a

[Guest guest]

Hello Everyone,

I was directed to this support group through Friend and am

grateful to her. We arrived to a diagnosis of RSS in a round about

way. a was born by way of emergency c-section due to fetal

distress after a long labor. She was 5lbs 12 oz and 19 inches long.

She aspriated meconium & blood so badly that her circulatory system

became toxic. Within 3 hours we had her emergency baptized and she

was airlifted to CHOP in Phila., PA. There she was place on ECMO,

which is basically heart and lung bypass. The blood is taken out of

the body, purified and then replaced. She needed many blood

transfusions and was on every type of med imaginable. What a sight.

The whole room was filled with technology to support her vitals. You

could hardly even see where the baby was upon entering the ecmo

room. Anyhow, after many trials and tribulations she overcame these

challenges. But, then came the issue of gaining weight. She was fed

by an ng-tube and then progressed onto a special bottle (The

Haberman). She was a projectile vommiter. She was sickly and also

had the chronic lung disease issues and deaf in her left ear. A lot

of this has, I'm sure, delayed an RSS diagnosis because failure to

gain weight, developmental delays, and low muscle tone were all

blamed on her beginnings. We have been to many specialists as I see

most of you have so, no need to list them. We are fortunate that she

eats, yet she remains small in size. She is 3.5, 22lbs., 33 in. RSS

was suspected last year and has been confirmed, I guess, just this

July. She has tested positive for maternal UPD7 through the Canadian

study. But, we are hesitant to trust the test because my husband's

blood did not grow properly in the lab. We all resubmitted blood

samples about 2 weeks ago when a was in for growth-hormone

stim testing. We are awaiting results regarding whether she is GH-

deficient. Are there any other RSS parents that have children with

delayed expressive language. There is so much more to our story, but

this is getting long. I must say that I have read about 1000 e-mails

from the archives and have had much inspiration from you all.

Thank you,

Sincerely,

Diane Zanghi (mother to a, sliding on the 3rd%ile for H/W and

75th% for head circ., RSS - I guess, and 6yrs., 78#, 51 " -

He's at the other end of the growth chart.)

[Guest guest]

Wow, Diane! What a miracle baby you have there! Actually, a is no

longer a baby, but she sure is a miracle! Welcome to the list. I was

fascinated by a's story and would love to hear some more sometime.

I am so glad your experiences at CHOP were postitive ones. We had Max there

when he was 5 months old and did not have a diagnosis. They told us (well,

it was Dr. Moshang) to take him home, that there was nothing wrong with him

and that I was the one making him sick by having him in the hospital so

often. Man, was he ever wrong! (I assume you know all about our kids after

reading all the posts, so I won't bother giving you more details on Max.)

Anyway, welcome to the list. There are a lot of very friendly and

supportive people here!

Jodi

a

>

> Hello Everyone,

>

> I was directed to this support group through Friend and am

> grateful to her. We arrived to a diagnosis of RSS in a round about

> way. a was born by way of emergency c-section due to fetal

> distress after a long labor. She was 5lbs 12 oz and 19 inches long.

> She aspriated meconium & blood so badly that her circulatory system

> became toxic. Within 3 hours we had her emergency baptized and she

> was airlifted to CHOP in Phila., PA. There she was place on ECMO,

> which is basically heart and lung bypass. The blood is taken out of

> the body, purified and then replaced. She needed many blood

> transfusions and was on every type of med imaginable. What a sight.

> The whole room was filled with technology to support her vitals. You

> could hardly even see where the baby was upon entering the ecmo

> room. Anyhow, after many trials and tribulations she overcame these

> challenges. But, then came the issue of gaining weight. She was fed

> by an ng-tube and then progressed onto a special bottle (The

> Haberman). She was a projectile vommiter. She was sickly and also

> had the chronic lung disease issues and deaf in her left ear. A lot

> of this has, I'm sure, delayed an RSS diagnosis because failure to

> gain weight, developmental delays, and low muscle tone were all

> blamed on her beginnings. We have been to many specialists as I see

> most of you have so, no need to list them. We are fortunate that she

> eats, yet she remains small in size. She is 3.5, 22lbs., 33 in. RSS

> was suspected last year and has been confirmed, I guess, just this

> July. She has tested positive for maternal UPD7 through the Canadian

> study. But, we are hesitant to trust the test because my husband's

> blood did not grow properly in the lab. We all resubmitted blood

> samples about 2 weeks ago when a was in for growth-hormone

> stim testing. We are awaiting results regarding whether she is GH-

> deficient. Are there any other RSS parents that have children with

> delayed expressive language. There is so much more to our story, but

> this is getting long. I must say that I have read about 1000 e-mails

> from the archives and have had much inspiration from you all.

>

> Thank you,

> Sincerely,

>

> Diane Zanghi (mother to a, sliding on the 3rd%ile for H/W and

> 75th% for head circ., RSS - I guess, and 6yrs., 78#, 51 " -

> He's at the other end of the growth chart.)

