new to group

[Guest guest]

Hi Vicky:

Welcome to the group. I visited Jody's website. I'm sorry to hear all that

you and Jody have had to endure because of his leukemia, he sure sounds like

a little trooper! I will be praying that his bone marrow transplant goes

well and that it will be a cure for Jody.

Welcome to the group. I hope you will find this a good source of support.

ann (Mom to , mds, 6 yrs old)

[Guest guest]

I had never heard of the FISH test. That wasn't an option available to me so I

did not have that problem. Each organ tested can have different result. From

the amnio it is their skin that is tested. Blood can be different as well other

organs. By son Ben had 50% affected cells from the amnio and when he was born a

blood sample was taken. It revealed 50% in his blood also but that can vary.

Welcome to the group!

Carol

Mom to Ben 14mos MDS and 4 other siblings.

[Guest guest]

...

That does sound extremely rare, I hope you're able to find someone to connect with. If not on this list, have you heard of the organization called NORD? (National Organization for Rare Disorders) My 8 year old son is Mosaic, however I had an amnio with my 2 after , and the amnio of my daughter came back that she had a mosaic deletion of the short leg of the 20th chromosome. There was NO medical case of this mosaicism, and only about 3 or 4 medical cases listed at all. I contacted Nord, and they actually had ONE member who had a child with the 20p- who they put me in contact with. Thankfully the amnio was wrong, and my daughter is perfectly "normal" and healthy.... but NORD really came through. I know they have a website.

Good luck in your search, and welcome to our group, hope you'll stick with us!

Angel

Mom to Tyler 9, 8 (MDS and Hirschsprung's Disease), 6 and Jaeda 5

[Guest guest]

Beth:

I'm not sure about the chromosonal aspect of it, but what feeding issues

have you been dealing with? My daughter, Sierra is 2 1/2 yrs and we've

been contending with this since birth. Maybe we could help each other??

Kris

mom to Sierra, and

[Guest guest]

is 21 mos. and is reluctant to move past baby food consistencies. He's moving on to slippery stuff like pasta cut up small, or easy stuff like saltines, but still doesn't chew with his molars. Unless he can bite it into smaller pieces with his front teeth, he pretty much swallows food whole. He also is not able to use a cup well yet, and not independently. We're working on all this. He still takes a bottle 2 times a day, of Pediasure. He is doing well in most areas except he has very low muscle tone, which means he's pretty far behind in gross motor skills, and they tell us his feeding issues are related to his low tone.

Beth

Re: New To Group

Beth:I'm not sure about the chromosonal aspect of it, but what feeding issueshave you been dealing with? My daughter, Sierra is 2 1/2 yrs and we'vebeen contending with this since birth. Maybe we could help each other??Krismom to Sierra, and Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

,

Welcome to the group. I've been pretty quiet these

last few weeks, completely preoccupied with the

terrorist attacks and now the US retaliation. It

simply amazes me that there is so much diversity even

within our narrowly defined group. When I met my wife

and she told me about 's MDS and how rare it

was, I thought we would be fumbling along in the dark,

for the most part, without the ability to connect with

many others who could relate to the

difficulties/challenges we faced (are they over? I

doubt it) with .

Fast forward 6 years.... here is this group of parents

and children who are EXACTLY in tune with us, in fact

they are just forming an international group all about

MDS. We sang, we danced, we rejoiced! Finally, people

who will understand us!

And yet, the more I get to know the various parents

and their children, I believe I'm coming to the

conclusion that we are STILL alone, in some respects,

due to the vast differences even among MDS

children/adults. Further proof that labeling is

ultimately negative and destructive.

Each and every person -- young or old -- with MDS is

so very unique. Each person -- no matter how " normal "

or " not normal " -- is unique. Celebrate those

differences. I am unique! I have.... well... I'm sure

I have lots of abnomalities, but...lol... its just who

I am.

MDS, DS, rare diseases, accompanying complications --

whatever. If you have found this group and love your

children, what else matters? Stick around. Have some

fun, share some information, share a few tears, lean

on each other. Its the best we can do. I'm

preaching/rambling again, I know.

I feel like one of those bobbling birds...... I take

in all these wonderful (and some not so wonderful)

experiences that are shared within our group and once

I'm " full " I feel inspired to just write -- just let

it all come pouring out. You are all such incredible

people. Think of how much the rest of the world could

learn from this little group. Diversity IS. Deal with

it.

