Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 Do you feel the IVIG has helped cut down the number of viruses Katy has gotten? Or does it just keep them from turning into secondary bacterial infections? I'm a bit confused right now..... trying to figure it all out. Of course I did not look into the IVIG much b/c I was hoping the ENT could really do something for the boys. Also-- does anyone have any good web sites for the dose info? Also-- this first day he boys get it, how long will it take? Do I plan on 8hrs at the hospital? Do I assume that the nurses, etc KNOW to run it slow? Do I ask for them t o be premedicated? or they just do that automatically? Will IVIG help keep my boys from needing antibiotics so often? I wish all three of the docs were 100% for it-- we've got the ped and the immuno saying it will REALLY he tem an then the HEM says she doesn'tnow if it will help, but she is willing to give it a try........ obviously she thinks there is a chance it would help them....... but I'm asking myself, is she RIGHT-- what if the other two are wrong an she is right ad it doesn;t help and ph? I guess I'm thinking maybe IVIG is a drastic step to take...and I am nervous about it. I know I am rambling.....I guess it is one of those days where reality slaps you in the face..REALLY Hard. Pattie , of course she can have a virus that doesn't become an infection! Trust your Mommy instincts -- if she isn't sick -- don't make her sick by taking her to the doctor. If you need reassurance, call the doctor and get his/her opinion. Each child and each disease is different. My daughter generally handles colds -- she just gets 100's and 100's of them back to back. And each one lasts 3 or 4 weeks. Only occasionally does one turn into an infection and that's usually dependent on her fatigue level and overall stamina. Her doctor wants her on antibiotics year round but she wants to stay free from that for as long as she can based on the fact that she can usually keep these " colds " from becoming infections, so antibiotics would really do nothing since they don't stop viruses. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 from Dale, Mom to Katy, age 18, CVID I'll try to reply to each question by going back and forth from your letter. I've never tried that, so let's see what happens! > Do you feel the IVIG has helped cut down the number of viruses Katy has gotten? Or does it just keep them from turning into secondary bacterial infections? Definitely it has cut down on secondary infections. But because it cuts down on secondary infections, her body has become healthier all over which helps her fight off colds and stuff (viral). Before IVIG, a cold would last 2 or 3 months. Now, it pretty much lasts 2 weeks to 1 month. They also don't seem to totally ground her anymore. Because she's physically stronger, she is better able to withstand their attack. When she began IVIG she was so run down she had trouble walking from the living room to her bedroom. Walking from our car to inside the church would totally wipe her and she would sleep through most of the service. 2 years after starting IVIG she was taking cardio kickboxing at college. She's just physically a different person after beginning IVIG. She's not as fragile. > Also-- does anyone have any good web sites for the dose info? I'm sorry I don't remember the formula but it is based on weight. Also-- this first day he boys get it, how long will it take? Plan on a full day. Pack some snacks just in case! Also, pack lots of activities but also call the infusion center and just ask what is available to entertain the boys and what the plan is for food! Our first infusion took us through lunch, but the nurses wouldn't let Katy leave to go to the cafeteria and Katy didn't want me to leave -- so we did without! Do I assume that the nurses, etc KNOW to run it slow? NO!!!! Talk with the doctor in charge and ask him what he is ordering. Even in an infusion center, they may not know how to infuse gamma. And they may or may not take input from you -- so go prepared with doctor's orders! I don't remember the exact protocol -- but it's something like starting at 15 ml/hour and increasing every 15 minutes if they are showing no signs of intolerance -- headache, blood pressure changes, chills, fevers, etc. Our first experience at the Stanford Day Hospital was terrifying -- they started her out at 100 ml/hour and I just assumed they knew what they were doing! It's a wonder they didn't kill her. That's when I met on line and got her input! YEAH! If your doctor has ANY questions about timing or rate or dosage, he/she can contact the Consulting Immunologist number and get all the information he/she needs. That number is 1-877-666-0866 and it's free for physicians to use. Do I ask for them t o be premedicated? or they just do that automatically? > Different doctors have different philosophies. Our immunologist wanted to try it once without pre-medicating so he would know her tolerance level -- in other words -- if she doesn't need premedication, why do it? Her pediatrician disagreed and insisted on pre-medication with Benadryl. Turns out she reacted to Benadryl and it really complicated everything! Live and learn! > Will IVIG help keep my boys from needing antibiotics