Charlie and Megan

[Charlie Arnold]

My name is Charlie and I have a daughter called Megan who is now rapidly heading to the grand old age of 9 years old. She is a delightful kid who has had to put up with alot of ill health and it took a long time to get answers as this condition is relatively unknown in the UK. We live in Sussex.

Her symptoms started when she was being weaned at 4 months and led me into a nightmare time over several years while they worked out what was wrong. She went from the perfect baby ( and me a smug first time mother ) to a screaming, projectile vomiting, bloated, sleepless wreck. She had vile diarrhea that used to burn her. At first they thought it was dairy, then wheat, then a bacterial infection then they finally mentioned fructose or sugar. However it took until I had had enough when she was just due to start school to get a proper diagnosis. She was still being sick, hyper then hypo, incontinent alot of the time and not sleeping well so I decided to do an elimination diet on her and put her on chicken and rice for four days. Then I gradually added foods over weeks and as soon as fruit or vegetables were added the diarrhea started again, the bloated tummy and the pains.

Finally we were referred to a gastroenterologist who performed the hydrogen breath test and she blew the graph at 124 after 1 hour! Oh whoops they said, and confirmed a fructose problem. They also did blood tests to check her liver function to exclude Hereditory Fructose Intolerance and put her on a complete fructose exclusion diet. Luckily I had found very useful websites with advice on this as our dietitian has only ever dealt with one other case and used alot of common sense and gradually over time things have improved.

The biggest problem is that kids can have several problems going on so she has had to have other tests so it takes a long time to eliminate one thing before moving onto the next. Alot of her symptoms didn't match their description of fructose malabsorbtion but now we are getting to know more about it we are slowly getting more answers.

She still cannot sleep properly and has melatonin to get to sleep (otherwise she is still wired at 11pm ). then of course she can't get going in the mornings, she is still very wet every night. She has alot of difficulty concentrating and low energy levels and does blank out alot so we are still waiting (patiently) for answers on epilepsy and ADHD / ADD.

Recently they have put her on the FODMAP diet and that is what has made me start this board as suddenly they say she is allowed table sugar, certain fruits and vegetables. As a mother who has religiously followed a complete fructose exclusion diet you can imagine my initial horror . We are only a month into it and I can see the irritability and screaming fits starting but no diarrhea yet. This is why I have started this board as our dietitian doesn't know anything about it and all I have is a printed list of foods. Suffice it to say - the jury is still out. I hope the diet works as if I have to stop it again I will have a huge battle on my hands. When she was first diagnosed she was young enough for me to control her food access.

[cheslincoln]

Hi,
I'm Megan's nanna so I have nothing intelligent to add! I've joined the board so I can try to keep up with information and developments - obviously I have a vested interest in Megan's health and development but also I try to get the catering right for visits. With Christmas coming up I'm hoping we can get a decent festive dinner together for Megs.

Ches

[Charlie Arnold]

Sorry guys, seem to have run out of momentum recently, been very up and down and in battle with the school so didn't have the energy to add anything new here although got lots of ideas buzzing around in my head.

Anyway, good news, we went to see the gastro consultant today and I went armed with everything typed so I didn't have to go through it all with Meg listening and asked if we have absolutely ruled out HFI and if not that I had found out that they do the gene test at a hospital in Cambridge, England and he has filled in the forms so that we can get that done.
Whooopeeeee ;D

So step 1 here we come. It still may be negative but it is the easiest first step so will see what it comes up with. I mentioned you guys to him and that all our kids have very similar problems and all seem to have had the same negative tests so far so if your ears were burning that was why.

Step 2, get the blood taken, that is going to take some skill. I may enlist a clever friend as last time they took blood a play nurse helped and distracted her very well so she didn't scream the place down........

Do I want it to be positive? To be honest yes as I know she quite obviously has a fructose problem and is very reactive so it is a clear diagnosis then as I have had enough of guesswork, and its a sorted diet for life and careful management. It will also then mean we can get on with addressing other problems properly.

