Questions

[Guest guest]

Thanks it sure helps, much more clear theway you explained it. thks again

Kavita

Re: questions

We have discussed with Dr G 2 ssri's at a time, becauue some things

were better on one ssri, some better on another. He said he had no

data to base it on, and asked us to inquire within the medical

research groups we have some connection with on if theoretically this

is OK. We have found no confirmation that this is known or has been

studied in depth, so right now I think it is no. (someone please

correct me if you are doing this!) We do however have our son on an

ssri and an snri. (prozac and wellbutrin) This is an OK combination.

Antifungals are switched 6 months - a year depending on how child is

doing.

My son's HHV6 titer has been good for a long time, but his ebv and

cmv are slightly high. Also, when on lower doses of antiviral, my

son starts to go downhill and his SGOT goes up (liver enzyme).

Increasing the antiviral brings this back in range. EOS and ANA

are closely monitored too.

Hope this helps

--- In groups (DOT) com, kavita mallik <kavita_d_mallik@ ...>

wrote:

>

> Hi Friends,

>

> Wondering if a child can be on more than one ssri at a time or is

that a no no. Are the antifungals are switched yearly or every 6

months. When we talk of titers going up or is it specifically hhv or

cbc in general. Wondering out loud. thks Kavita

>

>

>

>

____________ _________ _________ _________ _________ _________ _

____________ __

> Moody friends. Drama queens. Your life? Nope! - their life, your

story. Play Sims Stories at Games.

> http://sims. /

>

>

[Guest guest]

My practice is in a M.D.'s office and from our collaborations on shared patients

having someone on two strictly SSRI's is a no no. Like said, taking a

SSRI and an SNRI is okay.

>From: meljackmom <meljackmom@...>

>Date: 2007/09/16 Sun PM 07:33:04 CDT

>

>Subject: Re: questions

>

>We have discussed with Dr G 2 ssri's at a time, becauue some things

>were better on one ssri, some better on another. He said he had no

>data to base it on, and asked us to inquire within the medical

>research groups we have some connection with on if theoretically this

>is OK. We have found no confirmation that this is known or has been

>studied in depth, so right now I think it is no. (someone please

>correct me if you are doing this!) We do however have our son on an

>ssri and an snri. (prozac and wellbutrin) This is an OK combination.

>

>Antifungals are switched 6 months - a year depending on how child is

>doing.

>

>My son's HHV6 titer has been good for a long time, but his ebv and

>cmv are slightly high. Also, when on lower doses of antiviral, my

>son starts to go downhill and his SGOT goes up (liver enzyme).

>Increasing the antiviral brings this back in range. EOS and ANA

>are closely monitored too.

>

>Hope this helps

>

>

>--- In , kavita mallik <kavita_d_mallik@...>

>wrote:

>>

>> Hi Friends,

>>

>> Wondering if a child can be on more than one ssri at a time or is

>that a no no. Are the antifungals are switched yearly or every 6

>months. When we talk of titers going up or is it specifically hhv or

>cbc in general. Wondering out loud. thks Kavita

>>

>>

>>

>>

>__________________________________________________________

>______________

>> Moody friends. Drama queens. Your life? Nope! - their life, your

>story. Play Sims Stories at Games.

>> http://sims./

>>

>>

[Guest guest]

Hi-

Diflucan is switched approximately yearly, although

some have exceeded that and my boys were switched at 9

months. But a year is average. Nizoral is typically

switched around 6 months, although again some go

longer - mine went 8 months. I don't know about

Lamisil - it's generally so expensive most aren't on

it - I'm curious how it will be used when the generic

becomes available (I think it may already be?).

The SSRIs are usually only combined w/something like

Wellbutrin, and maybe Effexor (?)... but you aren't

on, say, Paxil and Zoloft at the same time. Tenex is

also used in conjunction w/SSRIs if indicated (ie

hyper, increase in obsessiveness, maybe anxiety?)...

