Re: Teeth (8) MDS

[Guest guest]

I don't think i really have insight on your particular situation, BUT, my

son with MDS has had the 'strangest' teeth. His fell out late, grew in slow,

and actually, many had to be pulled, because his adult teeth would actually

grow in BEHIND the baby teeth, rather than under them.

He kinda liked been called Shark Boy though!!

Angel

mom to , 15

Tyler, , Jaeda and Shayne

And LANCE, who informed me last week, I need to come up with a cute name for

" grandma " .

In a message dated 8/27/2008 7:34:13 P.M. Mountain Daylight Time,

twbaslee@... writes:

s top 2 teeth on either side of big teeth (adult) are coming in

VERY SLOWLY and now it looks like they have even receded back into the

gums some. Also the same teeth on the bottom are also coming in slowly.

If any one has had similar issues please let me know. I don't know what

to do. Also she says it hurts when I brush any of those 4 teeth.

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[Guest guest]

My husband says, " Sounds normal to me for age 8. " (He's a retired dentist who

specialized in gnathology, crown and brige, and orthodintics.)

Judie, mom to Christi, 29 and others

**************

It's only a deal if it's where you want to go. Find your travel

deal here.

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[Guest guest]

Oops, that's " orthodontics, " not " orthodintics, " which might be a new

specialty that deals with dinky teeth.

Judie, mom to Christi, 29 and others

**************

It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

Hi,

I know my son 's baby teeth came in very slowly. He got his first

tooth at 17 months! See if you can find a good pediatric dentist.

From: MosaicDS [mailto:MosaicDS ] On Behalf

Of twbaslee

Sent: Wednesday, August 27, 2008 9:34 PM

To: MosaicDS

Subject: Teeth (8) MDS

s top 2 teeth on either side of big teeth (adult) are coming in

VERY SLOWLY and now it looks like they have even receded back into the

gums some. Also the same teeth on the bottom are also coming in slowly.

If any one has had similar issues please let me know. I don't know what

to do. Also she says it hurts when I brush any of those 4 teeth.

[Guest guest]

a has had problems with her teeth as well.  2 upper and 2 lower ones have

been out for a year and are just slowly creeping in. She has had extensive work

done as well in the past 6 months.  5 crowns, 2 fillings, and then 1 tooth had

to be pulled    I'm afraid more work may still need to be done because the ones

that are finally growing in look as if they have no room to do so.   Hope

everything works out for you and ..

 

Tina

Subject: Re: Teeth (8) MDS

To: MosaicDS

Date: Thursday, August 28, 2008, 4:00 AM

Oops, that's " orthodontics, " not " orthodintics, " which might be a new

specialty that deals with dinky teeth.

Judie, mom to Christi, 29 and others

************ **

It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information. travel.aol. com/deals? ncid=aoltrv00050 000000047)

[Guest guest]

Judie -

Orthodintics - dinky teeth - is what has! She has got braces on her

dinky teeth and you should see me trying to clean between the braces ;-)

Darlene

> Oops, that's " orthodontics, " not " orthodintics, " which might be a new

> specialty that deals with dinky teeth.

>

> Judie, mom to Christi, 29 and others

>

> **************

> It's only a deal if it's where you want to go. Find your travel

> deal here.

>

> (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

>

>

[Guest guest]

Hannah is my " Orthodontic nightmare " .... her teeth did come in about the time

they should as she grew up however, the x-rays show her teeth to be growing in

very crooked, crowded and some 'missing' ... instead of painful extractions to

make room for the permanent teeth we are doing the expander and then a Bianator

to move her jaw back in place after the expanders make the room. this is painful

but just until she gets used to the appliance. we are about 1 year or less away

from the braces to help straighten the teeth. seems to take a while for her

teeth to become loose and then longer to come back in once she does lose them.

her one eye tooth she lost over a year ago and we have yet to see the new

one.... according to the x-rays it is there.... some of her teeth were small and

the new ones are looking that way too. smaller than 'normal' but still

functional. no cavities but I am a stickler about brushing teeth and making

regular visits to the dentist!

she injured her front teeth when she was about 2 1/2 and we took her to a

pediatric dentist as an ER patient since she bled so bad and the teeth in front

were very loose. after seeing him for about 6 - 8 weeks to confirm her teeth had

're-set themselves' we then stopped seeing him and went to a regular dentist and

she has been fine. nothing against pediatric dentists, just made the decision on

facts they did not accept the insurance in full and our dentist does and works

with kids. so no funny toys and painted rooms but mostly the same treatment. she

has adapted well with the dentist and the orthodontist and the appliances she

has to wear. she has lost both types of appliances , the expanders SEVERAL times

since you wear those 24/7 including eating (only out to brush behind them and

brush them) he bionator is a 24/7 except for eating. the new things they come

out with starting kids on an earlier regiment seem to help in the long run

(while their jaws mouth and teeth are still growing and are better for them.

they can pick what colors they want the appliance to be! getting the kids

involved in their dental and orthodontic plans is helpful too, not so much

fussing over 'why' or 'not again' ... just routine and habit after a while like

brushing teeth. hope this helps..

her dentist and orthodontist said kids with Down Syndrome tend to have teeth

issues (crooked, missing, crowding etc.... also jaw issues and tongue issues.

the ones with the tongue thrusting have more jaw and overbite/underbite issues

from the tongue thrusting outwards and the jaw 'settles' into a pattern,

breaking the habit and correcting this helps greatly for those that can some

however cannot due to a larger tongue. I am wondering now if due to Hannah's

Mosaic Down Syndrome (with a translocation) could this be why she has such teeth

issues? my family and husbands family do not seem to have many teeth issues nor

did anyone have braces on either side. grinding our teeth is big or TMJ (from

stress and grinding teeth) a few have an overlapped or 'fang' tooth or tight

together and some have pushed in teeth not like an over or underbite but when

closed tightly the teeth seem pushed backwards going into the mouth. and we all

have cavities.... why I enforce BRUSHING brushing and BRUSHING, flossing and

rinsing to! we still eat sweets and chew gum! ~Holly~

Re: Teeth (8) MDS

To: MosaicDS

Date: Thursday, August 28, 2008, 4:00 AM

Oops, that's " orthodontics, " not " orthodintics, " which might be a new

specialty that deals with dinky teeth.