For now I am going back to the drawing board for the diet, take out all fruit and veg but keep in very limited things like tomato puree occasionally and occasional sugar as a treat for now. See what that does and then take her off everything again if still issues (which there will be if HFI) but at least it means for now she still gets occasional treats.

One thing I have always kept her on is potatoes so maybe for now I might cut those out too as an experiment, maybe it just tips her over the edge as even on a "fructose free" diet she still had days when she felt sick.

I do think she has more energy off fructans too ie wheat but trying to cut that out is very difficult as she really doesn't like the gluten free breads, and they all have sugar in them so maybe just very limited wheat will do.

[Charlie Arnold]

One other thing this appointment has taught me is to go with everything typed before you go so you are thinking clearly and to draw up a time line of symptoms and tests as things do start to blend into one after a while. And put all reports in a file as its amazing how many they lose track of.

It doesn't half make things alot clearer in your head and saves alot of waffle in front of a bored child.

[FMmom]

So as I was writing out my latest saga with Kaelin, you were typing out your latest comment -- and it seems we've come to the same conclusion...

All things considered, I'd actually like Kaelin's genetic test to come back with two mutations. I want a clear answer, something concrete. Taking away all sugar has been so good for Kaelin -- it might not be the reason she's gaining weight, but it always causes her to lose weight, so at least we're no longer re-putting on that same pound!

I've mentioned before that I believe Kaelin has a problem with salicylates. However, when I read through the HFI diet (and read through comments on the HFI board) I find those same foods listed. So maybe it's not salicylates after all. Mushrooms are quite high in salicylates, but fine for HFI and Kaelin has no problem with them. So I think there are some areas where we could diagnose through symptoms -- but she has so many things that overlap, I doubt any doctor would diagnose based on her diet. I'd like confirmation one way or another.

Kaelin has one CF mutation. Some doctors think there is enough there to treat her, erring on the side of caution. A couple of other Pulmonologists were fairly adamant that she is simply a carrier. I hate the constant tug of war about whether to treat preventively or not.

So I'm dreading the idea that no or one HFI mutation doesn't rule this out -- so continue with the diet or ease up some, that is the question. It's working for now, so I'll just go with it for as long as it does. But I'd like a solid answer!

Typed notes -- nice! I've always carried notebooks around with all of my observations, but I'd often forget either the notebook or I'd just forget to read all my notes. Idiot. Now I have a medical app on my iPad where I can record her entire medical history (tests, dates, results; weight checks; medications...) There's a place where I can list upcoming appointments and note any questions or observations. So very handy -- it's so nice leaving an appointment feeling like you've covered everything you needed to say...

Ooooh, sorry to hear Meg has such a hard time with blood tests -- and for these kids, no lollies to make it all better! Glad to hear she's able to get the genetic test. I hope you get the answer you're looking for...

[Charlie Arnold]

It sounds like we both wait with baited breath then. That's great to hear kaelin is improving off sugar, is she coping ok with it. There is a website selling stuff that is fructose free, I visited it a long time ago and some of their stuff looked good so will try and find it again, may give us some treat options. Meg is definately more erratic on sugar so cutting down again gradually, going to cut out all fruit and veg straight away to see if that helps the gassiness then I can see what extra the sugar is doing to her. Will post this in ingredients but I wonder if potatoes are the last missing link.

Blood tests are a nightmare ever since they took blood once without the numbing cream, she coped ok that day but was a nightmare after that and every other time. Last time we went they lined up a play nurse who was fantastic, we went to the hospital for a visit and she played with a teddy and took his blood several times, Then on the morning of the blood test we went early with the cream already on, played with the bear, chose a book to look at and the nurse came in with us and she didn't even notice the needle going in so I'm hoping we can do the same again. She has to have an ECG too but hopefully she won't find that too bad as she is fine with the EEG's.

I feel like we are getting there, slowly, just the school to tackle next. I need to spend the easter holidays when they have 2 weeks off sorting her diet out and then see what we are left with. As they are taking blood anyway I will ask the gp to maybe do a general screen test too and test for mineral balance and electrolytes at the same time, and anything else he can think of so we don't have to do it again.......