HTH-

--- kavita mallik <kavita_d_mallik@...> wrote:

> Hi Friends,

>

> Wondering if a child can be on more than one ssri at

> a time or is that a no no. Are the antifungals are

> switched yearly or every 6 months. When we talk of

> titers going up or is it specifically hhv or cbc in

> general. Wondering out loud. thks Kavita

>

>

>

>

________________________________________________________________________________\

____

> Moody friends. Drama queens. Your life? Nope! -

> their life, your story. Play Sims Stories at

> Games.

> http://sims./

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

oneSearch: Finally, mobile search

that gives answers, not web links.

http://mobile./mobileweb/onesearch?refer=1ONXIC

[Guest guest]

Hi-

Let me first point out that I'm neither a child, nor have I been

'diagnosed' with Autism myself, rather OCD, ADHD, CFIDS-etc.

Unfortunately I'm the 'king' on psychotropic drugs- as I had been on a

total of 26 over a period of more than five years. We couldn't find

anything that would work full time or at all. I've seen five

psychiatrists over that period of time- constantly switching,

augmenting, adjusting- and so forth!

Unless things are different with children, there should not be a

problem with two SSRI's actually.

(This is my list I give to doctors when I see them.)

-LIST OF PSYCHOTROPIC MEDICATIONS STARTING FROM JULY 1999 TO PRESENT

SSRI’s

-Paxil-

1. Number of times drug trial has been repeated: -Six different times-

2. Dose amount: -25mg CR to 40mg regular release-

3. Duration of drug exposure: -Approx. 120 weeks-

4. Reason for discontinuing: -Lost therapeutic effect after approx

70-80 weeks, began causing intense anxiety and depression/crying spells-

5. Last time taken: -February 2006.

-Prozac-

Three times-As high as 80mg-Total approx. 30 weeks-Never proved any

noticeable improvement with depression or anxiety-August 2005.

-Zoloft-

Three times-200mg-Approx. 16 weeks-Proved to have little to no

noticeable effect on depression or anxiety-August 2004.

-Lexapro-

One time-10 to15mg-Approx. six weeks-Increased anxiety and

depression/crying spells-asked to stop-May 2004.

-Luvox-

One time-50mg-3 weeks-Significantly increased anxiety, depression,

suicidal tendencies, I asked to stop-Last tried approx. February 2006.

NDRI

-Wellbutrin-

Four times-300mg to 450mg XL-100 weeks-provided very little benefit,

but with few side effects-August 2006.

SNRI’s

-Effexor-

Four times-225mg XR-Approx 30 weeks-Was effective back in ’99-’00 but

has no effect on depression or anxiety now-Last tried April/May 2005.

-Cymbalta-

One time-60mg-Approx. eight weeks-No improvement in depression or

anxiety to any degree-June 2005.

NaRI

-Strattera-

One time-100mg-Approx. 9 weeks-No change or effect on depression or

anxiety-Last taken July 2005.

5-HT2 ANTAGONIST-SNaRI

-Nefazodone-

One time-300mg to 400mg-Approx. 10 weeks-No improvement in depression

and anxiety, caused three weeks of nausea, visited ER-Last taken

January 2006.

TETRACYCLIC/ NaSSA

-Remeron-

One time-45mg-Eight weeks-No improvement in depression or anxiety-Last

taken November 2005.

TRICYCLIC

-Imipramine-

One time-75mg to 150mg-Approx. 15 weeks-Initially had significant

improvement in both depression and anxiety but lost all effect about

six/eight weeks-Last taken in August 2004.

-Amytriptyline-

One time-Approx. 300mg-Little to no improvement in depression and

anxiety-Side effects of dry mouth, tremor, inability to urinate, and

stuttering occurred-Eight to Nine weeks-Last taken June 2006.

MAOI-b

-Selegiline-

One time-Approx. 30mg-Approx. four weeks-Seemed to increase

depression/crying spells-Last taken November/December 2005.

MAOI-A & B

-Parnate-

One time-currently 60mg-four weeks-slight decrease in

depression/anxiety-no significant side effects (Currently taking Nov.

2006.)

ATYPICAL-ANTIPSYCHOTICS

-Seroquel-

Three times-25mg to 100mg-Approx.-was taking 100mg at bed, helped

sleep, weight gain and little benefit with mood stability-September 2006.

