Central Tunneled Line Questions

[looneymom]

Tyler is going to be having this done in August. So this mom is feeling really nervous right now but glad that insurance has approved the next step of treatment (Plasma Exchange). The more I read about Rheumatic fever and Sydenhams Chorea symptoms, I am feeling better about our next treatment plan. Whatever caused these antineuroal antibodies to found their way into Tyler's body, they have got to come out. I feel for so many of you because like me, you just want this POTS issue to go away. Even with this treatment, Tyler's POTS may not go away because we may have more than one medical condition. Our cardiologist does seem to think that Tyler has had Rhuematic fever but it is unsual for the tremors to still be going on. This symptom itself may be a sign of damaged nerves that may not reverse itself. However, time will tell with this next plan of treatment.

If you have a central Tunneled line, how long does this line last before it has to be replaced? How long did it take you to feel comfortable about caring for your line? I'm nervous about this part and thinking about asking our doctor to send out a home health care nurse.

[Raisin]

I can't help with this question but I just wanted to tell you I am feeling so happy that you are able to try this with Tyler. From everything that I have read, this does sound like this will be such a positive step for him in his treatment. I'm sure it will cause some initial anxiety but you will get through it. I think it is an excellent idea to have a home health nurse in the beginning. I know i learn much easier by watching someone else do something along side of me. Visual learner here.

[E Soskis]

I had a central tunneled catheter for about 3 years - I went weekly to a home health agency for flush and dressing change. Once a month I had to have heparin instilled and as time went by, before each plasma exchange, the plasma team would instill some Activase to be sure the catheter was fully open and functional. These tunneled catheters are not meant to last for long periods of time - they are supposed to be temporary until a more permanent graft or fistula can be established surgically in the arm or elsewhere. I think mine lasted an exceptionally long time before I became sick with sepsis and blood infection. Once a systemic blood infection occurs, the catheter must be removed. It is extremely important to recognize the symptoms of a blood infection and get medical attention right away - even if it is in the middle of the night. I knew I was infected because I felt different all over - sudden onset extreme weakness and fever. I could barely drag myself to bed. I told my family I had a sepsis and needed help right away and my son took me to the ER. After several months of battling sepsis that kept re-curing, I ended up with a "necklace graft" - I've had it for over a year now and have had no problems. Plasma exchanges have kept me up, working, and functional. I would hate to think what would happen if they quit working - good luck and take scrupulous care with the central line.

[looneymom]

Our cardiologist did mention that this was tempory and was hoping my son would not have to have a permant one. I will look up the "necklace graft". I'm glad to hear the plasma exchange has allowed you to be functional and able to work. Our cardiologist believes the plasma exchange will allow my son to be more functional but is not certain how long he will need the treatments. The type of antineuroal antibodies that have been found in my son have also been found in patients with autoimmune movement disorders and rheumatic fever with Sydehams Chorea.

[valiz]

Rachel, praying for you and Tyler, that this new line of treatment will bring about improvement in Tyler's condition. Keep us posted. A home health care nurse would be very helpful until you are comfortable taking over the care of his central line. liz

[looneymom]

Tyler will be having this procedure done August 11th and will start plasma exchange treatments a couple days later. He will have 3 treatments in the hospital while there. If he does ok with plasma exchange, he will be doing the next 8 treatments at an outpatient facility.

The antineural autoimmune antibodies have caused his POTS to be worse. If not caused his POTS totally.. This is the one piece of my son's illness that I am not sure about. His doctor and I really do not know which problem truely happened first. But what counts is that he gets some treatment that should help him get better. BTW my son has tried haloperidol but he is allergic to it. This medication and 2 others are used to help control the Sydenham's Chorea. They are neuropsych medications and I am hoping we can avoid using them.

In one of the studies Tyler was in, the heart antibodies were found. I was not given the name of them but was told they were present. These antibodies are caused by a strep infection and are found in Rhumatic fever and Sydenham's Chorea. According to research, Sydenham's Chorea can be caused by an autoimmune component and IVIG and Plasma Exchange are being used to help the kids get over this part. Heart problems that are associated with Rhuematic fever can happen 5-30 years later. Tyler will be having echocardiograms every year to check on his heart.

Here is some new research on Sydenham's Chorea that was released in June. Many of the references at the end of this article can be found online. I never realized the damge that strep can do if it does not get cleared up. There is testing to check for antibodies that would also indicated a strep infection has happened within the past year. Tyler would never test positive for strep on rapid test when he was younger. Sometimes our doctor would treat or just send us on our way saying it was a virus. My best advice to anyone is if you have a fever (even low grade) and sore throat get a strep culture done. Strep is nothing to play around with.

http://www.bioline.org.br/request?pe14052

http://www.unboundmedicine.com/medline/citation/15968928/Treatment_of_Sydenham's_chorea_with_intravenous_immunoglobulin_plasma_exchange_or_prednisone_

[looneymom]

Just wanted to give an update. The cardiologist called last night and Tyler is set to have the procedure done this coming Monday. Our doctor will be starting plasmapherises a few days later. I have been reading about this procedure and Plama exchange but I am still a little confused about the differences between them. Can anyone explain the difference?

The good thing is that our doctor will not be giving Tyler any blood products from other doners. He is plannng on taking out the Tyler's plasma and putting back in his blood. The goal is for Tyler's body to make good clean antibodies itself so it will bring up his immune system to functioning better and fighting off strep, mycoplasma, and other viruses. When Tyler is able to tolerate the treatments in the hospital, he will be released. The rest of his treatments can be done outpatient. The bad deal is a three hour drive to the treatment center.

[corina]

Sending good thoughts for Tyler's procedure. You and your family are super troopers never giving in!

[arizona girl]

Well I wish tyler luck with his procedure. Honestly that is the worst part of it. Plasmapheresis in the newer language for plasma exchange. They used use blood donors to replace the volume of proteins sifted out of the blood and now they use albumin to replace the blood instead of donor blood. It is safer that way. I had no problems with the treatments themselves. Just make sure they put all the cleaned blood back in and that they keep an eye out for infections and anemia and you should do well.