The other idea I had for clarification is to draw up a timeline as this has been dragging on for so long, I'll get lots of post-its and write on what tests and when, bad symptoms and good times as I must admit it is all starting to blending into one and you forget things, only to remember them later. I remembered after a friend posted about his kid having a forgotten head injury and learning difficulties that Meg fell head over heels all down a wooden staircase when she was about 2, I didn't take her to A & E as she seemed ok once she had stopped crying and didn't lose conciousness, maybe something did happen and that is why she has learning difficulties..... who knows, but I had completely forgotten about it so it all needs typing up to try and make sense a bit more.

[Charlie Arnold]

Update: Had the blood taken for the gene test, we now wait about 6 weeks I think for results. Taking the blood went perfectly, managed to set it up just right and she didn't even notice they had taken it again, phew, and yet another fluffy toy later as a reward...... I think I've almost exhausted the hospitals supply of soft toys now, she likes the keel ones and at £8 a toy it gets a bit expensive, but as you said, we can't bribe with lollies.

Now for the hard bit, cutting back on the diet. Now easter is out of the way, all sugar is out again. I have already noticed she is less gassy since stopping the veg and fruit, so there's a positive unfortunately. Early days for sugar.

I thought I had managed to find a safe sugar free chocolate, a diabetic one but that really upset her tummy, mind you she did sneak alot more than I knew...... They used to sweeten with maltitol which I know can cause gut rot but they have changed that, mind you they did list inulins which is obviously out for FM so maybe that is the problem. Maybe a little nibble occasionally instead. But a little nibble and chocolate don't go in the same sentence for Megs!!!

Seeing the general paed and family link worker and school nurse this week so hoping things will all start to move now. Armed with typed notes........

Using careful routines for bed and getting to school, lots of deep breath and patience......... my next aim is to get her dry at night as I think that will help her confidence for going out more...... Plus bed nappies are very expensive....

How is everyone else getting on?

[Charlie Arnold]

:-

The Hospital have LOST Megs blood sample for the gene test, so we've got to start all over again, + patiently waiting for 40 days was a waste of time!!!!!!!!!

So now we have to do it all again............................

On a good note, change of diet helping still, I think she is sleeping better as she is so different in the mornings getting ready for school. Even on tired days we don't have the meltdowns that we used to. And she says she can concentrate better.

I do wonder if it is the change to Lactaid milk as we have done the strict HFI diet before but I have also decreased the potatoes. The only way to know is maybe to reintroduce milk again at some stage but for now, to be honest as things are going well I am quite happy to stick with what we have. ......

And wait...............................

Again.................................

[FMmom]

Egads, how frustrating! It's great to hear that Meg is responding well to the HFI diet, but it would be nice to have verification.

As long as they are doing a blood draw for HFI testing, can they do CSID at the same time (erm, is there even a genetic test for CSID?) Or do they only do one at a time, waiting for the results before looking for something else? (Because there's nothing a mom loves more than waiting two months, then scheduling another blood draw, waiting two months, scheduling another blood draw...)

I'm jealous of your mornings... Kaelin is cheerful in the mornings, but obnoxious and hyper until she has a proper breakfast. And she's doing everything in her power to avoid eating that breakfast and I have no idea why. Eggs, cheese and milk -- there shouldn't be anything that hurts. Good grief, maybe I need to up the lactaid tablets again. (I just gave her THREE tablets for half a glass of milk and she's still burping! Sigh.)

Since things are going well, do you sense that Meg has HFI or do your instincts point in a different direction? Sorry you are starting over again!

[Charlie Arnold]

From what I can see the lab do HFI but not CSID according to their website. Trying to get hold of gastro doc incase they things straight to him and if I speak to them may ask if they got my info on CSID and is it worth considering. Not sure if they do gene test in England anywhere, can't find a site about it yet, but came across Cambridge by accident so you never know, a bit of careful googling.......

Edit: just found another site about CSID and they seem to imply there is no approved genetic test yet:

www.sucraid.net/for-patients-f-a-q#faq3

As for instincts, I do lean more to CSID as I have decreased the starches and the lactose and she had been on HFI diet (except for potatoes) for 3 years before and not such a big difference as now.

