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advice please for mum of teenager with cf

Posted , 3 users are following.

Katharine_33
Katharine_33

Hello I'm mum to a beautiful, talented, generous and kind teenage girl. This is her second major episode of cf in 6 years. She is only 16 and is determined to be a doctor. Right now she is going to 3 or so hours a week and isn't keeping her grades up. She sleeps most of the time and gets really down. I'm struggling because I can't make any of it better and because I lost my lovely Mum in My ay who was my support. We both miss her loving "cocoon". I'd just love some ideas, support and advice to help my gorgeous girl

 Thanks for reading my post,

Katharine 

0 likes, 8 replies

8 Replies

  • david59662
    david59662 Katharine_33

    Posted

    Hi Katherine,

    I have been suffering CFS initially post viral fatigue even though every test has been negative for 10 months. Prior to my illness i was a very fit triathlete. I am 34. What i have found has helped me has been taking alot of vitamin c powder but more recently and you might want to try this first, particular adaptogenic herbs. I've tried alot of products with no effect but these seem better. I think my situation is related to adrenal exhaustion. I'm not saying this is what is wrong with your daughter BUT it's worth a shot, with little cause for any harm. Adaptogens work to balance the body regardless of condition.

    Try the adrenal health formula, see if she feels better. You can feel noticably better within hours of taking them like i did. I'm hopeful it can essentially cure me in time. I've only been taking them the past few days but thought it worth mentioning. There has not much i have tried that has helped but these definetely have.

    Stay strong, don't give up !

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    • Katharine_33
      Katharine_33 david59662

      Posted

      Thank you David, I appreciated your post. I was sorry to read of the effect cf has had on you. I admire your knowledge and experience of vitamins and herbs. It is great that you have seen an improvement- it does give us hope. Milly's doctor put her on a high vitamin c dose and iron tablets recently. She tolerates vitamin c more than the iron but copes if she alternates days taking iron. I will ccertainly look into your suggestions. We are going to see her doctor in a few days and have been compiling a list of herbs, treatments and suggestions from these posts so he can give us some guidance. He is a very compassionate, open minded and holistic doctor so we know he will be happy to consider the ideas. 

      Thanks so much

      Katharine 

  • JennyWren8
    JennyWren8 Katharine_33

    Posted

    Hi Katherine,  I can understand your frustrations, this illness is so debilitating and there is little help nor good advice from the NHS, who don't seem to take it very seriously.  

    I found optimising my diet can really help improve energy levels and using their pacing protocols have been invaluable.  Diet and lifestyle changes take a lot of work and energy and can take some time to show results, so if you can help with diet and pacing it would be really helpful for your daughter.  Also making sure when it gets bad, she pulls back a bit and concentrates on healing things and not put so much pressure on herself to push through it to 'achieve', but to focus on expanding wellbeing and finding more long term plans to reach her goals.  When I lost my successful dream career in the film industry to this illness I was bereft, but I have mananged to create a website and hope to create youtube videos and write screenplays and I am slowly working towards these things in the long term.  This illness is devestating.  I underestimated it in the beginning as my original GP regulalry ridiculed me, so I didn't appreciate the severity of my own illness and just kept throwing myself back into work as soon as I could.  As a result my illness got steadily worse I had to fight to get CBT & GET on the NHS and it pushed me into a relapse so severe that I could no longer work.  I wish I had known then what I know now and to focussed on recovery before taking too much on before I was ready.  It's a long haul to recovery and it can seem precarious and can take years, but I am inspired by the recovery stories on the freedom from ME site and it gives me hope of a brighter future. Until someone comes up with a cure, the best thing we can do for ourselves is to focus on expanding our wellbeing and try to give our bodies the best tools to heal itself. 

    Your love and support is clear from your message and I can gurantee that is making a huge difference to her wellbeing. smile Yes following diet and lifestyle changes can seem really restrictive at first, but it has really helped me to get out of severe ME and into moderate and hopefully continue to mild and maybe even full recovery!!  :D

    Useful Stuff:

    Low GI organic diet with protein for every meal, AND don't skip meals! Ever! It's really bad for the adrenals, which are already under stress from being ill.

    Avoid caffiene, stimulants, sugar, bread, white refined carbs, ready meals  - This is really difficult as we tent to crave sugar and caffiene when we're energy deplete, but these things are really bad for someone trying to recover from ME/CFS.

    Supplements: It's best to see a professional like the OHC to find out deficiencies and use high quality supplements.  Make sure deficiencies are tested/ruled out by blood tests D, Iron Magnesium etc with your GP  Also make sure other illness are ruled out with your GP such as thyroid, diabetes, etc.  Magnesium supplementation made a huge difference to some of my more severe symptoms.  Look for "Magnesium – the Forgotten Mineral - Nutri" for info. Don't overdo it though.