-Zyprexa-

Two times-10mg-Approx. 20 weeks-Caused significant weight gain, at

first ineffective with depression then worsened of depression/crying

spells-Last taken December January 2005.

-Risperdal-

Two times-1mg-Approx. eight weeks-Caused over sedation, concentration

problems-February 2005.

-Geodon-

One time-Two 20mg doses-Less than one week-Caused me to become

severely sick (vomiting), severe agitation, severe confusion,

accelerated heart rate, crying spells, had to call the doctor/ER,

recommended taking Benadryl-September 2005.

-Abilify-

Two times-10mg-Two weeks-Caused severe pain, and muscles to freeze up,

making movement extremely difficult-Last taken 2005

-Symbyax-

One time-6/25mg to 12/50mg-10 weeks-Had no improvement in depression

or anxiety, caused weight gain-October 2005.

STIMULANTS/ WAKENING AGENTS

-Adderall-

One time-30mg XR-four weeks-Had only slight improvement with

depression and drive-May 2005.

-Ritalin-

One time-40mg XR-four weeks-Had only slight improvement with

depression and drive-April 2005

-Provigil-

One time-200mg-four weeks-Had no improvement in depression or

drive-March 2005. (Currently taking-200-400mg, Nov. 2006)

ANTI-ANXIETY

-Buspar-

One time-Approx. 10mg-four weeks-I don’t remember what my reaction was

to it-Last taken back in October 2000.

ANTICONVULSANTS/ AUGMENT ANTI-DEPRESSENT TREATMENT

-Lithium/Eskalith CR-

One time-3,000mg lithium, 1,800 Eskalith 450CR-Approx. 56 weeks-1.2

blood/serum level-Effective with depression first 10-15 weeks, but

became less effective as time went on, made my fatigue much worse,

weight gain-Last taken September 2005.

-Lamictal-

Two times-100mg to 300mg-20 weeks-Dramatic increase in anxiety and

depression, severe increase in suicidal feelings, and flu-like

sickness. I went to the ER then put in the psych. Hospital for 96

hours due to suicidal ideation in 2004-Last taken April 2006.

(Currently taking-tolerating it well this time. 300mg-working fairly

well, Nov. 2006.)

-Depakote-

Two times-500mg to 2,000mg ER-20 weeks-Weight increase, had no

improvement on depression, anxiety-May/June 2004.

-Neurontin-

One time-3,000mg-eight weeks-Slight benefit/improvement with mood, too

expensive to afford-Last taken March 2003.

Needless to say I had tried so many medications the doctors and I were

just

trying random things at a certain point. I have been on all but one

of the SSRI

medications, and some as many as nine different times...

There were a few times where I would be on a SSRI- feel it wasn't

working so the doctor would decrease that does and tapper me over to a

different SSRI.

There was a period of time on at least one where I felt I noticed an

improvement on two SSRI's at once. Paxil and Zoloft were the two. I

discussed it with the doctor about taking both. She said it was

'highly unusual,' however if it worked, it worked. It was better than

taking a lot of the other things I was having to take if it DID prove

effective. I would simply have to lower the dose of the two as they

both are supposed to be working on the same Neurotransmitter/receptor

sites in the brain. So I did that for a time. So- yes in fact if you

are an adult it is OK to do- just unusual and typically seen as

'over-kill;' but if it works it works.

SSRI's don't have a lot of interactions that is why they are the first

drugs of choice. I myself have ended up doing best on the 'forbidden'

MAO-I Parnate which is rarely used at all today.

You can also go to 'Drugs.com' or 'Walmart.com'-(pharmacy area) and

they both have ways to type in medications and tell you if there would

be an interaction.

But from my understanding (and I've learned a LOT playing this game)

it should be OK if you decide that is the only thing that works.

- :-)

Hope that helps. Let me know if you have any other questions since I

have such first hand experience taking them.

