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Hi everyone- thanks for your well wishes! We came home from pex at Georgetown today and all is well. It was a long week, and I plan on posting a really detailed description of the whole process asap. We had our share of glitches- but no complications. It was a difficult week for our daughter, but I think she will get over it quickly. Hoping that we can continue the healing process, trying to figure out when to let her go back to school.

 

I will post details in a day or so...

 

Eileen

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Here is a brief description I have written about our experience this past week with plasma pheresis. All in all, it is a tough week for the kiddos (if they have a fear of needles and doctors), but the procedure itself seems simple and safe. We ran into a few glitches, which made it a little bit more difficult than it usually might be. If anyone has questions, please feel free to contact me.

 

The first step in plasma pheresis is to have the central line inserted. We were taken to the sedation team. Two nurses placed an IV in Julia's hand. Of course, the first IV they put in didn't work, so they tried again in the other hand. I don't have to tell you how Julia felt about this, but she was really brave. After this we met the doctors that would do the sedation and catheter insertion. We stayed with Julia while she went to sleep, and then went to wait for about 40 minutes while they inserted the line. The doctor came to get us immediately; Julia was still sleeping when we arrived. She woke up slowly, and starving. She was very nervous about the IV and the catheter in her leg, but she really was strong. She ate, and played, and we were moved to our private room in the ICU.

 

We spent a lot of the rest of the day waiting. After we got to the private room, they drew blood from her IV to see if she could have pheresis that day. It was a go. While we waited, we visited the playroom where Julia did some painting. She enjoyed that, and enjoyed the attention of the child life specialist. Finally the pheresis nurse came to her room around three. This is when the real glitch started. The nurse checked the catheter, and did not have satisfactory flow rate through it. She, and the ICU nurses spent the next two hours trying to flush the line, and reposition Julia to make it work. This was agonizing for Julia, as it hurt every time someone touched the catheter. She was in a great deal of stress (as were we). Finally the attending physician came in to let us know they would put some anti clot medication in the catheter and let it wait overnight. He told us this was common, and unfortunately the difficulty of putting a large catheter (although it is the smallest one they have) in a small child's vein. We were frazzled and disappointed, but comfortable with waiting until the next day.

 

The next morning the pheresis nurse arrived at about 12 pm. We liked this one much more than the one the day before. She had the same problem with flow in the line. This was the start of a really long day of stress and pain for Julia. The nurses spent hours, on and off, trying to reposition Julia, flush the line, and wait. Nothing worked. They were ready to put it off another day. We were extremely upset, and really felt we weren't getting the attention of any of the physicians. Everyone seemed to want to pass the buck. HemOnc told us they were not involved with the line placement. The ICU attending and his nurses insisted the line worked and there was nothing they would do about it. (They did lightly sedate Julia to try more repositioning with no success.) The pheresis nurse explained the machine would not function without proper flow. She connected Julia and tried to run the machine twice ( having to re set it with all new lines each time), with no luck. Finally, the doctor who placed the line appeared. She told us she would get it going. In the end, with local anesthetic and light sedation, she had to reposition the line. This involved taking the dressing off, removing the three stitches, repositioning the line (it turned out it had a kink in it), restitching and redressing. Now at least we had flow. Finally Julia received the first pheresis treatment, which was nothing, compared to what she had been through. She tolerated it really well.

 

The next day Julia and I were awaken at 4am so they could draw blood to test her clotting numbers. Julia was so strong, but how much poking can one little girl bear? The numbers were good, so the pex was a go. The nurse arrived in the morning for what we hoped would be a smooth treatment. We should have known better. This day, there was a different problem with the line. There were some clots around the opening of the catheter. In order to keep good flow, the pheresis nurse had to continually flush out the lines, which meant more fooling with the catheter, more stress and discomfort for Julia. Fifteen minutes into the pheresis, Julia started whining, was white as a sheet, and her blood pressure dropped. They had to postpone treatment for 15 minutes, and pump her full of fluids. Luckily, she perked up, and we were able to complete the treatment. It was another long, stressful treatment for Julia. Afterwards, she felt much better, and went to the playroom for some games and crafts.

 

The fourth and final day, Julia was again woken early for a blood test. Her numbers were good, and it was a go. Finally, she had an easy treatment. The blood flow was good, she had already been pumped full of fluids, so it was just hook her up to the machine and watch some movies. If all the treatments had been like this, it would have been a much easier process. The worst part of the whole week, for Julia, was about to come. She was so afraid to have the catheter removed, I don't blame her. She wanted to be sedated. The nurse came in and removed the dressing, the stitches, the catheter, and held pressure on the wound for five minutes and replaced the band aid. Poor Julia screamed the whole time. Of course, there was some bleeding. So the nurse had to remove the dressing again, and held pressure on the wound for 15 more minutes. Finally she put the dressing on, and we stayed at the hospital a few hours for observation.