>

>

>

>

>

[Guest guest]

Dear Jodi,

Thank you for responding so quickly! I am sorry to hear that you

didn't have the same positive experiences that we have had at CHOP in

PA, however, as wonderful as the NICU was we could say that we have

not always had as good experiences there. On the whole, though, we

trust in that hospital. I find it interesting that you used to speak

with Dr. Silver. I can't believe he at one time stated RSS kids to

be mentally retarded. How is Max's H. Pylori? And, visit to Dr.

H.? Until we began to read the list my husband, Vince and I had not

considered a second opinion. Well, for now we are awaiting the GH

results.

Diane

[Guest guest]

Hi Dianne

I found this group a week or two ago and I tell you what I have not

felt more " accepted " in the world of RSS in a long time In forever

actually. These people actually know what you are going through and

understand. They understand the frustration and depression. You

can ask anything a people help with your questions. Just keep

reading and learning. I was the same way when I stumbled onto this

group all I could do was read the messages all of them, I did not

want to stop. I leared so Much. I was able to go see s ped.

today and was armed with all the questions I needed to ask It felt so

good to know something. Anyway keep reading and asking questions you

will feel better, and nobody here thinks you are crazy!!

Madonna Mom to steven 13months 16 lbs. 28 inches

> Hello Everyone,

>

> I was directed to this support group through Friend and

am

> grateful to her. We arrived to a diagnosis of RSS in a round about

> way. a was born by way of emergency c-section due to fetal

> distress after a long labor. She was 5lbs 12 oz and 19 inches

long.

> She aspriated meconium & blood so badly that her circulatory system

> became toxic. Within 3 hours we had her emergency baptized and she

> was airlifted to CHOP in Phila., PA. There she was place on ECMO,

> which is basically heart and lung bypass. The blood is taken out

of

> the body, purified and then replaced. She needed many blood

> transfusions and was on every type of med imaginable. What a

sight.

> The whole room was filled with technology to support her vitals.

You

> could hardly even see where the baby was upon entering the ecmo

> room. Anyhow, after many trials and tribulations she overcame

these

> challenges. But, then came the issue of gaining weight. She was

fed

> by an ng-tube and then progressed onto a special bottle (The

> Haberman). She was a projectile vommiter. She was sickly and also

> had the chronic lung disease issues and deaf in her left ear. A

lot

> of this has, I'm sure, delayed an RSS diagnosis because failure to

> gain weight, developmental delays, and low muscle tone were all

> blamed on her beginnings. We have been to many specialists as I

see

> most of you have so, no need to list them. We are fortunate that

she

> eats, yet she remains small in size. She is 3.5, 22lbs., 33 in.

RSS

> was suspected last year and has been confirmed, I guess, just this

> July. She has tested positive for maternal UPD7 through the

Canadian

> study. But, we are hesitant to trust the test because my husband's

> blood did not grow properly in the lab. We all resubmitted blood

> samples about 2 weeks ago when a was in for growth-hormone

> stim testing. We are awaiting results regarding whether she is GH-

> deficient. Are there any other RSS parents that have children with

> delayed expressive language. There is so much more to our story,

but

> this is getting long. I must say that I have read about 1000 e-

mails

> from the archives and have had much inspiration from you all.

>

> Thank you,

> Sincerely,

>

> Diane Zanghi (mother to a, sliding on the 3rd%ile for H/W

and

> 75th% for head circ., RSS - I guess, and 6yrs., 78#, 51 " -

> He's at the other end of the growth chart.)

[Guest guest]

Hi Madonna,

Thank you for your response. I think you are right when you say it

makes you feel more in control when you can ask questions to the

doctor and feel informed. I would swear that I'm addicted to reading

the archives because they have so much info! I wonder how it would

have been if I had found this group earlier when my husband and I

were going through a lot of the craziness with a a year and a

half ago.

Sincerely,

Diane

> > Hello Everyone,

> >

> > I was directed to this support group through Friend and

> am

> > grateful to her. We arrived to a diagnosis of RSS in a round

about

> > way. a was born by way of emergency c-section due to

fetal

> > distress after a long labor. She was 5lbs 12 oz and 19 inches

> long.

> > She aspriated meconium & blood so badly that her circulatory

system

> > became toxic. Within 3 hours we had her emergency baptized and

she

> > was airlifted to CHOP in Phila., PA. There she was place on

ECMO,

> > which is basically heart and lung bypass. The blood is taken out

> of

> > the body, purified and then replaced. She needed many blood

> > transfusions and was on every type of med imaginable. What a

> sight.

> > The whole room was filled with technology to support her vitals.

> You

> > could hardly even see where the baby was upon entering the ecmo

> > room. Anyhow, after many trials and tribulations she overcame

> these

> > challenges. But, then came the issue of gaining weight. She was

> fed

> > by an ng-tube and then progressed onto a special bottle (The

> > Haberman). She was a projectile vommiter. She was sickly and

also

> > had the chronic lung disease issues and deaf in her left ear. A

> lot

> > of this has, I'm sure, delayed an RSS diagnosis because failure

to

> > gain weight, developmental delays, and low muscle tone were all

> > blamed on her beginnings. We have been to many specialists as I

> see

> > most of you have so, no need to list them. We are fortunate that

> she

> > eats, yet she remains small in size. She is 3.5, 22lbs., 33 in.