Meg just has bacon and sausage for breakfast and occasionally an egg too, if Kaelin will have that then that would decrease need for Lactaid tablets. she just has 2 rashers of bacon (unsmoked and not too much added in way of other ingredients) and proper butchers sausages. Seems to keep her going for quite a while.

[Charlie Arnold]

It's OK, not lost, just sent results to the specialist who asked for the test rather than the hospital that took the blood. Had hoped, once I had calmed down, that that was what had happened and they just hadn't cross-referenced.

Lucky I rang back about it though, as spoke to secretary on Thursday about it, when I rang back today I discovered she had retired on Friday........ obviously hadn't passed message on. So lucky I didn't drag the poor child back for more bloodsucking straight away...... Can't tell me results over the phone....... so still waiting........ but more calmly................

Oh, and the results were sent on the 4th May!!!!!!!

[Charlie Arnold]

Hi Everyone,

sorry, run out of momentum and energy at the moment, but gradually getting back on track.

Finally got gene test results, no mutations detected but doesn't rule HFI out still says the report so back to the drawing board, got appointment in London next month so will see what else they say there.

Had another 2 food reactions both quite bad by her sneaking foods over the past month so definately very sensative still which makes me think more than FM or very severe FM.

We had a big meeting at the school which I was very grateful for as apparently they are hard to get, basically everyone involved in the childs care is supposed to come or send information for it so we all start to work together. Her pediatrician did come which was good but basically the info there was she has a problem with fructose but her diet should be enough to sustain her through the day, but it isn't so school have been told they must give her milk half way through the afternoon session to see if that helps - they will try it for 2 weeks and see what happens.
School will support her a bit differently with her writing as that is still a major hurdle for her, apparently she is full of ideas then won't put them down on paper without alot of coersion, but does that mean she has run out of brain fuel doing the thinking or she has a learning problem affecting her writing completely separate issue?? Don't know they said.............

But did lay it on the line, I have a child who is tall, beautiful and glowing and some days on the ball and delightful, other days is exhausted, pale and very irritatable and I don't know what is causing it, she is also at 9 1/2 years old very wet every night, the medication to stop that hasn't worked and I have to sedate her to get her to sleep. Oh yes, and every so often she passes out.......................... Something ain't right, I can cope with one of two things on the list but the whole shebang is just a bit too much.......................




Other than that, we just plod on................. planning a few more recipes at the moment so will get on with posting those soon but could do with some more ideas from you guys too.

[FMmom]

Wow, when the doctor wanted you to come in for the test results, I was sure that it would be positive for HFI. Why not just tell you over the phone that Meg didn't need to follow that restrictive diet? On the flip side, I wondered why they didn't just tell you that she did have it and make sure that she follow the diet to the absolute degree... Either way, it seems maddening that you had to wait a couple of weeks to get the information you needed. Ugh.

Kaelin has been sneaking some food as well. I see a definite spike in behavioral problems, but I don't think her health suffers (mine does!), at least in the obvious ways that Megan's does. The unseen, long term effects are another matter... Kaelin's "blanking out" moments never seemed all that serious, more like breakdowns in concentration than seizures. I wish I had some advice for what Megan is going through, but I haven't seen anything like that from Kaelin. At least, nothing that I know of -- I think there are a few things that Kaelin keeps hidden.

Kaelin is still pushing away rice and complaining of stomach pains. She still goes completely berserk when she eats sugar (or is it some other ingredients? I have no way of knowing...) Sigh.

Kaelin also has some struggles in school and I ask the same question about whether it's related to food or is there some separate condition that could explain it.

I hope you London appointment offers some clarification.

[Charlie Arnold]

The main problem with the gene test is that it only picks up 85% of mutations so isn't absolutely negative but is the easiest first step.

[catherine]

Hi Charlie

You may want to look in the Buzzy Bee, for blood draws.

Many of the children on the Crohn's forum use them and are happy with the results, these kids are having 2 weekly blood draws.

Buzzy® for Pain Relief

Catherine