IVIG pediatric services near PA

[Guest guest]

Hi All,

My daughter had her first IVIG infusion at Dr Rosignol office (FL) in January.

This first IVIG was so quick and well done that Sofia did not fuss too much.

They are experts doing it so they taped the IV to her arm and cover it very

well. Then they connected it to a pump and put this pump in a backpack so Sofia

was able to move around the four hours with no problem.

Since 4 weeks after that, we have been trying to do the second infusion here in

PA but we have had no luck. After managing getting a prescription from our

pediatrician to endorse the one from our DAN dr in Florida, we got the medicine

but the nurses coming to our home have not been able to tape and wrap the IV

site properly and connect it to the pump so Sofia manages to pull it off and it

start to leak or she takes it completely off. We have tried twice and at this

point we are so frustrated that we are evaluating the option of traveling to FL

again to continue with this treatment.

IVIG has helped her, during these 2 months Sofia has mastered several programs

that were stuck before the IVIG and she is more aware of her environment. She is

happier, more interested in our son, better following directions, motor planning

improved and she is more social and willing to play. The first weeks after the

IVIG she was talking more, unfortunately this treatment wears off from the body

after some weeks and she is not keeping the gains in language. The other gains

have been permanent during these months.

Before buying tickets to FL I wanted to check if someone has done IVIG near

Pennsylvania and know an infusion center that is willing to work with our DAN dr

or our pediatrician and that provides highly skilled nurses experienced in doing

IVIG for small kids that do not understand they need to be still and cooperate.

My daughter does not have big behavior issues (like aggression) but after 3

trials of inserting needles on her she is definitely mad so we are looking for 

IVIG infusion services from quick and experienced nurses that are familiar with

setting it up to allow the kids to move around during the treatment.

Sorry for the long post and thanks in advance for any information

Regards

Mariluz Mother of Sofia, 3 y Old, ASD

[Guest guest]

Have you considered doing it at home? My son had his first IVIG in an

infusion center, then his 12th when we increased dosage. Other than that, 14 of

his treatments were done in the comfort of our home.

Kerrie

In a message dated 3/24/2010 12:40:24 P.M. Eastern Daylight Time,

mariluzcubillos@... writes:

Hi All,

My daughter had her first IVIG infusion at Dr Rosignol office (FL) in

January. This first IVIG was so quick and well done that Sofia did not fuss too

much. They are experts doing it so they taped the IV to her arm and cover

it very well. Then they connected it to a pump and put this pump in a

backpack so Sofia was able to move around the four hours with no problem.

Since 4 weeks after that, we have been trying to do the second infusion

here in PA but we have had no luck. After managing getting a prescription

from our pediatrician to endorse the one from our DAN dr in Florida, we got

the medicine but the nurses coming to our home have not been able to tape and

wrap the IV site properly and connect it to the pump so Sofia manages to

pull it off and it start to leak or she takes it completely off. We have

tried twice and at this point we are so frustrated that we are evaluating the

option of traveling to FL again to continue with this treatment.

IVIG has helped her, during these 2 months Sofia has mastered several

programs that were stuck before the IVIG and she is more aware of her

environment. She is happier, more interested in our son, better following

directions, motor planning improved and she is more social and willing to play.

The

first weeks after the IVIG she was talking more, unfortunately this

treatment wears off from the body after some weeks and she is not keeping the

gains

in language. The other gains have been permanent during these months.

Before buying tickets to FL I wanted to check if someone has done IVIG

near Pennsylvania and know an infusion center that is willing to work with our

DAN dr or our pediatrician and that provides highly skilled nurses

experienced in doing IVIG for small kids that do not understand they need to be

still and cooperate. My daughter does not have big behavior issues (like

aggression) but after 3 trials of inserting needles on her she is definitely

mad so we are looking for IVIG infusion services from quick and experienced

nurses that are familiar with setting it up to allow the kids to move

around during the treatment.

Sorry for the long post and thanks in advance for any information

Regards

Mariluz Mother of Sofia, 3 y Old, ASD