. Autistic/ADHD/SPD/Developmentally delayed kids especially benefit from Omega-3s and probably should be taking a higher dose than the average kid. We use liquid fish oil baked in brownies or cookies for our kids
- N-Acetylcysteine shows promise for reducing aggression associated with autism as well as anxiety, depression and a number of other things. It is an amino acid, is safe and has real side effects.
- Melatonin can greatly reduce the sleep disturbances for children with autism/ADHD/SPD. While there are no long term studies of use for kids, there are lots of studies showing in the short term melatonin use is effective and has no real side effects.
- Valerian Root appears to also help with sleep. It is not clear if it is any safer than melatonin or if it is as effective.
If any of these sound like they might be helpful, talk to you doctor to see if they think it would be appropriate. I know I complained earlier about how overwhelming suggestions from people can be but today I am asking for just that….What supplements have your tried/or heard to be useful for Autism, ADHD, SPD, or behavioral issues? It might take us a while to try them but I will add them to my list 😉 My Rockstar is only 6 so we have quite a few more years to test different supplements.