Daughter's health

[October]

Quick update: daughter has coeliac disease, and has a lot of pain, and so has a home tutor.  School and ed authority persist with threats about prosecuting me for this, and talk of 'taking a hard line' from September.

Latest news today is that daughter also has Hashimoto's thyroiditis, which is another auto immune condition, and which explains somewhat the tiredness and exhaustion.  No problem with the HT itself; I can cope with that (I hope).  What I can't cope with so easily is the possibility that the more we investigate, the more auto immune conditions we are going to find to deal with.  It is important to know, but I am afraid to find out.

Meanwhile, I am getting very angry, which should help for the next meeting with the school next week.  It is not their fault that she is unwell.  It is their fault that neither she nor I are being appropriately supported through this.  I am going to keep this anger, and use it to do some venting in their direction.  Should hear from a lawyer tomorrow, too.  Collecting a whirlwind of evidence of disability discrimination behaviour to unleash upon the unsuspecting souls at the ed authority.

I really am not up to this.  But I am d*mned if I am letting them find that out.      

Sometimes it helps to have N parents.  I have put up with a lot from them over the years, but I won't put up with it from anyone else.  

[Plucky]

Wow October!  This is a lot to deal with.  Thank goodness your daughter has you to advocate for her.

I have no idea what advice to give you , not that you need any.  I would just say be firm and determined.  I am not sure getting mad is the solution.  That might be accompanied by loss of 100% rationality and you need to maintain control and not give anyone a reason to question your judgement.

They are wrong and you are right. Just treat them as very dim folk who need a thing to be explained over and over and over, more and more slowly, until they get it.
Plucky

[phillip]

October-I have a book right here called "Gut Solutions" by Brenda Watson and Leonard Smith.  There are several pages on celiac Disease.  I would assume that you know that your daughter can have no products with glutin.  There are many products other than baked goods that contain glutin.  Also, because of the irritation to the intestines, dairy products are probably compounding the situation.  According to this reference, this condition is initially caused by the body 's low production of stomach acids.  It is also now estimated that 1 out of 33 Americans have at least some form of Celiac Disease.  This is much more common than was originally estimated.  It seems we all have reactions to glutin, which is a protein.  I personally believe that you can control this condition by controlling your daughter's diet.  Do not expect too much help from the medical profession.  You would be better off consulting with a registered nutritionist.  Bottom line, some of the things your daughter has been eating are like poison to her body.  Get her on a natural diet.  No dairy, no sugars, no breads, no convenience foods.  Then look at the results.  I am not saying it is easy.  The condition if left untreated can cause multiple areas of malabsorption of crucial nutrients, and lead to further deterioration of the immune system and overall health.  I believe that the change of diet is the shortest distance between the two points.  I am a Culinary Institute of America Graduate, and worked as a Dietary Manager(certified) for a number of years at hospitals, retirement homes, and drug alcohol rehab.  I have seen the results that a pure diet can render.  M.D.s have scant training in this.  They get their training in treatment, not prevention, not in nutrition.  Hope any of this helps.

[Wispery]

Hello everyone! Sorry I haven't been around too much. But what Phillip says is true. I have an illness, and without his expertise, knowledge and natural insight, I would not be where I am today. Now I know what I can eat and what I can't. Not only that, he's like the Soup Nazi. No soup for you!! Just kidding, he is responsible (as well as my niece) for kicking my rear into gear and convincing me to try the supplements and the changes to my diet. I also just had major surgery, and almost died. It had been many years since my first surgery and I had a lot of scar tissue built up in my intestine for so long, that it had to come out. My body wanted that part of it out. But I know what a difference this new diet and lifestyle change has meant for me. Teaching me self control, over my weaknesses. All the foods that were bad for me, I craved and gave into that craving until I was always stricken with attacks.

The moment I began the regiment that Phillip recommended, all of my symptoms stopped, for the first time in three years. I went for three months completely symptom free, that is, until the major attack suddenly happened, and it was my body getting rid of all the prior damage.

I am lucky to be alive, I thank the forces that be that permitted it, because now I live symptom free.

