back from PEX at Georgetown

[bronxmom2]

Hi, we are the latest crew back from PEX at Georgetown.

It went pretty smooth... in late Tuesday morning, out Thursday afternoon, we did the pherisis each day, tolerated it fine.

As others have reported, pulling out the catheter at the end of it was by far the worst part. My son howled like his leg was being amputated but insisted on watching the whole thing. Horrible. The doctor told him beforehand that it wouldn't hurt, which really made it worse.

Other than that I have nothing but glowing reports for the people at Georgetown. It was like being in a strange alternate universe where everyone believes in PANDAS and believes in aggressively seeking a physical cure. Everyone-- doctors, ward nurses, PEX nurses-- had a general grasp of PANDAS, was genuinely interested (to the point of seeking out research, etc.), and seemed proud that Georgetown was offering this treatment, deeply respectful of Dr. Latimer, and curious about the outcome of the PEX.

 

The worst part was being in the ICU! It was so painful for me to see the sick kids... after a while I just couldn't bring myself to leave our room.

 

I am hoping that as they do more of this, they'll be comfortable doing it in the regular peds ward.

 

Anyway the people were super nice (everyone in Georgetown and DC seemed strangely nice to me, actually) and my so was happy because he was doted on.

 

My only other hospital experience was giving birth in a NYC hospital, so I guess my expectations were low.

 

Anyway I left feeling very grateful to everyone at Georgetown.

 

At this point I am seeing only minor changes in his behavior. It's so hard not to hope for a magical transformation, or on the other hand freak out inwardly at every obsessional/defiant comment... I'm trying to take a step back a bit, and have some confidence in him, give him some time for his brain to heal, though at the same time I htink lots of our kids' behaviors have become learned/ingrained over the years, so I have a somewhat contradictory impulse to draw the line and refuse to accept the behaviors that my gut tells me he can control.

 

I don't want to speak for mommd, but I suspect much of the rapid and sudden improvement she saw in her son was from the IV steroids. (My son did not get IV steroids because he had no allergic reaction to the plasma stuff.)

 

I will say that he seems to look better somehow now. I mean his color and his eyes. For several years he just hasn't looked quite right to me.

[momtotaylor]

Hi, we are the latest crew back from PEX at Georgetown.

It went pretty smooth... in late Tuesday morning, out Thursday afternoon, we did the pherisis each day, tolerated it fine.

As others have reported, pulling out the catheter at the end of it was by far the worst part. My son howled like his leg was being amputated but insisted on watching the whole thing. Horrible. The doctor told him beforehand that it wouldn't hurt, which really made it worse.

Other than that I have nothing but glowing reports for the people at Georgetown. It was like being in a strange alternate universe where everyone believes in PANDAS and believes in aggressively seeking a physical cure. Everyone-- doctors, ward nurses, PEX nurses-- had a general grasp of PANDAS, was genuinely interested (to the point of seeking out research, etc.), and seemed proud that Georgetown was offering this treatment, deeply respectful of Dr. Latimer, and curious about the outcome of the PEX.

 

The worst part was being in the ICU! It was so painful for me to see the sick kids... after a while I just couldn't bring myself to leave our room.

 

I am hoping that as they do more of this, they'll be comfortable doing it in the regular peds ward.

 

Anyway the people were super nice (everyone in Georgetown and DC seemed strangely nice to me, actually) and my so was happy because he was doted on.

 

My only other hospital experience was giving birth in a NYC hospital, so I guess my expectations were low.

 

Anyway I left feeling very grateful to everyone at Georgetown.

 

At this point I am seeing only minor changes in his behavior. It's so hard not to hope for a magical transformation, or on the other hand freak out inwardly at every obsessional/defiant comment... I'm trying to take a step back a bit, and have some confidence in him, give him some time for his brain to heal, though at the same time I htink lots of our kids' behaviors have become learned/ingrained over the years, so I have a somewhat contradictory impulse to draw the line and refuse to accept the behaviors that my gut tells me he can control.