Judie, mom to Christi, 29 and others

************ **

It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information. travel.aol. com/deals? ncid=aoltrv00050 000000047)

[Guest guest]

Tina -

We had to get a jaw expander for (turn it twice a day) so she could

get more room in her mouth - That is now done but we have 2 years of braces

- I thought I was done with the soft baby food and cutting up her food

really tiny - but not anymore.

Darlene - Mom to (11) and (9)

On Thu, Aug 28, 2008 at 9:35 AM, Tina Swann wrote:

> a has had problems with her teeth as well. 2 upper and 2 lower

> ones have been out for a year and are just slowly creeping in. She has had

> extensive work done as well in the past 6 months. 5 crowns, 2 fillings, and

> then 1 tooth had to be pulled I'm afraid more work may still need to be

> done because the ones that are finally growing in look as if they have no

> room to do so. Hope everything works out for you and ..

>

> Tina

>

>

>

> From: jhockel@... <jhockel%40aol.com> <jhockel@...<jhockel%40aol.com>

> >

> Subject: Re: Teeth (8) MDS

> To: MosaicDS <MosaicDS%40yahoogroups.com>

> Date: Thursday, August 28, 2008, 4:00 AM

>

> Oops, that's " orthodontics, " not " orthodintics, " which might be a new

> specialty that deals with dinky teeth.

>

> Judie, mom to Christi, 29 and others

>

> ************ **

> It's only a deal if it's where you want to go. Find your travel

> deal here.

>

> (http://information. travel.aol. com/deals? ncid=aoltrv00050 000000047)

>

>

[Guest guest]

Hi Holly..just joining in and this is not really pertaining to teeth,

but i do have a question for you. My daughter Macie also has MDS w/a

translocation. She is just at 10mths old. I know a lot of people in

the group don't like going off of percentages, but her percentage was

15% MDS. She has done everything on target and is growing as

a " normal " child would. I've actually had people comment on

how " smart " she is compared to their " normal " children...and these

are people that don't realize she has a diagnosis. Would you mind

giving me a little insight on how your " Hannah girl " is doing and

what you were told as to her prognosis? OH..and as far as Macie's

teeth thus far, she is cutting her 5th one right now and everything

seems fine with them.

>

>

> Subject: Re: Teeth (8) MDS

> To: MosaicDS

> Date: Thursday, August 28, 2008, 4:00 AM

>

> Oops, that's " orthodontics, " not " orthodintics, " which might be

a new

> specialty that deals with dinky teeth.

>

> Judie, mom to Christi, 29 and others

>

> ************ **

> It's only a deal if it's where you want to go. Find your travel

> deal here.

>

> (http://information. travel.aol. com/deals? ncid=aoltrv00050

000000047)

>

>

[Guest guest]

Charlie Hart's teeth are mega crowded and he desperately will need

braces. I had braces myself (27 years ago) for the same condition

except my teeth became buck teeth instead of crowding themselves out.

Way back then, they pulled teeth and I lost two perfectly good teeth;

now, they widen the palate of the mouth intead of pulling teeth,

which is essentially our problem in my family (high arched palates).

He is 5 now and he has not lost any, but one or two are beginning to

get loose. He was what I consider " late " getting his teeth, but once

they started coming in, they popped in everywhere.

There seems to be a universal issue with my children though; the

bottom two central incisors invert in like a " V " (husband's genes)

and then all the girls have a tooth that does not or has not after

years and years fully grown down. The dentist (a couple

of years ago) said it had not finished coming in; well, I think it

has done all it is going to do....it seems like it is an eye tooth or

close to the eyetooth on the top right side. I just chalk it up to

our certain mosaic " genes " and smile and go on (except when I think

about the cost for braces for all of them (about $125/month for at

least 24-36 months for each of my five children....then I freak

out...) Someone said Medicaid would cover the cost of braces if the

dentist documented it correctly and it interfered with their facial

appearance (no duh?) or another " valid " reason. " Speech " issues

seemed like a valid reason to me for Charlie Hart, but his dentist

would not do it for that reason and felt it was not a good enough

reason for Medicaid (?). I need to find another dentist in the area I

moved to and try again, but then again, we were also told that

certain teeth had to be lost before even considering braces.

<br>

>

> s top 2 teeth on either side of big teeth (adult) are coming

in

> VERY SLOWLY and now it looks like they have even receded back into

the

> gums some. Also the same teeth on the bottom are also coming in

slowly.

> If any one has had similar issues please let me know. I don't know

what

> to do. Also she says it hurts when I brush any of those 4 teeth.

>

>

[Guest guest]

Is this a " balanced translocation " /MDS?

If so, then I can see why everything is " normal " or should I use the

word " typical " when compared to other children?

Children with MDS have a tendency towards " normal cell lineage " and I

know a lot of people do not like percentages either, but with 15%,

that " is " a low number and I can see it getting even lower in years

to come (more likely than not) (P.S. " Medical Care in Down Syndrome "

by and , page 16, for the " changing cell lines towards

normal cell lineage " reference)<<<<And yes, I am meaning that you

essentially become " less Mosaic " with age, if that is how you want to

look at it....that " is " what the authors are insinuating by their

statements in this book. So, my assumption would be that 15% is not a

very high percentage and the likelihood of an excellent outcome for

your child would be great; although, I want to add here that I have

no idea if this 15% is in the skin/brain cells or the blood cells or

both in your child. The outcome depends greatly on where the cells

are located in your child. BUT it sounds to me that your child is

developing nicely. Congrats! :0)

SUSan <br>

> >

> > From: jhockel@ <jhockel@>

> > Subject: Re: Teeth (8) MDS

> > To: MosaicDS

> > Date: Thursday, August 28, 2008, 4:00 AM

> >

> > Oops, that's " orthodontics, " not " orthodintics, " which might

be

> a new

> > specialty that deals with dinky teeth.

> >

> > Judie, mom to Christi, 29 and others

> >

> > ************ **

> > It's only a deal if it's where you want to go. Find your travel

> > deal here.