Because of what Phillip did for me!

(ty so much)

[phillip]

Most of what I learned about natural dietary habits came from my daughter.  She is a natural dietary medicine woman.  She spent time in southern Ohio identifying, growing and actually preparing tinctures of herbal remedies.  She actually scolded me over the phone, and gave me instructions of books to read, supplements to buy, and what foods to prepare for Wispery to help her Crohn's condition.  My daughter now works as a manager at a organic food store in the nutrition section.  She gets all the credit, and since she is a Scorpio, I dare not ignor her.  lol

[Wispery]

lol

[October]

Wow October!  This is a lot to deal with.  Thank goodness your daughter has you to advocate for her.

Thanks, Plucky.  It feels like a lot to deal with, certainly.  I am kind of up and down with it at present.  One moment I think I can conquer the world for her, the next I just want to crawl back to bed.  

I have no idea what advice to give you , not that you need any.  I would just say be firm and determined.  I am not sure getting mad is the solution.  That might be accompanied by loss of 100% rationality and you need to maintain control and not give anyone a reason to question your judgement.

You are right, but don't worry about me breaking windows.  The more riled up I get inside, the cooler and calmer I appear on the outside.  I didn't live in a dysfunctional family without learning never to let 'them' know just exactly what I am thinking.  When I start to call people 'sir' they really need to get worried!!!!!    I need the anger to stop me being frightened of these people, but they won't get me to lose my temper.  It takes a lot to do that, and in relation to my daughter I don't think they could ever manage it.

They are wrong and you are right. Just treat them as very dim folk who need a thing to be explained over and over and over, more and more slowly, until they get it.
Plucky

That is a good image.     Thanks, Plucky.

I have had problems with the lawyer this morning.  He is from a local firm, and I suspect has a vested interest in maintaining good relations with the LEA; maybe he even works for them.  It sounded like it.  He told me that the problems I have had are 'administrative problems' without even knowing what they are, and I asked if that is a defence in law.  He didn't answer that one.  I said that the Disability Law Service said I have a good case for Disability Discrimination and he said that that is new legislation, and remains unproven.  (The act is 10 years old!!)  So I said I didn't think he was the right person, even if he wanted to represent us, which he clearly didn't.

So instead I have emailed a Barrister friend of mine, and asked if she can help me find a legal representative.  I don't think the US has Barristers.  They are a level of lawyer that can only be retained by lawyers, and who represent clients in the higher courts, wearing wigs and gowns.  Barmy system.    

[October]

Get her on a natural diet.  No dairy, no sugars, no breads, no convenience foods.  Then look at the results.  I am not saying it is easy.  The condition if left untreated can cause multiple areas of malabsorption of crucial nutrients, and lead to further deterioration of the immune system and overall health.  I believe that the change of diet is the shortest distance between the two points.  I am a Culinary Institute of America Graduate, and worked as a Dietary Manager(certified) for a number of years at hospitals, retirement homes, and drug alcohol rehab.  I have seen the results that a pure diet can render.  M.D.s have scant training in this.  They get their training in treatment, not prevention, not in nutrition.  Hope any of this helps.

Hmm.  Well, some of that I can do easily.  But some things she will not like cutting out.  

I will try to get hold of the book you mentioned.  We have a dietician at the hospital, but the aim so far has been to eliminate gluten, rather than anything else.  Still lots of sugar, dairy and processed stuff.  And I was told to increase the dairy intake because of the risk of osteoporosis.  

[October]

The moment I began the regiment that Phillip recommended, all of my symptoms stopped, for the first time in three years. I went for three months completely symptom free, that is, until the major attack suddenly happened, and it was my body getting rid of all the prior damage.

I am lucky to be alive, I thank the forces that be that permitted it, because now I live symptom free.

Because of what Phillip did for me!

(ty so much)

This sounds like what we need.  OK, tell me more, as much as you can, and I will investigate other bits for myself.  

So far we have coeliac and Hashimotos to deal with.  Nothing else that I am aware of to date.   So start with stuff to counter those, if poss.

