Charlie and Megan

[Charlie Arnold]

Next step............. the consultant must have finally read the letter I sent him in ummm ...........May !!! They have booked Meg in for a sucrose breath test, they must be seriously considering CSID then thank goodness. We shalll see, going on the 8th October.

But............. the school have finally (after 4 years of trying to set it up) got the hang of giving Megs a drink of miilk mid afternooon .............. definately helping to keep her fuelled..... Things are moving, albeit very slowly but that seems to be the name of this game, slowly but surely the pieces of the jigsaw fit together and we get a clearer idea of what is going on.

[FMmom]

Is there a difference between the 13C breath test and a sucrose breath test? I'm curious if it is two terms that refer to one thing or if I should be leary of Kaelin's doctor ordering a "sucrose hydrogen breath test". (I want to push for this test, but before I do, I want to make sure that I'm getting the right thing!)

I really, really, really need to join the CSID website you posted somewhere, Charlie, but I just haven't gotten around to it. There are some days that I am convinced beyond doubt that this is what Kaelin has and there are days that I'm just totally discouraged that we'll ever figure out what is going on. Sigh.

Keep us posted -- I hope the test results come faster than the scheduling of the test! Good grief, May!?!?!?!?

[Charlie Arnold]

Quick update here.

Very pleased to be heading off to Great Ormond Street metabolic unit on the 4th April, for those not in england this is one of the top childrens hospitals here. Its not that I didn't like the other one we were with its just they seem to be taking so long to get on with anything.

We have been sticking it out for the last few months of Megan being on "normal" food and there are definately still issues there. I took this step very slowly and cautiously and would recommend anyone deciding to try this does that. The reason for doing it? Well, we were going around in huge circles, getting borderline results for everything and no answers. As the child grows their bodies may tolerate more of the "toxins" and this can confuse the picture. Also they may be able to absorb more of the problem sugar before it builds up a reaction.
But my main reasoning was that maybe she isn't throwing the reactions I would expect just because she wasn't reactive enough. Well, she certainly is now!! Cold, after flu, after stomach bug, after day feeling sick. Low attendance, dragging her into school etc, etc, So now, lets see what they come up with, I am still convinced that her problem is more a sucrose than a fructose problem, watch this space.
Main symptoms she shows, within an hour of having anything high sugar - feels sick, eyes and nose start running, earache, headache, major mood changes to irritability. this all gradually builds up over the next few hours to being sick and wiped out, then off school - again.
For now I have given up work so hoping to have more time to look into all this, and manage her better at home etc. I just couldn't manage keep having to take days off as I am on my own and self employed.
One positive result though which has definately helped me to move forwards is that she has seen an Educational Psychologist. she has struggled for years at school as I have moaned about before and the school don't seem to have any answers so I went ahead and booked a private assessment. Now she went on a good day, was motivated and happy to get on with things which at first I thought - bother, nothing will show up again but after thought it was better as at least we weren't left wondering if she was having an off day. Anyway, she is definately dyslexic but her main problem is her thought processing isn't working properly and is very slow. Now is this due to her metabolic problem or maybe as a result of her birth when she did have to be lightly resuscitated? This is maybe our next conundrum. but at least for now I understand her better, we need to slow down life (not that it was that fast to be honest), this gives her brain time to work stuff out to feel more confident to get on with things. But the biggest improvement now is that I know I am not going mad, there is a learning difficulty and I am not being useless and neurotic. so hopefully onwards......

[Charlie Arnold]

So, we saw a new consultant today and I must say I am quietly optimistic. she was a metabolic specialist at one of the top childrens hospitals in London and seemed to be very proactive which is great. She asked me straight out what I was thinking about and what I wanted from her which was good. Basically they are going to book megs in for a day and challenge her system with sugar and see what the blood and urine are doing. But also they are going to insert a special thing under her skin in her tummy and that will monitor her blood sugar over five days and I have to keep a diary and challenge her system and they can then see what she is doing during the day and night and after exercise and certain foods without having to keep taking blood. What a brilliant idea. we will have to wait about 5 weeks for the appointment but really feel like this could give us some sensible ideas.

[answersforerin]

Hi Charlie,
Sorry it has taken me so long to get over here from the HFI Board. It sounds like you are cautiously optimistic. I have been thinking of you and Megs often. We are at the base of the elimination and still having problems. We had tried to start reintroducing food and that has been a nightmare. I am interested in hearing more about the thing they are putting under Megs skin.
Sherry, Erin's Mom (Answers for Erin and HFI Board)

[Charlie Arnold]

Basically it is a continuous glucose monitor, I think it is a small chip and it basically monitors the blood sugar continually over a period of time day and night which makes so much sense for a kid who seems to yo yo and potentially is having blood sugar problems at any given moment but doesn't like needles. I think they are fairly new but being used more and more.