> >

> > (http://information. travel.aol. com/deals? ncid=aoltrv00050

> 000000047)

> >

> >

[Guest guest]

So sorry I went on and on about teeth...LOL guess my brain cells were out to

lunch?? as for hannah she was told she was at 10% affected and they could study

each cell, blood brain other tissues etc.. however they detected this in her

blood since she had leukemia and they did a further study on her after they

noted the trisome 21 and translocation. at her two year old pictures I noted she

looked as if she had the down syndrome look a typical round jolly smiing face

and turned up corners at her mouth and eyes.. her doctor was very interested at

this point to do further testing and the out come was 10% 'overall' cells

affected. Hannah has alwasy been right on target for most things and never

really lagged behind other than teeth issues. she was a projectile vomiter from

birth until she began solid foods and then was a chronic constipation and still

suffers from time to time with bouts of severe consipation. this I was told was

a direct link to her trisome 21. she never sucked her thumbs or her 'binkies'

for very long and was easy to bottle break and same for switching from breast to

bottle to sippy cup and on.. she learns very well and adapts to most anything

and to look at her one would never know unless I told them or they knew her

medically. she is bright but she frustrates easily and gets migrains.... we are

just playing them out with a small can of caffeine pop and maybe a bit of quiet

time and a laydown or cool cloth on her head, so far this works and we are not

sure what this could be related to.. her past leukemia treatments? the MDS? just

stress.. she has gone through many changes since diagnosisi, death of

grandmother and several friends who had cancer, her father passed suddenly 2

years ago at work, we are building on to our house and I am in school for

nursing and now I am dating a wonderful man... so she has had many changes and

when I check her for a bruise she may have or speckles and spots (Petechia...)

or her fingernails to see how her blood return is if she is not feeling well or

i see a lack of energy she picks up on my nervousness and wonders if she needs a

port and medicine again... I assure her NO and she is nearing her 5 year mark in

remssion!! I still have concerns and worries but the down syndrome doctors feel

they can help no further for her since she has all her faculties and is doing

remarkably well.she is doing everything a 'normal' 8 year old girl can do and

then some!! she LOVES gymnastics! hope this helps.. sorry so long winded...

Holly mom to hannah 8, MDS/MTDS (MyeloDysplastic Syndrome-her rare leukemia for

a child-/MosaicTranslocation Down Sydrome)

Re: Teeth (8) MDS

> > To: MosaicDS

> > Date: Thursday, August 28, 2008, 4:00 AM

> >

> > Oops, that's " orthodontics, " not " orthodintics, " which might

be

> a new

> > specialty that deals with dinky teeth.

> >

> > Judie, mom to Christi, 29 and others

> >

> > ************ **

> > It's only a deal if it's where you want to go. Find your travel

> > deal here.

> >

> > (http://information. travel.aol. com/deals? ncid=aoltrv00050

> 000000047)

> >

> >

[Guest guest]

I was also told the 'high palte' comed from the mosaic or down syndrom genes..

Hannah too has a high palate that they see as common for children with crowding

teeth. and yes they stretch the palate or gums /jaws out instead of pulling

teeth today unless those teeth are not permenant and need to be pulled or if

they are they try and only pull if there is going to be a problem down the road.

Holly

Re: Teeth (8) MDS

Charlie Hart's teeth are mega crowded and he desperately will need

braces. I had braces myself (27 years ago) for the same condition

except my teeth became buck teeth instead of crowding themselves out.

Way back then, they pulled teeth and I lost two perfectly good teeth;

now, they widen the palate of the mouth intead of pulling teeth,

which is essentially our problem in my family (high arched palates).

He is 5 now and he has not lost any, but one or two are beginning to

get loose. He was what I consider " late " getting his teeth, but once

they started coming in, they popped in everywhere.

There seems to be a universal issue with my children though; the

bottom two central incisors invert in like a " V " (husband's genes)

and then all the girls have a tooth that does not or has not after

years and years fully grown down. The dentist (a couple

of years ago) said it had not finished coming in; well, I think it

has done all it is going to do....it seems like it is an eye tooth or

close to the eyetooth on the top right side. I just chalk it up to

our certain mosaic " genes " and smile and go on (except when I think

about the cost for braces for all of them (about $125/month for at

least 24-36 months for each of my five children....then I freak

out...) Someone said Medicaid would cover the cost of braces if the

dentist documented it correctly and it interfered with their facial

appearance (no duh?) or another " valid " reason. " Speech " issues

seemed like a valid reason to me for Charlie Hart, but his dentist

would not do it for that reason and felt it was not a good enough

reason for Medicaid (?). I need to find another dentist in the area I

moved to and try again, but then again, we were also told that

certain teeth had to be lost before even considering braces.

<br>

>

> s top 2 teeth on either side of big teeth (adult) are coming

in

> VERY SLOWLY and now it looks like they have even receded back into

the

> gums some. Also the same teeth on the bottom are also coming in

slowly.

> If any one has had similar issues please let me know. I don't know

what

> to do. Also she says it hurts when I brush any of those 4 teeth.

>

>

[Guest guest]

Holly,

You are no more long-winded than I am. LOL ;0)

I am so glad to hear that she is in remission.

One comment about the " typical round face " , that is one thing that

sets my son apart so much from the DS look and one thing that alerted

me to the fact that the doctors diagnosis was wrong (among other

cogniscent(sp?) things. I became a nurse back in 1994, you will learn

a wealth of information (ongoing) that will help you with your child

(nutrition, etc...). The chronic constipation (alternating with

diarrhea) and projectile vomitiing sounds a lot like Charlie Hart

when he was little. We removed gluten altogether and saw a dramatic

improvement in his health. Recent allergy tests show that he is not

allergic to gluten, but we know different and as we all

know>>>sometimes the tests are incorrect. (The allergy tests did

confirm a tree nut allergy and we subsequently discovered after 42

plus years of eating tree nuts that I should not be eating them

either. SO, the allergy tests are a good recommended thing if she has

not had the tests done. Allergies, as you will discover, can cause a

host of problems including fluid behind the eardrum and

constant " sinus " type colds.) We noticed we had a lot of

symptoms associated with Crohn's Disease, especially sensitivity to

cold (which will cause our stomaches to be upset; Crohn's also causes

bouts of constipation and/or bouts of unexplained diarrhea/loose

stools) and found out that

with Crohn's, gluten should be avoided as well; so, we just eliminate

it and figured why go have the invasive tests as long as our method

of staying away from offensive foods is working. (No need to be put

to sleep and/or have a lower GI series done.) Try taking away the

gluten and see if that helps. I hear gluten allergies are more

prevalent than once thought.