> >

> > Hi Friends,

> >

> > Wondering if a child can be on more than one ssri at a time or is

> that a no no. Are the antifungals are switched yearly or every 6

> months. When we talk of titers going up or is it specifically hhv or

> cbc in general. Wondering out loud. thks Kavita

> >

> >

> >

> >

> ____________ _________ _________ _________ _________ _________ _

> ____________ __

> > Moody friends. Drama queens. Your life? Nope! - their life, your

> story. Play Sims Stories at Games.

> > http://sims. /

> >

> >

[Guest guest]

I get serious GI problems when I am exposed to mold and they can leave

me really ill for days, then they disappear and nothing shows up on

tests, culture wise.

It is driving me crazy. I take probiotics and lactoferrin, which help,

but I still get it if I forget to take them. Actually, thinking about

it, I have gotten it (just not as bad) even when I have been taking

them.

I don't have any idea what the hell it is. Its not constitpation

because it happens even when I am not constipated. It is a nasty

feeling that just comes on and hurts a very great amount in my gut

that is associated with a spasming feeling and lack of motility.

So, sign me up with Sue as wanting to know about ANYTHING that could help.

What is Canasa?

On Nov 25, 2007 9:35 AM, <ssr3351@...> wrote:

>

> I have to talk to my GI Dr. this week and want to be able to explain to him

> my illness so he will take me seriously and understand how it affects the

> GI

> tract. Can anyone briefly explain why and how toxins bind with CSM in the

> body/gut and are then eliminated. I occasionally have some irritable bowel

> problems that I feel certain are due to the mold.

> He has given me an Rx for Canasa before which has really helped.

> Thanks for your help.

> Sue

>

[Guest guest]

Canasa is a suppository that the Dr. gave me when I had colitis which REALLY

helped a lot. Symptoms where gone within the week. Great medication. Maybe

you could get your Dr. to write an Rx for some. Look it up for some info about

it.

I do know that mold exposure causes inflammation and I think that's what

causes most intestinal problems.

Sue

What is Canasa?

**************************************Check out AOL's list of 2007's hottest

products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

[Guest guest]

i'd like to offer a suggestion of taking a digestive enzyme called

" Total Gest " . take 1 with each meal to start. here's the product

description on a website:

" Longevity Science Total Gest is a full-spectrum enzyme formula that

may aid in digestion. Total Gest is specifically formulated to provide

the widest range of useful digestive enzymes to help break down foods,

absorb nutrients and prevent maldigestion, gas, and bloating. Optimum

digestion involves breaking down more than starch, protein, fiber, and

fats. Some food groups need several types of enzymes to become fully

digested and to allow all the nutrients to be available for

assimilation.

There are many health problems associated with incomplete digestion,

including malnutrition from insufficient breakdown of the nutrients in

food to a state where they can be properly absorbed into the blood and

utilized by the body. In addition, the larger, incompletely broken

down food particles may still enter the bloodstream in individuals

from a common condition known as " leaky gut syndrome " in which the

mucosa of the intestines has been damaged. Once in the blood, these

large particles are attacked by the immune system as invaders,

creating immune reactions leading to many health problems, from

allergies to arthritic damage. "

shoot me an email if you're interested in taking it, and i'll point

you to the company where i purchase mine from.

--- In , LiveSimply <quackadillian@...>

wrote:

>

> I get serious GI problems when I am exposed to mold and they can leave

> me really ill for days, then they disappear and nothing shows up on

> tests, culture wise.

>

> It is driving me crazy. I take probiotics and lactoferrin, which help,

> but I still get it if I forget to take them. Actually, thinking about

> it, I have gotten it (just not as bad) even when I have been taking

> them.

>

> I don't have any idea what the hell it is. Its not constitpation

> because it happens even when I am not constipated. It is a nasty

> feeling that just comes on and hurts a very great amount in my gut

> that is associated with a spasming feeling and lack of motility.

>

> So, sign me up with Sue as wanting to know about ANYTHING that could

help.

>

> What is Canasa?

>

[Guest guest]

Is Canasa an antifungal?