> RSS

> > was suspected last year and has been confirmed, I guess, just

this

> > July. She has tested positive for maternal UPD7 through the

> Canadian

> > study. But, we are hesitant to trust the test because my

husband's

> > blood did not grow properly in the lab. We all resubmitted blood

> > samples about 2 weeks ago when a was in for growth-hormone

> > stim testing. We are awaiting results regarding whether she is

GH-

> > deficient. Are there any other RSS parents that have children

with

> > delayed expressive language. There is so much more to our story,

> but

> > this is getting long. I must say that I have read about 1000 e-

> mails

> > from the archives and have had much inspiration from you all.

> >

> > Thank you,

> > Sincerely,

> >

> > Diane Zanghi (mother to a, sliding on the 3rd%ile for H/W

> and

> > 75th% for head circ., RSS - I guess, and 6yrs., 78#,

51 " -

> > He's at the other end of the growth chart.)

[Guest guest]

Hi Diane

I am relatively new too. I think I've been into this for 3 or 4 weeks now. I

totally stumbled into it by accident late one night while browsing

Silver Syndrome. And wow! For the first time in my life I feel like I am no

longer alone.

I think Madonna and I are the new kids on the block. So we'll make it a

3some! I'm sure if you've been reading back in the archives you will have

come across numerous submissions by myself.

I am up in Canada and am having trouble finding the support of doctors and,

even, educational services that seems you guys all have down there.

Good luck. I'm glad your husband is involved in the reading. My ex husband

never excepted Adam's diagnosis (we split a couple of years after it) and

now I am desparate to get growth hormone. The docs are all set, he is

refusing his permission (he's in favour of homeopathic in case you haven't

gotten to my soap box submissions yet!!) and I am forever printing various

emails from here to " prove " to him I am not making this stuff up. It can

work. Too bad I can't demonstrate the look of contempt and disinterest he

shows me everytime I give him a new letter to read!! You are lucky....hug

your husband tonight extra special.

Debby

Dzanghi@... wrote:

>

> Hi Madonna,

> Thank you for your response. I think you are right when you say it

> makes you feel more in control when you can ask questions to the

> doctor and feel informed. I would swear that I'm addicted to reading

> the archives because they have so much info! I wonder how it would

> have been if I had found this group earlier when my husband and I

> were going through a lot of the craziness with a a year and a

> half ago.

> Sincerely,

> Diane

>

>

> > > Hello Everyone,

> > >

> > > I was directed to this support group through Friend and

> > am

> > > grateful to her. We arrived to a diagnosis of RSS in a round

> about

> > > way. a was born by way of emergency c-section due to

> fetal

> > > distress after a long labor. She was 5lbs 12 oz and 19 inches

> > long.

> > > She aspriated meconium & blood so badly that her circulatory

> system

> > > became toxic. Within 3 hours we had her emergency baptized and

> she

> > > was airlifted to CHOP in Phila., PA. There she was place on

> ECMO,

> > > which is basically heart and lung bypass. The blood is taken out

> > of

> > > the body, purified and then replaced. She needed many blood

> > > transfusions and was on every type of med imaginable. What a

> > sight.

> > > The whole room was filled with technology to support her vitals.

> > You

> > > could hardly even see where the baby was upon entering the ecmo

> > > room. Anyhow, after many trials and tribulations she overcame

> > these

> > > challenges. But, then came the issue of gaining weight. She was

> > fed

> > > by an ng-tube and then progressed onto a special bottle (The

> > > Haberman). She was a projectile vommiter. She was sickly and

> also

> > > had the chronic lung disease issues and deaf in her left ear. A

> > lot

> > > of this has, I'm sure, delayed an RSS diagnosis because failure

> to

> > > gain weight, developmental delays, and low muscle tone were all

> > > blamed on her beginnings. We have been to many specialists as I

> > see

> > > most of you have so, no need to list them. We are fortunate that

> > she

> > > eats, yet she remains small in size. She is 3.5, 22lbs., 33 in.

> > RSS

> > > was suspected last year and has been confirmed, I guess, just

> this

> > > July. She has tested positive for maternal UPD7 through the

> > Canadian

> > > study. But, we are hesitant to trust the test because my

> husband's

> > > blood did not grow properly in the lab. We all resubmitted blood

> > > samples about 2 weeks ago when a was in for growth-hormone

> > > stim testing. We are awaiting results regarding whether she is

> GH-

> > > deficient. Are there any other RSS parents that have children

> with

> > > delayed expressive language. There is so much more to our story,

> > but

> > > this is getting long. I must say that I have read about 1000 e-

> > mails

> > > from the archives and have had much inspiration from you all.

> > >

> > > Thank you,

> > > Sincerely,

> > >

> > > Diane Zanghi (mother to a, sliding on the 3rd%ile for H/W

> > and

> > > 75th% for head circ., RSS - I guess, and 6yrs., 78#,

> 51 " -

> > > He's at the other end of the growth chart.)