[Brigid]

October,
There is a girl on my daughter's gymnastics team that has Celiac Disease.  She has to be on a very strict diet, but she is living proof that if done properly, the child can live a very healthy and active life.  This girl is one of the top gymnasts in our state, works out for hours every day and is thriving.  I'm not sure about the other condition you mentioned and how that manifests itself, but hopefully you can get this under control and your daughter can start feeling good once again.

How much longer does school go this year?  Aren't you into summer vacation yet?  Or are you fighting for the next school year?  Maybe if you get her condition under control, she will be able to return to school next term.

Many blessings,

Brigid

[Anonymous]

October,

You're a soldier, really, for dealing with the attorney-jerk, the school board, and everyone who creates an obstacle for your daughter. I applaud you so much. Keep the anger going and let them have it effectively. You go girl!

bunny

[phillip]

October, First of all, for the calcium issue, go to a GNC or health food store, and pick up a bottle of Calcium Citrate.  About 1 tbsp. per day will give her all of the calcium that she needs, and it is flavored.  I am looking at a list here of items that have gluten hidden in them.  It is a large list.  Includes things like ketchup, Ovaltine, Chocolate, chewing gum, flavoring extracts, salad dressings, processed cheeses.  It is a long list. Strict adherence to a totally gluten-free diet, will give the intestines a chance to heal, and can generally reverse all or most of the symptoms.  Please remember this, most of the symptoms she is experiencing are being caused by malabsorption of important vitamins and minerals.  This is not about investigating what she can not eat, it is about what she can safely eat.  Home made soups, unprocessed meats, fresh vegetables, rice milk, rice bread, fresh fish.  Absolutely no convenience foods.  Please buy the book.  No grain alcohol, in any form.

[October]

I am Hypothyroid due to Hashimoto's Thyroiditis. In Hashimoto's your own body attacks the thyroid gland. If this happens too often it begins to destroy the thyroid gland, leading to Hypothroidism-which is very treatable with Synthroid. The symptoms of Hashimoto's can sometimes put you in a hyperthyroid stage, then a hypo stage, making diagnosis tough without the proper tests, which I assume you have done.

Yes.  Credit where it is due, the NHS is second to none with some things.  C had the blood test on Monday, and her consultant phoned me at home on Wednesday evening to say C has Hashimoto's.  Then she rang again yesterday (Thursday) to say she has spoken to an endocrinologist, and that they will repeat the bloodtest in 2 - 3 weeks time.  Then this morning her secretary rang me with an appointment for 13 July.

I defy any private medicine provider to beat that.  

I showed your post to C, and she said 'cool!' and looked very happy.  I think it takes a few days to get used to something like this, and to realise that you are not the only one in the world to have it.  And C spoke to her dad, and for once he did the right thing and gave her lots of support and encouragement.  

I am very hopeful of an improvement in her health once this is stabised.  Ever the optimist!

I spoke with a lawyer yesterday, a friend of my friend.  She has given me some useful advice, and I am going to speak with her again next week.  It is good to have an ally who can be on my side, and be informed and intelligent in areas that I haven't a clue about.  Her view is that the LEA and school are trying to scare me.  They are not likely to prosecute, but on the other hand, it might all turn into a kind of juggernaut, and processes move on, losing sight of the people concerned.  So she will help me try to ensure that doesn't happen.

Thanks all for your posts.  ((((hugs))))

We have the diet pretty well sorted, as far as the gluten goes, and C is very good at reading the small print on the ingredient listings.  I do make my own soup (Now I need a halo icon   ), and my own curry, and we eat mostly rice, lentils, potato, vegetables, fruit and salads.  C doesn't like meat or fish, apart from ham and (gf) sausage.  My own concern lies with the supposedly gf bread we get on prescription.  I am not sure this is right for C.  It contains wheat with the gluten taken out, and I never like eating anything with something removed.  I think I will move away from that for a while, and see whether just rice and potato flour bread is better.  I can make that myself.

But some of her pain is (I think) a version of separation anxiety, which came back from how the school reacted last autumn to her problems.  I don't think this will be an easy one to sort out, but I know her t is dealing with it.  

