[tri-med] Re: tri-med Digest V2 #333

From: "Michelle Waite" 
Subject: [tri-med] Re: Partial Trisomy 5q
Date: Sat, 30 Aug 2003 13:43:58 -0400


>we've never had success with the cortisone
cream on it's own plus I hate using that stuff on Alex knowning it's being
absorbed into his body and circulation internally.

I started using Elidel on Genevieve which is steroid free and her small patches 
go away in 2-3 days. They told me the excema can flare up more from stress.

> (the pediatric endocronologist said the GHT wasn't what did it but I've 
> talked with other trier parents who's children on GHT did the same thing). It 
> only makes sense that growth hormones work on many parts of the body....not 
> just vertical growth---to me anyhow. lol He's still very small.........the 
> size of a 10 yr
old or so.

I don't know how big Genevieve will be, they told me from her limb 
porporations, she won't be a dwarf, just little. I will mention GHT to her 
doctor for future use in case it's something to address when she is a bit 
older. Her sister Faith is 4 and 42" tall and they told me last week at school 
physical she will be 5' 8 or 5'9 tall when she is 18 years old. How do they 
know?? Seems there are lots of factors out there that may weigh in before Faith 
is 18. Doctors and foretelling the future...grrrrrrrrrrrrrrrrrrrrrr sorry I had 
my fill last week and more this week as Genevieve has 4 dr appts.

>As an infant Alex had "failure to thrive" (made me feel like an bad Mom) and
"developementally delayed". Not sure I've heard the "global delays"
phrase????

 A child with a global delay will have delays in all areas of development. It 
is usually caused by a static (does not worsen with time) encephalopathy caused 
by a disorder before or near the time or birth. Causes of global delays include 
prematurity, cerebral malformations, chromosomal disorders, infections, and 
progressive (may worsen with time) encephalopathies (metabolic diseases, 
hypothyroidism, neurocutaneous syndromes (neurofibromatosis, tuberous 
sclerosis), Rett syndrome, and hydrocephalus). Testing to look for the cause of 
a global developmental delay may include a head MRI.

>Is mederma to reduce scars? Right after the cuts are done or applied after
scars have formed?

They "taped" Genevieve's head shut (so unnerving knowing skull free floating 
under the tape), no staples, no stitches, so after the tape pieces came off, a 
few pieces we had to use 3M tape remover (smelled a bit like acetone, dr gave 
it to us) and her scar is zigzagged, sides were healed so we started Mederma on 
it. The top we waited about a month before using the cream on it. The plastic 
surgeon and neurosurgeon are so pleased not with just the skull shape now, but 
her scar is there, but blends in with her skin. I swear it helped her 
skull.They said it can be used on old scars, just takes more time. We did it 
twice a day for 6 months.

>But there have been past discussions on the list about too much fat causing 
>problems with our triers. I don't have a prev post of it....does anyone else 
>still have it?

Eating too much fat causing problems, medically??

>And everyone here is great at listening. :0)

Michelle so far everyone I have talked to has been a great source of support 
and a wealth of information. Where I am in Indiana, there are no actual support 
groups to go to physically unless I drive an hour or more as I am sure 
Indianapolis would have something... but with the internet I can write at any 
hour at my convienece. Saves at the gas pump too : )

From: "Michelle Waite" <jwaite@xxxxxxxxxxxxx>
Subject: [tri-med] Re: Partial Trisomy 5q(amnio errors)
Date: Sat, 30 Aug 2003 14:13:04 -0400


>So off we go and the geneticist want's to retest Alex because she didn't
"like or trust that lab" results.In some ways finally KNOWING what were were 
dealing with made it easier. Jim and I both have tested genetically normal. 
Pamela---good luck in your endeavors! You've not chosen an easy path and
hats off to you for fighting for your beliefs and rights (not to mention
those of others).

It's amazing these labs, holding the fate of everyone with a test. Lab errors 
happen, fact. I have had Paps done and one in the past was abnormal, well found 
out the glass slide was broken in the lab and restested normal. No biggie. You 
read in papers, see in on tv, lab errors, people testing positive and turns out 
they don't. I think these labs should be held accountable to find out how 
"oops" there are, people have a choice what doctor they go to, unless HMO, why 
shouldn't we have a say in what lab my test goes to. I told Genevieve's 
geneticist I don't trust the lab, please don't use it, so they send all her 
test to Ohio now. The doctor's office stopped using the lab in general because 
of Genevieve's test being screwed up. I want all of us to have that knowledge 
prior on lab to decide what lab you want a test to be performed. Minor mistakes 
can cause a surgery that's unneeded, treatment to began that isn't nescessary 
because lab error. Accountability.