 

In the end, it was a difficult week for Julia. If it works, and helps keep her clear of pandas it will be worth it, and I would do it again. If things had gone smoother, it would have been much easier. Having the distractions of movies, crafts, a child life specialist, a therapy dog, and gifts was essential. Having the IVIG bear to play doctor with the week before, and while she was in the hospital was really therapeutic. She does have some good memories. Bringing food from home, and living close enough to run home to shower and see my other daughter was convenient. Having both my husband and I there really lightened the load on both of us. Keeping Julia hydrated with IV fluids before pheresis was key, the one day we didn't she had issues.

 

We are prepared for a couple difficult weeks while Julia recovers emotionally, and catches up on sleep, and tries to get back into her routine. We plan to try to be as careful as possible with her: maintain a routine, keep her well rested, fed and hydrated, minimize stress in her day-to-day activities. We plan to keep her out of school if there are illnesses going around, and prevent any insults to her immune system (vaccinations, etc). We plan to treat any relapse immediately and aggressively with antibiotics and steroids. We plan to keep her on daily antibiotics until the spring, at least, and prophylactic antibiotics until she is out of college, at least. Hopefully in the coming years, doctors and scientists will learn more about managing pandas, to make the parent's lives easier.

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My son had plasmapherisis at Georgetown three weeks ago and there was a similar problem with not getting enough flow on the first day after the line in the groin was inserted. They gave him an anti-clot medication and waited overnight. While we were waiting, we were told that if it didn't work, they would have to sedate him again and reposition the line and if that did not work, we might have to consider doing a new line, possibly in the neck. This was the most stressful part of our week. Fortunately the anti-clot medication did work in the morning and everything went smoothly after that. My son also liked the child life specialist (she did a great job of keeping him entertained) and since he is a big animal lover, he was thrilled with the therapy dog.

Overall our experience at Georgetown was positive and we were happy with the attention and care my son received. So far it has been three weeks and we are seeing small improvements that are encouraging, but nothing too obvious yet. My husband and I are hopeful that we will begin to see more obvious changes over the next few months

By the way, I did keep him out of school the following week and was happy with that decision because it turned out that there was a lot of illness going around in his school.

 

Ellen

 

 

 

Here is a brief description I have written about our experience this past week with plasma pheresis. All in all, it is a tough week for the kiddos (if they have a fear of needles and doctors), but the procedure itself seems simple and safe. We ran into a few glitches, which made it a little bit more difficult than it usually might be. If anyone has questions, please feel free to contact me.

 

The first step in plasma pheresis is to have the central line inserted. We were taken to the sedation team. Two nurses placed an IV in Julia's hand. Of course, the first IV they put in didn't work, so they tried again in the other hand. I don't have to tell you how Julia felt about this, but she was really brave. After this we met the doctors that would do the sedation and catheter insertion. We stayed with Julia while she went to sleep, and then went to wait for about 40 minutes while they inserted the line. The doctor came to get us immediately; Julia was still sleeping when we arrived. She woke up slowly, and starving. She was very nervous about the IV and the catheter in her leg, but she really was strong. She ate, and played, and we were moved to our private room in the ICU.

 

We spent a lot of the rest of the day waiting. After we got to the private room, they drew blood from her IV to see if she could have pheresis that day. It was a go. While we waited, we visited the playroom where Julia did some painting. She enjoyed that, and enjoyed the attention of the child life specialist. Finally the pheresis nurse came to her room around three. This is when the real glitch started. The nurse checked the catheter, and did not have satisfactory flow rate through it. She, and the ICU nurses spent the next two hours trying to flush the line, and reposition Julia to make it work. This was agonizing for Julia, as it hurt every time someone touched the catheter. She was in a great deal of stress (as were we). Finally the attending physician came in to let us know they would put some anti clot medication in the catheter and let it wait overnight. He told us this was common, and unfortunately the difficulty of putting a large catheter (although it is the smallest one they have) in a small child's vein. We were frazzled and disappointed, but comfortable with waiting until the next day.

