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Hi Precious,

You should do some research about detoxifying.

Dr. Donsbach recommends colonics, Dr. Kelley recommends high coffee enemas to

cleanse the liver.

Best regards, Annette

preciousizprecious wrote:Hi. I just had a cancerous tumor removed a couple of

weeks. The tumor

was on my left kidney and doctors estimated it had been there for

around seven years. I'd had very symptoms and no idea it was there.

I'd had a couple of urinary tract infections over the years with some

blood in the urine but doctors had told me it was nothing much to worry

about and just given me antibiotics. I've just turned 31 which is

apparently young for kidney cancer.

I've embarked on a program of healing. I'm eating a very healthy

organic diet made up of raw foods and lots of juice. I was already a

vegetarian before surgery. I'm also seeing a therapist as I'm

convinced my cancer was wrapped up in unresolved emotional issues. I'm

also taking flax seed oil, acidophulus, multi-vits and spirulina. I am

wondering what else I should be doing though......

Precious

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Guest guest

Hi Precious,

You should do some research about detoxifying.

Dr. Donsbach recommends colonics, Dr. Kelley recommends high coffee enemas to

cleanse the liver.

Best regards, Annette

preciousizprecious wrote:Hi. I just had a cancerous tumor removed a couple of

weeks. The tumor

was on my left kidney and doctors estimated it had been there for

around seven years. I'd had very symptoms and no idea it was there.

I'd had a couple of urinary tract infections over the years with some

blood in the urine but doctors had told me it was nothing much to worry

about and just given me antibiotics. I've just turned 31 which is

apparently young for kidney cancer.

I've embarked on a program of healing. I'm eating a very healthy

organic diet made up of raw foods and lots of juice. I was already a

vegetarian before surgery. I'm also seeing a therapist as I'm

convinced my cancer was wrapped up in unresolved emotional issues. I'm

also taking flax seed oil, acidophulus, multi-vits and spirulina. I am

wondering what else I should be doing though......

Precious

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  • 3 weeks later...

kmc,

I'm hoping one of the men on this forum with kleinfelters or another

congenital condition that affects puberty will answer your post.

Based on what you've said, I would be wondering several things right

now:

1.) How qualified is his physician to deal with a condition like

hypogonadism? you said it was a 'regular doctor " . If you read through

the posts on this forum, I think you'll find that there are

relatively FEW physicians who are really qualified (or even

interested) in treating this condition. If it were my child I would

seek out the finest pediatric endocrinologist I could find, and I

would thoroughly check references and his/her attitude before

commiting to them for a long period of treatment.

2.) Has he developed ANY other secondary sexual characteristics?

These include deepening voice, increased muscularity, and increased

genital size. In an average 14 or 15 year old male, the fastest

growing part of their body is actually their genitals. Has he had any

ejaculate, wet dreams, etc. This may be uncomfortable for him to

discuss with mom, but maybe dad could do it.

3.) What tests are they planning to perform? Look in the bookmarks

section of this forum and read the AACE guidelines for treatment of

Hypogonadism. Make sure they are thorough and test everything that

makes sense. Your son has only one chance to go through puberty

normally. You will need to be proactive and educated to make sure the

MDs don't gloss over something and miss treating a condition that

could seriously affect him as an adult. Of course, he could simply be

a " late bloomer " and everything could be OK, but you need to make

SURE this is the case!

I know all of this probably seems scary to your whole family. Hang in

there and let us know if there is anything we can do to support you.

Regards,

K4

> My son, 15.11 years old was told by his doctor that he has delayed

> growth. The appointment was one month ago during a routine sports

> physical by his regular doctor.

>

> My son is tiny, 5'2, around 90-94 pounds, completely hairless. His

18

> year old brother reached puberty around age 11. He is 5'9 and as

far

> as I can tell, he's shy of telling his mom everything, lol,

> everything works for him. The younger one was always small. We

never

> thought anything of it. He played all of the sports, currently in

> cross country and wrestling. Hes not at all agressive but he has

the

> drive to keep him in sports.

>

> The doctor ordered x-rays and discussed blood tests. This scared

him

> because it takes four people to hold him down for his childhood

> shots. I told the doctor that I would go home and discuss this with

> my husband and mull over what information I could find out.

>

> We got the results from the x-rays and a doctors appointment next

> Tuesday morning. According to the x-ray tech, His chronological age

> at the time was 15.10. Estimated bone age using standards compiled

> by Greulich and Pyle us approximately 14 years. Standard deviation

> for patient's chronological age is approximately 12 months.

> Impression: The patient's estimated bone age of 14 years is within

> two standard deviations of his chronological age of 15 years,

> although near the lower limits of normal. Then hand written it

says:

> Still has time to grow.

