Grace for Rett » Grace's Life with Rett Syndrome

Fish Oil & Rett Syndrome – Everything I know

I know that this post is super long. I took months writing it. But please read it carefully, especially if you intend to join in discussion after reading. And please, if you have cause to believe anything I have said is flawed (and have references to show me) I really want to know. Please make these suggestions via elizabethgrace31@gmail.com and I will post additions if needed.

Today is one’a those posts I’ve been gearing up for for a while. It’s a monster of a topic and controversial to some, but there needs to be some plain English stuff out there for parents who are new to the concept of giving their Rett girls fish oils. So here goes.

This is my experience and my research. I’m in no way a professional researcher and all my information regarding max doses came from what I believe to be reputable sources on the internet. I hope it will be helpful, but please don’t ever start yourself or your child on a medication or supplement that you haven’t researched yourself. You need to be secure that you did due diligence before embarking on any form of alternative medicine or therapies.

{The Study}

Fish oil as a supplement for Rett Syndrome first gained attention in March of 2012 when Santa Maria alle General Hospital in Italy published their findings in the journal Genes & Nutrition {click here for that paper}The study took place over the course of two years. In it, they gave 10 girls high doses of fish oil and 10 were a control group who were watched, however did not receive any oils. After 6 months, the girls were tested and it was reported that those who had omega-3 oils had improvements in:

  • Growth (body) <— naturally, anyone would grow in the course of 6 months and it’s not clear if this means more growth than the control group experienced
  • Motor skills/independent sitting
  • Walking ability
  • Purposeful hand use
  • Non-verbal communication
  • Breathing irregularities

No improvements were reported in:

  • Age of onset of regression
  • Head growth
  • Scoliosis
  • Autonomic systems
  • Onset of stereotypies (e.g. hand movements)
  • Epilepsy/seizure activity
Perhaps the most exciting portion of the paper published in Genes & Nutrition was the statement that, “For the first time, these findings strongly suggest that a dietary intervention in this genetic disease at an early stage of its natural history can lead to a partial clinical and biochemical rescue.”
Now, I like to play devil’s advocate. I think it’s important. So in the interest of being fair and balanced, I’ll say this: the results quoted from this study are exciting. The results I’ve seen in my own daugher have been exciting. But it’s important to note that a clinical trial with only 10 in the experimental group and 10 in the control group isn’t particularly impressive. Interesting, but not impressive.

{The Oil}

The particular oil which was chosen for the test was a Norwegian oil known for its purity and lack of metals like mercury. This particular oil is said to be well documented and is registered with the Italian Health Ministry {like the FDA in America}. You can view the Europe ordering area for this oil here.

Quite an exciting development for us in the UK is finding that Boots carries an oil by the name of Vitabiotics Ultra Omega-3 Fish Oil. This appears to be the same oil as can be procured from Norway. We  buy ours online when Boots has their 3-for-2 offers.

Now, what’s so special about Omega-3? Omega 3 fatty acids can be found in marine and plant oils. They are polyunsaturated fatty acids which are already known to reduce depression, hypertention and ADHD and lower the risk of heart attacks. They are ‘essential fatty acids’ which means that they’re vital for our health, however not synthesized by our own bodies, which means they must come through the foods we eat.

Omega-3 is an antioxidant. We hear the word ‘antioxidant’ a lot but you may not actually know what that means. Antioxidants are substances that gobble up free radicals. Vacuums. They suck up garbage in the body. Think of silver cutlery. When it oxidizes, it turns grey and yucky and needs to be cleaned. This is the effect of oxygen on the silver, however oxygen isn’t the only example of an oxidizing agent. In the same way, using skincare with antioxidant properties is good because free radicals {pollution} that hit our skin can be ageing, dull the skin, etc. Antioxidants gobble up that garbage. So think of these fish oils like that.

We know from the results of Jonathan Kipnis’ research into bone marrow that introducing new microglia into the brain through the bone marrow hypothetically ameliorates the symptoms of Rett. This has been proven in mice, but not yet tested on humans. Don’t glaze over – stay with me, here. Microglia are also little garbage vacuums. They are essential in the brain to suck up all the debris created in our brain. Our brain cells are always dying – our brains are full of debris. It’s the microglia that goes around attacking this debris so it doesn’t hinder our brain function. However, this is one of the reasons Rett Syndrome does what it does…our girls have less of it than healthy people. So there’s all this debris in the brain standing in the way of normal synapses which would send the messages that turn a thought {reach for my sippy cup} into an action {reaching for sippy cup}. That’s the most simplistic way I can possibly describe Rett Syndrome.

