Diet during high dosage prednisone treatment for a 10 year old

[Lolly7]

My Daughter has been diagnosed with ITP and is going to be starting a course of high dosage prednisone shortly. Does anybody have any advice on children of a similar age on how they reacted to the steroid treatment, how they coped at school without being isolated due to the side effects and the limitations on certain sports and foods (she is starting a new school at the same time she starts her steroid treatment - bad timing)), and also advice on a suitable diet for duration of the course - I have been advised on a no carb diet. Any advice on lunch box ideas, genereal diet and on any and all side effects would be greatly appreciated!

[LucyD]

I am just coming to the end of a prednisolone treatment and half way through found a book which helped, it's "Coping with prednisone" by Eugenia Zukerman and Julie Ingelfinger, you can get it quite cheaply on Amazon. It's American but quite relevant I thought. They recommend a low (no added) salt and low sugar diet and an exercise regime. I didn't find much help trawling the internet for good advice.

I have struggled with the steroid side effects quite a lot but not everyone does and youngsters are amazingly resilient. Preparation and planning and getting her interested in a new way or preparing meals is a really good idea.

Oh yes, if she likes popcorn, making it in the microwave in a brown paper bag is great (and you don't add salt or syrup to it) but it still tastes good. Google the instructions "microwave popcorn".

Good luck to you both, hopefully it won't be a long course. I started on a max (for me) 60mg dose at the start of October and am now down to 10mg. My platelets went up from 0 to 300 and have stayed there (touch wood).

[Lolly7]

Thanks so much for your response Lucy - this is all very new and rather stressful to us all - thankfully my daughter is a popcorn fiend - loves it - I will investigate how to make it in the microwave - my biggest concern is what to pack her for her school lunches as her specialist has advised on a carb free diet, which is difficult, and a lot of the sites I have visited have given long lists of foods to avoid, dairy products, carbs, sugars, certain fruits etc - which narrows down what I can give her for lunch. She is being started on 40mg a day (she is 10) and weaning down to 30mg, then ultimately 10mg. I am concerned about the side effects, particularly about the gastric pains, nausea etc, and the bloating and mood swings / lethargy etc as she is starting a new school at teh same time that she is startig her treatment - poor timing. I guess we will have to just do our best and hope that the course works!

[LucyD in reply to Lolly7]

I'm afraid I'm not much help as I'm new to this too. I was diagnosed at the start of October last year.

Have you got the leaflets from the ITP Support Association? They do them especially for teenagers and your daughter isn't that far off. The website is

itpsupport.org.uk

Where are you based? You may find some local-ish people you could talk to?

[Lolly7]

We are in South Africa and most of my literature has been gained from the internet and group such as this one. I will try and locate a local support group for our family. Thanks Lucy! (we only found out that she had ITP just before Christmas!)

[LucyD]

You need some answers from the "experienced" ITP'ers. I don't think steroids are a long term solution, but they are a first try option. It seems a bit weird that they didn't put her on them straight away. What are her platelet counts?

[Charlie01Lake]

I cant really help with ade I was 19 when I first went on steroids I was taking 12 a day which is quite a high dosage and I think really it goes on the person on what side effects they have my side effects where I constantly was hungry I would wake up in the night and would be starving I would say that when your child is hungry to try fruit snack or carrot stick that is what I ate I did get a round face what they call moon face and I had a bit of acne come asoon as I stopped the medication all that stopped I would have mood swings when they highed my dose or lowered my dose and I would get hot flushes but I was also pregnant so I had my pregnancy to deal with to I hope your daughter doesn't have much side effects and I hope her itp doesn't get her down I have learnt to live a comfortable life with dealing with my Itp ive had the condition for 6 years now but they said ive had it longer hope I was a little help to u x

[Lolly7]

@ Lucy - her first platelet count was 30 - she was on a hig dosage of Polygam transfusion for 4 days - which did raise her count in protecting the platelets, but as soon as it wore off, her count dropped almost overnight to 40.

@ Charlie - thanks for the message - all input and advise is much appreciated! I mentioned to Chloe about the possibility of her face swelling and she was devastated. I have given her some information to read, and am going to sit with a dietician and try work on a suitable sensible eating plan for her.

[owenm]

If you find the good solid information on how medical professionals treat ITP in children, (there are some good documents on the itp support association site as lucyD said) they often do a wait, watch and monitor system, only treating when absolutely necessary.

A platelet count of 30-40 is reasonable, so please don't panic too much. (I know it's hard)

It is important to be vigilant for bleeding, unexplained bruising and any major trauma.

