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Home from PEX at Georgetown


dcmom

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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!!

That is HUGE news! I am so happy for you all. I consider all of those very big accomplishments. I wish you continued successes!

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Just a quick question while you're on the subject ..... Re, pex, ivig, ... and the ones who are seemingly having setbacks after completion, can you confirm if your child is one that gets sick alot with any illness, colds, virus, whatever on a regular basis? in other words, are these the kids that get sick and catch stuff at the drop of a hat?

 

OR..... is your child one that almost never gets sick, maybe once or twice a year, and recovers quickly. maybe this category of kids are ones that do not show the typical symptoms of strep. I will say my son fits this category, hardly gets sick and does not show syptoms of strep (don't even know if he really ever had it but once, where he DID show exacerbation... subsequent illness was a vrus once or twice a year). (we are not up to any PANDAS treatment yet, still in the investigating stage).

 

This question is for those who have already had PEX or IVIG...so I guess I'm trying to see if those that do well post are the ones who don't have too much problems with alot of illnesses, and if the ones who seem to relapse do so because they catch illness alot.

 

Thanks

Faith

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I do thinkit is a good idea to see an immunologist now that she is better and just see if there is any way they can figure out WHY this whole thing happened. Even if all the tests are Negative you are looped into an immunologist that can help if you ever need them. I think it is really important for us all to have a support system of doctore inplace in our own town. Hopefully, coming in with a copy of your discharge summary from Georgetown as well as yourchild who is now cured will get their attention.

My son is responding really well to the steroids so don't live in panic. If the PEX works, any major bumps can probably be controlled with steroids. I am on a quest though to figure out why. My partner's medical school roomate is an immunologist at UCLA and I am going to e-mail our info and get his two cents. I am currently working with a very good immunologist here, but is she can't figure it out there is someone at UNC we will go see.

I think the more I get the "why" question answered the safer, and more in control, I will feel. I have a feeling that the PANDAS may be a symptom of larger problem with the immune system. I am trying to gather info in a state of calm so if we need something in the future we are ready.

I also am going to see a pediatric infectious disease doctor on Monday. I really thin her input will be valuable. I will comntinue to post with any progress i make.

I do know your fear though. It is as if seeing that your child has returned and was in there the whole time makes you only more fearful of what you may lose. I think we all learn to accept some of the things that go along with PANDAS just to survive but when they are gone and you realize how perfect your child is, you get very afraid to go back.

We have just finished the 5 day burst and started the next 5 days of a lower dose, and then a four day taper. It took about three days but I can definitely see it is working now. My son went on a field trip to a dance studio with his class yesterday (the ultimate lithmus test) and he controlled himself. In our history, PANDAS and a fieldtrip, were the perfect storm. I am strarting to relax but am even more fueled now to get to the bottom of this.

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My dd has always been healthy, like her non pandas sister. Maybe one typical illness per year, recovering normally. She did have strep before, and had the typical symptoms. (I do not think it is how a child shows symptoms of strep- more what strain of strep triggers pandas) No known allergies or immune deficiencies.

 

Mommd- thank you! Please keep us updated! Tested everything except pneumococcal titers. All other numbers excellent. Sigh. Need to find an immunologist in DC or NY/NJ...

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dc mom:

 

I think it will take some time for you to start feeling comfortable. I know that I am just now able to reenter life and we are about 7 weeks post our first IVIG. It is almost as if you body as been in a flight or fight response for so long and now you have to heal yourself as well.

 

mom md:

 

I am right there with you in terms of obsessing over the WHY with PANDAS. I think that we have some great doctors in Dr. Latimer and Dr. K who have been amazing in treating so many kids who could find no treatment elsewhere. Now, I feel that we really need some doctors who have more time to figure out the WHY part of this disease. This is how we can prevent relapses in our children as well as help other children in the future. I think the antibiotics are good in preventing future strep infections, but they do not prevent viral infections which are often a trigger.

 

Elizabeth

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Mom Md... Could you please give your son's weight and steroid burst dosage over 14 days..... just in case we should have a problem, I'd like to go to the Dr. and tell them what he needs.