{Where to get them}

  • Original oil – This is the oil used in the study from Norway
  • UK – This is a comparable product available in the UK
  • USA – Upon looking careffully at the ingredients, this is a comparable product in the USA and this is a discount dealer for that same product. VERY IMPORTANT: there are other oils by this maker (Nordic Naturals) in the children’s category that are definitely not suitable for these uses. For example, one contains vitamin A which is a no-no for overdose and the other contains GLA which is a form of omega-6 and unsuitable for anyone prone to seizures.

{How Much}

In the original study, “high doses” of oil were used which were 1ml per 1kg of weight. It’s popular practice amongst Rett parents utilising fish oils to give their daughters 10ml of the oil which is double the adult dose. Grace is 16kg in weight so 10ml would be less than what she would have had in the original study.

Although the bottle says not to exceed the recommended dose, with my own research I felt comfortable with 10ml of the Vitabiotics Ultra Omega-3. This, however, has changed to 5ml after speaking with Grace’s doctors and searching my own mummy instincts to tell me what to do. According to this entry on Wikipedia, the possible risks of overdosing on Omega-3 are:

  • Increased incidence of bleeding
  • Hemorrhagic stroke
  • Oxidation of omega-3 fatty acids, forming biologically active oxidation products
  • Increased levels of low-density lipoproteins (LDL) cholesterol or apoproteins associated with LDL cholesterol among diabetics and hyperlipidemics
  • Reduced glycemic control among diabetics

These become a risk when more than 3 grams of EPA and DHA {the acids which make up omega-3} are taken in a day. 10ml of this oil contains 1.7 grams of EPA and DHA, half of the recommended maximum. However, I assume that these are maximum doses for adults. In theory, if the maximum dose for a child is half that of an adult, then at 10ml of oils per day, a child would be overdosed at the rate of 0.2 grams per day. The oil also includes vitamins E and D. The max dose of vitamin D for children ages 4-8 is 3,000 IU. 10ml of this oil contains 1,000 IU. Overdoses in vitamin D from fish oil cause constipation, confusion, nausea and abnormal heart rythm. Now, vitamin E. It’s not possible to overdose on vitamin E in food sources, however it is possible to overdose on E supplements. Since these are natural fish oils, I’m unsure of whether they fall into the supplement or food sources category. 10ml of this oil is 12mg of vitamin E. From my own research, this isn’t anything near the overdose limit which varies depending on where I’m reading.

So, in short, I’m no doctor and certainly not a scientist, but after talking to Grace’s consultant, I feel comfortable giving her 5ml of this fish oil.

{Contraindications}

It’s important to know that there are contraindications of this fish oil. Which means that there are drugs or certain health issues it shouldn’t be taken with. I urge you to read this article on the LiveStrong website for some of the dangers of too much fish oil and the contraindications such as ibuprofin, asprin {which children shouldn’t be taking anyway}, etc.

Please please PLEASE do not be dosing your girls up on cheap fish oils. The ones mentioned in this post are known for their purity while others may contain mercury or other dangerous metals when given at high doses.

ALWAYS list omega-3 fish oils in lists of medications when asked by your child’s doctor. You should do this with any supplement. Omega-3 thins the blood and so your child going into surgery on high doses could kill them. I’m not being dramatic for the sake of it – you must know this before going on omega-3 for yourself or your child. You will need to stop them for a certain period of time prior to surgery and this should be discussed with your child’s doctor(s).

Signs that fish oils are over-thinning the blood are: nosebleeds, blood in the urine, bleeding gums and skin bruising.

{How to administer}

I feel so lucky that Grace has a PEG tube. We administer her oils through the PEG and this prevents the whole battle over actually getting the stuff in her. However, certain oils can degrade certain plastics and so I don’t know if this can be harmful to the tube in the long term. Because she has a PEG, she will need this surgically replaced every 18 months to 2 years anyway, so time will tell. When we administer through the tube, we follow it up with a 60ml flush of water.

