Re: THank you and some ?'s

[Guest guest]

Hi , I can tell what I know. Our son Lucas who is also adopted gets

IVIG every 3 weeks. Our doctor has been very clear that the infection

severity and frequency are the guiding factors in determining the amount and

frequency of the Ig. We give it every 3 weeks because we were told the half

life was 21-23 days. We found for the 1st six months his infections were

about the same. He has never had a life threatening infection just severe

chronic sinusitis, asthma, pneumonia, ear infections. The second part of that

year he did very well. As the fall came last year Lucas began to have more

chronic and more frequent infections. The doctor decided to up his dose from

10-15gms. His trough level was 800 but he was still having fairly regular

infections. The increase helped dramatically for about six months. ( I am

also remembering that he had started to school. Kindergarten) We had hoped

to spread him out this summer to every four weeks but he began having a fever

between every cycle and then we were hospitalized with a temp of 104-105 for

5 days. Fortunately it was viral and good fluids did the trick to get him

through it. So our immunologist/allergist who is also a pediatrician does

not feel comfortable making any changes. So what I am saying the long way is

that it is very important that you look at the individual child and how he is

doing not only numbers. I feel extremely fortunate to have our doctors. We

are in Bellingham, WA. which is not a huge town but he trained at National

Jewish in Denver. In your case it sounds like the IVIG is to give him a

little better utilization of the Ig so that the body has a bit more resolve.

Getting antibodies from others would mean that his body may not have to work

as hard to fight infections since his own t cells have a difficult time

fighting his infections. Also, because I am a nurse I insisted on a port at

first. But my sweet immuno said why don't we give it a try and if we have a

lot of problems we will move towards the port. Fortunately Lucas does have

good veins. We have the same nurse at the doctors office and we usually only

require 1-2 sticks with emla. We have used the same vein primarily. When we

have had to have another nurse it takes many more sticks. We hope it will

continue to hold up. We also had one episode of prolonged use of steroids for

his Asthma, (oral) that just made his veins blow immediately. It was taking

4 + sticks. I again was ready to put in a port, but after we got it out of

his system we seemed to do fine again. Our doctor has very very slow

increase in rate over the 1st and second hour of infusion it is a pain for

the nurse to come in and have to bump it up every 5 minutes and only up by 4

cc but it makes a huge difference for him as far as reactions (fever, low

b/p, headache, nausea) and side effects after his infusion (headaches, joint

pain etc.). His max rate has been 65cc which takes only about 5 hours to

infuse. We have been doing it at the doctors office and it has been great

for us. Someday we may do it at home but with Lucas behavioral, sensory

integration problems it is a bit too much risk for now. Hope this helps. I am

very surprised that Lucas does so well with his IVs but I have put a lot of

work in preparing him that it is a part of life and that each of has our

burdens or gifts to bear. We make it a special day for him. He get to buy

one toy usually between $5 and 10 dollars and he can eat anything he wants on

that day. We also give him a coke before his infusion that seems to make a

difference with his headaches.

( someone here told me that) . I hope this helps. BARBIE (Lucas 6 dysgamm,

hypogamm, asthma, sensory integration and bipolar etc.)

[Guest guest]

Hi ,

I've been following your posts and today's post struck a real question in my mind. "We did have an air report done and it came back fine." If the inside air is fine, then why are you having such a medical problem? I would be very interested in knowing more about your report, what was tested and how, who was the investigation company, who was the testing lab, was there a "Chain Of Custody" report submitted with the samples, etc. Should the inside air turn out to be otherwise (ie: questionable), I would refrain from moving any personal items from that location into your current accomodations until the situation is resolved.

I am in the mold investigation and analysis business myself and something doesn't sound right. Please email me directly at moldtesting@... . Incidentally, you are at the north end of my area. I'm not mentioning my company's name as this is not a solicitation. I'm in the Auburn (CA) area and would like to help you as I can.

Ron Dierlam