    Build gut health with probiotics - lots of problems are caused by not having enough good bacteria which boost immune system.  Search Leaky Gut syndrome and see if this could be a contributor.  Some of the lastest ongoing ME research is a gut microbiome study. Also a recent study on allerges shows they may be caused by lack of certain good bacteria in the stomach and many people with ME/CFS find they become intolerant to foods and have difficulty tolerating supplements.  Many also have vitamin & mineral deficiencies which may be caused by leaky gut, so even if you have a healthy diet, you're not getting the nutrition you need.

    Omega 3 oils:  There was a study showing abmormal brain function in people with ME which was helped by EPA oils, you can read about it in the book  "Chronic Fatigue Syndrome: A Natural Way to Treat M.E. by Basant K. Puri"  I can't tolerate fish oils right now so I am using Epigenics Red Wonder oil, which is plant based.

    Take up Tai Chi or Yoga.  I do yoga stretches every morning and night, but don't get on with full yoga (which makes me dizzy) so do Smile Qigong when I am able.  Smile Qigong is tai chi designed especially for people with ME/CFS.  Gentle walking is also good.

    Pacing:  Pacing is really helpful and pacing can be different depending on illness stage and severity.  I find the Freedom From ME pacing protocols the best I have used and can also recommend  "Tired of Being Tired' book by Dr Jesse Hanley is a great book for pacing and diet for people with fatigue.  

    Also search for 'Natural remedies for POTS' if your daughter is spending a lot of time immobile and is now finding dizzy on standing and can't stand for long.  It's good to try and prevent this as many ewho spend too much time lying down may be sucepable.

    Amygdala Training:  The guy who desigend this programe believes that illness is prolonged due to damage to the amygdala (possibly by inflammation in the brain, which could be casued by virus or something like leaky gut or Heavy metal poisoning (like from mercury in Tuna, etc) and he aims to retrain the amygdala so the body can heal without sending all the faulty signals from the brain.  I've only just got this so can't say if it works, but I think it's better than similar therapies such as Ligtening Process, Reverse Process, Mikel Therapy as you can do it on a 5 dvd course from home, it's cheaper at around £100 and Dr Gupta offers a money back guarantee if it doesnt work like you hoped in 6 months.  I think he's the only person offering a money back guarantee for this type of therapy.  I've only done the first dvd so far and I do feel more positive.

    Something that has also helped me, is rather than concentrate on what I can't do anymore, is to focus on what I can do and I feel it's very important to find things that bring you joy and make sure to include them in everyday life - some new hobbies perhaps that are fatigue friendly.  I took up meditation and mindfulness.  It helps me to focus on on the moment and value the little things.  

    Jon Kabat Zinn who teaches mindfulness does a CD on using mindfulness for pain relief and also wrote a very cool book called "Full Catastrophe Living: How to cope with stress, pain and illness using mindfulness meditation"  and the CD is called "Mindfulness Meditation for Pain Relief: Guided Practices for Reclaiming Your Body and Your Life"  I have found both really useful in coping with the challenges of ilness.  I also found Chinese Traditional Accupuncture helful for water retention, headaches, pain and nausia and osteopath James Ellis for back pain and oedema along my spine. He used a similar technique to the Perrin one.

    Don't lose hope.  Together you will get through this.  Hopefully some of the things that have helped me will be of use to you and your daughter.  smile

    • Katharine_33
      Katharine_33 JennyWren8

      Posted

      Hi jenny, thank you so much for taking the time to write such a thorough guide for us. Milly got a lot out of it. She is going to try a few new things you suggested, particularly the Tai chi. I was interested in your suggestion about gut health. Here in New Zealand we have an immune boosting probiotic called Bliss. After reading your post I put milly on that today. We are also both going to look at doing mindfulness. She cringed when she read not to miss a meal! This is an ongoing discussion between us and something she struggles with every day. I encourage her to eat to tell her body it's time to wake up. Unfortunately nausea is a problem for her.

      We plan to come back to your post and work our through your information and suggestions. It is wonderful to have ideas of what to try. 

      Thank you so much. Your kindness and amazing knowledge is humbling. Every post I read I think how sweet people are to share with us - strangers from the other side of the world. I guess we're all connected by our experience of cf and by a desire to make lives better for ourselves, our loved ones and by helping others in similar situations. 

      Thank you.

      Katharine x

    • JennyWren8
      JennyWren8 Katharine_33

      Posted

      Hi Katherine,  you're welcome. smile  It can be difficult knowing how to treat M.E. as different people have different onsets, so what works for one, may not be suitable for another, so it's good to have a range of things to try and then pick something using your instincts and give it a go.  I always go lowest dose possible and do it for a few days before increasing anything to see if I can tolerate it. Whether it be foods, supplements or excercise or treatment plans. Best to go slow and increase if there are no problems. 