 

-Wendy

 

 

I do thinkit is a good idea to see an immunologist now that she is better and just see if there is any way they can figure out WHY this whole thing happened. Even if all the tests are Negative you are looped into an immunologist that can help if you ever need them. I think it is really important for us all to have a support system of doctore inplace in our own town. Hopefully, coming in with a copy of your discharge summary from Georgetown as well as yourchild who is now cured will get their attention.

My son is responding really well to the steroids so don't live in panic. If the PEX works, any major bumps can probably be controlled with steroids. I am on a quest though to figure out why. My partner's medical school roomate is an immunologist at UCLA and I am going to e-mail our info and get his two cents. I am currently working with a very good immunologist here, but is she can't figure it out there is someone at UNC we will go see.

I think the more I get the "why" question answered the safer, and more in control, I will feel. I have a feeling that the PANDAS may be a symptom of larger problem with the immune system. I am trying to gather info in a state of calm so if we need something in the future we are ready.

I also am going to see a pediatric infectious disease doctor on Monday. I really thin her input will be valuable. I will comntinue to post with any progress i make.

I do know your fear though. It is as if seeing that your child has returned and was in there the whole time makes you only more fearful of what you may lose. I think we all learn to accept some of the things that go along with PANDAS just to survive but when they are gone and you realize how perfect your child is, you get very afraid to go back.

We have just finished the 5 day burst and started the next 5 days of a lower dose, and then a four day taper. It took about three days but I can definitely see it is working now. My son went on a field trip to a dance studio with his class yesterday (the ultimate lithmus test) and he controlled himself. In our history, PANDAS and a fieldtrip, were the perfect storm. I am strarting to relax but am even more fueled now to get to the bottom of this.

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He is 63 ligs. He has img/kg x 5 days, the o.5 mg/kg x 5 days, the a taper for 4 days but I don't know the dose. Dr. latimer's suggestion was 2mg/kg x 5 days, then 1mg/kg x 5 days then taper.

Diana said only 1mg/kg x 5 days only. My guess is it can be done several different ways.

Mom Md... Could you please give your son's weight and steroid burst dosage over 14 days..... just in case we should have a problem, I'd like to go to the Dr. and tell them what he needs.

 

-Wendy

 

 

I do thinkit is a good idea to see an immunologist now that she is better and just see if there is any way they can figure out WHY this whole thing happened. Even if all the tests are Negative you are looped into an immunologist that can help if you ever need them. I think it is really important for us all to have a support system of doctore inplace in our own town. Hopefully, coming in with a copy of your discharge summary from Georgetown as well as yourchild who is now cured will get their attention.

My son is responding really well to the steroids so don't live in panic. If the PEX works, any major bumps can probably be controlled with steroids. I am on a quest though to figure out why. My partner's medical school roomate is an immunologist at UCLA and I am going to e-mail our info and get his two cents. I am currently working with a very good immunologist here, but is she can't figure it out there is someone at UNC we will go see.

I think the more I get the "why" question answered the safer, and more in control, I will feel. I have a feeling that the PANDAS may be a symptom of larger problem with the immune system. I am trying to gather info in a state of calm so if we need something in the future we are ready.

I also am going to see a pediatric infectious disease doctor on Monday. I really thin her input will be valuable. I will comntinue to post with any progress i make.

I do know your fear though. It is as if seeing that your child has returned and was in there the whole time makes you only more fearful of what you may lose. I think we all learn to accept some of the things that go along with PANDAS just to survive but when they are gone and you realize how perfect your child is, you get very afraid to go back.

We have just finished the 5 day burst and started the next 5 days of a lower dose, and then a four day taper. It took about three days but I can definitely see it is working now. My son went on a field trip to a dance studio with his class yesterday (the ultimate lithmus test) and he controlled himself. In our history, PANDAS and a fieldtrip, were the perfect storm. I am strarting to relax but am even more fueled now to get to the bottom of this.

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My son is 13 and in the last few weeks since he is back from PEX, he has been generally more upbeat and cheerful, and he responds more quickly to questions and directions. He is still struggling very much with homework, especially reading, and I am hoping that this is an area where we will see some positive changes in the next couple of months. I will post a thread some time soon with more specifics. The changes are not obvious but they are encouraging.

 

Ellen

 

Ellen, what kind of small improvements have you been seeing? How old is your child?
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  • 2 weeks later...