>

> Here are my questions:

> Do we have anything to worry about?

> Actually his bone age is 22 months younger than his chronological,

> more than the deviate 12 months. But if I go by what is said in the

> impression, it looks like hes only 12 months deviant. Is the 22

> months deviant right?

>

> We never thought anything was wrong before. Now he's terribly

> worried. I just don't want to put off anything that could be helped

> now.

>

> Thank you,

> Kathleen

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Thank you for replying. I will answer the two emails as best as I can. First,

my son does feel free to ask all the embarassing questions about his body.

Things I would never have even concidered with my parents, still don't. We try

to be as frank and open with all of our children.

Heres my answers to kaitain4's questions

1.) How qualified is his physician to deal with a condition like hypogonadism?

you said it was a 'regular doctor " .

He has been our doctor for 8 years. He is a great man but I know doctors have

their limitations. When I was pregnant with the twins and coupled with high risk

pregnancy, he referred me to a more qualified doctor. He even knows his

limitations I guess. Our doctor is affiliated with the University of Michigan. I

delivered my children there, all major medical procedures there and so on,

otherwise I go to the smaller hospital and doctors offices in Chelsea Michigan.

Knowing I have UofM at my disposal does make me feel a little better about any

upcoming treatment and tests he might have to go through. I will research the

staff at UofM to see who and how qualified the doctors are.

2.) Has he developed ANY other secondary sexual characteristics? These include

deepening voice, increased muscularity, and increased genital size. In an

average 14 or 15 year old male, the fastest growing part of their body is

actually their genitals. Has he had any ejaculate, wet dreams, etc.

His voice is so high, his friends think Im him and my friends thinks he's me on

the phone. He has no muscle tone even though he spent four months working with

both free weights and machines between his school and the Y. His genitals are

actually normal size I think. Im not sure really aside from looking for some

pictures on the net to compare. I know his older brother is sized right from

what I saw a year ago when he was sick and I had to clean him up. He feels

comfortable with his size. He has erections but no ejaculate. He hasn't had wet

dreams either. Since his doctor told him of this, I get morning reports that

nothings working yet, lol. Oh the things moms know now a days, lol. I am so

glad that we started at a young age talking about bodies and expectations so we

dont feel embarassed now with it.

3.) What tests are they planning to perform?

I am not sure. All he said was blood tests. He did order a bone growth x-ray and

those results I posted in the previous email. I read past posts from this group

and wrote down six tests that everyone seems to agree upon: Free and total

testosterone, LH/FSH, SBHG, Estradiol, Prolactin, PSA.

Now on the the other email I saw replying to my post.

Thanks!

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I never gave his height, weight or delay a second thought. It was the doctor

that brought all of this up in a routine sports physical. Im not really worried

about it, I just want to make sure that if there is something that can be done

now, then do it. If he is just delayed and everything will fall into place on

its own (which i assumed before the doctor) then fine, we will just sit back and

wait. I just don't want to say let's wait if he really does have medical

problems.

Re: New Member

Hi

I think you are over worried & being a mother you are rightly so.The

usual age of puberty in boys is 12-16 years... & your child is 15.

If x-rays for the bone age are suggesting a chronological age with in

the 2 sd's of normal then i think this is ok.

Your kid may be having a CONSTITUTIONAL DELAY of his growth

spurt...this means the same final 'impression'in ur report that

suggested ....that 'there is still some time to grow'...

the things that r important in ur sons case are

1.a family history of short stature...looking at ur other son only

wouldn't justify a short stature scenario in ur family...how

about you & ur husband & ur and ur husband's parents....

2.moreover what about the growth of genitals...are they appropriately

growing to their normal size....

i think ur complaint has 2 different aspects that may or may

not be related to each other ....

1.are u complaining for a short stature???...for which there may be

dozens of different causes(of which hypogonadism may be one)

OR

2.is it hypogonadism that is the PRIMARY cause of ur childs problems

(which i personally think is not the case with your kid).'

& finally please don't push ur kid for some un necessay

testing...this may prove embarrasing & a psychological burden for the

young soul!

> My son, 15.11 years old was told by his doctor that he has delayed

> growth. The appointment was one month ago during a routine sports

> physical by his regular doctor.

>

> My son is tiny, 5'2, around 90-94 pounds, completely hairless. His

18

> year old brother reached puberty around age 11. He is 5'9 and as

far

> as I can tell, he's shy of telling his mom everything, lol,

> everything works for him. The younger one was always small. We

never

> thought anything of it. He played all of the sports, currently in

> cross country and wrestling. Hes not at all agressive but he has

the

> drive to keep him in sports.

>

> The doctor ordered x-rays and discussed blood tests. This scared

him

> because it takes four people to hold him down for his childhood

> shots. I told the doctor that I would go home and discuss this with

> my husband and mull over what information I could find out.