On the 10% issue, I was just curious how many cells they tested?

Customarily, they test 20; but I figured with her Leukemia, they may

have tested many more. Just being nosey, is this a childhood leukemia

or do you know?

-- In MosaicDS , " Holly " wrote:

>

> So sorry I went on and on about teeth...LOL guess my brain cells

were out to lunch?? as for hannah she was told she was at 10%

affected and they could study each cell, blood brain other tissues

etc.. however they detected this in her blood since she had leukemia

and they did a further study on her after they noted the trisome 21

and translocation. at her two year old pictures I noted she looked as

if she had the down syndrome look a typical round jolly smiing face

and turned up corners at her mouth and eyes.. her doctor was very

interested at this point to do further testing and the out come was

10% 'overall' cells affected. Hannah has alwasy been right on target

for most things and never really lagged behind other than teeth

issues. she was a projectile vomiter from birth until she began solid

foods and then was a chronic constipation and still suffers from time

to time with bouts of severe consipation. this I was told was a

direct link to her trisome 21. she never sucked her thumbs or

her 'binkies' for very long and was easy to bottle break and same for

switching from breast to bottle to sippy cup and on.. she learns very

well and adapts to most anything and to look at her one would never

know unless I told them or they knew her medically. she is bright but

she frustrates easily and gets migrains.... we are just playing them

out with a small can of caffeine pop and maybe a bit of quiet time

and a laydown or cool cloth on her head, so far this works and we are

not sure what this could be related to.. her past leukemia

treatments? the MDS? just stress.. she has gone through many changes

since diagnosisi, death of grandmother and several friends who had

cancer, her father passed suddenly 2 years ago at work, we are

building on to our house and I am in school for nursing and now I am

dating a wonderful man... so she has had many changes and when I

check her for a bruise she may have or speckles and spots

(Petechia...) or her fingernails to see how her blood return is if

she is not feeling well or i see a lack of energy she picks up on my

nervousness and wonders if she needs a port and medicine again... I

assure her NO and she is nearing her 5 year mark in remssion!! I

still have concerns and worries but the down syndrome doctors feel

they can help no further for her since she has all her faculties and

is doing remarkably well.she is doing everything a 'normal' 8 year

old girl can do and then some!! she LOVES gymnastics! hope this

helps.. sorry so long winded... Holly mom to hannah 8, MDS/MTDS

(MyeloDysplastic Syndrome-her rare leukemia for a child-

/MosaicTranslocation Down Sydrome)

>

> Re: Teeth (8) MDS

> > > To: MosaicDS

> > > Date: Thursday, August 28, 2008, 4:00 AM

> > >

> > > Oops, that's " orthodontics, " not " orthodintics, " which

might

> be

> > a new

> > > specialty that deals with dinky teeth.

> > >

> > > Judie, mom to Christi, 29 and others

> > >

> > > ************ **

> > > It's only a deal if it's where you want to go. Find your

travel

> > > deal here.

> > >

> > > (http://information. travel.aol. com/deals? ncid=aoltrv00050

> > 000000047)

> > >

> > >

[Guest guest]

Holy, You are correct in that high-arched palates are in fact

associated with MDS genes. We all have this in my family and this is

just one of the many symptoms we have. Once I look at the collective

symptoms, I feel grateful that we do not have more going on than what

we do. We basically have all the symptoms and barely any of the

issues associated with MDS.

Off the subject of teeth still...lol...but just curious if anyone

else here notices that almond-shaped eyes are more " severe " (so to

speak) in the morning when you first get up rather than at the end of

the day? I think Kristy said once that it was due to muscles in the

face getting tired at the end of the day. I just happened to notice

all of our eyes the other morning and I looked more " Mosaic " than did

my CHarlie Hart. AT the end of the day, mine are not so bad, though.

<br>

> >

> > s top 2 teeth on either side of big teeth (adult) are

coming

> in

> > VERY SLOWLY and now it looks like they have even receded back

into

> the

> > gums some. Also the same teeth on the bottom are also coming in

> slowly.

> > If any one has had similar issues please let me know. I don't

know

> what

> > to do. Also she says it hurts when I brush any of those 4 teeth.

> >

> >

>

>

>

>

>

>

[Guest guest]

Holly -

(9) had the projectile vomiting until she was 3 - turns out she had a

webbing across the top of her small intestine that would let liquids pass

through but all solids were trapped at the top of her intestine until she

could not take it anymore and would vomit all over her room - This took 3

years of me saying " something is wrong " - and them just telling me " It was

reflux " - They did not want to do the Barium because she was a kid and it

is not fun - but I insisted after one night she threw up Green Beans and we

had not had green beans in 3 weeks. Yes the barium was not fun - but think

of how uncomfortable she must have been every day of her life feeling like

she just had a huge Thanksgiving dinner.

Hannah is not vomitting anymore?

