Dutch Magic Factory – Sam’s Story –

*Sam’s journey toward CF complementary and integrative medicine is told here in her own words, be sure to check out her blog for more updates and news http://dutchmagicfactory.blogspot.ie/ We at the TLT4CF are grateful for Sam for letting us share her story to inspire other parents to empower themselves with knowledge and work together and you never know…. 🙂

How it all began

J was born through a C-section and was fed formula from birth as I was unable to breast feed due to complications and a large amount of antibiotics I was receiving. During this period J was progressing fine weighing about 8 kg and then at 6 months we changed formula and almost immediately he began to lose weight, began getting regular colds and general running nose, along with diarrhoea, his doctors prescribed him asthma medication and allergy meds but still his weight was not maintained.

Sam

After about the year mark finally he reached his original 8kg again. I switched to Soy Formula and he gained 2 kilos within the month, I noted his airways started to clear, his runny nose decreased and amazingly we were able to stop all asthma and allergy meds. I personally had suspected a food allergy to the other cow’s milk based formula and I began to cautiously add regular foods. The less soy he was getting the more we began to notice strange smelly diapers or oily stools with orange spots and they just looked very strange, nothing I’d ever seen before. Of course I immediately searched the net and consistently came across Cystic Fibrosis which began to ring alarm bells so I brought J to visit our paediatrician where a blood sample was taken for CF mutations and a stool sample test was done for Giardia infection (an infection known to cause malabsorption).

The Giardia tests came back positive and I was for the moment relieved, in a way to hear it wasn’t CF and just treatable infection. After some time visiting J’s doctor for a check-up to see if the Giardia infection had cleared, the test results were back on the CF mutations. Only one mutation had shown in the test (delF508) and I was told if no clinical symptoms of CF were present, then further testing was not needed. At that moment I was somewhat relieved but also confused could he still have CF? At the time my knowledge of CF was sparse and I began (again) to search on the internet to find out all I could. I found common symptoms J had such as salty skin and sweat crystals in his side burns after all the heat as we lived in Aruba at the time. It appeared to be sand but on further inspection they were actually salt crystals. The paediatrician thought it not necessary to do further testing, but I still had a mother’s instinct that something just wasn’t right and I needed to be sure, so we made an appointment in Miami Children’s Hospital for further testing, where we then learned that J had CF… He was two years old at the time.

Genistein

We were in shock and devastated and like all parents. I went through a range of emotions: fear, anger, despair but quickly I decided the best route was to learn all I could about this disease and try as to the best of my ability to keep my son as happy and healthy as possible until some kind of medication would become available.

I took in information on his genetics learning he had a “gating” mutation of S1251N and another common mutation delF508. I made a conscious decision to keep an open mind to all possibilities, to learn and garner all the knowledge I could and maybe I could put something together, after all knowledge is power but an open mind to this knowledge is even more powerful!

I began to rack my brains on what had helped J over the years so far to keep him well or improve him when he had gone through a bad patch, one notable thing was the soy formula (Nutrilon brand). So I began to investigate further, what was in there that could help so much? What made him so healthy and gain weight within that month we switched? Then I read about Genistein and CF and it was almost one of my eureka moments where in my mind it was clear this must have had an effect and I began to give him Genistein, in the form of a food supplement.

Curcumin

Further hours of research I came across Curcumin for CF and taking the safety profile of any supplement I gave J into consideration, I added this to his regime. We mixed Curcumin and Genistein everyday with applesauce and added his enzymes, which he was not a huge fan of the taste but he took it for us.

Sam & J

In 2012 the Curcumin the manufacturer changed the packaging of the brand of Curcumin we always bought and I accidentally and unknowingly ordered the wrong Curcumin which contained no piperine (a black pepper extract added to enhance absorption, thereby making Curcumin more bio-available). Within a day or two J’s stools were very bad and we had no idea why. We racked our brains and went through everything from his food, enzymes to the timing of his enzymes and even increasing them but nothing we tried worked over the next few weeks, until one day we gave a second capsule of Curcumin and the stools improved within the day. At the time we were certain Curcumin was doing wonderful things for him. It wasn’t until three months later  (I know for all my observational skills this one slipped!), I was facing the packaging and while eating a bowl of cereal I decided to read the packaging (as you do) and I suddenly noted that the capsules we had been using had no piperine with the Curcumin!

