Yay - Answers

[charlie]

Have seen Megs gastro department again today, I requested the appointment as still major problems with the schools attitude and needed more concrete answers and I think we got them. We have been trialling sucrose and fructose free and low starch alongside using a special enzyme supplement that a family member came across that helps break down the sucrose and starches as well as having a probiotic element to it. Over christmas we really tried hard to stick to the diet but also for Meg to have the enzyme with every meal, she was much less gassy, much better energy, more focused and on the ball and just generally happier. Yes, ok she is now 11 so more mature but I am certain the diet changes were mainly the answer. Then she has been back at school this week and I haven't been able to give her the enzymes at lunchtime but still stuck to the diet and she has reported she has felt much gassier and fuzzy headed in the afternoons again. (she can't have them at school as they aren't prescribed .......) She is sleeping better, more awake in the mornings. Yay.
Sooooo, armed with this I managed to get an earlier appointment than May with the gastro as she has a residential trip coming up in March so need to plan. told them about the improvements and we discussed the pills and they have decided must definately have sucrase isomaltase defiency. We don't want to put her through the endoscopy and bowel biopsies that is one way of diagnosing but there may be a chance of doing the gene test, he is still communicating with Hamburg on that one. In the meantime they are writing a very specific letter to the school stating the diagnosis, that it is rare and they don't know much about it but she needs to stick to the diet and have the enzymes so finally I feel I can forge on with this.
They still don't know about whether she does have the fructose malabsorption too but for now we have decided to keep off it just in case as she is doing so well on this regime why rock the boat. The biggest problem is starch as we don't know if there is enough enzyme in the supplement to break it all down so I will have to experiment bit by bit with quantities and keep yet another diary.

But to those parents still floundering, I have floundered for the past 10 years, and by careful trial and error and pushing for answers we have got there and my child that was projectile vomiting for hours, passing out, had vile diarrhea and no energy is now tall, beautiful and can have an enjoyable energetic day as long as she sticks to the diet. And by carefully designing her treats and pudding as she doesn't have the natural aversion to sugar she doesn't feel like she is missing out ( see my chocolate solution). So stick with it, there is a solution out there and hopefully you will get there quicker through ours and others experience and when you get it it is such a relief.

Now, back to the recipe books.........

[lucky]

Charlie,

I am beyond thrilled for you and Meg.
BRAVO for being the exceptional mom you are, and for listening to what your instincts were telling you along the way. Something was very wrong with Meg's health long term, and simple medical (FM or more restricted HFI) answers were not enough to correct it fully.

As parents, our job is to be our childrens' greatest advocate on anything that affects them, whether health, education, or social. Some issues are easier to resolve, others... wrought with chaos, uncertainty, self doubt and unfortunately, even danger.

But... like you... when you listen very carefully to your child's ongoing symptoms, meticulously try and identify patterns, work with doctors and a community of others who have been down a similar (but perhaps not exact) road of discovery... there is hope. And for you today... much success. BRAVO.

Through the years (on this HFI board and the FM board) I know of your journey for answers for Meg. The two of you have been through more than most can imagine, and unfortunately, discounted (as "less" severe) often.

** The lesson here is that a mother's love knows no bounds.**

And as such, forever, Meg will be thankful...
Your journey (with all it's bumps, bruises and frustrations) will be a beacon of hope for those new or still wrapped in ongoing chaos.

A healthy child is a child in harmony.
A child in ongoing chaos still has much story left to be discovered.

So congrats for Meg's CSID diagnosis.

Heartfelt good wishes for her healing further, and to slowly/steadily catching up on all other aspects that may have also been touched during all of this. I'm confident that with this new CSID diagnosis (and soon to follow proper treatment protocol), and your continuing love, she will forever shine even more than she already does.

Every mother has the most beautiful / precious child in the world.
...and so it should be.

((HUGS)) to you.
You never gave up.
You are awesome.

Best,
Lucky

[Tammy]

Dancing around in circles and yelling Yeah! Yeah! Yeah for Charlie and Megs!!!!

[charlie]

Thank you every one, have been yo yoing between positive, best foot forward and exhaustion catching up with me.....

Have now got sheets and sheets of lists of foods to compare. Annoyingly my computer and printer have fallen out so I am having to do it all by old fashioned pen and paper. My biggest stumbling block is the low starch. So I am busy emailing America to see if the enzymes I have found have sufficient starch enzymes.So back to the drawing board to move forwards again.
Thank you everyone on this board though for your support, advise, ideas and laughs. Without all of you I wouldn't be nearly as sane as I am, and certainly wouldn't have come across this answer. My daughter would probably be alot more ill and I would be alot more stressed.
And as for the little lady herself I cannot praise her enough through this, no matter how rough she has felt she has always smiled, worked with me so maturely on the diet. I wish I had half of her self control. She has learnt how to cope with not tucking in like everyone else quietly and sensibly. I am very blessed to have such a beautiful daughter and hopefully now we can just get on with enjoying life and enjoying life together as mother and daughter.

So I am now changing my signature at last to a clear label but sorry guys, I will be sticking around, I will miss your company too much.....

[charlie]

Oh boy, oh boy, oh boy...... And so the merry go round goes on. We had our Team around the Child meeting today at the school which all the professionals are supposed to contribute to...... Told the school about the positive diagnosis of CSID, what it was and the symptoms and how it affects her. That the enzyme supplements work and the CONSULTANT has said she must have them with every meal and named them in a letter. But no...... The school cannot give them to her themselves as they are not prescription drugs........ So I have to go in at lunchtime and give them to her.... Well, at the moment I still go 4 days a week to deliver a hot meal so that she has a decent meal to eat as they won't/ sorry - can't heat it up themselves in a microwave due to health and safety regulations but it means I have to time it exactly for when she is about to eat it as they have to be taken with the food.
But it was great to be able to sit at that meeting and tell her headteacher that she has a diagnosis and this is the effect it has on her, and the fact that then the teacher popped in and chirped how much better she has been, more engaged and improving....... So, nothing wrong medically with her then...... (see my purple and green spots post in the summer). I now feel much more empowered to say I expect X Y and Z to be done to help her as now I know there is a reason for it.
I am looking into metabolic epilepsy as that is something the consultant mentioned as a possibility a few years ago and it may well explain the blanking out she gets due to imbalance of hydrogen ions and acid levels in the blood when she eats what she shouldn't.

Thank god she leaves there in July.............

So onwards we plod, getting the hang of the diet. Have made a set week menu plan to stick to for the moment so I can chart good and bad days and time of the day and gradually trying the lowest starch possible. Have emailed America about enzyme levels etc. And clearing out the cupboards. Tell you what, lower starch is doing wonders for my weight loss programme.....