Barth

---

sac> I have to talk to my GI Dr. this week and want to be able to explain to him

sac> my illness so he will take me seriously and understand how it affects the

GI

sac> tract. Can anyone briefly explain why and how toxins bind with CSM in the

sac> body/gut and are then eliminated. I occasionally have some irritable bowel

sac> problems that I feel certain are due to the mold.

sac> He has given me an Rx for Canasa before which has really helped.

sac> Thanks for your help.

sac> Sue

sac> **************************************Check out AOL's list of 2007's

hottest

sac> products.

sac> (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

sac>

[Guest guest]

No, Canasa is an anti-inflammatory used to treat colitis and other similar

bowel problems.

Sue

**************************************Check out AOL's list of 2007's hottest

products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

[Guest guest]

Interesting, but do you take CSM along with the Ortho Digestzyme?

Sue

My understanding is that toxins are removed by the liver and sent back

to the digestive tract via the bile. Without CSM to bind the bile, the

toxins are reabsorbed, keep recirculating and, I suppose, irritating

the gut (plus doing lots of damage to the body!). The CSM will bind

with the bile salts and remove them from the body, removing the toxins

with them.

Another way in which toxins cause gut problems is in that MSH is

lowered. MSH is required for healthy mucous membranes--includinlowered. MSH is

I would also recommend digestive enzymes. I have tried some to which I

react--I think because they are derived from mold. Recently I started

a product called Ortho Digestzyme, prescribed by a mold knowledgeable

professional. I have been using it for about 3 weeks and notice a huge

improvement in my symptoms.

**************************************Check out AOL's list of 2007's hottest

products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

[Guest guest]

Taking your CSM is so important!!!!! I've been taking it for 4 yrs. and

hardly ever missed a dose. If I have missed one during the day I have set my

alarm for the middle of the night just to get it in!! I stay fairly well except

I

still have short term memory problems but nothing as severe as it was. I also

stay tired I just can't do too much in one day or it wipes me out. Like the

evening of Thanksgiving Day. After getting everything ready, setting the table

(which I did the day before), cleaning up I felt like I'd been run over.

But I have no more muscle/joint pain, headaches, twitches, thirst, itchy skin,

etc.

Sue

Thanks for reminding me to take my cholestyramine!

**************************************Check out AOL's list of 2007's hottest

products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

[Guest guest]

My understanding is that toxins are removed by the liver and sent back

to the digestive tract via the bile. Without CSM to bind the bile, the

toxins are reabsorbed, keep recirculating and, I suppose, irritating

the gut (plus doing lots of damage to the body!). The CSM will bind

with the bile salts and remove them from the body, removing the toxins

with them.

Another way in which toxins cause gut problems is in that MSH is

lowered. MSH is required for healthy mucous membranes--including the gut.

I would also recommend digestive enzymes. I have tried some to which I

react--I think because they are derived from mold. Recently I started

a product called Ortho Digestzyme, prescribed by a mold knowledgeable

professional. I have been using it for about 3 weeks and notice a huge

improvement in my symptoms.

>

> I have to talk to my GI Dr. this week and want to be able to explain

to him my illness so he will take me seriously and understand how it

affects the GI tract. Can anyone briefly explain why and how toxins

bind with CSM in the body/gut and are then eliminated. I occasionally

have some irritable bowel problems that I feel certain are due to the

mold.

He has given me an Rx for Canasa before which has really helped.

Thanks for your help.

Sue

>

> **************************************Check out AOL's list of 2007's

hottest

> products.

>

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

>

>

>

[Guest guest]

I like to buy semi generic products from reputable national brands at

large chain stores, which often are as good or better quality and are

sold at much lower costs than the Named Products that you describe SO

completely.

On Nov 25, 2007 6:47 PM, xhannahx24 <xhannahx24@...> wrote:

>

> " i'd like to offer a suggestion of taking a digestive enzyme called

> " Total Gest " . take 1 with each meal to start. here's the product

> description on a website:

>

> " Longevity Science Total Gest is a full-spectrum enzyme formula that

> may aid in digestion. Total Gest is specifically formulated to ... "

[Guest guest]

Hi ,

I've noticed that digestive enzymes help me a lot too. I take these

generic pills that contain

a little papaya enzyme in them after meals, and sometimes some with betaine hcl.