 

The next morning the pheresis nurse arrived at about 12 pm. We liked this one much more than the one the day before. She had the same problem with flow in the line. This was the start of a really long day of stress and pain for Julia. The nurses spent hours, on and off, trying to reposition Julia, flush the line, and wait. Nothing worked. They were ready to put it off another day. We were extremely upset, and really felt we weren't getting the attention of any of the physicians. Everyone seemed to want to pass the buck. HemOnc told us they were not involved with the line placement. The ICU attending and his nurses insisted the line worked and there was nothing they would do about it. (They did lightly sedate Julia to try more repositioning with no success.) The pheresis nurse explained the machine would not function without proper flow. She connected Julia and tried to run the machine twice ( having to re set it with all new lines each time), with no luck. Finally, the doctor who placed the line appeared. She told us she would get it going. In the end, with local anesthetic and light sedation, she had to reposition the line. This involved taking the dressing off, removing the three stitches, repositioning the line (it turned out it had a kink in it), restitching and redressing. Now at least we had flow. Finally Julia received the first pheresis treatment, which was nothing, compared to what she had been through. She tolerated it really well.

 

The next day Julia and I were awaken at 4am so they could draw blood to test her clotting numbers. Julia was so strong, but how much poking can one little girl bear? The numbers were good, so the pex was a go. The nurse arrived in the morning for what we hoped would be a smooth treatment. We should have known better. This day, there was a different problem with the line. There were some clots around the opening of the catheter. In order to keep good flow, the pheresis nurse had to continually flush out the lines, which meant more fooling with the catheter, more stress and discomfort for Julia. Fifteen minutes into the pheresis, Julia started whining, was white as a sheet, and her blood pressure dropped. They had to postpone treatment for 15 minutes, and pump her full of fluids. Luckily, she perked up, and we were able to complete the treatment. It was another long, stressful treatment for Julia. Afterwards, she felt much better, and went to the playroom for some games and crafts.

 

The fourth and final day, Julia was again woken early for a blood test. Her numbers were good, and it was a go. Finally, she had an easy treatment. The blood flow was good, she had already been pumped full of fluids, so it was just hook her up to the machine and watch some movies. If all the treatments had been like this, it would have been a much easier process. The worst part of the whole week, for Julia, was about to come. She was so afraid to have the catheter removed, I don't blame her. She wanted to be sedated. The nurse came in and removed the dressing, the stitches, the catheter, and held pressure on the wound for five minutes and replaced the band aid. Poor Julia screamed the whole time. Of course, there was some bleeding. So the nurse had to remove the dressing again, and held pressure on the wound for 15 more minutes. Finally she put the dressing on, and we stayed at the hospital a few hours for observation.

 

In the end, it was a difficult week for Julia. If it works, and helps keep her clear of pandas it will be worth it, and I would do it again. If things had gone smoother, it would have been much easier. Having the distractions of movies, crafts, a child life specialist, a therapy dog, and gifts was essential. Having the IVIG bear to play doctor with the week before, and while she was in the hospital was really therapeutic. She does have some good memories. Bringing food from home, and living close enough to run home to shower and see my other daughter was convenient. Having both my husband and I there really lightened the load on both of us. Keeping Julia hydrated with IV fluids before pheresis was key, the one day we didn't she had issues.

 

We are prepared for a couple difficult weeks while Julia recovers emotionally, and catches up on sleep, and tries to get back into her routine. We plan to try to be as careful as possible with her: maintain a routine, keep her well rested, fed and hydrated, minimize stress in her day-to-day activities. We plan to keep her out of school if there are illnesses going around, and prevent any insults to her immune system (vaccinations, etc). We plan to treat any relapse immediately and aggressively with antibiotics and steroids. We plan to keep her on daily antibiotics until the spring, at least, and prophylactic antibiotics until she is out of college, at least. Hopefully in the coming years, doctors and scientists will learn more about managing pandas, to make the parent's lives easier.

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I'm so happy that everything worked out....I've been thinkiing of you guys all week...thanks for taking the time to let us know how things are going...I haven't had a lot of time to be on the forum this weekend (or probably the next few days) so I couldn't respond sooner..I'm just so relieved that it is all okay! :)

 

~Karen

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Just a quick update: Julia was very on edge the day after she came home from the hospital. Since then she has been great. A few small things (which are huge, you guys will understand): she is now wiping herself after going potty for the first time since last February (its almost like she just forgot, it wasn't even a discussion), she is drinking milk and eating yogurt (some of her favorite foods, that she hasn't eaten since last February), and now she has been sitting and reading to my mom for an hour (she is still a beginning reader- this is unheard of- never happened before- usually somewhat to very resistant to reading). So although it seems small, it is HUGE!

 

Now on to me, I am in an all out panic because of a few kids who have had pex recently relapsed. Help! It is too much to bear to see how they can be, only to think it will be taken away.

 

I am trying to figure out how high I can go with antibiotics, and how long we can bear to keep her out of school. (she loves school, and wants to go back)

 

Thank you for all the well wishes!!

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