My advice would be to make sure that exercise/sport is party of a weekly routine, something that stimulates body and mind.

[Lolly7]

Thanks Owen - do you have any dietary suggestions and exercise ideas? I thought swimming or walking would be a good form of exercise?

[owenm]

I would take advice from your doctor/consultant,

but any non contact sport such as swimming, walking, badminton......

I personally keep myself as active as I can.

Most specialists I have chatted to encourage exercise regardless of medical status, it is more important to do anything than nothing at all, has been quoted at me several times.

Dietary suggestions are not my strongpoint, but I cut out sugary drinks, sugar in tea/coffee and biscuits/cakes whilst on steroids. I found that I had no concept of when to stop eating, as I never felt full, so several small meals daily kept me on the sensible side of hungry.

[LucyD]

Owenm - "I found that I had no concept of when to stop eating" - that's interesting! I can eat a big meal and still feel as hungry as when I started, everyone looks at me like I've got 3 heads! On the plus side steroids "can" make you unreasonable and inappropriate so you can tell them to 'shove something where the sun doesn't shine and twizzle' and get away with it! LOL!

Eating small healthy meals more frequently is much better than a few big ones and then snacking. I am always thirsty too, so what to drink is a big issue. Keep off juices (high in sugar), fizzy drinks (ditto), diet fizzy drinks (make you fatter in the long run!), if Chloe (?) is a water drinker that's best.

Did you have any luck with the book?

[Lolly7]

I did find it on the net, but at the moment (single mom of 3) am unable to buy it. I have been doing a lot of research and I have a couple of dietician friends who are going to assist me in working on an eating plan (for the whole family - I don't want her isolated). Our specialist advised to cut out carbs completely, low dairy, low sugar, low fat, no tomatoes / red/purple grapes, anything contaning quinine. She is also to drink bottled water at room temperature. Chloe is already quite a feisty little thing - I am quivering at the thought of the impending mood swings. Will the steroids bring on puberty faster? I have all these questions and her specialist is so hard to get hold of!

She is currently a string bean, and panicked when I told her she might get a bit puffy from the meds. I gave her age appropriate research that I had done, and she is clearer on what to expect, my biggest concern is the gastritis - her specialist has peerscribed the following: 20mg Prednisone BD x 3/52 (i assume this is twice a day for 3 weeks); 15mg BD x 3/7 (for 3 days??); 10mg BD (3/7); 5mg BD x 3/7; 5MG x 1/7; as well as 20MG a day of Losec for 4 weeks which I am told is to try stop her from geting gastric ulcers. I hate the idea of her feeling sick and being in pain whilst starting new school - not fun for her!

PS I have elimuinated ALL junk food from the house and will be filling it with healthy options - to be fair we never ate a lot of junk or had any fizzy drinks - but I am going to stick to recommended foods as much as possible.

[LucyD]

How's it going for Chloe, Lauren?

[Lolly7]

She is PERMANENTLY hungry and her moods change faster than I can keep up with - I just have to keep it in mind that she has little control over both these things. So far only side effects to date! :). it has only been a week of the steroids - but I am hoping that it continues! I have eliminated ALL junk food from the house (not that there ever was much) - got her on a low carb, low fat, low everything diet - Xylitol instead of sugar, soya instead of milk, brown rice - everything in smaller qty's - probably how we should all always be eating anyway. Next BPC 4 Feb - I will keep you posted! My mom is als taking her for body talk - I am still not sure how it works - but my Mom is convinced it will - and I a willing to try anything additional that won't interfere with her meds.

I quote "BodyTalk is an astonishingly simple and effective holistic therapy that allows the body's energy systems to be re-synchronized so they can operate as nature intended. Each system, cell, and atom is in constant communication with each other at all times. Through exposure to the stresses of day-to-day life, however, these lines of communication can become compromised or disconnected, which then leads to a decline in physical, emotional and/or mental well-being. Reconnecting these lines of communication enables the body's internal mechanisms to function at optimal levels, thus repairing and preventing disease while rapidly accelerating the healing process. In this way, BodyTalk stimulates the body's innate ability to balance and heal itself on all levels".

SO, I will definitely keep you posted on how she is faring - her 2nd day of school today, I am hoping that she didn't gnaw through her desk and that she didn't succumb to the tuck shop (or fall asleep at her desk....). I really am so pleased to have found you all on here - it makes such a difference being able to talk to people who understand and have first hand experience of ITP! Thank you all so much fo your support!