>

> We got the results from the x-rays and a doctors appointment next

> Tuesday morning. According to the x-ray tech, His chronological age

> at the time was 15.10. Estimated bone age using standards compiled

> by Greulich and Pyle us approximately 14 years. Standard deviation

> for patient's chronological age is approximately 12 months.

> Impression: The patient's estimated bone age of 14 years is within

> two standard deviations of his chronological age of 15 years,

> although near the lower limits of normal. Then hand written it

says:

> Still has time to grow.

>

> Here are my questions:

> Do we have anything to worry about?

> Actually his bone age is 22 months younger than his chronological,

> more than the deviate 12 months. But if I go by what is said in the

> impression, it looks like hes only 12 months deviant. Is the 22

> months deviant right?

>

> We never thought anything was wrong before. Now he's terribly

> worried. I just don't want to put off anything that could be helped

> now.

>

> Thank you,

> Kathleen

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Kathleen,

Thanks for your post. You sound like a great mom!!!

A couple of other tests you may want to have them do, although maybe

not the first time around (see what these other tests reveal)are

growth hormone stimulation, IGF-1 (also a growth hormone), and

karotyping to see if there is a genetic basis for what they're

finding.

There are basically 3 types of hypogonadism:

1.)Primary - this is caused by a failure of the testicles themselves.

Can be due to trauma, birth defect, disease (like a virus),

medication (like chemotherapy), or an abnormal immune system response

(immune system destroys tissue).

Believe it or not, a guy at my work got a really nasty virus one

winter and it killed his testicles. He didn't know it, but after he

mentioned to me that all the hair was falling off his arms I was able

to convince him to get tested. He had primary hypogonadism.

2.) Secondary - this is caused by trauma to the head, infiltrative

disease, immune system response, medication (like prednisone),genetic

defects, etc. The pituitary gland does not make enough of the

messenger hormones (LH and FSH) to tell the testes to make

testosterone and sperm. The majority of these cases are " idiopathic " ,

meaning they have absolutely no idea what caused it. I have this

type. Very frustrating not knowing the " why " .

3.) Androgen receptor - this is caused by a genetic defect in which

the cellular receptor protiens for testosterone are not formed

properly and the body cannot use the testosterone.

Depending on the results, they may also want to do an MRI and look at

the pituitary gland.

Regards,

K4

> Thank you for replying. I will answer the two emails as best as I

can. First, my son does feel free to ask all the embarassing

questions about his body. Things I would never have even concidered

with my parents, still don't. We try to be as frank and open with all

of our children.

>

> Heres my answers to kaitain4's questions

> 1.) How qualified is his physician to deal with a condition like

hypogonadism? you said it was a 'regular doctor " .

>

> He has been our doctor for 8 years. He is a great man but I know

doctors have their limitations. When I was pregnant with the twins

and coupled with high risk pregnancy, he referred me to a more

qualified doctor. He even knows his limitations I guess. Our doctor

is affiliated with the University of Michigan. I delivered my

children there, all major medical procedures there and so on,

otherwise I go to the smaller hospital and doctors offices in Chelsea

Michigan. Knowing I have UofM at my disposal does make me feel a

little better about any upcoming treatment and tests he might have to

go through. I will research the staff at UofM to see who and how

qualified the doctors are.

>

> 2.) Has he developed ANY other secondary sexual characteristics?

These include deepening voice, increased muscularity, and increased

genital size. In an average 14 or 15 year old male, the fastest

growing part of their body is actually their genitals. Has he had any

ejaculate, wet dreams, etc.

>

> His voice is so high, his friends think Im him and my friends

thinks he's me on the phone. He has no muscle tone even though he

spent four months working with both free weights and machines between

his school and the Y. His genitals are actually normal size I think.

Im not sure really aside from looking for some pictures on the net to

compare. I know his older brother is sized right from what I saw a

year ago when he was sick and I had to clean him up. He feels

comfortable with his size. He has erections but no ejaculate. He

hasn't had wet dreams either. Since his doctor told him of this, I

get morning reports that nothings working yet, lol. Oh the things

moms know now a days, lol. I am so glad that we started at a young

age talking about bodies and expectations so we dont feel embarassed

now with it.

>

> 3.) What tests are they planning to perform?

>

> I am not sure. All he said was blood tests. He did order a bone

growth x-ray and those results I posted in the previous email. I

read past posts from this group and wrote down six tests that

everyone seems to agree upon: Free and total testosterone, LH/FSH,

SBHG, Estradiol, Prolactin, PSA.

>

> Now on the the other email I saw replying to my post.

>

>

> Thanks!