Darlene - Mom to (11) and (9)

> So sorry I went on and on about teeth...LOL guess my brain cells were

> out to lunch?? as for hannah she was told she was at 10% affected and they

> could study each cell, blood brain other tissues etc.. however they detected

> this in her blood since she had leukemia and they did a further study on her

> after they noted the trisome 21 and translocation. at her two year old

> pictures I noted she looked as if she had the down syndrome look a typical

> round jolly smiing face and turned up corners at her mouth and eyes.. her

> doctor was very interested at this point to do further testing and the out

> come was 10% 'overall' cells affected. Hannah has alwasy been right on

> target for most things and never really lagged behind other than teeth

> issues. she was a projectile vomiter from birth until she began solid foods

> and then was a chronic constipation and still suffers from time to time with

> bouts of severe consipation. this I was told was a direct link to her

> trisome 21. she never sucked her thumbs or her 'binkies' for very long and

> was easy to bottle break and same for switching from breast to bottle to

> sippy cup and on.. she learns very well and adapts to most anything and to

> look at her one would never know unless I told them or they knew her

> medically. she is bright but she frustrates easily and gets migrains.... we

> are just playing them out with a small can of caffeine pop and maybe a bit

> of quiet time and a laydown or cool cloth on her head, so far this works and

> we are not sure what this could be related to.. her past leukemia

> treatments? the MDS? just stress.. she has gone through many changes since

> diagnosisi, death of grandmother and several friends who had cancer, her

> father passed suddenly 2 years ago at work, we are building on to our house

> and I am in school for nursing and now I am dating a wonderful man... so she

> has had many changes and when I check her for a bruise she may have or

> speckles and spots (Petechia...) or her fingernails to see how her blood

> return is if she is not feeling well or i see a lack of energy she picks up

> on my nervousness and wonders if she needs a port and medicine again... I

> assure her NO and she is nearing her 5 year mark in remssion!! I still have

> concerns and worries but the down syndrome doctors feel they can help no

> further for her since she has all her faculties and is doing remarkably

> well.she is doing everything a 'normal' 8 year old girl can do and then

> some!! she LOVES gymnastics! hope this helps.. sorry so long winded... Holly

> mom to hannah 8, MDS/MTDS (MyeloDysplastic Syndrome-her rare leukemia for a

> child-/MosaicTranslocation Down Sydrome)

>

> Re: Teeth (8) MDS

> > > To: MosaicDS <MosaicDS%40yahoogroups.com>

> > > Date: Thursday, August 28, 2008, 4:00 AM

> > >

> > > Oops, that's " orthodontics, " not " orthodintics, " which might

> be

> > a new

> > > specialty that deals with dinky teeth.

> > >

> > > Judie, mom to Christi, 29 and others

> > >

> > > ************ **

> > > It's only a deal if it's where you want to go. Find your travel

> > > deal here.

> > >

> > > (http://information. travel.aol. com/deals? ncid=aoltrv00050

> > 000000047)

> > >

> > >

[Guest guest]

no, not since we took her off of milk based formulas and switched to soy. she is

of course not on formulas since she is now 8 years old....that was when she was

a baby up until age 1 1/2 with the projectile vomiting. even after we cleared up

the 'milk allergy' with the projectile vomiting when ever she would get sick

enough from a virus or flu she would projectile vomit, now as long as she is

near a bathroom and makes it to the toilet I do not notice it so much. they did

x-rays on her in the hospital when she had her treatments for leukemia and her

surgeries but nothing was ever said about a webbing or blockage. I just wonder

abuot her bowels bnow since she still suffers bouts of constipation and

sometimes severe enough to land her in the hospital. last time was over a year

ago on the 4th of July. at first we thought it was a nervuos stomach and she

would complain of belly aches or maybe she ate somethign that upset her stomache

and she was getting a case of the 'runs' but even after she would have a bowel

movement she would complain and go more and end up with the runs only to feel

uncomfortable again. the x-rays showed she was plugged up and backed up very bad

so TWO enema's later they were able to have her move enough feces out she felt

better but it took over two weeks for her to be 'empty' going nearly twice a day

and was put on stool softners and I make sure she eats more fiber fruits and

veggies. she always was a good eater with the fruit and veggies. I make sure to

ask her DAILY if she had a bowel movement cause if she does 'forget' or holds it

for whatever reason... long line in bathroom, only one toilet in the house at

times we have to wait a bit to go... or scared she will miss something... so I

make her sit a few times a day and try to go. there are times she will go and

say but I don't have to go... and a minute later she is going! I am keeping an

eye on her bowels making sure this is not going to be a lifelong problem for

her. Holly

Re: Teeth (8) MDS

> > > To: MosaicDS <MosaicDS%40yahoogroups.com>

> > > Date: Thursday, August 28, 2008, 4:00 AM

> > >

> > > Oops, that's " orthodontics, " not " orthodintics, " which might

> be

> > a new

> > > specialty that deals with dinky teeth.

> > >

> > > Judie, mom to Christi, 29 and others

> > >

> > > ************ **

> > > It's only a deal if it's where you want to go. Find your travel

> > > deal here.

> > >

> > > (http://information. travel.aol. com/deals? ncid=aoltrv00050

> > 000000047)

> > >

> > >

[Guest guest]

when Hannah first gets up or is over tired ot yet awake or not feeling well it

shows in her eyes so yes, I do notice her almond eyes more in the mornings or

later at night when she is tired. Holly

Re: Teeth (8) MDS

Holy, You are correct in that high-arched palates are in fact

associated with MDS genes. We all have this in my family and this is

just one of the many symptoms we have. Once I look at the collective

symptoms, I feel grateful that we do not have more going on than what

we do. We basically have all the symptoms and barely any of the

issues associated with MDS.

Off the subject of teeth still...lol...but just curious if anyone

else here notices that almond-shaped eyes are more " severe " (so to

speak) in the morning when you first get up rather than at the end of

the day? I think Kristy said once that it was due to muscles in the

face getting tired at the end of the day. I just happened to notice

all of our eyes the other morning and I looked more " Mosaic " than did

my CHarlie Hart. AT the end of the day, mine are not so bad, though.

<br>

> >

> > s top 2 teeth on either side of big teeth (adult) are

coming

> in

> > VERY SLOWLY and now it looks like they have even receded back

into

> the

> > gums some. Also the same teeth on the bottom are also coming in

> slowly.

> > If any one has had similar issues please let me know. I don't

know

> what

> > to do. Also she says it hurts when I brush any of those 4 teeth.