Well, our government has decided to bomb Afghanistan,

so I think the days ahead might be more stressful and

challenging for everyone. I'll stop here because I

suddenly feel the urge to go hug my kids. I hope

you'll do the same at your house.

Stepping down from the soapbox...

Lucky husband of Jaymie, and stepdad to (11

MDS), Jordan (8) and Sydney (6)

[Guest guest]

Barb Martz writes:

He does not have teeth yet, but is working hard at getting them.

++ Maddie finally got teeth when she was about 16 months old. She

got her molars first! (OUCH!) She currently has her two front teeth

and both molars on the top, then most all of her teeth on the bottom

left side of her mouth and a couple on the bottom right side.

Do you have a ST through early intervention you can use?

++ I have been working with a speech therapist/ feeding specialist

for close to 2 years. We are still sorting through all the

techniques we can use.

I am wondering what problems Maddie is having.

++ In a nutshell, she will only drink Pediasure from a bottle. We

have tried other liquids, also spooning yogurt, pudding, pureed baby

foods, etc. Also, no luck yet on using a straw cup or a sippy.

Where do you live?

++ Louisville, KY Our geneticist here has never seen this type of DS

in his 25 years at this clinic (lucky me!). I need to get names and

phone numbers of other genetic specialists and start calling around.

Mom to Maddie (2-1/2) as well as Hannah and Lucy

[Guest guest]

Welcome to the group!!! Where do yall live. i have Sherri who is 14, !5 in two weeks!@#$%% she also had an a-v canal. We live in South Mississippi, and I have to go now, but want to hear all about you all soon. (hubby cooked dinner and says it is ready, this is an enormous occasion!!!!) Glenda-Mom to Sherri- MDS- ALMOST 15!!! and , 11 Our little man

[Guest guest]

Dear Kim & Jenna,

Hi there, I wish to welcome you all to our wonderful group. My name is Sussan mum to Courteney 17months and we are from Australia..It is so nice to hear that Jenna is doing well and is she having lot's of fun being big sister to brother .Courteney is my youngest she has 3 big brothers to look after her..I was wondering if you ever had any troubles when putting Jenna on to solids as I am finding it very difficult as anything thicker than a puree she just spit's it straight back out...Maybe you might be able to give me some advice...Anyway hopefully we might get to chat soon or if you wish to send an email my addy is rosepetal@............

Looking forward in hearing from you soon..

SUSSAN & COURTENEY

[Guest guest]

Randy, Kim, Jenna, and ,

Welcome to our group! Where do you live? If we have

anyone living in your area, we would like to match you

up with them for support. Please let me know if you

need anything and I will try my best to get it to

you.(info, support, ect.) Once again, Welcome to our

family!

--- Randy & KIm Million

wrote:

> I am excited to join this MDS group! My daughter

> Jenna is 3 and has MDS. We did not find out until

> after she was born. Like many other kids with DS,

> Jenna did not have a lot of the physical

> characteristics. Her eyes, ears, hands, etc. all

> looked as normal as could be. The big red flag was

> that the doctor discovered a heart murmur. After

> ultrasound she was diagnosed with a.v. canal defect.

> After spending 6 days is the NICU she came home to

> be with us.

>

> Her initial blood test for Downs came back normal,

> so they decided to test for Mosaic. That came back

> positive. Needless to say, a lot of prayer ensued.

> Jenna underwent open heart surgery at 7 months of

> age. We were blessed with excellent doctors! She

> still holds the record for the earliest release from

> the hospital after that invasive of a surgery (for

> that surgeon). With each yearly check the repair

> continues to look better.

>

> Jenna is an extremely active, beautiful,

> blonde-haired, green-eyed girl. She goes to a

> special needs preschool at the public school and

> loves it. She has a fairly broad language base, but

> her speech is still fairly difficult (some words are

> very clear, some not) to understand. She is

> receiving oral motor therapy as well as speech

> therapy. She seems to be doing very well lately and

> it is getting easier for us to understand her.

>

> Jenna's biggest challenge lately is being big sister

> to brother , 10 months. was born

> completely healthy with a normal chromosome make-up.

> We decided to forego any testing during pregnancy

> since I thought I would worry more if I knew there

> was a potential problem. We trusted, and thankfully,

> everything turned out great!

>

> We love being parents of two extraordinary children.

> We often ask each other, " How did we get so blessed

> to have such great kids? " We have high hopes for

> both of them.

>

> I welcome any of your replies. We would love to hear

> of your children and exchange information.