>

>

>

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K4,

I wrote down what you said for the second round if there is one. He never had

trama or illness that I know of. Well outside of an occassional well placed kick

by a girl at school. But you never really know I guess if there isn't direct

pain in the testicles. So Im guessing genetic at this point.

A little side thought. All of this is happening lately and then watching

something on Oprah about women's eggs starting to deteriate by the time they are

27. Seems that women holding off on having children into their 30's runs a very

high chance of not being able to have any. Reading past posts here, boys/men

with this seems to have low sperm count. Maybe they should mention to watch for

this in the sex ed classes. I know there are late bloomers and some people that

just look so young for thier ages. But never would I have ever thought this was

a real problem. shown me everything that they gave him in sex ed class

and we talked about part of it. Never once did any of it warn them that they

might not mature or that they might mature later than the rest of the boys. The

talked about erections, ejaculations, and even wet dreams. seriously

thought that boys don't ejaculate until they are much older. Masterbation sure,

and even sex, but not to the point of ejaculating. I didn' t know he thought

this way until all of this started. I asked him about wet dreams. He said that

he wakes up with erections (house full of boys, I see a lot of pointing in the

morning, lol) and noticed that he was masterbating in his sleep, but never

ejaculating.

Kathleen

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hi

i did write to u b4 but delete it as i was not sure of some of my own

thoughts...

but now having read your full reply...i m sure there is nothing wrong

with ur kid....he may be having a delay in his growth spurt...also

called 'constitutional delay' in growth(u may confirm it with ur

doc)...this CD may appear as a delayed puberty or a short stature &

it has no relationship whatsoever with the fact that all ur family

members bloomed at right time & are of normal height...

i think he will catch up with the growth velocity in due

time...perhaps a bit delayed but the final outcome would be ok---

i have heard that docs have tried testosterone for 4-6 months in kids

of ur age...to make the process a bit faster....but the choice is

urs.....

In @y..., " Kathleen Covill " <kmcovill@a...> wrote:

> K4,

>

> I wrote down what you said for the second round if there is one.

He never had trama or illness that I know of. Well outside of an

occassional well placed kick by a girl at school. But you never

really know I guess if there isn't direct pain in the testicles. So

Im guessing genetic at this point.

>

> A little side thought. All of this is happening lately and then

watching something on Oprah about women's eggs starting to deteriate

by the time they are 27. Seems that women holding off on having

children into their 30's runs a very high chance of not being able to

have any. Reading past posts here, boys/men with this seems to have

low sperm count. Maybe they should mention to watch for this in the

sex ed classes. I know there are late bloomers and some people that

just look so young for thier ages. But never would I have ever

thought this was a real problem. shown me everything that

they gave him in sex ed class and we talked about part of it. Never

once did any of it warn them that they might not mature or that they

might mature later than the rest of the boys. The talked about

erections, ejaculations, and even wet dreams. seriously

thought that boys don't ejaculate until they are much older.

Masterbation sure, and even sex, but not to the point of ejaculating.

I didn' t know he thought this way until all of this started. I

asked him about wet dreams. He said that he wakes up with erections

(house full of boys, I see a lot of pointing in the morning, lol) and

noticed that he was masterbating in his sleep, but never

ejaculating.

>

> Kathleen

>

>

>

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That would be great if there is nothing wrong, just a little slow at getting

around to maturity. He is a relaxed kid and takes life at his own pace.

Re: New Member

hi

i did write to u b4 but delete it as i was not sure of some of my own

thoughts...

but now having read your full reply...i m sure there is nothing wrong

with ur kid....he may be having a delay in his growth spurt...also

called 'constitutional delay' in growth(u may confirm it with ur

doc)...this CD may appear as a delayed puberty or a short stature &

it has no relationship whatsoever with the fact that all ur family

members bloomed at right time & are of normal height...

i think he will catch up with the growth velocity in due

time...perhaps a bit delayed but the final outcome would be ok---

i have heard that docs have tried testosterone for 4-6 months in kids

of ur age...to make the process a bit faster....but the choice is

urs.....

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  • 2 weeks later...

In a message dated 8/29/02 8:10:35 PM Eastern Daylight Time, sedonanrg@... writes:

Hi all!

Hi! I've been here for a while but tend to lurk...: )

I just started using it so I have nothing to report about that, but I plan

on doing the liver flush in a couple of weeks after using the zapper.

If I remember correctly Dr. recommends the kidney cleanse first....

I feel better than I did in my teens and feel that the combination of the

raw diet and the zapper and colon stuff is the golden key to longevity

and vital health.

I'm starting to come to that conclusion myself..:)

My questions are as follows. 1. Can the zapper be used on multiple

people or does each person need their own? (I know it's a stupid

question but just in case.)

Only unasked questions are stupid...: ) You can share...IMO.