so often? Yes, if they are using antibiotics properly only against bacteria. Some doctors prescribe antibiotics improperly to try to kill viruses. IVIG is not the magic cure for all infections because normal people still get bacterial infections. So, it doesn't mean they will NEVER get an infection. But, it should certainly cut down on them because they will now have the ammunition to fight off the germs. I guess I'm thinking maybe IVIG is a drastic step to take...and I am nervous about it. > I was scared stiff! But I knew we had to give it a try because the way we were going was not really giving her a chance at life. She was missing out on so much stuff and becoming an invalid was not acceptable to us. The difference before and after was dramatic for us. But it took a while. I really encourage you to sit down today and write out all the symptoms that you see in the boys and the frequency as it currently is happening. In other words, sinusitis 3 trips to ER in last month. Ear infections, last one took 40 days to clear, diarrhea attacks -- twice a day every day. etc. Then, hide that list. What will happen is that as the boys get better -- you won't be able to remember how bad it was when you started because the change will be gradual. After 3 months get out your list and see if there are any changes and make the same kind of notes. At 6 months do the same, and then at 1 year. If they really need IVIG, you'll have documentation to show all your doctors! > I know I am rambling.....I guess it is one of those days where reality slaps you in the face..REALLY Hard. > Yep, I know. That first step is a doozey. And don't expect it to be easy to see your kids hooked up to IV poles. But, if it means they won't need oxygen tanks by the time they are 30, or IV antibiotic poles on a regular basis -- it's worth it! I can't tell you how many families come on this list, get the correct diagnosis, and if necessary get started on IVIG, and then get back into a " new " normal, and drop off the list. We really should keep a list to encourage those of you who are just beginning. Hang in there Pattie, after you live through the first one, you'll quit hyperventilating and it becomes just another boring routine like passing out pills every night before bed. You'll do just fine! I had so much erroneous information when I went in for that first one. I fully expected her to go into anaphylactic shock, then a permanent coma or something. We all talk about side effects, and they may happen. But most of them are manageable with minor adjustments. It may take a while to tweak out just the exact amounts and timing and even product, but with work, you'll get the help the boys need to give them optimum health. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 and ph are ALWAYS tired-- more so than ph. Of course ph's IgG numbers are -- not sure there is a correlation to that..... Thanks for the info Dale Pattie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Pattie, IVIg is not a cure. What we have found is that Lucas is sick much less often. And now after 21/2 years his colds that he does get to do go into significant coughs and asthma problems. His fatigue level is better for the 1st two weeks and then he starts to go down the third. This seems to be across the board. Go back to my post on a normal day and reread it. I think you will find after the lines are in that it can go pretty smoothly. I would talk to your immuno prior to your infusion. The nurses do what the doctors order not vice versa. So premedication area wide range. We use Zyrtec as well as motrin but other use other things. Lucas has a hangover after Benadryl and is very grumpy. It will take about 6 months for the boys to get use to the IVIg. Lucas has the usual side effects of head aches, body aches etc. So we thought until our Immuno said that is all does related lets start at 7cc and increase by 4cc every 5 minutes until we are up to a rate that he does not have side effects. We also let him drink a caffeinated soda the morning of the infusion. It also seems to help with the HA. Lucas does not drink caffein at other times. As far as dosages. There is also a wide range. I would check with the IDF materials. We also heard at the IDF retreat that there trough should be 350-500 over there normal Igg level. For Lucas that is about 750-800 . So it is going to take some time to figure it all out for the guys. Lucas has his infusion today. I need to get going to help him be " KING of the day " BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Thanks Barbie-- ad ph are already on allergy meds-- DALLERY JR for ph-- and I just remembered why he can't take Benadryl with it... it is an antihistamine..so we'd have to skip his pill to give him the Benadryl..he gets DALLERGY 2 X a day every day...and is on Clarinex every day. I wonder if these will help them during infusion? The immuno is not the one ordering the IVIG-- for some reason, the immuno ad the ped want the HEM to do it, so we can do it at the hospital clinic.... we do see the immuno on Monday, though..... It gets confusing when there are so many docs in the mix, huh? Pattie Quote Link to comment Share on other sites More sharing options...
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