Omega-3 is best absorbed into the body when taken with fats. With fats, more of the omega-3 absorbs into the body and it stays circulating for longer. This is why omega-3 in the form of fish oils is such a wonderful way to get it into your system. According to a nutrition student I recently asked about this, she said they don’t need to be taken with fats because the oil is the fat and the delivery system. However, there are things you can take it with which inhibit absorption. Some parents report giving the oils to their girls in orange juice, however if liquid to wash it down is necessary, it appears that it would be better absorbed into the body if taken with full fat milk. This article I found says that taking the oils with fruit juices or skim milk “is wasting a lot of the omega-3”.

Omega-3 is unsuitable for cooking. Cooking with these oils damages them and there will be no benefit. The structure of omega-3 is very sensisitve to temperature and shouldn’t be mixed with or poured onto any hot food.

It’s not advisable to take capsule forms of fish oil. Your body may not even break down the capsules fully. Administer the liquid form to be sure of the dosage being absorbed into the body.

Here’s how some friends give their girls the oil:

  • Kori had a talk with Emlyn (age 6) and simply said “you need this so you’re going to have to take it every day” and so far, Emlyn has been happy to oblige. She simply takes it off a spoon.
  • Katie says, “Florie has it on her weetabix or oats. She takes it fine. If not that, then mixed in a yogurt.”
  • Claire says that Edie, age 4, has hers in an organic yogurt.
  • Emma says that Holly, age 4, has hers off a spoon.
  • And my husband, Steven age 36, once had a surprise dose shot into his mouth with a syringe. He wreched and gagged and subsequently needed a nap. Baby.
All of the above parents have reported changes in their girls including:
  • Katie, mum of Florie said she has better eye contact and is more ‘with it’ since introducing the oils
  • Emlyn has been more chilled. Less anxiety and screaming.
  • Edie’s mum said, she’s been “more alert aware of surroundings, more engaging with others, more eye contact, more vocal, some words, nodding to some questions, even had star sign when we did twinkle twinkle”
  • Holly’s mum said she’s “more alert, has better circulation, laughs out loud more and is more vocal at annoyingly high pitches!”
{Our Experience}
Ok so here is our personal experience. Grace has been taking the oils for about 6 months now. We’re on our fourth bottle. I’d like to preface this by saying that we were quiet about beginning the oils to our general peer group. Our Rett friends knew, but we didn’t tell therapists, teachers or friends. I wanted to prevent the placebo effect – I didn’t want people seeing things only because they were looking for them. One week after starting the oils at 10ml, Grace became so very vocal. Prior, she’d become very quiet for months and months but since the oils, she has been very vocal. So much so that friends and teachers were commenting on how very chatty she was which is why I didn’t tell anyone about the oils. This was confirmation to me that it wasn’t in my imagination. I mean, how could it be? She was quiet for months and -BAM- suddenly more vocal than ever before in her whole life. Within a few more weeks, she began reaching out for purposeful movement with her hands which brought me to tears. Not since her regression at the age of 6 months has she ever EVER reached for my face until now. Additionally, she rolled over all by herself for the first time in 3 years. She’s become much more determined, active and engaged.
In addition to the oils, we also include pure, high grade coconut oil in her diet daily. We spread it into her sandwiches, mix it with her yogurt or simply feed it to her off of a spoon. It’s delicious and very good for the brain and overall health.
After a few months, I’d begun writing this blog post and my mummy sense started to tingle. I just didn’t feel right about the dose of 10ml. I talked to every doctor we saw. Some were hard-line on the fact that there shouldn’t be anything over the recommended dose (2.5ml) while others were supportive, and some were just indifferent. I had to come to a median comfort level, taking all of these factors into consideration. In restospect, I remember Grace having a couple nosebleeds at some point and I can’t remember when they were in relation to beginning fish oils. But being that nosebleeds are a sign of over-thinning of the blood, I feel justified in bringing her dose down to 5ml.
I really did fear what would happen when halving the dose. I worried that I would lose the Grace that seemed to have emerged. But she has remained every bit as engaged, determined and switched on as she did when she was taking 10ml. This tells me that if given properly to allow maximum absorption, I can spend half and get the same results with 5ml as with 10ml.
{The Naysayers}
I’ve heard some who criticise the use of fish oil for reasons like the yucky taste or that the girls go through enough already. I quite agree. It’s yucky. And she has been through a lot. For example, the feeding tube surgery because I couldn’t feed her enough. She’ll have to have that over and over again every 2 years or so. Rett Syndrome in itself is horrific. I don’t think a little fish oil is going to upset the entire equilibrium of Grace’s universe. And you know what, at the end of the day, even if all this amazing eye contact and with-it-ness doesn’t last, fish oil is good for the brain. And Grace has a poorly brain. It’s full of good fats and she needs extra calories. So she should have fish oils. We should all have them, in fact. I’m seriously considering beginning this same oil for myself and the boys. I’ll keep ya posted. Hopefully, it won’t make me more vocal or better at reaching for people’s faces with my hands.

