Re: Feeling discouraged

June 25, 2003

I send my hugs and prayers - and tears! I remember how nerve-wracking the

throwing up could be!

I wonder if there might be a natural alternative to the bladder medicine.

I had a blood disorder for many years and was on Prednisone (which has

various undesirable side effects), and while researching for Timmy looked

up my disorder in a biomed library and found that 1000 mg of Vitamin C a

day cured it in a medical journal article. It worked for me! And I was

once perscribed a diuretic for an inner ear problem, but my blood pressure

was already extremely low. So I took marshmallow root and it cured it

without a problem in my blood pressure. I'm deifnitely NOT against

conventional medicine - I just research various alternatives. I book I

bought at Kaiser and later at Costco called Perscription for Nutritional

Healing has been helpful for various things.

I think the GI aspects of RSS have been the hardest to manage. I ended up

going out-of-town a lot for this. I suppose our next main

GI/behavioral/nutritional/scheduling hurdle may be eating more orally (it's

pretty trivial still). Yes - both our kids need prayers for GI issues!

Love,

Inga

At 02:39 AM 6/26/2003 +0000, you wrote:

>Where do I begin???? Of course, this all centers around Max, but he

>is so complicated that I just don't know where to start.

>

>Okay...Let's try the bladder thing. The urologist said that Max is

>having difficulty with bladder contractions which is why he has the

>accidents that he has. Max is on his third med for this because

>they all seem to make him nauseous, or so we think. But even when he

>is not on the meds, which we have tried, he still has trouble with

>nausea and terrible hiccups that make him throw up.

>

>Next, the hiccups. Max has had frequent bouts of these which

>eventually cause him to vomit whatever he has just eaten. The

>current medication for his bladder are supposed to help the hiccups -

>and they have. The does not really get them. But the nausea

>continues.

>

>Today was a particularly bad day for Max. Each time he has eaten, he

>has thrown up. No hiccups, but definite vomiting/rumination (that is

>anything that comes up within a certain amount of time after

>eating). I guess I am going to have to stop the new urology med to

>see if that helps, but the hiccups will probably return and he will

>vomit anyway.

>

>I have spoken to Dr. H. and she is throwing out theories, but nothing

>makes sense. I am getting discouraged because we are giving Max

>Cisapride and it really did work at first. Now it is hard to tell if

>it is working or if the other meds are making the Cisapride not be

>able to do its job. I am so frustrated and down about this!!! I

>cannot help my son. No matter what I seem to do for him (my husband

>is included in the " I " part), he still gets sick and no one has an

>answer. I hate calling Dr. H. all the time, but what else can I do?

>Who else do I turn to???

>

>I guess tomorrow I will call Dr. Rosh, his GI doctor and see what he

>has to say. I'm so tired of all this. And poor Max. He should not

>have to go through all of this, either. Enough already. I swear if

>Dr. H. wanted to just stop everything and do the Nissan and

>pyloroplasty, I would say okay at this point. If she can tell me

>that it will help him, then why not? This child/teenager has had

>more than his share of stuff to deal with. My heart breaks for him.

>

>Sorry for rambling, but I just had to get this off my chest. I guess

>today was not such a good day.

>

>Jodi

>

June 26, 2003

Inga,

I am NOT at all against alternative routes to help Max. At this

point, I would try just about anything. The only glitch we have is

the Cisapride. I do not know if any herbs or extra vitamins would

interfere with the Cisapride or negate its effects. I would have to

research this and then ask Dr. H. We have to be so careful... But I

think that today I may do some research into it and see if there is

anything else we can try. My first goal is to get him off the

bladder meds to see if he gets better. He is home most of the day,

just out from 9-12 and then 6:30 to 8:30. Maybe even just making him

go to the bathroom every hour again will be enough.

Thanks for your concern. I wish all of our kids would just feel well

and be happy!

Jodi

June 26, 2003

Thank you, . I just need some encouragement right now. At

least it is a new day and I know I can start my experimenting and see

what happens. We all have those bad days, you know?