2. I am a bodyworker and was thinking of

buying one to use on my clients while they are on my table for an hour.

Will this be an effective boost to their treatments every time they come

in , or is it not enough time to even bother?

Follow the protocol. Remember that initially after the person might feel like garbage...you'd have to explain why. How often would they visit?

3. Is a liver flush ok to

do if you cannot go to a colon therapist immediately after or can it be

done without it?

Follow the protocol....I believe most do the flush without hydro....but it sure sounds like a good idea if available!

4. I have 2 dogs that are my best friends and getting

rid of them is not an option. Can dogs be zapped too and be just as

effective in ridding them of parasites?

Skin contact seems to be the greatest issue....

Looking forward to reading all your posts and becoming a sponge of

knowledge!

Patti

Only way to be!

Khepri

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Hi Patti, I just recently asked A., one of Dr. 's assistants about zapping my dogs, I have 3 , he said to do it same as us 3X7 and do it on their paws.

I haven't started yet with zapping them, but I think I will start out more like 3X3 and observe them and take it from there. Phyllis

In a message dated 08/29/2002 6:10:03 PM Mountain Daylight Time, sedonanrg@... writes:

4. I have 2 dogs that are my best friends and getting

rid of them is not an option. Can dogs be zapped too and be just as

effective in ridding them of parasites? Interestingly enough, my

holistic vet put them on black walnut hull tincture years ago in lieu of

heartworm prevention because of it's anti-parisitic properties.

Patti

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Along with colon therapy, you might try potassium supplementation.

I find it greatly enhances digestion. Try 1/2 gm with each meal for

starters. If I take too much, I get pains in my chest. But it works

wonders for regularity. I read that lemons have high potassium, so I

drank the juice of one whole lemon. Great results! I am trying a

banana with each meal too, since they are supposed to be high in

potassium. I would greatly appreciate feed back from others who do

potassium supplementation.

Leo

--------------------------------------

> Hi all!

> I just wanted to introduce myself to the list and ask a couple of

> questions.

> First, let me give you a brief rundown of how I got here. I am 42,

and

> I have suffered for many years with a host of health issues. To

look at

> me, I looked healthy as could be, but I felt like crap. People

would

> always say.. " but you don't LOOK sick " . Over the years, I have

suffered

> from IBS, chronic fatigue, hypoglycemia which has led to Diabetes

type

> II, a mysteriously swollen foot the size of a water balloon, regular

> migraines, brain fog, occasional stuttering, poor aerobic capacity,

> (even though I am a spinning instructor and exercise 4-5 times a

> week)..the list went on and on.

> I tried every known alternative therapy with no success, until I

found

> the raw food diet. With that, just about all of my health problems

went

> away, with the exception of the swollen foot. During the time of

the

> raw diet transition, I discovered hydro colon therapy which helped

me

> immensely. The therapist talked alot of liver flushing, and at one

> session she actually showed me actual gallstones that came out of

one of

> her clients after they did the flush! She referred me to Dr.

's

> book and I was hooked. I just purchased a zapper....the Terminator.

I

> just started using it so I have nothing to report about that, but I

plan

> on doing the liver flush in a couple of weeks after using the

zapper. I

> feel better than I did in my teens and feel that the combination of

the

> raw diet and the zapper and colon stuff is the golden key to

longevity

> and vital health.

> My questions are as follows. 1. Can the zapper be used on multiple

> people or does each person need their own? (I know it's a stupid

> question but just in case.) 2. I am a bodyworker and was thinking

of

> buying one to use on my clients while they are on my table for an

hour.

> Will this be an effective boost to their treatments every time they

come

> in , or is it not enough time to even bother? 3. Is a liver flush

ok to

> do if you cannot go to a colon therapist immediately after or can it

be

> done without it? 4. I have 2 dogs that are my best friends and

getting

> rid of them is not an option. Can dogs be zapped too and be just as

> effective in ridding them of parasites? Interestingly enough, my

> holistic vet put them on black walnut hull tincture years ago in

lieu of

> heartworm prevention because of it's anti-parisitic properties.

> I know this is long winded and these questions have probably been

> covered a million times, but I am just so happy to find this list.

I

> wish everyone would would wake up to these wonderful techniques

instead

> of running everything by their doctors who usually shoot them all

down.

> Looking forward to reading all your posts and becoming a sponge of

> knowledge!

> Patti

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Welcome, Patti,

Congratulations on finding the right diet. I'm still looking-- would you kindly tell me what you eat in a day? I'd like to try it except I tend to get hypoglycemic from too much fruit.

Regarding your dogs, Self Health Resource Center sells a Zap- Attach for dogs. Click on Pet Supplies and see.

Glad you're here!

Lynne

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*I*, too, am a new member.

