Re: LONG- Primary Pulmonary Hypertension (copy of letter to Dr. Len)

[Guest guest]

Hi!

Just thought I would share a bit of my experience with my son .

was born with kidney problems, a condition called chylus

ascites(lymph fluid accumulated in his abdomen, and sever pulmonary

hypertension. He was placed immediately on an oscillating ventilator and

given nitric oxide treatments ( back then it was experimental and we had to

sign an experimental waiver). He didnt respond to the first round of

nitric, so they did a second round - no response. The doctor had pretty

much told me there was nothing further they could do - they didnt think they

could get him off of the ventilator. I left the NICU had a good long cry

and came back just in time to hear one of the respiratory therapists say

" has anyone tried laying him on his stomache? " The nurse said okay, lets

try it and 's " SATS " went from 88 to 99 in about 30 seconds. He

recovered so quickly from then on that the doctors were astounded. They had

no explanation as to why it made such a big difference. We followed up 6

months later and his hypertension was completely gone. Now except for a

tendency to get every cold bug that passes his way, hes doing great. The

point of the story is dont let all of the doctors gloom & doom discourage

you. Dont give up because you never know what the future might hold. There

is someone out there with the answer for you! I wish I could be of more

direct assistance. I am from Indiana and was treated at Riley

Hospital for Children here. My sister in law is a pediatric nurse

affiliated with the Childrens Hospital in Philadelphia and she speaks quite

highly of it. Good luck

Jodi

LONG- Primary Pulmonary Hypertension (copy of letter to

Dr. Len)

>Dr. Len,

>

>Forgive me for pestering you, but several people thought your opinion

>might be of some benefit to me. My daughter is now a year

>old. She has Down Syndrome. That is the easy part. She has had a

>PDA (resolved itself), ASD/VSD repaired (VSD leaking slightly, no big

>deal), Shunting from Left atrium to right ventricle, a BARD peg

>placed for feeding, no left kidney and reflux from the bladder to the

>right kidney (grade 2)(discovered last week), as well as a horrific

>diagnosis of Primary Pulmonary Hypertension.

>

> has quite the group of Doctors, Nurses, Therapists, etc., as I

>am sure you are aware yourself. My dilemma is this. I need to know

>where to look next. My cardiologist is with the largest group in

>this area. We have been playing phone tag with him for a month now.

>He has been talking with a friend of his at Columbia Presbyterian in

>New York trying to get info on the Primary Pulmonary Hypertension.

>He says there is no one here who can help us. New York is sending a

>packet of information that they give to all new parents of PPH

>children.

>

>Long story short, this is what I know about Primary Pulmonary

>Hypertension. There is no treatment available to cure this disease.

>It is a fatal disease. I was told at first that she would survive 10

>years. I have now been told, that she will only survive 2-5 years.

> does not respond to the traditional treatments (like Nitric

>Oxide). There was the suggestion of placement of a broviac line(SP?)

>to allow a constant pump infusion of the drug " Prostacycline

>(SP?). I

>asked about a lung transplant, but was told that they didn't

>think

>she would qualify because of her DS. HE doesn't even think we do

>them here in Phoenix. Maybe Tucson, Arizona or California.

>

>My DS support group is trying to locate any other parents who have

>been through this. I want a quality life for her regardless of the

>time she will survive. I do not want to torture her or subject her

>to horrific events for my own sake. I would like to be able to make

>informed decisions before I progress into a desperate parent.

>is holding her own right now. She is on supplemental O2 75% of the

>day & she is gaining weight slowly. I might also add that she is

>quite happy and very entertaining at times. You would not know by

>looking at her that there are problems.

>

>I would appreciate any thought you may have. I will post a query on

>the list as well to see if anyone else has had similar

>experiences.

>

>Thank you in advance for your kindness.

>

>Lesa Bornost

>

>

>

>

>Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

>

>

[Guest guest]

Hi!

Just thought I would share a bit of my experience with my son .

was born with kidney problems, a condition called chylus

ascites(lymph fluid accumulated in his abdomen, and sever pulmonary

hypertension. He was placed immediately on an oscillating ventilator and

given nitric oxide treatments ( back then it was experimental and we had to

sign an experimental waiver). He didnt respond to the first round of

nitric, so they did a second round - no response. The doctor had pretty

much told me there was nothing further they could do - they didnt think they

could get him off of the ventilator. I left the NICU had a good long cry

and came back just in time to hear one of the respiratory therapists say

" has anyone tried laying him on his stomache? " The nurse said okay, lets

try it and 's " SATS " went from 88 to 99 in about 30 seconds. He

recovered so quickly from then on that the doctors were astounded. They had

no explanation as to why it made such a big difference. We followed up 6

months later and his hypertension was completely gone. Now except for a

tendency to get every cold bug that passes his way, hes doing great. The

point of the story is dont let all of the doctors gloom & doom discourage

you. Dont give up because you never know what the future might hold. There

is someone out there with the answer for you! I wish I could be of more

direct assistance. I am from Indiana and was treated at Riley

Hospital for Children here. My sister in law is a pediatric nurse

affiliated with the Childrens Hospital in Philadelphia and she speaks quite

highly of it. Good luck

Jodi

LONG- Primary Pulmonary Hypertension (copy of letter to

Dr. Len)

>Dr. Len,

>

>Forgive me for pestering you, but several people thought your opinion

>might be of some benefit to me. My daughter is now a year

>old. She has Down Syndrome. That is the easy part. She has had a

>PDA (resolved itself), ASD/VSD repaired (VSD leaking slightly, no big

>deal), Shunting from Left atrium to right ventricle, a BARD peg

>placed for feeding, no left kidney and reflux from the bladder to the

>right kidney (grade 2)(discovered last week), as well as a horrific

>diagnosis of Primary Pulmonary Hypertension.

>

> has quite the group of Doctors, Nurses, Therapists, etc., as I

>am sure you are aware yourself. My dilemma is this. I need to know

>where to look next. My cardiologist is with the largest group in

>this area. We have been playing phone tag with him for a month now.

>He has been talking with a friend of his at Columbia Presbyterian in

>New York trying to get info on the Primary Pulmonary Hypertension.

>He says there is no one here who can help us. New York is sending a

>packet of information that they give to all new parents of PPH

>children.

>

>Long story short, this is what I know about Primary Pulmonary

>Hypertension. There is no treatment available to cure this disease.

>It is a fatal disease. I was told at first that she would survive 10

>years. I have now been told, that she will only survive 2-5 years.

> does not respond to the traditional treatments (like Nitric

>Oxide). There was the suggestion of placement of a broviac line(SP?)

>to allow a constant pump infusion of the drug " Prostacycline

>(SP?). I

>asked about a lung transplant, but was told that they didn't

>think

>she would qualify because of her DS. HE doesn't even think we do

>them here in Phoenix. Maybe Tucson, Arizona or California.

>

>My DS support group is trying to locate any other parents who have

>been through this. I want a quality life for her regardless of the

>time she will survive. I do not want to torture her or subject her

>to horrific events for my own sake. I would like to be able to make

>informed decisions before I progress into a desperate parent.

>is holding her own right now. She is on supplemental O2 75% of the

>day & she is gaining weight slowly. I might also add that she is

>quite happy and very entertaining at times. You would not know by

>looking at her that there are problems.

>

>I would appreciate any thought you may have. I will post a query on

>the list as well to see if anyone else has had similar

>experiences.

>

>Thank you in advance for your kindness.

>

>Lesa Bornost

>

>

>

>

>Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

>

>