Almost immediately when he was back on the Curcumin with piperine things improved tremendously and we were more reassured that this combo was doing something for him. We noted something new happening which was a “wet cough” which we thought had to get treated with antibiotics and it made us wonder if for the period he didn’t have piperine with Curcumin did this leave him susceptible to infection? Or it may just have being coincidence but over time and through my blog I’ve learned from others taking and giving the combo of Curcumin and Genistein that they too reported a typical “wet cough” with every typical dose increase, which may be caused by better hydration of the lungs and perhaps a balance of the CFTR within the lung? Thankfully it also subsides within a few days or weeks depending on the amount of increase or the amount of “old mucous” the particular CF patient has to clear from their lungs. To my amazement and strangely the only journal I have a subscription to published an article of the synergistic potentiating effect of the combo by TC Hwang, which again reaffirmed my belief that this was the way forward. Of course this was in G551D mutation not the S1251N that J has but by that time, I’d done enough research to understand that the S1251N defect is similar to G551D and likely the combo would work well for S1251N mutation also.

We have noticed that dissolving Curcumin in hot (soy) milk improves absorption. We microwave about 30ml to boiling point, take it out of the microwave, open one Curcumin capsule, poor it into the milk. Stir, strain a few times, and stir some more until all is dissolved, than mix it into 200ml of chocolate milk (hot or cold). If a seven year old drinks it without complaints, it must be palatable for most everyone. Another idea might be dissolving Curcumin in a cup of hot soup. But this pre-dissolving is not necessary. Just taking a little more Curcumin would give you the same added effect.

Results –!!! —!!!

Finally the results so far are amazing!!

All the family

The latest sweat test came back at 59mmol/L!! We’re below the magic 60!

How the sweat test is used for diagnosis of CF:

Less than 40 = no CF

Between 40 and 60 = inconclusive

More than 60 = CF

Our sweat test history:

At diagnosis in Nov 2008: 118mmol/L (no Curcumin or Genistein)

May 2013: 90mmol/L (1000 mg Curcumin and 50 mg Genistein)

Feb 2014: 59mmol/L (3600 mg Curcumin and 150 mg Genistein)

(See Sam’s full blog on this topic http://dutchmagicfactory.blogspot.ie/)

Some might think a drop in sweat chloride levels could be a coincidence or something that can happen spontaneously. It doesn’t. I did not pay attention in Statistics class on how to calculate the chance that this is a coincidence, but if I’d had to guess it would be p=0.000andalotmorezeros1. This doesn’t just ‘happen’ in CF. Below are some graphs from scientific research articles on the new medication (Kalydeco/VX770)) for CF that corrects the underlying defect. You’ll see that the drop in sweat chloride we have found (minus 59mmol/L) is even greater than what is seen on 150mg of Kalydeco. (Please note that the drop from 118 to 59, is coincidentally the same as the absolute result of the sweat test, which is also 59)

All in all, it’s completely experimental. Yes, there is scientific evidence it works in a laboratory setting (‘in vitro’) and on living human cells (‘ex vivo’), but we absolutely don’t know what happens in the CF body (‘in vivo’) after taking this combination of supplements.  There is nothing I can say about safety, except for my son taking no more than the daily recommended dose of both supplements (adjusted for his weight) for the last 5 years and noticing no ill effects. Only recently, after discovering the fact that Curcumin and Genistein can really can correct the underlying defect in CFTR function, we have gone up to a much higher dose, while keeping a close eye on J for any side effects.

What else do we do?

Of course we don’t solely rely on a single thing to keep J healthy we also do multiple other things such as a no shoe policy in the house and a laughing policy!! Big belly laughs as much and as often as we can!

We don’t do physical therapy or airway clearance we prefer to do lots of exercise as a family and have a trampoline outside, along with many other toys which we all play with, all of which involve active participation and when it’s cold out we have the X-box kinect for indoor exercise with lots of encouragement and activity that involve movement and breaking a sweat! We also had a mattress upstairs in J’s bedroom we would all jump around and dance like a mad house to music for hours but once we noticed the ceiling below the room cracking we thought we better all stop jumping in the same spot, just in case! All in all we believe our healthy lifestyle and eating habits play another large role in keeping J healthy and of course the whole family. In a sense we all learned and benefit from the disease in a way…

Sam

The most fantastic news has just come in! We have received funding for a clinical trial with Curcumin and Genistein for S125N patients in Holland! I am proud to be able to tell you that as ‘the spiritual mother’ of this supplement combination (that’s what they called me…), I have been invited to become a  member of the Patients’ Advisory Board of the trial alongside a number of the specialists (adult and paediatric) and a representative of the Dutch CF Foundation. Of course this story is ‘to be continued’ when the results are in! Fingers crossed it will show the same efficacy for  other patients as it done for J!