Every vitamin store stocks three or four brands. They are all pretty

much the same.

The acidophilus pills are a little more difficult to find strong ones.

You need to shop around but

they don't need to be expensive, just find a brand that works and stick with it.

Thanks for reminding me to take my cholestyramine!

On Nov 26, 2007 7:32 AM, <smarshwar@...> wrote:

>

>

> My understanding is that toxins are removed by the liver and sent back

> to the digestive tract via the bile. Without CSM to bind the bile, the

> toxins are reabsorbed, keep recirculating

> I would also recommend digestive enzymes. I have tried some to which I

> react--I think because they are derived from mold. Recently I started

> a product called Ortho Digestzyme, prescribed by a mold knowledgeable

> professional. I have been using it for about 3 weeks and notice a huge

> improvement in my symptoms.

>

>

[Guest guest]

Thanks Live,

My doctor recommended enzymes years ago but when I tried them I had

bad reactions. Then, on my own, I discovered that many are derived

from aspergillis! The Ortho Disgestzyme has bromelain, papain and

betaine along with others for digestion of proteins, fats and

carbohydrates.

I would love to save money, but I just don't think I can go through

any more " testing " and discomfort to find the right formula. This one

seems to work. Yeah!

--- In , LiveSimply <quackadillian@...>

wrote:

Hi ,

I've noticed that digestive enzymes help me a lot too. I take these

generic pills that contain

a little papaya enzyme in them after meals, and sometimes some with

betaine hcl.

Every vitamin store stocks three or four brands. They are all pretty

much the same.

The acidophilus pills are a little more difficult to find strong ones.

You need to shop around but

they don't need to be expensive, just find a brand that works and

stick with it.

Thanks for reminding me to take my cholestyramine!

[Guest guest]

I am currently using Dr. Kolb's protocol and having a lot of digestive problems.

I am interested in understanding this issue and last night discovered that a

deficiency in vitamin B12 can cause diarrhea. Autistic children also have

problems absorbing vitamin B12 and I wonder what the connection is.

I am also doing chlorine dioxide as part of her protocol and it kills all bad

pathogens but my digestive problems get worse after doing this and I have had to

stop three or four times already. Yesterday I started a powerful probiotic and

it seemed to help.

Sharon Hanson

Re: [] Re: questions

Interesting, but do you take CSM along with the Ortho Digestzyme?

Sue

My understanding is that toxins are removed by the liver and sent back

to the digestive tract via the bile. Without CSM to bind the bile, the

toxins are reabsorbed, keep recirculating and, I suppose, irritating

the gut (plus doing lots of damage to the body!). The CSM will bind

with the bile salts and remove them from the body, removing the toxins

with them.

Another way in which toxins cause gut problems is in that MSH is

lowered. MSH is required for healthy mucous membranes--includin lowered. MSH is

I would also recommend digestive enzymes. I have tried some to which I

react--I think because they are derived from mold. Recently I started

a product called Ortho Digestzyme, prescribed by a mold knowledgeable

professional. I have been using it for about 3 weeks and notice a huge

improvement in my symptoms.

************ ********* ********* ********Check out AOL's list of 2007's hottest

products.

(http://money. aol.com/special/ hot-products- 2007?NCID= aoltop0003000000 0001)

[Guest guest]

No, I usually take CSM 1/2 or more before meals. Sometimes I take CSM

one hour after I eat, but that's rare for me. Then, I was instructed to

take the Ortho Digestzyme after I have eaten a little bit of food and

continue my meal.

>

>

> Interesting, but do you take CSM along with the Ortho Digestzyme?

>

> Sue

[Guest guest]

Where do you get the Ortho Digestzyme from a Dr. or OTC?

I'm like you I have always taken my CSM 1/2hr. to an hr. before eating.

Sue

No, I usually take CSM 1/2 or more before meals. Sometimes I take CSM

one hour after I eat, but that's rare for me. Then, I was instructed to

take the Ortho Digestzyme after I have eaten a little bit of food and

continue my meal.

