Kevie has his ivig today, questions

Dawn, I feel bad for both of you. I am a hard stick, too and can relate how difficult this must be, especially for a 10 year old. When I was getting IVIG in Denver, soaking my hand in a tub with very warm water always helped. At the hospital here they did not have any tubs and always struggled with finding a vein. When I had to have an operation earlier this year they couldn’t even put a mid-line in and left it for the anesthesiologist to put an IV in my neck. Now since I’m getting this new treatment of Rituxan once a week for four weeks, they put in a PICC line. PICC stands for peripherally inserted central line. It is a 45 cm long catheter in my upper arm. It was quite a procedure to get it in and I don’t know if this is something for everyone. It has to be flushed every four weeks. Another option would be a port. But there’s always the danger of infection.

As far as recommending how often Kevin should get the infusions, I really don’t want to give any advice. Just use common sense.

Dawn, Try to stay calm, its important for you to stay calm so it will make Kevie feel calm. I understand what you both are feeling, been on both sides of that coin. You can do this Dawn. Please feel free to call me if you want to talk-anytime!
I have bad veins also, I always get a picc line inserted when I have alot of ivs to get or for any length of time. Piccs are placed in the arm, like Norb mentioned. It is sometimes placed while under a local and can also be placed without it. I have had it both ways. With a local, I was very relaxed, was aware of what was happening and was told every step as the dr was doing it under the machine(kinda like an xray machine-flor scope or something). The last few times I had it done bedside, with no problems. Did they use the topical lidocaine type prep on Kevie before they poked him? That can be very frustrating and painful for him if they don’t treat him like he is a child. I know when I’m poked more than once I get to thinking they don’t know how to do something correctly. And it makes it even worse if they continue to do it wrong after I showed them the way my veins lay, and they ignore what I tell them.
Dawn You are Kevies voice, speak up and make them treat Kevie like the child he is. Kids need to be handled with kid gloves as often as possible with this stuff.
Big Hugs to Both of You!!

Dawn I understand the frustration for you and your son. We had the same problem with IV lines with my son, he does not have this same disease it was other very rare problems, we had a port put in and it was a lifesaver and it was in for about 6 years. We never had a problem with infection and I was able to to antibiotics at home myself for him. It is tough to watch your child go through the pain and treatments and procedures. My son has had over 50 surgeries and that port saved him alot of pain. The port when not in use is under the skin and it is just a little bump. Yes it does need to be flushed monthly but that was worth it compared to the pain they put him through with the constant sticks for IV’s. My prayes and thoughts are with you and yes it is a terrible thing for a child to have t go through but you will get through even when it doesn’t seem like it. If you ever want to talk just send me your number or email me whatever I do understand what you are feeling and somewhat of what your son is feeling because there are days I just want to die the pain is so bad. Again my thoughts and prayers are with you.
sincerely
Jody

Hello, I just wanted to make a comment on the frequency of the IV IgG. It may be the case that Kevie does not show symptoms until four months after IV IgG, but symptoms are the tip of the iceberg. I would guess that the goal is to suppress production of his own (auto-) antibodies and this is done best with monthly IV IgG. This would be with the goal to minimize present and future damage. Doing IV IgG every four months may work to control symptoms, but you also want to control the underlying process as well as possible in order to minimize long term damage that accumulates when it is not controlled. I fully understand that in this illness the “exact” best schedule and timing of administration of IV IgG are controversial and very, very likely are dependent on the disease status in each individual patient. I have worked with children with other autoimmune processes and immune mediated processes (many easier to detect than GBS/CIDP) and the best treatment is suppression of the immune response and gradual spacing of the therapy that works so that the process does not “flair” with this spacing.

It may help Kevie to deal with the impact that this will have on his life if he is able to understand that it is directed toward making the submerged part of the iceberg be safer.

With hope for cure of these illlnesses.

What a quandry…..seems as if whatever you do you have drawbacks or the like.

Have you [I am sure you have and I’ve not kept up-sorry] talked all the pros and cons about long-waits long infusions, vs short-waits shorter more frequent infusions with your doctor/s? There seem to be ‘trade-offs’ all around.

I for one, very often feel guilty about my seeming ‘blood sucking’ [hey it’s Halloween and also appropriate!] tendencies. I get a huge dose monthly [every 4 weeks] and really count every day between infusions! The benefits of infusion far offset the potential side effects – usually.

I wish I could be of more help! Honestly, all that you and Kevie have gone thru and are going through keep me inspired, especially the keeping on with the going on. That IF you can deal with this, well I have to…and it should be easy by comparison. It all has kept me from becoming a wimpy mush ball. And from having self-pity-parties. For that I thank you from the bottom of my heart. Though I wish you did not have to have the experiences.

I wish I had the know-how or resources to help you more.