> >

> >

>

>

>

>

>

>

[Guest guest]

her type of leukemia she had was what they see typicaly in OLD men or the

elderly.. llike over aged 65... she had Myelodysplastic Syndrome or MDS for

short... so she was MDS with a MTDS...two different types of MDS one leukemia

and one down syndrome.

as for the gluten free I have been watching what I buy for both Hannah and

myself.. I have the nut allergies and she is so far not too alergic to foods

however we discovered she gets a sore buring throat if she drinks or eats

pineapples same for coconut so we avoid it alltogether. I discovered while

pregnant with Hannah I was allergic to peanuts.. ate nuts all my life and LOVED

them all except walnuts, they made my throat and teeth feel itchy so I avoided

them for years. then when the peanut allergy hit I avoided nuts since many are

roasted in peanut oil. I also ask when I eat out what oil they use and many just

say veggy but I make them read the WHOLE label or bring it to me and many times

it also contained PEANUT oil.. they thought that was another veggy! Hannah eats

one activia a day in the morning and this really helps her out as well as me. I

never thought a yogurt could do what it said but it does really work. I feel

bloated if I skip eating activia daily. I was glad to see they started making

larger containers of the vanilla since that is our favorite.

I tried Hannah on prunes and prune juice (doctor recomended) she can now smell

and taste prunes miles away and avoids them!! she did very well with the first

bottle of juice then when she would gag over drinking a very small amount I

switched to the whole prunes individually wrapped and that worked for ONE prune!

the prunes worked but I found they were too harsh for her so we tried cutting

the juice with other regular juices and after a few " bad " combinations and

tastes.. we found 1/4 cup of prune juice with a lemon lime pop like 7up or even

ginger ale was not so bad or a white grape juice insted of prune juice worked

well too. I try and go natural as much as I can and often find that better than

the chemically treated things like meds, flavors and additives as wel as it is

healthier for her to go more natural based. I do however watch how much I

suppliment or have her take with her having had cancer and blood products and

many meds as well as her medicine allergies. some over counter interact badly

with prescribed so I am very causious.

I do have her doing Yoga breathing to help her calm down and relax even when she

is just excited and happy or nervuos.. this helps relax her and her body and

controls her breathing. I worry about ADHD since there is a high rate of

children who have had cancer treatments developing this ... so far I would say

it is mild. her brother had ADHD and 'gre out of it' and stopped taking all his

meds a year before we knew he quit! he would slip it under his tongue and even

when we would 'sweep' his mouth to make sure he developed a way to swallow it

and toss it back up on the way to the bus stop! or in the bathrom before he left

for school. we listened at that poitn and did away with his meds and he seems

fine today. the meds made him angry and agitated very moody headachy and

withdrawn. if Hannah woud be diagnosed I doubt I would use the meds for her.

again off subject and long winded.. Holly, mom to Blakely 16 and Hannah 8

mds/mtds and in remission (from the first MDS) 4 years 7 months 8 1/2 days!! and

counting...

Re: Teeth (8) MDS

> > > To: MosaicDS

> > > Date: Thursday, August 28, 2008, 4:00 AM

> > >

> > > Oops, that's " orthodontics, " not " orthodintics, " which

might

> be

> > a new

> > > specialty that deals with dinky teeth.

> > >

> > > Judie, mom to Christi, 29 and others

> > >

> > > ************ **

> > > It's only a deal if it's where you want to go. Find your

travel

> > > deal here.

> > >

> > > (http://information. travel.aol. com/deals? ncid=aoltrv00050

> > 000000047)

> > >

> > >

[Guest guest]

has constipation - we had her on Lactulose for a year - but now we

just make sure she has A LOT of veggies - and liquids and that she has a BM

every day. Luckily she likes fruits and veggies and does not like a lot of

meat. ;-)

Darlene

> no, not since we took her off of milk based formulas and switched to

> soy. she is of course not on formulas since she is now 8 years old....that

> was when she was a baby up until age 1 1/2 with the projectile vomiting.

> even after we cleared up the 'milk allergy' with the projectile vomiting

> when ever she would get sick enough from a virus or flu she would projectile

> vomit, now as long as she is near a bathroom and makes it to the toilet I do

> not notice it so much. they did x-rays on her in the hospital when she had

> her treatments for leukemia and her surgeries but nothing was ever said

> about a webbing or blockage. I just wonder abuot her bowels bnow since she

> still suffers bouts of constipation and sometimes severe enough to land her

> in the hospital. last time was over a year ago on the 4th of July. at first

> we thought it was a nervuos stomach and she would complain of belly aches or

> maybe she ate somethign that upset her stomache and she was getting a case

> of the 'runs' but even after she would have a bowel movement she would

> complain and go more and end up with the runs only to feel uncomfortable

> again. the x-rays showed she was plugged up and backed up very bad so TWO

> enema's later they were able to have her move enough feces out she felt

> better but it took over two weeks for her to be 'empty' going nearly twice a

> day and was put on stool softners and I make sure she eats more fiber fruits

> and veggies. she always was a good eater with the fruit and veggies. I make

> sure to ask her DAILY if she had a bowel movement cause if she does 'forget'

> or holds it for whatever reason... long line in bathroom, only one toilet in

> the house at times we have to wait a bit to go... or scared she will miss

> something... so I make her sit a few times a day and try to go. there are

> times she will go and say but I don't have to go... and a minute later she

> is going! I am keeping an eye on her bowels making sure this is not going to

> be a lifelong problem for her. Holly

> Re: Teeth (8) MDS

> > > > To: MosaicDS <MosaicDS%40yahoogroups.com> <MosaicDS%

> 40yahoogroups.com>

> > > > Date: Thursday, August 28, 2008, 4:00 AM

> > > >

> > > > Oops, that's " orthodontics, " not " orthodintics, " which might

> > be

> > > a new

> > > > specialty that deals with dinky teeth.

> > > >

> > > > Judie, mom to Christi, 29 and others

> > > >

> > > > ************ **

> > > > It's only a deal if it's where you want to go. Find your travel

> > > > deal here.