>

> Thanks,

> Kim: Mom of Jenna-3, -10 mo., Wife of Randy

>

>

=====

Kristy Colvin:President (mom to Arron 19, 16, Tim 15(mds), Stevan 14, and

Garrett 5.) The only handicap a person has, are the people around them!

__________________________________________________

[Guest guest]

hello everyone,

i am new to this group and thought i would take a moment to

introduce myself and my daughter. my daughter amaya will be 2 on

august 9th and she has been diagnosed with autism. she has global

delays and is nonverbal. they believe she has apraxia (although we

won't know for a while), has receptive and expressive language

delays, hypotonia, and sensory processing disorder. we are

currently following dr. golberg's nids protocal (neuro immune

deficiency syndrome) with very good success. she is making progress

and we are pleased with what he has done for her so far.

i happened to stumble upon this group by accident and did a little

bit of research when i came across a picture of the lyme rash. at 6

1/2 months, my daughter had a mysterious rash that looked like

ringworm. it was on her torso and her arms. it didn't seem

contagious, although i did have a little patch, but my husband

didn't contract it and he was giving her baths every night. anyhow,

i kept saying it was ringworm and the ped and the dermatologist said

it was ezcema, gave us a steriod ointment and sent us on our way.

now i am starting to wonder if she does have lyme disease. anyhow, i

would love to have her (an myself) tested and wanted to know where

to start? can i go to her pediatrician or do i go to a specialist.

she has tested positive for both hhv-6 and cmv, so she is currently

on an antiviral, but since lyme is bacterial, i imagine it wouldn't

affect the lyme disease parasite. anyhow, sorry to be so long

winded. we are in ventura county (southern cali) and any help would

be useful.

thanks so much for your time.

always,

pattie

[Guest guest]

Hi Kristie,

Thank you for the warm welcome! I think he is great too and although

I am not sure if this will be our path forever, it is working now. We

do some of our own modifications and are more strict with the diet and

add supplementation (i.e. super nu thera and zinc).

How long ago were you a patient? I actually recognize your username

so you must have been there within the last 7 months or so...am I

right? That's how long we have been seeing him. How did your son do

when you took him off the meds? I too am wary about them and would

prefer if my daughter weren't on them, but I can't deny the results we

have seen with them. My hope is to only her taking them short term.

Are you in Southern Cali and if so, who do you see now? I would be

curious as I would really love to treat the gut and bacterial issues

as well. How are you treating the bacterial issues? I am going to

ask him about the testing and I will keep you posted.

Thanks!

Pattie

>

> Dr. Goldberg is a very nice man. We did NIDS for a time as well. I

> think he is brilliant physician and has contributed a lot to the world

> of autism. He had been doing valtrex before DANS and he had been doing

> SPECT scans before all of them (most DANs don't order SPECTS still I

> believe). Hats off to Goldberg for his contributions. Just has a pretty

> big ego for his way being THE WAY but a lot of them are like that

> right? Anyhow if it is working for your child great! You should ask Dr

> G his protocol if a patient has lyme or if he even tests. I would be

> interested to know. In my opinion the flaw with NIDS (besides the use

> of prescription drugs which I am not a fan of) is no attention truly to

> the gastrointerestinal issues with our kids. the diet prescribed is

> very basic and does not address a majority of our kids with gut issues.

> Also the protocol does not address the bacterial issues that most of

> our non or limited responders truly have at the core.

>

> Welcome!

>

> Kristie

>

[Guest guest]

Pattie

Expect resistance from Dr Goldberg. He is about as bad as our kid

when it comes to " transition " or " change "

But I am in Rancho Cucamonga, CA. Southern CA about 60 miles east of

Los Angeles.

I went to see Dr Goldberg with my son through I believe March of 2007

or so. We had started in September of 2006. About seven months.

He was on Valtrex and an anti fungal through June of last year. After

taking him off all meds and supplements we had just begun through

Yasko he got very ill. Constipation, lethargy, crying, whinning. This

went on a few weeks. Long story short his appendix burst in July (a

year ago) of 2007. It will be the anniversary this coming 21st! Good

times! Oh and my son had just turned four years old.

I take my son to see Dr Toby Watkinson who comes down to San

Capistrano a few times a week. He does treat the bacteria definitely.

He presented at the LIA Conference if you get a chance to watch.

Also I am taking him to see Dr Klinghardt during the week of the

conference up there in August. He spoke at LIA too! They will work

together for my tough nut kiddo.

Kristie

Aidan age 5