      It's more experience than knowledge.  I've been ill for a while and feel like I've tried most things and healthy diet and pacing seem to make the most sense whatever the onset. I think of it as maximising the body's own healing system.  To heal itself the body needs good nutrition, clean fresh water and optimal rest (relaxation when resting and properly switching off and getting a good sleep routine) balanced with regular gentle moevemnt and removing things that slow healing, such as stress and foods the body has to work hard to process and don't give much in nutritional value (i.e. bread, sugar, etc).  Making sure you include fun and joyful things in your day is good.  I try and watch comedies on tv, dvd and youtube as there is evidence that laughter boosts the immune system.  :D  Sticking to new eating plan can be difficult and I've learned it's best ot to be hard on myself as things are hard enough, so I do what I can.

      I know how Milly feels with the nausea and I find not skipping meals hard too.  I get mine worse in the mornings so find breakfast and lunch can be a challenge and have plain porrige (with water and no sugar) or a smoothie and some nuts or chopped apple or cashew/almond nut butter on celery sticks.  Snacking on something like home roasted pumpkin, cashews, almonds, sunflower seeds and other nuts (but not peanuts) I keep in them in a jar are great and really tasty and convenient snack, though they don't last very long! wink   I make my own oat crunchies and put only 30g of sugar in for a treat.  I can post the recepie here if it helps.  The OHC said to me that to aim for about 70% sticking to the diet as anymore can be too tough and swap little things - like I used to love scrambled eggs on toast and now I have scrambled eggs and asparagus.  I find dairy too difficult to give up, so I switched to goat cheese and almond milk.  I swapped crisps for roasted nuts and seeds, and try to use virgin coconut oil instead of butter.  For lunch I have mainly salads with chicken or goats cheese or organic vegetable or chicken broth type soups - soups are great as they can be frozen.  My mum makes me soups and separates in to servings and freezes them as it means something quick and hassel free and nutricious is always available and we know it's all fresh with not additives.  I find soups the best when I'm feeling nauseus and drinking warm or hot filtered water.  I can't tolerate cold water so I drink it hot. Ginger tea may help nausea.  I also have aloe vera juice when my tummy is weird and gripey and sometimes in the morings I have hot water with a squirt of freshly squeezed organic lemon juice.  Lemon goes alkaline in the body so it's very healing and a decongestant with lots of vitamin C. I avoid orange juice as it can cause migranes, asthma and in me personally cistitis and stomach cramps and stays acididc in the body, unlike lemon juice which turns alkaline when it's broken down in the body.  Weird huh?

      I've found the tai chi wonderful when I can do it.  I sometimes do it sitting down and even if I can't do the whole smile qigong dvd or many moves I do a freestyle version where I just go with my instincts and move in whatever way feels right.  

      If I think of anything else I will let you know.  just know you are not alone and there's lots of things we can try to help ourselves.  smile

      Best wishes  smile

      Jen x

       

  • Tigger_the_Wing
    Tigger_the_Wing Katharine_33

    Posted

    Oh, how sad - she's very young to be coping with that, and it's tough for you to be caught in the middle of grief for your Mum and worry about your daughter. I have found that the best help for my own CF relapses is being able to pace myself and being allowed to stop and rest at any time, and have someone else look after me without being pushed to 'try a bit more'. If I'm allowed to do that, then the relapse is much shorter, and the recovery much stronger, than if I have outside pressure.

    Of course, it isn't always possible to avoid all outside pressure.

    Right now, worrying about her grades is probably taking a great deal of her mental resources. The thing is, that schoolwork can be caught up with. What is important is that she rest as often and as long as possible. If you can liaise with her teachers to allow her to do all her work from home for the moment, and as little as necessary, that might help her recover sooner. In any case, time 'lost' through illness can be made up later - the usual route through school isn't the only one, even though they might try to persuade you that it is!

    My own daughter was very sick during her teens, missed a year of school and went back and finished. She was then very sick during her second year at uni and had to drop out for medical reasons - but she went back several years later and graduated last year, with honours, at the age of 29. We are all very proud of her.

    Don't worry that CF causing school absence means not achieving one's dreams. It is never too late! 

    • Katharine_33
      Katharine_33 Tigger_the_Wing

      Posted

      Hi trigger, wow what wonderful post. Your understanding is such a comfort and helps mebfeel less alone in this. I read your post to my daughter and she found it so reassuring and positive. We certainly have to face the reality that her progress through school and uni is going to be a winding path with many modes of transport -all at different speeds. It is so heartbreaking to watch her and not having my mum to catch me when I faulter is so sad. I rung her school today, after reading your post, to talk about what her options are. We are going to look at a combination of correspondence and at school learning. Even if she doesn't pass the year she can gain some knowledge and the school might let her progress to next year. 

      You are so right that she Ned's prioritise rest and reducing stress. She is a high achiever and this means she struggles to accept anything except hard work and doing her best. 

      Thank you so much for your kind words, I hope you and your daughter continue to manage each day.

      Katharine 

    • david59662
      david59662 Katharine_33

      Posted

      Hi Katherine, i gave a reply but for some reason the moderation is taking ages. I'll PM you.
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