**************************************Check out AOL's list of 2007's hottest

products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

[Guest guest]

I got it from the doctor although I notice that it is available online

from companies other than the manufacturer. In fact, I just ordered

some today through my doctor and was told that they are reformulating

it from a tablet into a capsule and making a few changes-on Friday. I

ordered the old formula. It seems to be just my luck that they change

something when I " find " it! But, I will try the new formula when I run

out.

-

>

>

> Where do you get the Ortho Digestzyme from a Dr. or OTC?

> I'm like you I have always taken my CSM 1/2hr. to an hr. before eating.

>

> Sue

[Guest guest]

mmmkay. this is the 3rd digestive enzyme i've tried ( & best by far)

since it has more ingredients than most digestive enzymes per capsule:

Amylase 12,000 DU

Protease 58,000 HUT

Lipase 1,000 LU

Cellulase 1,500 CU

Glucoamylase 20 AGU

Invertase 100 SU

Bromelain 500,000 PU

Papain 500,000 PU

Alpha-Galactosidase 120 GALU

Pepitdase FP 2,000 HUT

Maltase 200 DP

Lactase 600 ALU

Phytase 4.5 FTU

Hemicellulase 260 HCU

Other Ingredients: Maltodextrin, rice flour, cellulose. Contains no

wheat, soy, artificial colors, artificial flavors. No animal products.

Vegetarian capsules.

> >

> > " i'd like to offer a suggestion of taking a digestive enzyme called

> > " Total Gest " . take 1 with each meal to start. here's the product

> > description on a website:

> >

> > " Longevity Science Total Gest is a full-spectrum enzyme formula that

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[Guest guest]

Hi Jen,

It sounds like your daughter had a really good check up.

The doctor said for right now everything is fine not to worry and he will see

heck her again in a year to see if intervention is needed. All good stuff.

You can ask him for a referral to an orthopedist. The neurologist and

orthopedist will keep in touch as needed and make decisions with you. I love my

orthopedist so my kids have only had to see him. I have seen several but only 2

have done surgery on me when it was needed.

[Guest guest]

Jen,

Yes, an orthopedist (especially one specializing in pediatrics) could

be of important value since your daughter is so young. That's because

early intervention can mean all the difference in years to come. Also

important for her and the others in the family to know what 'type' of

CMT it is, and therefore when clinical trials open, they could

participate.

Your daughter might benefit from an orthopedist who can refer you to

an orthotist who can analyze her gait and determine if a certain shoe

would be of benefit, perhaps also in-shoe orthotics.

I was 7 when I first showed symptoms. Three years later I had soft

tendon surgery that has lasted 45 years and thus far it's been a wonderful life.

I was a toe walker too. Being leery of surgery is prudent of course, as is

obtaining several opinions if it is indicated. But the pain can be managed with

physical therapy/play, rest, medications, Vitamins C and E, and as we are

learning from , her children are showing positive effects from Citicoline.

You may want to read the information in our files section about Ascorbic Acid

(Vit C), Citicoline, and Vit E plus other information.

Seems like your neurologist sort of blew you off - either that or he/she is

stupid. people are a great resource for doctors, orthotists, shoes, and

much more. If you want to find a neurologist or orthopedist in your area that

knows CMT, ask us, someone is sure to jump in. Then there are also a handful of

'CMT Expert' doctors around the USA that might be worth traveling to for

evaluation and more information.

Let me say that CMT IS a big deal at first. Knowledge is power so read and

absorb all you can and stay current with research. If your daughter needs help

at school, an IEP plan can be set up. I grew up in an era without the Net and a

world of information, so I lived a very mainstreamed life. I believe that 3

exercises consistently have helped me through the years: biking, swimming, and

walking in sand.

Gretchen

[Guest guest]

Hi Jen,

I would get another neurologist as CMT is a big deal and there is more to it

then just do exercises and see you in a year. It doesn't sound like her leg

pain was even discussed.Personally, I think that a neurologist and a orthopedic

are both needed and that they both need to understand CMT. I would like to

suggest that you post again and let the group know

where you are from and hopefully someone will be able to suggest docs

to you.