You might try the same search that *I* started out with. All I entered on the

address line of my browser was 'apraxia'.

*I* joined because my 22 month old grandson doesn't really SAY anything. My

daughter has had physical and speech therapists coming to see him for

approximately the last nine months.

He has pretty much caught up on the physical scale, but his lack of speech

concerns me.

If I can be of ANY help to you from here in the states, please do not hesitate

to call upon me!

Melonie

cecampbell wrote:Hi Everyone,

I am new to this group and am not even sure if my daughter has apraxia (no

formal diagnosis). Her speech therapist suggested it as a possibillity

today so I decided to do some research and wound up here. I read 's

story about Tanner and his behavior before the age of three mirrors my

daughters almost exactly with one or two exceptions. We have been involved

with PT and OT since birth. Once we caught her up on motor skills we started

with speech. She has made no progress at all with traditional speech

therapy and a very attentive mom and dad. She is 30 months old and says

nothing. She is very social and she can follow directions with no problems.

Sound familiar? She communicates by pointing and intonations. She also

uses a few signs that she has created herself.

I would really love any advice you all have to give. Please note that we

are a military family and live in Germany so we may not have the access to

some of the resources that you do. Specifically I would like to know about

(or where I can find info about) what therapies are most effective and what

other things you all are doing. This is all new to me so I guess I am

trying to ask your advice rather than reading every article known to man.

There will be time for that later. Right now I just want to start helping

my baby girl.

By the way, we have five children total. Three girls and two boys ages

2-10. My husband and I have been married for eleven years. We are a

military family with 16 years in.

Charlene

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Welcome Charlene,

Have your checked out http://www.apraxia-kids.org/ yet?

Two years ago when my son, was dx with apraxia I found it very

helpful. And you probably saw the two listed on the home page.

http://www.apraxia.cc

http://www.speechville.com

Has your SLP given you homework? Thing to work on with your baby

girl? I like to get 's in writing, because otherwise I forget

all things I am to work with him on.

Heidi mom to 6(talked early and hasn't stop), 4(my late

talker, was 26 months before he said his first word-very quite baby

never babbled. dx w/Verbal apraxia & SDI), 5 months (just

learned know to grasp things and pull to her mouth)

" cecampbell " <cecampbell@g...> wrote:

> Hi Everyone,

>

> I am new to this group and am not even sure if my daughter has

apraxia (no

> formal diagnosis). Her speech therapist suggested it as a

possibillity

> today so I decided to do some research and wound up here. I read

's

> story about Tanner and his behavior before the age of three mirrors

my

> daughters almost exactly with one or two exceptions. We have been

involved

> with PT and OT since birth. Once we caught her up on motor skills

we started

> with speech. She has made no progress at all with traditional

speech

> therapy and a very attentive mom and dad. She is 30 months old and

says

> nothing. She is very social and she can follow directions with no

problems.

> Sound familiar? She communicates by pointing and intonations. She

also

> uses a few signs that she has created herself.

>

> I would really love any advice you all have to give. Please note

that we

> are a military family and live in Germany so we may not have the

access to

> some of the resources that you do. Specifically I would like to

know about

> (or where I can find info about) what therapies are most effective

and what

> other things you all are doing. This is all new to me so I guess I

am

> trying to ask your advice rather than reading every article known

to man.

> There will be time for that later. Right now I just want to start

helping

> my baby girl.

>

> By the way, we have five children total. Three girls and two boys

ages

> 2-10. My husband and I have been married for eleven years. We are

a

> military family with 16 years in.

>

> Charlene

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Charlene,

My son was in speech therapy from 16-months to 3 years of age with

regression so I know what you are going through. He lost all words and

sounds and was silent for over a year. When we started getting appropriate

therapy my son made wonderful progress. He now talks quite intelligibly and

in full sentences.

I have heard that the DODS schools are quite good and I am hoping that the

SLP at the school is equally as good.

My heart goes out to you as I know that military families face unique

challenges when it comes to our kids needs. I wanted to let you know that

there is a discussion group specifically for military members whose kids

have speech challenges. Here is the address:

http://www.speech-express.com/mailman/listinfo/military-friends_speech-express.c\

om

We are stationed at AFB and are learning the in's and out's of

providing for our child " military style " . It isn't easy.

BTW, we got tricare to approve payment of speech therapy twice a week for my

son. Contact me if you want more details. I am also going to post our

insurance victory on the military-friends discussion group that I mentioned

above.

Tricia Morin

mom to

4 yrs (apraxia of speech, limb apraxia, sensory issues)

Hi Everyone,

I am new to this group and am not even sure if my daughter has apraxia (no

formal diagnosis). Her speech therapist suggested it as a possibillity

today so I decided to do some research and wound up here. I read 's

story about Tanner and his behavior before the age of three mirrors my

daughters almost exactly with one or two exceptions. We have been involved

with PT and OT since birth. Once we caught her up on motor skills we started

with speech. She has made no progress at all with traditional speech

therapy and a very attentive mom and dad. She is 30 months old and says

nothing. She is very social and she can follow directions with no problems.