Jodi

June 26, 2003

Hi Jodi,

God, I can only imagine! Maxi threw up for the first four months of

his life, every time we fed him, and for a kalf an hour afterward. I

slept with him on my chest in a chair, just so I could be there when

it happened. But 14 years, WOW! I don't knwo how you feel about

complimentary medicine, but I truly believe that taking digestive

enzymes has helped him Maxi. I started at the the docs suggestion

with lactase which is what lactaid is(I even put lactaid drops on my

nipples in an effort to nurse), but when he wouldn't keep anything

down still, we moved up to a full complement of digestive enzymes.

Protease, lipase, cellulase and amylase and lactase. They are found

in pill and powder form at the healthfood store, usually aready

mixed together. There are adult formulas, childrens formulas, cat

formulas and dog formulas. The one Maxi takes also has a pro-biotic

complex, the good bacteria in your gut, that is also found in

yogurt. If you are really desperate and Dr. H tells you it is o.k.,

give it a try.

A note about enzymes and medication, they usually don't affect one

another. Another note, they seem to reduce his heart burn or throat

burn too.

Please know that your in our prayers and we are sending you

((((BIG Hugs))))

AmyMarie

> Thank you, . I just need some encouragement right now. At

> least it is a new day and I know I can start my experimenting and

see

> what happens. We all have those bad days, you know?

>

> Jodi

June 26, 2003

Thanks for the info, AmyMarie. I will have to check with Dr. H.

first, but it is certainly worth a try.

Jodi

June 26, 2003

You're a great mom!

At 10:00 AM 6/26/2003 +0000, you wrote:

>Inga,

>

>I am NOT at all against alternative routes to help Max. At this

>point, I would try just about anything. The only glitch we have is

>the Cisapride. I do not know if any herbs or extra vitamins would

>interfere with the Cisapride or negate its effects. I would have to

>research this and then ask Dr. H. We have to be so careful... But I

>think that today I may do some research into it and see if there is

>anything else we can try. My first goal is to get him off the

>bladder meds to see if he gets better. He is home most of the day,

>just out from 9-12 and then 6:30 to 8:30. Maybe even just making him

>go to the bathroom every hour again will be enough.

>

>Thanks for your concern. I wish all of our kids would just feel well

>and be happy!

>

>Jodi

>

June 26, 2003

Jodi,

When Storm took cisopride, it also made him wet. (unable to hold

urine) I know this is not what you want to hear, but it is a side

effect. (BUT, didn't Max start before he started the cisopride?) I

will continue to pray!

On another note, I had an interview at a high school on Tues for a

special ed aide position. Should here something early next week.

Carmen

June 27, 2003

Good Luck Carmen!

> Jodi,

> When Storm took cisopride, it also made him wet. (unable to hold

> urine) I know this is not what you want to hear, but it is a side

> effect. (BUT, didn't Max start before he started the cisopride?) I

> will continue to pray!

> On another note, I had an interview at a high school on Tues for a

> special ed aide position. Should here something early next week.

> Carmen

June 27, 2003

,

I don't know if his problems are related to RSS or not. I think to

some degree they are, but Max is extra sensitive to things involving

his gut, so there are always complications. Because Max is about to

turn 15, he is one of the older kids and tends to go through these

things first, only to find out that some were related to RSS. Reflux

is a good example. When Max was originally diagnosed, there was no

literature that said RSS kids can have reflux. Even Dr. H. did not

know. Now she has seen to many of them with reflux, that we know for

sure it is a characteristic. Actually, the same thing with the

hypoglycemia - at least the ketone part that Max has. Thank goodness

he is social, friendly and overall happy. I don't know that I could

go through what he does. Then again, he does not know of a life any

different than the one he is living. He is used to the doctors,

hospitals and such. If only you knew what we have been through in 15

years!

By the way, thank you for your supportive message. It means a lot.

Jodi

June 27, 2003

Jodi,

My heart and prayers go out to you as well. Your last message about Max not

knowing a life any different brought tears to my eyes. He has had to endure

too much for such a short amount of time he's been on this planet. I pray

that he and you get a break somewhere along the way. You both are so strong.

It's good to hear that he doesn't let it all rule his life. That's just more

proof as to what a great Mom you are and a great kid he is. Hang in there!

Regards,