I will let you know more when we go for our appointment but feeling really hopeful that it may help explain how Meg is feeling say before school when she is screaming and shouting she doesn't want to go to school and feeling sick...........

Modern technology eh ...........

[Charlie Arnold]

Well, we have had the tests at GOSH and they have drawn a negative for a metabolic problem, because when loaded up with sucrose her blood reacted the way it should and no sugars showed up in the urine. However, things still aren't right.
They didn't do the glucose monitor, I don't know why, I meant to ask but forgot as Meg wasn't in a very good mood yesterday so didn't want to be in the room too long, but as Meg is very anti the idea and I'm not sure what it would achieve then it isn't worth putting her through the stress of having a "foreign object" in her for 5 days.
I think we go back to the drawing board slightly, she isn't nearly as ill as she used to be on sugars so we need to find a workable balance of diet that helps. She did have alot of days off sick when she was on a "normal" diet and alot of gas and high urine output so there are still things going on that a finer balance of diet may help. So I will start taking things out again, lower the sugar volume and see what happens. The specialist did agree with me about the possible link with nausea and headaches and a "behavioural" problem so is going to help push for the child pychiatrist to see us again. The more I look into it the more I feel there is an element of Aspergers going on, coupled with dyslexia and slow thought processing may mean her brain just can't always keep up causing the blanking out, the nausea etc. I have learnt that slow, routine life is better, let the situations come to her and let her take everything in is better. But also the more sugar she has the worse her behaviour gets and her stress levels.
Anyway, we are due to see the gastroenterologist in the middle of September so we will see what else they say but one thing is for certain, she is fed up with hospital tests and I am fed up with going round in circles so maybe we just need to use our instincts a bit here, she doesn't have a life threatening condition, she has something that makes her body not quite right and we just have to carefully eliminate and fiddle until we find what suits. She is growing fine, she looks well to the outside eye, but something isn't quite right. Is it her brain function due to her birth difficulties, her anxieties due to ASD or an unknown sugar absorption problem.

Time to take another step out of the box and think a bit more.

[Charlie Arnold]

So, where are we, well back to the drawing board basically. As Megan was clear in all her bloods I decided to try a medication called Polyzme Forte that my stepmother had sent us ages ago. I was reluctant until we knew where we were incase it complicated things but I decided it was time to try them. Basically I was interested as they are recommended for disaccharide deficiency which is where I was thinking we may end up with Meg. It contains lactase, lipase, maltase and most importantly for us, sucrase as well as a few other things. Well within a few days of using it with lunch and supper I noticed Megs gas levels had considerably decreased and she seemed generally calmer and better energy. If I forgot to give her one she was passing wind within an hour of the measl....... She also had 5 dry nights, not consecutively, but more than she has ever had in her life........ so that kind of suggests I am on the right track. The problem is they are not on prescription so she can't take them into school so after 3 weeks on them I stopped them for the last 2 weeks and the gas was back, the urine flooding was more noticeable. The stress levels can't be measured really as she doesn't like school anyway.

So anyway, we saw the gastroenterologist last week and I told him about my experiment so he is having a think that maybe it is CSID. In the meantime he said try a sucrose free diet so that means I am back poring over databases for information on that. She has had a week nearly of sucrose free and low starch but it is quite hard to do so I hope he gets on with it. I did ask if we could just do a prescription trial to see as I really don't want her to have an endoscopy unless absolutely necessary.

[kate]

You're probably aware but Sucrase is licensed for 2 week therapeutic trials. The info is on the csidinfo site somewhere if you need to provide it to your doctor. Also, have you come across the csidcares website. It is really informative and has a good food database that you can use to search sugar contents. I've been using it a lot lately as it gives fructose too. There's a book called "A place to start without sugar and starch" that a lot of people on the csid facebook page recommend. You can get it on amazon. I'm glad you seem to be getting somewhere with Megan. I've asked the doctors to consider a Sucrase trial with Emma too as she can't do starches either. I've also joined the Facebook page "CSID Parents and Patients" which is really informative.

[Charlie Arnold]

Hi Kate, I had a feling it was. Found a paper by prof cox in Cambridge about it. Will keep pushing. Yes that Csidcares site is really good, came across it last week from the yahoo group on csid. I just wish the NHS wheels didn't turn so slowly........ I do wonder if these kids maybe have a general disaccharide deficiency which in combination with fructose mal leave their bowels very irritated but not enough to set off all the radars. I am really reluctant to put Meg through an endoscopy and biopsies, but is that the only way to know what is happening to her intestines.

[Charlie Arnold]

Oh gawd, I had forgotten how complicated these restricted diets are when you first change over........ Trouble is I still dont know if she has FM as well or that was a red herring at the end of the day. I can do lactose free dairy thanks to Arla, I can do sucrose free but to do starch free or low as well to get a true picture as well as fructose free as me stumped at the mo. my tables covered in print outs, web site addresses......... Hey ho.......