But enough about me ...    

[mum guesting]

HI, October. I think you are doing amazing things.  Taking on the school board, taking care of your daughter in extraordinary circumstances.. You do need the halo award!

I have a student who has Celic disease.  Her parents are diligent and have done what you are doing: experimenting, trying things, trying again and again... and she is thriving. My understanding is that until they figured out all the "kinks" she was a very sick little girl.  She is younger than your daughter, but has a real handle on what she can and cannot eat, and simply accepts it and moves on. Sounds like your daughter will be able to do the same.  

I have other students ( I teach the whole school) with various food allergies, some pretty drastic as well, and we have a medical alert list that we all get, so that we know what we need to do to support these children at school.
There are kids who need to use the restroom frequently because of bowel or urinary conditions, one who needs to have a snacks available because of diabetes and others who have Epi pens in the nurse's office because of severe allergies. We have also replaced every possible latex item in our school because of one girl's severe latex allergy.  And that's just the physical stuff.  We have students who travel from class to class with an adult because of cognitive/behavoiral issues, and many more who have learning disabilities who I am required to adapt my teaching to accommodate.

The point is, if a school board is challenging your choice in keeping your daughter home , they need to demonstrat to you WHAT exactly they can do at school to support your child and let YOU tell THEM what your child needs!  We trust the parent to do what is right for thier child's health and if that means staying at the home, so be it.  When they are ready for the school setting,  we are legally bound to make school as physically and emotionally safe for ANY child to attend.  But maybe that's just happens in the states...I don't know.  I just can't believe any developed country doesn't have pretty strict laws for accomodation in public school.
I still think you should demand and get just that!!!

Any way, there is my rant on the subject.  They are fools to mess with a mother, anyway. Your lawyer friend is most likely correct: they are used to intimidating parents with thier narrow interpretation of things, but YOU will not be scared. Good for you.

[October]

HI, October. I think you are doing amazing things.  Taking on the school board, taking care of your daughter in extraordinary circumstances.. You do need the halo award!

Thanks, mum.  

Any way, there is my rant on the subject.  They are fools to mess with a mother, anyway. Your lawyer friend is most likely correct: they are used to intimidating parents with thier narrow interpretation of things, but YOU will not be scared. Good for you.

The schools here are supposed to do these things as well.  The way they have avoided doing so is to say that until they have a letter from a doctor telling them to do them, then they don't 'know' that she is ill.  This is very dodgy from a human rights point of view, because a child's rights to appropriate care do not devolve upon a doctor's dianosis and notification to a school; the rights are there from the start.

The school denied the severity of Cs condition at every stage.  They told her to remain in class, even when she was crying her eyes out.  When she went to the school nurse she was sent back to class without the nurse even listening to what she had to say.  She was given a 'Learning Mentor' who just looked for her out of class, and sent her straight back.  On not one single occasion was I phoned and asked to come to the school because C could not cope with the pain and the additional stress of being at school, both together.

If the school could support her adequately, we would probably be able to achieve the kind of attendance she had last year, of around 80%.  But they have not demonstrated either a willingness or an abiblity to do this, and so I won't put her through the torture of crying through the whole day.

The US way that you describe of trusting the parent is completely missing.    What I have found instead is mistrust and suspicion, and a tendency to assume I am guilty until I prove that I am not.  This is not the traditional British justice system, but sadly it is the way British justice is moving more and more each year.  I have several times now been asked to justify my position, and I am dreading the same again next week; being treated like dirt, and threatened with criminal prosecution because my daughter is ill.  This is such an appalling situation to be in.

I am certain that if ever this got to court the judge (unless a complete moron) will look at the letters I have written and the replies I have received and will ask why has this child and her mother not got the support they have asked for, and which their GP has asked for, and which even their MP has asked for, from the school and the LEA.  I wish Judge Judy could get her hands on the LEA.  (I loooooove Judge Judy!!!   )

Sorry, forgot to mention.  They can't accuse me of neglecting Cs education.  She has been reading part of War and Peace today.     Just the romantic chapters, dealing with Prince Andrei and Natasha, but who cares???