Sound familiar? She communicates by pointing and intonations. She also

uses a few signs that she has created herself.

I would really love any advice you all have to give. Please note that we

are a military family and live in Germany so we may not have the access to

some of the resources that you do. Specifically I would like to know about

(or where I can find info about) what therapies are most effective and what

other things you all are doing. This is all new to me so I guess I am

trying to ask your advice rather than reading every article known to man.

There will be time for that later. Right now I just want to start helping

my baby girl.

By the way, we have five children total. Three girls and two boys ages

2-10. My husband and I have been married for eleven years. We are a

military family with 16 years in.

Charlene

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> Dear Morin Family,

> We are a military family who is getting the runaround from

Tricare

> getting my son diagnosed and treated for Oral Apraxia. Can you

help?

> mratley63@c...

- I am not Tricia Morin, but Traci. I am military and live

in Hawaii. Our developmental ped. got our 2.3 yo daughter approved

for 2 hours of speech a week through tricare using a neurological

code called " central nervous system dysfunction " . I do not know the

#, but your doctor should be able to look it up under neurological

codes. We also were able to get an hour/week of SI OT w/ that code.

We were approved immediately w/ that code and have had no problem

continuing services (because tricare only approves 12 weeks at a

time). Where are you stationed at?

Traci mom to Kennedy 2.3 and Hunter 4.10 Hawaii

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Tricia

I noticed that you listed " limb apraxia " next to your son's name; I

believe my daughter is also having difficulty due to limb

apraxia...we have been giving her EFA's for 2 months now but I

wondered if there was anything additional you know about or would

recommend in this regard?

Thanks

Kim

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,

I am glad that you emailed me. Tricare can be a real maze! My first

question to you is does your child have an official diagnosis of apraxia?

If yes, from what sort of professional?

Tricia Morin

AFB

-----Original Message-----

Dear Morin Family,

We are a military family who is getting the runaround from Tricare

getting my son diagnosed and treated for Oral Apraxia. Can you help?

mratley63@...

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  • 4 weeks later...

Hi Michele,

Welcome! I take Methotrexate (inject 20mg week) and it has cleared all most

all psoriasis lesions and helps a small amount with psoriatic arthritis. If

you get RX for folic acid be sure to take as it keeps you from suffering with

hair loss.

Do you have P along with PA?

I also have spondolythesis (in my case this is a Grade II-III Spondo)...about

a 2 inch space in which the L4-L5 vertebral bodies are off. Well, one of

them is off and the other just rubs against it and causes extreme pain. Not

sure if this is what you are asking or if you are referring to PA in the

spine.

Hope you find this site as informative and helpful as I have!

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Michele....RE: your request for natural remedies?

You may want to check out Edgar Cayce site.

<A HREF= " http://www.edgarcayce.org/ " >Official site of Edgar Cayce's A.R.E. -

Association for Research and

Enlightenment</A> Heritage Store / Virginia Beach, Virginia.

<A HREF= " http://www.caycecures.com/ " >The Heritage Store - Complete Supplier of

Edgar Cayce Products</A>

They offer a variety of ideas, supplements, remedies and mental

encouragement, too!

[Moderator's note: I believe proscribed mentioning non-prescription

health products by brand name rather than generic ingredients, but I cannot find

her original post about the matter and am not sure whether it applies to

something like this(?). Ron]

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Hello and welcome. I have taken methotrexate without much help...but

what works for one doesn't necessarily work for another.... a lot of

trial and error I'm afraid.

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Thanks for all the replies, I have P only on the scalp and have controlled it

using T-Gel shampoo, it never completely goes but its more like dandruff, I find

that the changing of the seasons affects my scalp...weird huh! The Doctor says I

have spondo in the spine and neck, but I'm really new to this so I'm not

completely sure yet. Does the Metho help the Spondo? My knee is the worst thing

at the moment, it has been swollen now for 3 months and stops me from hiking

with my family and just recently the opposite ankle has kicked off, just walking

around the shopping center is bad enough and that's flat!!!! But seeing some of

the posts on this list put things into perspective for me.....I am lucky!

Am I right in thinking this or is this an old wives tale....once you start on

the drugs you will never be completely off them or will they just get stronger

and stronger and have more to combat the side effects of the others. That is

what my mother says as my Dad has Rheumatoid Arthritis and she has had him on

every diet and natural supplement known to man, he has not been on medication

and is now in remission, he has had the disease for 20 years and has no physical

abnormalities aside from the deformed knuckles. Is he just lucky or is she onto

something or is RA different to PA?

