Top Ten Helpline Queries to MF
Matthew’s Friends Helpline Top 10
YOU MUST consult your own medical Keto Team before making ANY changes to your child’s treatment, Matthews Friends cannot be held responsible if you do not heed this warning.
Written by Emma Williams CEO/Founder
Updated: February 2010
Since we started back in 2004 we have always had a telephone helpline that has been available 365 days a year and usually 24 hours a day! We have taken a wide range of calls from patients, family members, parents and professionals and they have ranged from the simple queries to the complex. Sometimes the caller has just wanted to chat and share experiences and yes, sometimes to have a good cry as well with someone who understands exactly what you are going through.
From the thousands of calls we have taken, we have compiled a list of our 10 Ten Helpline queries that just keep on cropping up time and time again. It doesn’t matter which country the query comes from either.
Please remember THIS IS NOT MEDICAL ADVICE OR MEDICAL EVIDENCE – do NOT make any changes to your dietary prescription without consultation and discussion with your team. Our aim is always to empower the patients and families to be able to discuss topics WITH their team to try and find the right solution if at all possible.
10. Ingredient & Product Information
We get a lot of questions on how to use prescription products – especially for Liquigen on the MCT version of the diet. A lot of the advice we give you can find on the Dietary Support side of the site as well as The Food Section – which we suggest you visit.
Please also read Dr. Kossoff answers to this question on the FAQ section of the site under Dietary Treatments.
We do have discussions with families about their children hitting puberty and we refer them to the same section as we have suggested to you above.
Following on from Dr. Kossoff’s answers, we have found more of this kind of thing with the Classical kids rather than the MCT ones – although reports have come in from both areas. The classical diet is the most restrictive so it may be that these children don’t need as higher ratio anymore or do need extra calories because of needing to grow – again falling in line with what Dr. Kossoff has observed and suggested.
What HAS worked for some children on the classical is to move to the MCT version of the diet. My own son did this when we hit problems with puberty and it worked like a dream. Other families have done a mixture of half and half or lowered the ratio and added in a little MCT oil to keep ketosis high. So there are options available that you can work through with your team.
Remember that even on medication there could still be problems with seizures during puberty, so puberty is not a reason to come off the diet – especially if it was working well beforehand. It WILL be a question of working through things with your team to try and get things back on balance again.
8. Recipe Ideas/Meal Plans/Dietitians referring families to MF for support & Diet Preparation
We provide a meal plan service for patients and families as well as a diet preparation service working with the dietitian. We will not undertake this UNLESS we have contact with the dietitian.
If your dietitian would like to know more about this, please get him/her to contact me (firstname.lastname@example.org) or telephone the MF helpline number 0788 4054811.
The meal plan service is currently limited to UK families. Coaching can be done for diet preparation for overseas families. We recommend that USA families visit The Charlie Foundation website for appropriate information relevant to their requirements.
7. Adult Enquiries
There has been somewhat of an explosion of these calls over the past couple of years as more and more information comes from America and the use of the Modified Atkins and Low GI Treatment. You will find more information on our website.
We now have an Adult Dietitian at Matthew’s Friends and where possible, we provide funding for adults to try a MAD or LGIT. We will be providing more information on this topic in the future and it is something we are working towards using with more adults in the future.
This will be another huge uphill battle – but one we intend to make.
6. Families wanting a Dietary Treatment for their Child.
These are obviously some of the most heart-breaking of calls we get as the families are so desperate and we STILL get calls now saying that they are requesting the diet for their child but can’t get it for various reasons ranging from no resources available right through to the age old ‘it’s unpalatable’ and ‘drugs are the best option’ even though the child in question has already failed 6!!!!
We can advise which centres are taking referrals from outside the area and where possible, we have provided funding to get a child taken on the diet or we have funded a clinic to increase the numbers of children taken.
We will lobby with the families and try to empower them to ask the right questions and make sure that they get the referral they want and NEED, although sadly some of the waiting lists are long.
As far as the unpalatable myth is concerned – that one is soon dealt with!
In all fairness, we have found over the years that some neurologists have had to refuse patients because of no dietetic resources for the diet even though they WANT to provide the service and indeed are fighting their own PCT’s to get it. We will work with the medical teams to try to put pressure on the PCT’s to provide the necessary funding.
Sadly, we know that The Muir Maxwell Trust and The Daisy Garland Charity have done a fantastic job of providing funding for keto dietitians but when the charity funding stops some of the PCT’s won’t continue the funding and the service is then lost. This is very frustrating for EVERYONE.
Please read the Carnitine Factsheet written by Dr. Elizabeth Neal RD, PhD in the Medical Section of this site.
This has proven an extremely hot topic over the years and still continues to be quite a controversial subject. If you go to the medical section of the Matthew’s Friends website you will see a latest write up on carnitine which has been done by a Dr Elizabeth Neal, our Matthew’s Friends research dieititian. I specifically asked her to look into this subject as there seems to be a lot of conflicting opinions. Families more ‘pro’ using this than perhaps the medics.
As it stands at the moment, medically it is not recommended unless patients are showing signs of having carnitine deficiency and exhibiting the symptoms there of. It is not supplemented routinely.
