Question:
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Here is where I am coming from....
If anyone wants to know the story ask. This is Ian at 2 days old.
Oops. A little big. Sorry. :o What you don't see if the LARGE bruise under his hat.
Is that hospital pics? And this may sound really stupid. But is that his beg. of P?
Im sorry you have to go through that!! Truly I am. I dont know what it is liketo have a child with P. But I have it. And I am sure it is horrible. I think I speak for most of us when I say we didnt mean to run you off. You just upset us deeply in the way you came off!
I think my mom took it. It was REALLY BIG and I have downsized it ALOT. Thought I had it small enough, but it's late, ya know? He came out with that beautiful scab under his nose and a lovely bruise on his head. I am sure that was the beginning. What that pic doesn't show you is the way he looked at birth. He looked as if he had any number of genetic diseases starting with Down's Syndrome and going on to things the doctors wouldn't name. Thankfully all he has today is P and asthma and some food allergies. Around our house his P is nothing compared to what we could have been living with.
That is very true. Even with his little scab he is still a cutie. I got on your web page. He is beautiful. I couldnt tell he had P if that makes you feel any better. You should go post a pic of him on "My goofy child thread"
It is just pics of my child. He would be a welcome addition!
I will. I am still working on the webpage, obviously. I had one that was GREAT and didn't touch it for a month or two while we moved and Yahoo! deleted it. :mad: I need to take some new pics. We had a really great summer where his skin was almost under control. Not so now. He is looking kinda rough again. It will be back to the doctor soon...
Im sure he will get better. What kinda meds can a 2 yr old take?
Just in case you are interested, I know that Enbrel is starting trials on young children. I'm not sure if you would want Ian to participate, or if there are any trials in your area, but it's something to consider.
By the way, I understand what it's like to have a child who appears disfigured. My daughter developed a huge birthmark on her face shortly after birth, and we constantly dealt with questions as to what happened to her. Fortunately, that is something that faded as she got older, but I know it affected her and us for many years.
We also dealt with our son being born almost 3 months premature, weighing 2 lbs, and spending 3 months not knowing if he would survive or not. He is now a very healthy 14 yr old.
We are grateful for every moment we have with both of these children, but have had our "why us" days often while dealing with this. I hope you understand that there is no right or wrong way to cope with serious problems or illness in our lives, or our children's lives. The important part is to support those affected in whatever way works best for them and us.
Best wishes.
Kim
Your baby is absolutely beautiful. I did not mean to upset you in any way. I too am a Mom, so I know where you are coming from. I hope you understand why we didn't take what you said lightly. We are all here to help one another. There have been days where I couldn't get out of bed because of my p, days where I have cried myself to sleep because of the pain, bleeding, and cracking. These boards are all I have. I don't know of another person who has this disease. I don't have a support group where I live. So on the days when I'm not at my best, I am so thankful that you all are here to help and understand what I'm going though. I pray that you stay, so that we all can get support from one another. I know your baby will get better.
He is a mostly healthy, mess of a 2 1/2 yr old now. I wish I had some of his other newborn pictures on disk. Need to go use my friends scanner. :)
Thought Enbrel was just for arthritis? Can it be used on those with "just" P? Ian can use just about anything. The dose must be carefully monitored though.
Yeah enbrel can be used on P. The commercials state that it is for Arthritis. But my derm says P users benifit from it!
Hi Carrie,
I am soooooo glad to see you are still with us. Your little boy is absolutely adorable! I have a son of 5 years and I am truly blessed that he does not have p. My p started at 15/16 yrs old. My father's started when he was in his thirties. I have had some scares when he would develop a rash that I could not explain, but so far so good. I began my prayers as soon as I found out I was pregnant that my child would not have to suffer the physical and mental aspects of this disease as I believe most mothers begin praying for all around healthy children, too.
I truly admire your dedication to your son. I believe it is extremely important to have a strong sense of self worth and I believe that you seem to be the strong mother that can give him just that. He is very, very fortunate to have you. I would have to think, also, that the giving, giving, giving of oneself to a child so small and with such an uncomfortable problem with no easy answers or relief can be very tiring. It is a job that I believe only a mother can do...and a truly wonderful mother at that!!! Keep up the great job.
Thought Enbrel was just for arthritis? Can it be used on those with "just" P? Ian can use just about anything. The dose must be carefully monitored though.
Yes, the Enbrel rep who brought it up said the studies are for p in children. My friend's daughter (age 11) will be participating in the study locally. I would contact Enbrel or possibly Enliven Services for information on where the studies are being conducted. Good luck.
Kim
Carrie,,,,,he has such a perfect round face,,,so beautiful,,,for a little boy,,,just try and take it easy,,,,i've been soaking in baking soda,,,not much,,,but I do find it helps the itching and flaking,,,,and I know they have this baby stuff to put in water and it calms them and relaxes them,,,it's in the baby dept,,of any store.....like I said my heart goes out to you and your little boy,,,,but we are here for you and we all have bad days,,,sometimes i'm so grouchy and miserable,,,but what can we do,,,just try all different things to make it less stressful....don't leave,,,we all help each other with new solutions,,,and besides we can yell at each other,,,it's only over the computer,,,so who cares right,,,at least we can't smack each other,,,lol always know when your down,,,just get on here and bitch and moan.... I hope you have help,,,to give you some breaks.... if you don't,,,come to new jersey,,,,i'll give you a break,,,(((( I have no grandchildren yet!!!! )))) TAKE CARE IN THE MEANTIME!!!!!! :)
hi carrie thank you for sairing the wonderful pic of your son :D .
have a waonderful night
richard
If anyone wants to know the story ask. This is Ian at 2 days old.