> > > >

> > > > (http://information. travel.aol. com/deals? ncid=aoltrv00050

> > > 000000047)

> > > >

> > > >

[Guest guest]

we know all too well about lacktulose....

that was the main med they gave her after any surgery and at the start of all

her chemo treatments. I learned with ONE dose is all she needed and if they

continued to give her the doses as prescribed every few hours at max 2tsp she

would have a real problem and end up with severe diarhea! one nurse would not

take NO from me and kept giving it to her so the night of her surgery as she lay

there sleeping off her meds from surgery she would litterally stand up asleep

and cry out in pain and shake pushing until a small amount would come out and

you could hear her belly churning knowing the runs were going to hit... all

night every hour she would do this until she had enough of a movement to get

most of it down into the lower bowels and I just fell asleep after not sleeping

for nearly two straight days (surgery back up etc,...) and a nurse who would not

listen to me woke me up in such a rapid way saying " mom mom mkom " " do you smell

pop? " ... WHAT??? I am half asleep Hannah is sound asleep and I was scared how

she woke me up and came toi find out this nurse hated poopy messes and went to

get Hannah's blood samples and when she threw back the covers she saw exactly

just what TOO MUCH LACTULOSE can do to Hannah! having constipation is just as

bad as the diarhea for a cancer patient. I told her to leave and send someone

ASAP with clean bedding and many towels and a few new basins and fresh soaps

since this was going to be a messy clean up! I had it all done before she came

back to collect her blood samples and Hannah never woke up during the whole

messy clean up! I won with NO more lactulose doses. never had that nurse again.

we never use the harsh meds like lactulose for her constipation since she had it

so much while in the hospital and had the 'blow outs' with each dose. we do keep

check on her bowels and as long as she eats her fruits and veggies and fiber she

does fine and the activia. I even buy the V8 splash juices with fruit, veggy and

fiber and she loves them. she does drink plenty of fluids milk, water, juices

and little pop. ice teas and lemonaides and she is very active!! Holly

Re: Teeth (8) MDS

> > > > To: MosaicDS <MosaicDS%40yahoogroups.com> <MosaicDS%

> 40yahoogroups.com>

> > > > Date: Thursday, August 28, 2008, 4:00 AM

> > > >

> > > > Oops, that's " orthodontics, " not " orthodintics, " which might

> > be

> > > a new

> > > > specialty that deals with dinky teeth.

> > > >

> > > > Judie, mom to Christi, 29 and others

> > > >

> > > > ************ **

> > > > It's only a deal if it's where you want to go. Find your travel

> > > > deal here.

> > > >

> > > > (http://information. travel.aol. com/deals? ncid=aoltrv00050

> > > 000000047)

> > > >

> > > >

[Guest guest]

Holly (BTW, sorry for the " holy " typo...lol...it was too late when I

caught it to change it...)

Isn't that strange>>>I thought you might say it was the " older " type.

In my family, we have the lung disease (?) (Somewhere in the cousins)

that children typically have, but it is in the adults (well, I should

say that a cousin died from it-the lung thing- and he is the only one

I know). I had a strange inling you would say it was one not typical

fr children.

As far as the nut allergies, does anyone know if " nut allergies " are

particularly common in DS or MDS? (just curious) I used to devour all

kinds of nuts and come to find out, this was the source of what I

thought was " acne " , and also it was one of the sources of our ear

fluid and Asthma problems. I feel so dumb and wonder why in the world

didn't my parents see this and why did it take me 42 years and 5 kids

later to discover this???

I love prunes, but CH won't eat them any more either.

As far as the peanut oil, you would think restaurants would not use

it because it is an expensive oil. I never considered the oil n

restaurants, but then again we stopped eating out so much (high gas

prices and also too many allergies).

I will have to try that yogurt, as I have not yet and I do know that

active cultures are good for the body daily. (Good tip, thanks.:0)))

I never heard of ADHD with the cancer treatments, but it makes since

and I guess I would be highly anxious if I had to go thru that myself

and then also " withdrawn " or ADD. Very interesting. Do you have a

link or article on that that I could read (I am real into research

and things like that.)

SUSan <br>

> > > >

> > > > From: jhockel@ <jhockel@>

> > > > Subject: Re: Teeth (8) MDS

> > > > To: MosaicDS

> > > > Date: Thursday, August 28, 2008, 4:00 AM

> > > >

> > > > Oops, that's " orthodontics, " not " orthodintics, " which

> might

> > be

> > > a new

> > > > specialty that deals with dinky teeth.

> > > >

> > > > Judie, mom to Christi, 29 and others

> > > >

> > > > ************ **

> > > > It's only a deal if it's where you want to go. Find your

> travel

> > > > deal here.

> > > >

> > > > (http://information. travel.aol. com/deals?

ncid=aoltrv00050

> > > 000000047)

> > > >

> > > >

[Guest guest]

I am not sure if " lactose " and " lactalose " are related in any way,

but we originally thought CH had a " milk " or " lactose " allergy before

we discovered the gluten intolerance. We learned that the cilia in

the intestines have an enzyme called lactase on them that helps to

digest lactose or milk products. And people who cannot tolerate

gluten do not digest milk well for this reason: the gluten destroys

the enzyme lactase on the cilia in the intestines, which helps to

digest lactose. In the absence of lactase, the intestinal lining,

which gets damaged from the gluten, is unable to digest dairy

products and in turn the patient will have extensive GI problems

(i.e. diarrhea bouts, projectile vomitting or excesive spitting up

with bile or foul smelling spit up and stool). Now that gluten is

out, CH has no problem with dairy products. I just wonder if the

lactolose is the same thing as lactose and it could all be solved

with removal of gluten? I really do not know without doing some

research if they are the same. You could certainly try a gluten free

diet; it would not hurt anything.

SUSan <br>-- In MosaicDS , " Holly " wrote:

>

> we know all too well about lacktulose....