{Further Reading}

Contraindications to fish oil supplements

This video is a supplementary electronic material for the article in International Journal “Genes & Nutrition”

aunt-e - January 14, 2013 - 7:38 pm

Fish oil is a ‘food’ not a supplement. True: buy quality fish oil! to avoid the risk of mercury overdose (that’s so important). In general, recommended doses are meant for people of average health so there are benefits to ‘overdosing’ patients with particular needs, for example, nutrition therapy for burn victims includes an extraordinary amount of protein. However, it is possible to have too much of a good thing as this idea of ‘overdosing’ is meant for shorter periods of time, particularly a healing period, and not necessarily a life-long therapy as high doses of things like antioxidants over a long period of time can actually cause the diseases they’re known to prevent (like cancer). But seeing results in as short as 6 months on older Rett girls leads me to believe that perhaps the bodies of Rett girls are forever in a healing period…maybe that’s the real question at hand.

hayley evans - January 14, 2013 - 7:42 pm

Amazing news! I’ve noticed a huge improvement in Grace recently… Over the moon for you guys, long may the improvements continue for Grace and all her girlfriends 🙂

Jaydyn Blair - January 15, 2013 - 4:34 am

Your a great mom and Grace is lucky to have you as a mother. Everything you mentioned is worth trying, your dedication is inspiring.

Danijela Szili - January 16, 2013 - 8:28 am

I have been intrigued by this subject for a while and that is why I posted it on Rareconnect in RettCommunity. I wanted to collect info and experiences from Rett parents from all over the world. It is very good that you dedicated time to study and write about this. It would be great if others could give their experiences too on Rareconnect so that we have all the info on one place for the other parents to read.
I had one question. How do you measure 5ml? Itt should be one tea spoon approximately. Do you have some other device to measure it more precisely or you use a tea spoon?

Thanks again for all your work and info you gave us. Greetings from Budapest

Liz Campbell - January 17, 2013 - 7:51 pm

Wow!-what an amazing post! My little girl Jessica is three and a half, and we started her on fish oil 6 months ago. We are using the Norwegian oil that was used in the original study. I did look at other brands that are available here in the UK but found I would be either significantly under or overdosing her. However I didn’t find your Boots brand so will be heading down there soon to have a look! We give her 5 mls in a syringe every teatime,as this is the dose recommended for Rett girls in the leaflet that came with the oil. Since starting the fish oil, Jessica has definitely made marked and significant progress. It is unclear if her cognitive abilities and understanding have improved, or if it is that her communication abilities have improved, so we now know what she can learn and understand. She definately is far more alert and “switched on” – although if you had asked me before, I wouldn’t have said that she wasn’t! Her level of eye gaze communication has developed significantly, and she appears to have more functional use of her hands which we use for pointing and communication mainly. She has also been able to learn (or show us that she has learnt) new things, such as being able to point to characters in her favourite book when asked to, pointing out numbers 1-10 and colours when asked to, matching and snap games etc as well as starting to request to use the potty/toilet. We haven’t noticed an improvement in her gross motor skills (she doesn’t stand or walk), but starting the fish oil coincided with a development of scoliosis which may have had an impact. I don’t know if any of this was the fish oil, or just the timing coincided with a developmental stage (although it does seem too much of a coincidence for so many girls to show the same effects). But unless anyone can give us a good reason to stop, Jessica is staying on it!

PS can you post where you found the information that stated the dose to be 1 ml/kg in the original study as I wasn’t aware of that and I was wondering what happens as the girls get bigger. Thank you.

