Lymphorrhea

[ssc123]

Hi, I'm new to this site.

My daughter (and my son) has primary lymphoedema which mainly affects her lower limbs. For the last few years she has been struggling with lymphorrea which was mistaken for urinary incontinence. The lovely people at St Georges recommended a MCT diet which is virtually fat free.

The effect of this diet has been amazing. Her leakage has almost stopped, she has more energy and her swelling has reduced.

I am wondering if anyone else has tried this diet and it's effects more long term? I am particularly interested to understand if anyone has tried to increase their fat content and the effect this had?

Best Wishes

[CCT67]

Hi I also have Primary (legs, trunk and arm) but have not had lymphorrea - my MLD therapist and I are monitoring my groin closely. As for MCT diet, in assuming you mean MCT Ketogenc Diet? You mentioned fat free however MCT Ketogenic diet is eating MCT oil not traditional fats. There is a lot of research in the US presently looking at the effects of this diet on Lymphoedema. The results thus far are very positive which may be why St Georges advised it. Lots of anecdotal information from ongoing research is extremely positive, so it's not surprising it's helped your daughter so much. I've eaten a slightly modified Keto diet for several years and can only say good things about it and how it helps with symptom management. You/she may be interested in the popular Facebook group 'Lymphedema and the classic Ketogenic Lifestyle' It's run by a Lymphie in Australia whose had resounding success in managing LE symptoms by eating Keto. There are loads of Lymphies eating Keto who praise the diet for swelling/symptom reduction. As for your question about increasing fat - there should be no problem as long as it's MCT Keto diet approved fats eg avocado. I eat 1 per day as it's so nutritious - full of extremely good fat and vitamins 😊🦋

[ssc123 in reply to CCT67]

Hi CCT67

Thanks so much for your reply. My daughter is allowed 7 grams of normal dietary fat per day (which is very very little especially for a 10 year old). She supplements her diet with prescription MCT oil which only contains medium chain fatty acids which unlike traditional dietary fat does not pass into the lymphatic system. So yes you are right the oil does contain fat but it's a different kind of fat. Her dietitian said the prescription MCT is different to the ones commercially available as it is more concentrated and purer. She said the commercially available ones wouldn't be suitable because they still contain some long chain fatty acids. She also has no restriction on the amount of carbohydrates or protein so it that sense I think it may be a modified form of the ketogenic diet. We are very new to this so I may be wrong.

The difference in my daughter has been amazing and not just in terms of her lymphoedema and leakage. Her concentration and general happiness has massively improved.

St George's said she would be allowed the occasional cheat day. She has had one cheat day so far because she wanted to eat a bar of chocolate to celebrate an achievement (small things which when your not allowed can seem such a big thing). The following day her leakage had returned, she felt sick, was unable to eat and was exhausted. She now doesn't think the chocolate was worth it. Fortunately, after a couple of days back on the diet she returned to normal.

It is very early days and there are some negative consequences that we are trying to manage such as weight loss. I am just concerned because my daughter is so young how longer term this will effect her so I would really welcome other people's experience of the diet.

Unfortunately I'm not on Facebook so I am unable to connect with those groups.

Best Wishes

[CCT67]

Hi I didn’t realise your daughter is only 10 bless her no wonder her fat is limited. Interesting she didn’t find the chocolate worth it. I long ago discovered that it’s never worth it and never have so-called cheat days. The long term effects so far are good, nothing adverse. The diet is being studied in numerous contexts and diseases - all the research appears positive short and long term. If she’s losing weight perhaps a bit more fat and/or protein would ameliorate that.

Rw facebook, its straight forward to create an account, it’s free and you can use a pseudonym as a screen name for anonymity

[Annale]

Hi there, this sounds very similar to what my son experiences and he's only 13. Do they also recommend not being too active to keep the lymphatic system from producing more fluid? That's the hard part for my son. My son is being treated at The Center for Lymphatic Imaging and Intervention in Philadelphia chop.edu/centers-programs/c...

They are doing some amazing things there and my son has just recently had some exciting milestones. If you'd like to learn more let me know and I'll give you my email. Have you had an MRI lymphangiogram done on your daughter? Do you know why she has the leaks? Yes, the MCT helps and I also cook with it, but for us, my son is underweight and I worry about him not getting essential fatty acids.

[ssc123 in reply to Annale]

Hi

Thanks so much for your reply. In some ways it nice to know we are not the only people going through this although I'm also sorry you are going through it too.

No they don't recommend not being too active. In fact they recommend the opposite. That said, before she started the MCT diet, exercise did increase the amount of leakage she experienced but since on the diet exercise has no effect. Which is fortunate because my daughter is also very active.

The link you have sent looks very interesting and I will have a more detailed look when I have five minutes. Thanks.

She has only had lymphoscintigraphy which just showed she has lower limb lymphoedema and impaired lymphatics. I have read recently that St. George's in London have received funding to further study primary lymphoedema and they will be using those more detailed scans to identify exactly what is wrong with the lymphatic system. I will ask at our next appointment. Did you find the results of the scan beneficial? Did it change your sons treatment plan?

The leaks are caused due to her lymphatics surrounding her stomach not being able to cope with fat so they become overloaded and leak lymph into her body which eventually exits her body through the wall of her uterus. This is what causes the issue because they can not seal any of the breaks in her uterus or apply pressure through bandages.

My daughter is also underweight and this is also my concern, particularly with the growth and development that occurs at this age. At our last dietitian appointment she mentioned that she should also take walnut oil as a supplement to ensure she gets all the essential fatty acids required. Unfortunately my daughter also has numerous nut allergies so they are looking into alternatives but this may be an option for your son.

Best Wishes