Answers:
Oops. A little big. Sorry. :o What you don't see if the LARGE bruise under his hat.
Answers:
Is that hospital pics? And this may sound really stupid. But is that his beg. of P?
Im sorry you have to go through that!! Truly I am. I dont know what it is liketo have a child with P. But I have it. And I am sure it is horrible. I think I speak for most of us when I say we didnt mean to run you off. You just upset us deeply in the way you came off!
Answers:
I think my mom took it. It was REALLY BIG and I have downsized it ALOT. Thought I had it small enough, but it's late, ya know? He came out with that beautiful scab under his nose and a lovely bruise on his head. I am sure that was the beginning. What that pic doesn't show you is the way he looked at birth. He looked as if he had any number of genetic diseases starting with Down's Syndrome and going on to things the doctors wouldn't name. Thankfully all he has today is P and asthma and some food allergies. Around our house his P is nothing compared to what we could have been living with.
Answers:
That is very true. Even with his little scab he is still a cutie. I got on your web page. He is beautiful. I couldnt tell he had P if that makes you feel any better. You should go post a pic of him on "My goofy child thread"
It is just pics of my child. He would be a welcome addition!
Answers:
I will. I am still working on the webpage, obviously. I had one that was GREAT and didn't touch it for a month or two while we moved and Yahoo! deleted it. :mad: I need to take some new pics. We had a really great summer where his skin was almost under control. Not so now. He is looking kinda rough again. It will be back to the doctor soon...
Answers:
Im sure he will get better. What kinda meds can a 2 yr old take?
Answers:
Just in case you are interested, I know that Enbrel is starting trials on young children. I'm not sure if you would want Ian to participate, or if there are any trials in your area, but it's something to consider.
By the way, I understand what it's like to have a child who appears disfigured. My daughter developed a huge birthmark on her face shortly after birth, and we constantly dealt with questions as to what happened to her. Fortunately, that is something that faded as she got older, but I know it affected her and us for many years.
We also dealt with our son being born almost 3 months premature, weighing 2 lbs, and spending 3 months not knowing if he would survive or not. He is now a very healthy 14 yr old.
We are grateful for every moment we have with both of these children, but have had our "why us" days often while dealing with this. I hope you understand that there is no right or wrong way to cope with serious problems or illness in our lives, or our children's lives. The important part is to support those affected in whatever way works best for them and us.
Best wishes.
Kim
Answers:
Your baby is absolutely beautiful. I did not mean to upset you in any way. I too am a Mom, so I know where you are coming from. I hope you understand why we didn't take what you said lightly. We are all here to help one another. There have been days where I couldn't get out of bed because of my p, days where I have cried myself to sleep because of the pain, bleeding, and cracking. These boards are all I have. I don't know of another person who has this disease. I don't have a support group where I live. So on the days when I'm not at my best, I am so thankful that you all are here to help and understand what I'm going though. I pray that you stay, so that we all can get support from one another. I know your baby will get better.
Answers:
He is a mostly healthy, mess of a 2 1/2 yr old now. I wish I had some of his other newborn pictures on disk. Need to go use my friends scanner. :)
Answers:
Thought Enbrel was just for arthritis? Can it be used on those with "just" P? Ian can use just about anything. The dose must be carefully monitored though.
Answers:
Yeah enbrel can be used on P. The commercials state that it is for Arthritis. But my derm says P users benifit from it!
Answers:
Hi Carrie,
I am soooooo glad to see you are still with us. Your little boy is absolutely adorable! I have a son of 5 years and I am truly blessed that he does not have p. My p started at 15/16 yrs old. My father's started when he was in his thirties. I have had some scares when he would develop a rash that I could not explain, but so far so good. I began my prayers as soon as I found out I was pregnant that my child would not have to suffer the physical and mental aspects of this disease as I believe most mothers begin praying for all around healthy children, too.
I truly admire your dedication to your son. I believe it is extremely important to have a strong sense of self worth and I believe that you seem to be the strong mother that can give him just that. He is very, very fortunate to have you. I would have to think, also, that the giving, giving, giving of oneself to a child so small and with such an uncomfortable problem with no easy answers or relief can be very tiring. It is a job that I believe only a mother can do...and a truly wonderful mother at that!!! Keep up the great job.
Answers:
Thought Enbrel was just for arthritis? Can it be used on those with "just" P? Ian can use just about anything. The dose must be carefully monitored though.
Yes, the Enbrel rep who brought it up said the studies are for p in children. My friend's daughter (age 11) will be participating in the study locally. I would contact Enbrel or possibly Enliven Services for information on where the studies are being conducted. Good luck.
Kim
Answers:
Carrie,,,,,he has such a perfect round face,,,so beautiful,,,for a little boy,,,just try and take it easy,,,,i've been soaking in baking soda,,,not much,,,but I do find it helps the itching and flaking,,,,and I know they have this baby stuff to put in water and it calms them and relaxes them,,,it's in the baby dept,,of any store.....like I said my heart goes out to you and your little boy,,,,but we are here for you and we all have bad days,,,sometimes i'm so grouchy and miserable,,,but what can we do,,,just try all different things to make it less stressful....don't leave,,,we all help each other with new solutions,,,and besides we can yell at each other,,,it's only over the computer,,,so who cares right,,,at least we can't smack each other,,,lol always know when your down,,,just get on here and bitch and moan.... I hope you have help,,,to give you some breaks.... if you don't,,,come to new jersey,,,,i'll give you a break,,,(((( I have no grandchildren yet!!!! )))) TAKE CARE IN THE MEANTIME!!!!!! :)
Answers:
hi carrie thank you for sairing the wonderful pic of your son :D .
have a waonderful night
richard
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