>

> that was the main med they gave her after any surgery and at the

start of all her chemo treatments. I learned with ONE dose is all she

needed and if they continued to give her the doses as prescribed

every few hours at max 2tsp she would have a real problem and end up

with severe diarhea! one nurse would not take NO from me and kept

giving it to her so the night of her surgery as she lay there

sleeping off her meds from surgery she would litterally stand up

asleep and cry out in pain and shake pushing until a small amount

would come out and you could hear her belly churning knowing the runs

were going to hit... all night every hour she would do this until she

had enough of a movement to get most of it down into the lower bowels

and I just fell asleep after not sleeping for nearly two straight

days (surgery back up etc,...) and a nurse who would not listen to me

woke me up in such a rapid way saying " mom mom mkom " " do you smell

pop? " ... WHAT??? I am half asleep Hannah is sound asleep and I was

scared how she woke me up and came toi find out this nurse hated

poopy messes and went to get Hannah's blood samples and when she

threw back the covers she saw exactly just what TOO MUCH LACTULOSE

can do to Hannah! having constipation is just as bad as the diarhea

for a cancer patient. I told her to leave and send someone ASAP with

clean bedding and many towels and a few new basins and fresh soaps

since this was going to be a messy clean up! I had it all done before

she came back to collect her blood samples and Hannah never woke up

during the whole messy clean up! I won with NO more lactulose doses.

never had that nurse again. we never use the harsh meds like

lactulose for her constipation since she had it so much while in the

hospital and had the 'blow outs' with each dose. we do keep check on

her bowels and as long as she eats her fruits and veggies and fiber

she does fine and the activia. I even buy the V8 splash juices with

fruit, veggy and fiber and she loves them. she does drink plenty of

fluids milk, water, juices and little pop. ice teas and lemonaides

and she is very active!! Holly

> Re: Teeth (8) MDS

> > > > > To: MosaicDS <MosaicDS%40yahoogroups.com>

<MosaicDS%

> > 40yahoogroups.com>

> > > > > Date: Thursday, August 28, 2008, 4:00 AM

> > > > >

> > > > > Oops, that's " orthodontics, " not " orthodintics, " which

might

> > > be

> > > > a new

> > > > > specialty that deals with dinky teeth.

> > > > >

> > > > > Judie, mom to Christi, 29 and others

> > > > >

> > > > > ************ **

> > > > > It's only a deal if it's where you want to go. Find your

travel

> > > > > deal here.

> > > > >

> > > > > (http://information. travel.aol. com/deals?

ncid=aoltrv00050

> > > > 000000047)

> > > > >

> > > > >

[Guest guest]

what I learned was on the cancer blogs, going through it or reading others

caringbridge pages, or meeting people in the onclogy clinic and asking her

oncologist. I am sure if you searched the Internet for articles pertaining to

ADHD or after effects of chemo, chemo & radiation, and other cancer treatments

in children and a link to ADHD you will be amazed with the recent outcomes. both

in boys and gilrs. I we fought the diagnosis with our son for a year and then

'gave in' and tried the meds.. went through several to find his 'cocktail' that

would work but it was never fool proof and yes they did work at first and we saw

great improvemnts but short lived.... I was horrified going into the nurses

office and seeing the cabinet of meds all for ADHD and the list of kids OFF the

meds was shorter than the kids on the meds over the whole school! so the meds

issue I felt like the doctors were just putting kids on meds that did not have

ADHD or ADD...

even though the peanut oil may be more it cooks hotter faster and better and

tastes better. can i tell the difference between regular veggy and peanut..

NOPE... why I always ask. I have copme in contact with peanut oil since stopping

all nuts but main thing is hives or a rash and an anoying itch that won;t stop!

unless I use benadril every 4 hours 2 pills.. all I do is sleep then... then

when I am done with the itching I have a medicine headache! I am very sensative

fair skin red hair.. goes with the territory.. Hannah is sensative too and I

watch her skin closely and make sure she wears sun screens. she had benadril in

the hospital before any meds and any blood products so benadril hypes her up or

gives her a headache.

way to go McCain on the VP choice...

good luck on your researching.... hope this helped? Holly

Re: Teeth (8) MDS

> > > > To: MosaicDS

> > > > Date: Thursday, August 28, 2008, 4:00 AM

> > > >

> > > > Oops, that's " orthodontics, " not " orthodintics, " which

> might

> > be

> > > a new

> > > > specialty that deals with dinky teeth.

> > > >

> > > > Judie, mom to Christi, 29 and others

> > > >

> > > > ************ **

> > > > It's only a deal if it's where you want to go. Find your

> travel

> > > > deal here.

> > > >

> > > > (http://information. travel.aol. com/deals?

ncid=aoltrv00050

> > > 000000047)

> > > >

> > > >

[Guest guest]

LACTULOSE is a medicine that induces the bowels to move like a laxative. wether

or not it contains LACTOSE I do not yet know but intend to find out. and yes

your right about the lactase and cilia in the lining of the intestines. just

learned all baout that in nursing school last semester... pretty intersting what

i am learning and how the more I am understanding the body the more i am

understanding what Hannah went through may still go through and exactly how Mark

died and what his body went through before during and after he passed away. it

was hard getting through the blood and cardiac chapters re living the memories I

want to forget but i am stronger for forging ahead and understanding them

further is a help and like 'therapy' as well as me bringing a wealth of

information beign we lived through so much with hannah and when my husband Mark

died 2 years ago of artheriosclerosis (99% blockage in one artery and 78% in

another). I even copied his autopsy report and wrote a paper based on the size

difference of the human heart in a young healthy male and a diseased heart in a

not so healthy young male. obviously my husband was not so healthy, was

overweight, smoked and chewed tobacco, was active, had a very stressful job, did

adkinson diet to lose weight wich he did and gained some back , had high BP and

high Cholesterol and a family history of heart disease. many factors that should

have been watched more closely but I can take a few things from his death, he

went very quickly and did not suffer, I did not have to make the decision to

remove him from life support and I now watch my kids very closely and have them

tested for high cholesterol. it is in both sides of the families so they have a

higher chance of heart disease. I already had heart surgery as a baby so i try

and watch myself... hard sometimes... Holly

Re: Teeth (8) MDS

> > > > > To: MosaicDS <MosaicDS%40yahoogroups.com>

<MosaicDS%

> > 40yahoogroups.com>

> > > > > Date: Thursday, August 28, 2008, 4:00 AM

> > > > >

> > > > > Oops, that's " orthodontics, " not " orthodintics, " which

might

> > > be

> > > > a new

> > > > > specialty that deals with dinky teeth.

> > > > >

> > > > > Judie, mom to Christi, 29 and others

> > > > >

> > > > > ************ **

> > > > > It's only a deal if it's where you want to go. Find your

travel

> > > > > deal here.

> > > > >

> > > > > (http://information. travel.aol. com/deals?

ncid=aoltrv00050

> > > > 000000047)

> > > > >

> > > > >