One last question , if someone has the answer, will I get worse if I don't take

the meds? I am really scared to walk down that path, but if someone were to say

'yes, without a doubt you will get worse' then obviously I would pop the first

tablet today, well maybe not today as I am on antibiotics for bronchitis.

Sorry for all the questions but I don't have anyone else to ask and I just feel

that the Doctors like to push the drugs more that anything else.

Thanks for listening to me.

Michele

Hi Michele,

Welcome! I take Methotrexate (inject 20mg week) and it has cleared all most

all psoriasis lesions and helps a small amount with psoriatic arthritis. If

you get RX for folic acid be sure to take as it keeps you from suffering with

hair loss.

Do you have P along with PA?

I also have spondolythesis (in my case this is a Grade II-III Spondo)...about

a 2 inch space in which the L4-L5 vertebral bodies are off. Well, one of

them is off and the other just rubs against it and causes extreme pain. Not

sure if this is what you are asking or if you are referring to PA in the

spine.

Hope you find this site as informative and helpful as I have!

Please visit our Psoriatic Arthritis Group's informational web page at:

http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse them at

your convenience.

Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can help

you out with an educated guess for an answer. If not we can at least steer you

in the right direction with a good website to go to for the answers.

Blessings and Peace,

Atwood-Stack, Founder

Alan , Web & List Editor

Jack , Newsletter Editor

Pat Bias, List Editor

Ron Dotson, List Editor

and many others who help moderate (thank you!)

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Hi ,

My name is Cheryl and I live in Ohio, USA. I was diagnosed with PA

almost 5 years ago but I've suffered with it alot longer (I've had

the psoriasis for 15 to 20 years). I've been taking the methotrexate

(MTX) along with Folic Acid every day (I admit, I forget sometimes

but I take it more than I forget it) and have been taking Vioxx for

the past year and 1/2. I've been on Celebrex (had terrible side

effects so that didn't last long), Relafen, Lodine and a

couple others that have worked for a short time and then it doesn't

anymore. The Vioxx has worked the longest w/MTX with the least amount

of side effects. With the MTX is it very important you have bi-

monthly bloodwork done so they can keep track of your liver enzymes,

sed rates, kidney functions and the like. My arthritis DR told me for

every 3 years you're on MTX they need to do a liver biopsy--which

I've had one done and they want another one done at the end of this

year. I'm not sure about your particular back condition but I know it

helps my back. I have occassional flare-ups of the sacroiliac area

(flare-up consists of feeling like I've been hit in the middle of the

lower back with a hot baseball bat and it takes pain pills and a few

days of rest before it gets back to 'normal') As you read the other

e-mails in this group, you will find ALOT of useful information on

other symptoms and medications. I only found this group a couple

months ago but I wish I would have known about/found it a few years

ago. This group will give you tips on where to find other information

and personal stories/situations that will make you laugh and

sometimes cry!! If ever you find yourself 'down' about your physical

condition, you now have a place to come to where you won't feel alone

and where others (MANY others) understand and are compassionate about

what you're going through. Go back and read through some of the

archived e-mails and you'll see what I mean. There are alot of do's

and don'ts that will be helpful...believe me.

Best of Luck to you!!

Cheryl

[Moderator's note: Quote from http://www.rxlist.com/cgi/generic/mtx_wcp.htm#OS :

" Liver function tests should be performed at baseline and at 4-8 week intervals

in patients receiving methotrexate for rheumatoid arthritis. Pretreatment liver

biopsy should be performed for patients with a history of excessive alcohol

consumption, persistently abnormal baseline liver function test values or

chronic hepatitis B or C infection. During therapy, liver biopsy should be

performed if there are persistent liver function test abnormalities or there is

a decrease in serum albumin below the normal range (in the setting of well

controlled rheumatoid arthritis). " Ron]

> Hi my name is Michele and I live in Australia, I am 38 and have

just

> been diagnosed with Psoriatic Arthritis. I quit smoking after 20

> years to become fit and healthy then ended up with this.....great!

> Anyway I have not started taking any medication as yet, apart from

> Vioxx, but my Rheumatologist had recommended Methotrexate (I think

> thats how its spelt),with folic acid (10mg per week) I have always

> been reluctant to take any medication due to side effects so I was

> wondering what you all thought of this particular drug.

>

> I have also just been told I have Spondyl...(spine thing, I have no

> clue how to spell that - you can tell I'm new at this cant you?).

> Does anyone have any experiance with this? And will the

Methotrexate

> control this area?

>

> Does anyone have any experience with controling this disease

> naturally? Lots of questions....sorry about that.

>

> Anyway, hello again,

>

> Michele

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