We have had a breakthrough?

[Charlie Arnold]

I am cautiously optimistic that we may be finally getting there. Megs tests from the childrens hospital gave us no answers other than her blood is doing what it should do when she has sucrose so back to the gastroenterologist we go. But we did have a long chat about how much of the sickness and headaches may actually be due to food and how many due to anxiety and learning problems.

As she had been cleared by the bloods as having nothing disastrous I decided to try something that had been sent to me by my stepmother who has used them herself successfully for general digestion. I didn't want to try them until I knew that they weren't going to alter any tests Meg was going to have but decided now it wouldn't do any harm. Basically they are by a british based company called Biocare and are called Polyzyme Forte. They are designed to help those with disaccharide deficiencies to break down polysaccharides in the diet ie lactose, sucrose, and maltose as well as fats. They contain lipase, lactase, maltase, amylase and sucrase. Now I have been convinced for a long time that Meg is low in sucrase so was interested to see what would happen. the best opportunity was while she was on her long summer holiday so we tried them for the last 3 weeks. Within 2 days the gas had significantly decreased ( Megs can out-fart the worst teenage boy!!), she was calmer, she had more energy, she was sleeping better and most significant of all she had 5 dry nights during that time - more than she has ever had in her life. So is that looking positive or is that looking positive. This was on a restricted sugar diet.

So what does one do next. Well one problem is that they are not prescribed so she can't have them at school for dinner unless I turn up every day to give them to her so I decided for the next two weeks to stop them and carry on low sugar diet until we see the doctor on the 17th then take in all the info about them and see what they suggest. Whether they will then consider trialling her on sucrase or give me a letter for the school to say carry on with them we shall have to see. But already with 3 days off them the gas has started again and she is very wet at night again.

If anyone wants to look them up they can be found on the biocare website www.biocare.co.uk but you have to be a practitioner to order them

or just found them on this website which also covers other countries:
www.bodykind.com/search/Polyzyme/product/737-Polyzyme-Forte-Enzyme-Complex-30-Vegicaps.aspx?Referer=Google_biocare%20polyzyme%20forte&device=c&gclid=CMbMoo61t7kCFUXKtAodOWQA8w

[Charlie Arnold]

Sooooo, after a long slog we seem to have an answer..... CSID but possibly also FM.

Having got fed up with waiting I made an extra appointment with the gastroenterologist team and saw the registrar who was very helpful and very proactive. Based on the fact that Meg was so much better on the sucrose free diet and lower starch and using the enzymes he has decided that she does have CSID. There may be a possibility of doing the gene test later this year as they are building up a database in Hamburg at the moment. They could do the biopsies but would have to send them to America although I have since found 2 UK hospitals do them but I don't want to put her through any more tests for now as she has had so many. By careful trial and error we may get the balance right.
As for FM, we need to stick to that diet too as she was so reactive when she was 5 although less so when she was 7 but lets not rock the boat. So I am in the process of building up a list of FM and CSID foods to get a base diet going.
With the enzymes though the bad news is that at the moment, inspite of a letter from the consultant that she needs to take them, the school will not give them to her, so to make sure we give them a really good go I am going to have to go in at lunchtime and give them to her as she goes in to have her lunch...... I ask you............... policies, policies, policies, whatever happened to common sense.

So that is where we are at. It just goes to show, you need to stick to your instincts. I knew FM wasn't the only answer as she was still reacting even on a very strict HFI and FM diet. Starch seemed to be the only extra to look at so we got there in the end. Just back to the drawing board on the meal planner.

[Charlie Arnold]

So, a few weeks on things are still improving. I am trying to get my head around this new diet idea of limiting the starch. I don't think I need to absolutely cut out all starch as I think if she couldn't metabolize any then she would have been much sicker still, but she obviously can't cope with the amount in an every day diet. But coupled with low starch and the pills every day (including me turning up at school lunch time to give them to her) she is still improving. We have had much better energy and two more dry nights....

There are some fruit and veg that overlap so we are going to try those out bit by bit, it seems to be mostly green veg and berries that seem most suitable. Raspberries today. Another thing they use alot is almond flour and coconut flour, which are quite high in sugars so being cautious. Made an almond tart yesterday with almond flour, cream, eggs and butter and it was quite yummy. She liked it but did have an almighty melt-down before school and was an hour late going in due to feeling sick and shouting alot, refusing to get dressed, stomping about and nearly falling down the stairs as she couldn't quite get the dramatic stomp up them right. Now whether that was a food reaction, that monday morning feeling or a reaction to almonds, I don't know. Gave her some more tart this afternoon so we shall see tomorrow..............

Anyway, thought I would update you all, getting there slowly. But quite excited we have finally got on the right road.

Hope all your journeys are heading in the right direction, don't hesitate to contact me if you are stumbling. I am hoping to start building up this site a bit more now I feel I know where we are headed to help others as so many seem to have this multiple disaccharide issue and find FM just isn't the only answer.

All the best

Charlie