I totally understand your nervousness in finding the right docs. When we began

trying to figure out what was wrong with my son, an orthopedic doc mentioned CMT

and suggested we take him to a neurologist. The first neurologist look at my

son's foot, told him to walk and told us that he saw nothing that lead him to

believe that our son had CMT - at this time my son's arch was really high, he

walked on the outside of his foot and couldn't physically put his foot flat. I

went to another neurologist and he looked at my son's foot and I knew he knew

what was wrong. He then did the EMG and another test and by those results was

convinced that he had CMT and sent him for the genetic testing. We were

fortunate that after he got the results he sent us to another neurologist who

specialized in CMT and that neurologist was able to recommend an orthopedic doc

who specialized in CMT who did the surgery.

I know it can be overwhelming learning about it. There are so many kind, caring

people who belong to this group who totally understand what you are going

through and how you feel and are more than willing to help you through this.

Take care

Carmella

[Guest guest]

Jen,

You could talk to your local chapter of MDA and have them recommend a

dr who was familiar with CMT.If she's running around and playing etc,

her CMT is not that bad yet. The dr wants to monitor her progress and

see what is needed.

Also CMT is not the same for everyone. Some have fairly mild cases and others

have more severe ones. I have a good friend who has CMT. He has 4 kids and 3 of

them have CMT. All 3 wore AFOs at a fairly young age. Now as teens and preteens

none wear them.

His oldest kid, a teenage girl, probably needs them but doesn't want them.

So he is letting her make that decision. All of the kids have been

active in t ball, softball, and for his girl, ballet. Let the drs

decide what is best for your daughter. Be a good parent but don't try

to read too much into everytime she falls down or has a leg ache. Some

of those leg aches could be growing pains after all.

I had braces too as a kid and then was out of them for a while. I was totally

mainstreamed as the group owner stated she was. I wasn't the best athlete but I

tried and had a great time growing up. Watch for CMT symptoms in your daughter

but let her be a kid too.

Bob

[Guest guest]

Hi Jen!

My son was diagnosed at age 9. A toe walker and skinny legs as

well. It was an orthopedist who suggested we find a neurologist

before we considered heel cord surgery because he wanted to rule out

muscular dystrophy before he did surgery on healthy muscle. We went

to a neurologist, very reputable man, who physically evaluated

and said that he was o.k, for surgery , but he ordered a muscle

biopsy. So, we went back for the surgery and the biopsy.

The biopsy showed atrophy, but the neurologist said their was nothing to be

concerned about. The surgery worked for about 18 months and we knew something

was wrong as he started to walk up on his toes again. We pursued another visit

with the ortho, who said emphatically it was

neurological and we sought another physician. Our current

neurologist has been such a blessing. He is a pediatric neurologist

and he immediately ordered genetic testing. The rest as they say....

He set up on 6 month visits to him for the first year, to

observe any progression. He wanted to get to know so he could

provide more comprehensive care. In my opinion, your daughter's

doctor suggesting exercise and see ya in a year is a little bit

cavalier in his approach. Unfortunatley for my son, he was back to

the doc in 3 months and has pretty much seen him every 3-6 months

since then as his CMT has progressed rapidly.

Carmella hit the nail right on the head...you need to have an ortho

and a neurologist manage the progression (if any) in your daughter's

CMT. had his first osteotomy in January which was a huge

success. He is currently recuperating from his 2nd one (done on the

other leg) which was done on June 10th. The doc is confident that

this foot will turn out as good as the other. Hopefully your child

will not require surgery.

Let her play and do as she feels she can. Trust her judgement when

she says she's tired or you notice alot of fatigue after a busy day.

loved to ride his bike and scooter. He enjoyed all the normal

things boys do. Also, growing pains can be really difficult for kids

with CMT. We rushed our son to the ER 3 times for such severe cramps

we thought he had developed blood clots or something.

Sorry this is so long....I hope it helps to offer some insight to

things you may want to think about with the doctor....