If anyone has tried, or is going to try these supplements, I would love to hear from you! Please send me an e-mail at curcumingenistein@yahoo.com

http://dutchmagicfactory.blogspot.ie/

 

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*The opinion(s) expressed herein are the sole opinion of the author are not necessarily the opinion(s) of the Tracie Lawlor Trust. Always consult your physician and healthcare team before making any changes to your medical regime. For information purposes only not to be considered medical advice. Please see disclaimer

Integrative Care: A mother’s point of view.

By Louise Byrne

http://louisebyrnebooks.com/index.html

Ava Li was diagnosed in 2008, a week before I turned 40. She was our first and only child and although the news broke our hearts at the time, there was some element of relief to know that we had been correct all along in feeling that something was awry. Because there was no new born screening in Ireland then (it has since been introduced); she was 14 months old at her diagnosis. In those 14 months we had been in A&E twice; she had been on several courses of antibiotics and once we had been sent home by a ‘relief’ doctor with a pat on the head and told to buy a honey and lemon mixture to ease her cough.

I had always been a firm believer in alternative remedies and whilst I was content to give the first couple of antibiotics I got increasingly upset when I saw they were not working and I felt they were potentially damaging her young immune system.  I recall introducing Vitamins C and D and probiotics and noting a marked improvement in her health during that time. However, when the diagnosis came, I was shocked into doing everything the doctors said and because I knew very little about cystic fibrosis in the early days, I looked to them entirely for guidance and answers. 

However, in the following 16 months, I felt increasingly powerless and depressed; Ava Li was hospitalised twice with a total of three different sets of IVs and she was prescribed a further ten courses of heavy strength antibiotics for infections of varying grades.  Breaking point for me was the tenth antibiotic course which was for – as I discovered midway through the course – a scanty growth of staph aureus. At that point I realised I could not continue on the path we were on.  I felt that her immune system had to be capable of and allowed to fight some battles itself, and I realised I could not put her health entirely into the hands of prescribed antibiotics.  I had read, researched and cross examined all information relating to cf I could get my hands on. I realised that I had to regain control of my child’s health and steer a different course for our family. I would gratefully accept modern medicine at appropriate times, whilst utilising the generations of natural medicine, therapies and knowledge that had always been my basic instinct.

From the moment I made that conscious decision our lives changed for the better. I felt empowered and alive again. I reintroduced various vitamins, minerals and supplements that I would have used previously, I researched dosage, I googled cf with the words ‘good news’ attached, instead of ‘life expectancy’ or ‘severe mutations.’ I made contact with scientists who ha

Lou and Ava Li

d done research on various promising therapies e.g. silver and glutathione. I worked intuitively again and believed in my ability to make a positive difference.

Following these initial changes, Ava Li remained off antibiotics for 10 months until evidence of infection showed up on a chest x-ray. She was then antibiotic free for a further 23 months until a scanty growth of pseudomonas and, is currently 11 months hale and healthy. I usually dislike discussing or comparing periods without antibiotics as I understand everybody is different and nothing is certain or guaranteed – everything can change.  I use it here purely to display what I firmly believe was the difference my approach and attitude had on our daughter’s health and outlook.

The specific changes I made at that time are as follows:

Diet: I began daily juicing organic fruit and vegetables, included daily portions of raw, unprocessed food, kept sugar intake to a minimum and removed most dairy (we still do limited amounts and try to veer towards goat dairy whenever possible).

Supplements: we added daily Vit C, D, selenium, probiotics and glutathione.

Exercise: We make a huge effort to incorporate elements of fun exercise. Currently Ava Li has running, swimming, dance and dog walking incorporated into her week!

Attitude: This is arguably the most vital element of all for me. I believe we are truly lucky and have an immense debt of gratitude. I also believe that we have control over our bodies, minds and health. It is not that I think we will not suffer or become ill at times. Rather, it is a belief that we have more ability to deal with those challenges that we often give ourselves credit for, and that our physical, emotional and spiritual bodies have an immense healing capacity which we need to nurture and develop.