Scott L Vannatter - January 18, 2013 - 9:45 pm

Great article. Well-written. I have used fish oil for nearly 2.5 years now. I take 2 of the 4 recommended dosage per day. I bite the end off the capsule and drink it. Total per day is, perhaps, 1 teaspoon. I have to be careful as I am a diabetic and had a hemorrhagic stroke. I had a colonoscopy and had to go off the fish oil for 9 days prior to the surgery due to possible blood thinning effects. I take it because of the healthy brain possibilities. Does it work? I don’t know. I might be worse off if I quit, so I don’t. I don’t seem any worse off. I know that my memory seems to be no worse and the same for my general thinking level. I have started taking kelp. I don’t know about Rhett’s but it is supposed to help with brain connections and I am hopeful it will help repair the connections (missed) that give me double vision.
Scott

Janie Beaumont - February 7, 2013 - 8:42 pm

Thankyou so much for sharing your research with us like this, I have found it very useful. x

Emma - February 19, 2013 - 7:13 am

And for those allergic to fish oil (or vegan) try Hemp Seed Oil – it has the same properties as fish oil and we have seen many many beneficial results from using it. x

Denise - February 26, 2013 - 7:35 pm

Amazing results… well done… having worked in pharmacy for over a decade and being from a family of generations of pharmacists, I have a life long interest & education in health. The best I have found for supporting the immune system, detoxifying the body & brain is MAXGXL available from max4eva.max4u.com It supports the body to produce its own antioxidant glutathione. Studies and research have shown huge benefits in having a raised glutathione level… all the Best, I have a 15 year old son & he has food intolerances to milk & wheat which I thought was hard to deal with, I admire & respect you ladies for all you are doing for your children… God Bless You

Julia - March 16, 2013 - 4:13 am

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[…] Fundamentally, we believe that it’s of utmost importance that parents follow the advice of their child’s doctor and the dosage advice on any bottle of medication, vitamins or supplements. With things like omega 3′s, it’s not particularly uncommon for people to be on a higher, more therapeutic dose. Again, this needs to be a personal decision. All of the trustees and directors at Cure Rett give their children fish oils. Even the ones without Rett. We all give a different dosage based on discussions with our physicians, comfort levels and the research we’ve done to settle on a dosage that’s right for our girls. For some, it’s the dose on the bottle. Some of us give more. But we don’t recommend a dosage. That’s a personal decision. One of our trustees has written an exhaustive blog post on her own experience with the oils which you can see here. […]

[…] to guarantee themselves that any improvements weren’t imaginary, and boy, were they anything but! Grace’s story is uplifting, inspirational, and best of all, it spreads hope to […]

[…] Round 6: Is One Better for Rett Patients Than the Other? The best absorption as we discussed in Round 1 is going to come from liquid fish oil. This will most likely mean faster and more apparent results. However, as highlighted in Round 3, every person is different. All of our bodies behave differently based on numerous factors. There isn’t a guarantee or definite answer as to which is going to generate the best results for a Rett patient or for anyone. If you have been keeping up with the stories that other Rett parents are posting about the results they have found, you’ll read that they use liquid oils (because it’s easier to administer the liquid to a Rett patient than several large capsules). To reference their results, click below: http://purearctic.com/a-story-about-rett-syndrome/ http://www.graceforrett.com/rett-syndrome/r168x/fish-oil-rett-syndrome-everything-i-know/ […]

Tessie Cooper - July 17, 2013 - 12:30 am

What Other meds does Grace take?

Edward J. Samaro - February 4, 2014 - 7:59 pm

My position is this: I believe any parent of a child with Rett Syndrome will do anything they believe will help their child. And to that end I say do everything you can do. If vitamins, fish oils etc. help in daily nutrition then go for it. I read the study. It was small and NOT at the same scrutiny and peer review worthy of anything other than it is a dietary supplement as good as any other. This is in NO way any type of cure or breakthrough for the treatment of Rett and should NOT be regarded as such. Nothing should ever take the place of the constant medical intervention prescribed by your ,

[…] found in supplements) is necessary for calcium digestion and utilisation. This is found in the fish oils which many give to their children with Rett. However, the best source is good old fashioned […]

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