Just a quick update. My daughter Julia is two weeks post-plasma pheresis. I have to say she is doing really well. The first day or two home from the hospital, she was on edge. Since then, she has been doing really great! I have noticed major improvements in: ocd issues, mood issues, sleeping issues, academic issues, eating issues and sensory issues. She has always been slightly quirky :) - but I would have to say, she is closer to 100% than any time since pandas started. And, I have to say, the few issues that are left I am thinking are more of a learned behavoir or habit from pandas, rather than pandas itself.

 

She is doing so well, on the other hand, I am a basket case. I really feel that the pex did it's job and removed the auto antibodies- but I am living in constant fear (especially with the news of so many kids relapsing) that anything can trigger another episode. It is so heartbreaking to see her zest for life, and to think that could be taken away again at any time :) Right now she is on 200mg zithromax per day. I hope I will be able to keep her there, with the opportunity to immediately up the dose if I see any uptick in symptoms. I see Dr L next week (will anyone be there on Tuesday?) to discuss post care. If it were totally up to me, I would probably pursue IVIG as another boost right now- but I don't think dh is on board with that.

 

In retrospect, the pex was really no big deal. I mean it was stressful- but no more so than a week in a pandas exacerbation. If the pex had to be done every few years, to keep them well, it would be so worth it. (although my insurance just denied payment after pre approval...)

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Good news on your daughter!!!!! Bad news on your Insurance... hopefully, you'll get it worked out without any additional expense.

 

I plan to talk to Dr. K extensively about antibiotics when we see him next on the 17th. I'll update you once I know more our long term plan.

 

-Wendy

 

Just a quick update. My daughter Julia is two weeks post-plasma pheresis. I have to say she is doing really well. The first day or two home from the hospital, she was on edge. Since then, she has been doing really great! I have noticed major improvements in: ocd issues, mood issues, sleeping issues, academic issues, eating issues and sensory issues. She has always been slightly quirky :) - but I would have to say, she is closer to 100% than any time since pandas started. And, I have to say, the few issues that are left I am thinking are more of a learned behavoir or habit from pandas, rather than pandas itself.

 

She is doing so well, on the other hand, I am a basket case. I really feel that the pex did it's job and removed the auto antibodies- but I am living in constant fear (especially with the news of so many kids relapsing) that anything can trigger another episode. It is so heartbreaking to see her zest for life, and to think that could be taken away again at any time :) Right now she is on 200mg zithromax per day. I hope I will be able to keep her there, with the opportunity to immediately up the dose if I see any uptick in symptoms. I see Dr L next week (will anyone be there on Tuesday?) to discuss post care. If it were totally up to me, I would probably pursue IVIG as another boost right now- but I don't think dh is on board with that.

 

In retrospect, the pex was really no big deal. I mean it was stressful- but no more so than a week in a pandas exacerbation. If the pex had to be done every few years, to keep them well, it would be so worth it. (although my insurance just denied payment after pre approval...)

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Eileen-

I am so glad your daughter is doing so well and I know the rollar coaster of emotions. Seeing your child at their best makes you realize even more how far off from that they were, and also so fearful it will be taken away. The fact though that she responded so well just confirms that it is an autoimmune encephalitis. When Carter had his relapse 4 months after PEX. after 2-3 days of steroids he was back to mormal. He finished the steroids last week. We had our teacher conferance Wed and she said despite the 2 days when he relapsed she would never know he had any issues. This is amazing because school was were he had the bulk of his issues. I got an e-mail from his PE teacher yesterday telling me he can't believe how focused Carter is in class! Never though I would ever get that e-mail.

Now that we are better though to keep me calm I am trying to educate the doctors around me at home and get a plan in place. Even if all we do is do steroids quickly in relapse I will sleep better knowing if we can get them quickly. We are continuing azithromycin for the next 6 months due to the immune modulating effects and then will probably switch to the rheumatic fever protocol. We are meeting with the immunologist Nov 16th to come up with a long-range plan. We are also going to start allergy shots soon to help boost his immune system.

I agree though with what you said, if you had to do PEX even again, it would not be that bad. I am so sorry you are having issues with insurance. I would definitely fight it if you got pre-approval.

Good luck and keep us posted.Claire

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