Of course I still have times of worry, doubt and anxiety, but I attempt to recognise those times as a human condition rather than weaknesses!  I gratefully recognise western medicine and the benefits and advances it brings to our world. However, I also feel that western medicine owes much of its foundations and many future endeavours to nature, yet it often displays little respect or awareness of this and is too often solely profit driven. In Karmic terms alone this can’t continue; it is not possible to continually take from one source and repay with disrespect and self-serving greed. It is therefore unthinkable for me to allow my daughter’s future to be entirely in the hands of western medicine.

I truly believe that as a global community we need to begin to see the natural healing and life giving properties of our universe, and ourselves, and gratefully recognise the benefits that a holistic approach to health and living brings.   

I believe that by raising our daughter with a healthy awareness, empathy and respect towards all living things, she will be well armed to rise to whatever challenges she may meet along her path.

 I see her as a strong and healthy child. I make a conscious effort to believe in the power of myself; so that she can believe in the power of herself.

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This story was kindly re-published with the consent of our Uk friends at http://dearcf.com/. Louise Byrne has authored two books specifically for children with Cystic Fibrosis, in particluar she has received notable media attention from her book “Can you see what I see?”, which she decidated to her mother, a book that no doubt encapulates Louise’s own ‘Zen’ positive philosophy. Read more on her book here!  The information contained herein is for information purposes only and is not to be taken as medical advice. Always consult your doctor or healthcare professional before making any changes to your medical regime. Notice Disclaimer

End of Year 2010 for the TLT4CF!

This year has being a whirlwind of new & old events for the Tracie Lawlor Trust for Cystic Fibrosis. A few new events went a head this year, Olive McGrath’s “Tracie’s walk” in which 70 people walked from Castlebridge to Wexford town, along it’s beautiful Quays & half foot-paths on the way in. Looked like it would be an awful day but the clouds cleared & blue skies prevailed leading to a relaxing, enjoyable stroll into Wexford. Then came a 24 hour spinning bike challenge, I mean how hard is it to pedal really? Oh my, did many of us eat our words, as we sat on what was possibly the worst shaped, least comfortable saddle I’ve come across, if I hadn’t of popped all them bubbles in the bubble wrap I would have had it wrapped around it! Well at least we all had the same pain, some more than others as Mike & Paddy decided to race each other in the first two hours of the challenge! Mike, a CF parent organized what was a brilliant day & night overall but I don’t think we’ll be so enthusiastic the next time with those saddles!

The kick off to the year was our annual cabaret & dance again a great turn out from the people of Wexford & Tracie’s home village of Castlebridge. Annual events from last year such as Ann’s Angel’s Holistic day, the Bridges Charity Challenge & Mick & John’s soccer tournament, were certainly as exciting & enjoyable as previous years.

A head-shave in Roscea in Co. Tipperary which obviously gave them good look for the All-Ireland win, as they learned a lot from the model county! MUFC table quiz was an enjoyable night with Brendan & co. putting on a good show, pity United can’t do the same at the minute. And finally a mention must go to two super athletes who ran the Dublin City Marathon for Miss Snead & Mr Matt :). Thank you!

All money raised has lead to purchase of more Chi, FIR machines & more recently finger pulse oximeter’s that can give accurate heart & oxygen saturation (within the blood) to a CF at home within seconds. Extremely useful during exercise to make sure there is not a dangerous drop in stats & if so they may need to see their doctor, all to catch an infection earlier! Also the money is used for the hours looking into research journal papers online & forming an opinion on the best form of diet, exercise, lifestyle, supplements etc. for CF & all the info will be made available free on our websites blog. Finally a proposal for a study has been submitted to European Federation of Complementary & Alternative Medicine (EFCAM) into the viability of a 3-6 month study of the effects of Buteyko Breathing on Cystic Fibrosis patients. Thus far we have spent in excess of €30,000 on the above & more!

Merry Christmas everyone, have a lovely holiday & a happy new year!!

See you all next year!

Charity Challenge 2010

This year’s charity challenge took place on the 25th of April. Nine teams of four set out on this gruelling run, row & cycle. Spirits were high before the teams set off, a few kind words of encouragement & indeed a few pranks as one girls team decided to “jock” the opposing boys team member before they set off! The poor lad took off & kept pulling up his shorts almost to chest hight, just to be sure they weren’t going anywhere this time.