HOWEVER, there is NO getting away from the fact that many patients have responded well to the use of carnitine even though they have been tested and shown not to be deficient. We have reports of children becoming more active, more responsive, ketones increasing and seizures going down – so long as the dose has been started on small levels and then increased if needed. I have seen this with my own eyes as I used Carnitine with Matthew – but I learned the hard way – I went in with too much to start with and his seizures actually went up – it is only when I started on really small doses and then increased that it helped. However, I never needed to give Matthew very much but I have no doubt that it helped him. Only a couple of weeks ago we had another child whose seizures dropped once carnitine was added to the supplements after every other dietary avenue had been exhausted.
We also know that Epilim (Depakote/Valproate) can have an effect on carnitine levels – so maybe those patients who are starting on the diet and who are taking epilim need to have a supplement of carnitine whether deficient or not?
There is no question that more needs to be looked into as far as this subject is concerned and we continue to discuss this option and collect information for our medical professionals.
Our advice at this time to families falls in line with the recommendations made in the factsheet you have been referred to earlier and we encourage you to take this factsheet along to your keto team in order to discuss matters further with them. The more professionals we have looking at this – the more information we can hopefully gather and share.
4. Diet Stops Working After Positive Start and/or Ketones ‘Disappear’
For some children this appears to happen anywhere from a few weeks to a few months after commencement of the diet.
First step is to go through everything with a fine toothcomb to check that additional carbs are not creeping in somewhere. We also check how food is being prepared and talk through everything with the family to make sure that the recipes are being followed exactly and nothing is getting confused.
If those investigations all come back with nothing untoward the next question we ask is..
What medication is your child currently on as well as the diet?
In 99% of cases the answer comes back to include Sodium Valproate (Epilim/Depakote). This is so common now for us that we can predict what the answer is going to be before we even ask the question. We THINK that there is some knock on effect going on, either by increasing the possible side effects of this drug or the possible interaction between this drug and the diet or the interactions between Epilim, the diet AND any other drugs the patient is on (which can usually include a benzo as well).
Children have improved once again once the Epilim has been brought down, or withdrawn altogether, however, this must be done slowly and carefully and under medical supervision.
We have looked at all the medical evidence currently available and although no answers are apparent this is now becoming too common for us to ignore. We have asked our medical board to look into this and at every medical conference we do, we draw the professionals attention to this ‘common trend’ we appear to be seeing and getting reports of. Hopefully the more we raise the profile of this issue the more professionals will look into it.
If you find that the same has happened to your child then we suggest you discuss this issue with your keto team. UNDER NO CIRCUMSTANCES reduce the medication without medical supervision.
3. Cheats, mishaps and panics
There will be times when something goes wrong, try not to panic!
Have a read of our ‘What Happens if...’ section of the site (under Dietary Support) – this should give you some ideas of what to do until you get a chance to speak to your keto team.
Also always make sure you have a supply of your rescue meds at home – just in case any breakthrough seizures occur and make sure you get back on track straight away.
2. Drug Weaning
We know that one of the main reasons for families desperately wanting to try a diet treatment is because the drugs have simply NOT worked. After all if the drugs had worked – you probably wouldn’t be on the diet in the first place or even able to access the diet. So why keep on giving your child something that didn’t work in the first place?
Some medics are very wary of reducing medication which can be very frustrating for the families and although it is appreciated that the medics are doing what they feel is in the best interests of their patients to reduce their seizures – we usually find that the children who HAVE had their medication reduced can do better on the diet – especially if there are a few medications on board in the first place and it is not only seizure control that can be better, it is also quality of life that can improve dramatically.
There are some children that have the diet and a little bit of medication as well, that is certainly not uncommon but in most cases medications can be reduced and some of them withdrawn altogether.
Drug weaning must at all times be discussed with your neurologist – DO NOT undertake any type of drug wean without medical supervision. We can appreciate that there will be some tough conversations going on in consultation rooms at times as ‘both sides’ can dig their heels in – but remember ‘both sides’ are doing what they feel is best and ‘both sides’ need to work as a TEAM and maybe negotiating a compromise could be the answer.
We follow the advice given by our Medical Board and our medical contributors. Please do not phone Matthew’s Friends asking to reduce your childs medication – we will refer you straight back to your neurologist.
We also receive calls from families in the middle of drug weans, to talk about possible fallout, emotional issues and also the successes of a child getting better and not needing the medication any more – which we love hearing about.
1. Initiation of the Diet
Preparation and the first few weeks of a new diet can be very daunting for families as everyone adjusts and gets used to things and this is where the majority of our calls come from. Hopefully a lot of information from this website will help with those fears and anxieties but usually the helpline rings at teatime and someone has a quick question with their scales in front of them!
So those are our most common telephone helpline queries...we have received many other questions and queries – too many to put on here but hopefully some of the above might help you and let you know that you are not alone. We are always here to help.
HELPLINE NUMBER: +44 (0) 788 4054811
This is a mobile phone number. If your call is not answered straight away then leave a message and someone will call you back or you can text (SMS) us.
The helpline is open over all major holidays – we are available 365 days a year – after all we have to prepare meals for 365 days a year!