Oh gosh I am on a roll now... let's keep it going HA

It's amazing how much we trust our doctors, honestly some are very good and 
work for you, but others, ahhhhhhhhhhh, I have had two with views of doom and 
gloom. They are fired now. You have a car accident, you go to 3 different 
places for an estimate of repair and get 3 ballpark figures. But for most, you 
have a doctor annd we trust them, he must be right, he has the certificate on 
the wall. No. I love my doctors now, but will ask for a 2nd opinion or 3rd 
opinion, it doesn't hurt to find out more to help my daughter.

I know my daughter is in for a rough road and has a chromosome disorder. We 
can't change DNA, we have a diagnosis, we can't change it. But I be darned if I 
am going to sit in the corner and do nothing. I take one day at a time, but 
everyday is a new day. A day to make a difference. It would kill me inside 
knowing that this same lab is making another mistake on another child right 
now. 

Thanks for writing Michelle and Best of Luck to you & yours and really Michelle 
your kind words are greatly appreciated and inspiring to make it through to the 
next day no matter how hard this day is today for me or for Genevieve : )

From: "Karen" 
Subject: [tri-med] Re: Partial Trisomy 5q
Date: Sun, 31 Aug 2003 04:24:15 +1000

>Sorry for butting in - but I am also a mederma fan!! So seeing as I am up at
4am I'll add my 2 cents (sorry Pamela) Yes you put it on when the cuts are 
first done and its brilliant stuff, expensive - one dressing here costs around 
$100 but literally brilliant and you only need one or two dressings per surgery.
>Duoderm was originally developed for treating debicutus ulcers - its brilliant 
>and things really do heal so much faster and it reduces the pain almost 
>immediately. Its still expensive, a sheet costs around $20, but you cut it up 
>to the size needed - one sheet lasts a year or so around this house and I use 
>it on everything :-)

HA Not a problem at all Karen. I am not familar with Duoderm, but it sounds 
wonderful!! I wonder if its available in the states? Mederma sells everywhere 
now and a large tube (50g) can sell for as low as $22 on sale. Heck even sells 
on eBay (not a plug ha). I have seen other store versions now at Target, 
WalMart and CVS and on sale for as low $12.99. Not used store brands so can't 
compare to quality. In 6 months time, I had bought 4 tubes and still have 4th 
tube on hand for other scars. Its a gel and a little bit goes a long ways. 
Mederma is over the counter and not covered by insurance. Best bet is ask your 
doctor for free samples.



From: "Michelle Waite" 
Subject: [tri-med] Re: Partial Trisomy 5q
Date: Sat, 30 Aug 2003 15:58:26 -0400

>Molly has a very raised and wicked looking scar on the top of her foot from
a cut/slice that couldn't be stitched and butterflies were used.I was hoping 
scar reducing substance was for scars already formed. eally would ike to avoid 
spending a fortune at the dermatologist for lazer work! Who nows, maybe it's 
never going to be a big deal to her. :0)

Mederma does work on already formed scars, just may take a bit longer in 
treatment time. Worth a shot for Molly's self esteem, teenagers can be harsh on 
little flaws.


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

From: NanlorW@xxxxxxx
Date: Sat, 30 Aug 2003 17:24:54 EDT
Subject: [tri-med] Re: Partial Trisomy 5q(amnio errors)



>he ped we were seeing told me he had a very grim prognosis 

>he toldm I was holding out way too high expectations and I should not let 
>myself get too attached and it was highly unlikely he would ever walk on his 
>own. Week three, Dom walked into his office under his own power, not even 
>holding a hand. Moron doc acted as if he knew that would happen all the time. 

Nan---Mom to Dom, 19; Tri18 Mosaic, Bipolar Disorder and Ali, 19; Autism, TS, 


Your story is very inspiring Nan and really gives me hope!! Some doctors are 
arrgant and do act that way. I am holding out for the day I can do that with 
Genevieve.  Thanks Again Nan : )

Pamela ~ mom to Savannah, teenager in another world, Faith 4 and Genevieve, 13 
months old : )  (46,XX, dup inv ins 5 (q31.3; q35.1q34), missed amnio) 
 


 



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