The run around Wexford town hill’s seemed to go down well as most past the first hurdle with rosey red cheeks, before hopping into the boat & setting off on the row under Wexford bridge & back around to yanky slip. As the boats came in it was a mixture of go, go, go, & I don’t want to get too wet. As one team member from Limerick hopped out of the boat & then got dunked but still came in with a big smile, as everyone tried to hold their laughter in!

The Bridges brothers & one other stormed through the run & row. Not showing any signs of their age, as it would probably accumalte to more than your weekly dole! They burst off on their bikes & even though one bridges had their thigh muscle give in they still came in second place. The winners from Enniscorthy Edermines rowing club powered their way throughout the challenge keeping a consistant pace & each taking the lead at different points in the run, row or cycle.

The spectacle on the day was truely something for the on-looker or indeed the amateur photographer, especially the row with all the boats taking different lines, the power & flow needed for these small boats to speed across the Slaney.

All this was of course for a good cause in the end, the jokes, the banter, the sweat & thankfully no tears! Was in aid of the Tracie Lawlor Trust for Cystic Fibrosis. All monies raised will go towards research & to help Cf patients in Wexford & the SouthEast. A special thanks to Richie, Victor & Paul Bridges for their work again this year. Thanks to Ferrycaraigh rowing club & to all those who took part hopefully see you again next year for round 3!

For pictures click here!

Roscrea Head Shave by Maria Phlean

We organized a fundraiser in the Stand Pub Roscrea Co. Tipperary on the 16th of April 2010. It consisted of five people getting their head shaved, 3 lads & 2 girls took part. A man who hadn’t shaved his beard in 22 years also decided to give up his hair & go bare for a great cause! On the night there was spot prizes & a signed Tipp. jersey was auctioned. There was fun, music & lots of laugh’s in what ended up as a chilly night for those with bare heads or chins!

In the end it was a fantastic night in our local pub, with all our family & friends that I would like to thank very much for their help & thanks to those who attended & took part. Much needed money was raised for Cystic Fibrosis patients in the South East in what was a very enjoyable night! Pictures to come soon!! 🙂

Cupcake & Cookie Tea Party by Rebecca Gangnus

Sunday the seventh of March saw the first TLT Tea Party (of many we hope) held in the Sky and the Ground, South Main Street, Wexford. There was a lovely buzz in the side bar as an amazing array of cupcakes, cookies and cakes in all shapes, sizes and colour combinations were donated by the numerous guests.

Young and old enjoyed the free treats with tea, coffee or cocoa and music by popular local artist Anne Nagel, who’s sunny tunes matched the spring sunshine streaming in from the courtyard doors. The party went on well into the afternoon with a raffle and the announcement of Cupcake Queen which was scooped by Liz O’ Connor and daughter Ava!

Finally I would like to thank all the local businesses including Sam McCauley Chemist, The Wexford Book Centre, DV8, Boggan’s Bar Kilmuckridge, Windmill Therapeutic Centre and Ballyvaldon Nursery who donated prizes. Most of all, a big thank you goes to all the lovely people who donated so generously on the day, both their money and their creative baking.

Nicky Rossiter’s “The Street’s of Wexford” by Celestine Rafferty

“We all wanted to pinpoint our place. In reality we need to invert that address to find our place. Apart from the most intimate sense of place of family and home, the street is our reference point or it may be the townland for rural dwellers.
The street defined friendships, loyalties and often boundaries. In earlier times people often confined interaction within their streets or neighbourhoods. There were also intense rivalries between streets or neighbourhoods – not always confined to the sports fields.
The word street comes from the Latin, strata, and in the Middle Ages the word a road but later came to denote the main thoroughfare in a town or village.
It is interesting to note in a publicity handout for a recent television programme that three hundred years ago – around the early 1700s – Liverpool was classed as a seven street town.
Quoted in “Hore’s History of Wexford Town and County” we find that the suburbs of Wexford in 1659 were classed as Faigh (The Faythe), Bridstreete (Bride Street), St. John Streete (John Street), Weststreete (Westgate) and Maudlintown. This gives some indication of the streets existing at the time. To these would have been added the core streets like Main Street, High Street etc.
In Pigot’s Directory of 1820 the street addresses listed are Back; Main; Selskar; John; Cornmarket; Slaney; Westgate; Old Pound; Common quay; Faith; Custom House Quay; Bullring; Castle; Monck; Anne; Mary; Ram; Paul Quay; Stonebridge and George.”