 

I don't want to speak for mommd, but I suspect much of the rapid and sudden improvement she saw in her son was from the IV steroids. (My son did not get IV steroids because he had no allergic reaction to the plasma stuff.)

 

I will say that he seems to look better somehow now. I mean his color and his eyes. For several years he just hasn't looked quite right to me.

 

Glad to hear you are back and that your son is doing well. You must feel so relieved that that part is over. I have anxiety even thinking about it at this point. Congratulations and good luck. Please keep us posted!

[Alex]

Hi bronxmom2.

 

Glad things went well for your son during the PEX. We finished PEX at Georgetown on August 22 and I wanted to say my two cents. It took a week or so for us to start to see the postive results from the PEX. Not that your son's or anyones recovery will be the same but by three weeks we had seen some large improvements and were very excited. At that point things started to go downhill. It turns out my son had a tooth infection that probably went undiagnosed for some time. Things have been mixed since. I think it's possible that the infection and the exteneded time it went undiagnosed might keep us from ever realizaing the full benefits of the PEX. My point is if we had it to do over again I would do everything in my power to keep my son from having any immune system challenges for as long as possible after PEX. This in my opinion would be full strength anti-biotics, no vaccines, make sure the teeth are in good shape, anti-biotic ointment on cuts, and a self contained sterile bubble environment for ten or so years like the bubble boy. Just kidding on that last part but be vigilant and jump on any flareups. If your son is already on antibiotics and things start to go backwards significantly I'd call Dr. Latimer for prednisone. Good luck.

[fuelforall]

Boy do I hear you on this!

 

 

"At this point I am seeing only minor changes in his behavior. It's so hard not to hope for a magical transformation, or on the other hand freak out inwardly at every obsessional/defiant comment... I'm trying to take a step back a bit, and have some confidence in him, give him some time for his brain to heal, though at the same time I htink lots of our kids' behaviors have become learned/ingrained over the years, so I have a somewhat contradictory impulse to draw the line and refuse to accept the behaviors that my gut tells me he can control."

 

Man, I sure hope mine turns the corner soon and don't be surprised if it takes a while, that's all I have to say!

 

Michael

[Ellen]

Bronxmom, I'm sure you are glad to have this overwith. I agree with what Alex says about trying to avoid any immune system challenges post PEX if possible. My son was there in early October and we saw only very minor improvements the first week after we were back, but since then my husband and I have been seeing more positive changes that are becoming a bit more obvious day by day. It was nothing fast and dramatic, but I'll take slow and steady as long as things are moving in the right direction.

I cracked up reading what you said about Georgetown "being in an alternative universe where everyone believes in PANDAS." This was how it was when we were there too, and it kind of took me by surprise. It was a nice feeling to know that the docs and nurses did believe that my son's PANDAS was real, that there was a true medical cause for what's been going on with him. Hopefully, some day this attitude of not doubting PANDAS will become much more widespread in the medical community. Last week someone from the hospital called to survey me about our experiences there, and I had only great things to say about all the staff there.

Best of luck and keep us posted.

 

Ellen

 

Hi, we are the latest crew back from PEX at Georgetown.

It went pretty smooth... in late Tuesday morning, out Thursday afternoon, we did the pherisis each day, tolerated it fine.

As others have reported, pulling out the catheter at the end of it was by far the worst part. My son howled like his leg was being amputated but insisted on watching the whole thing. Horrible. The doctor told him beforehand that it wouldn't hurt, which really made it worse.

Other than that I have nothing but glowing reports for the people at Georgetown. It was like being in a strange alternate universe where everyone believes in PANDAS and believes in aggressively seeking a physical cure. Everyone-- doctors, ward nurses, PEX nurses-- had a general grasp of PANDAS, was genuinely interested (to the point of seeking out research, etc.), and seemed proud that Georgetown was offering this treatment, deeply respectful of Dr. Latimer, and curious about the outcome of the PEX.

 

The worst part was being in the ICU! It was so painful for me to see the sick kids... after a while I just couldn't bring myself to leave our room.

 

I am hoping that as they do more of this, they'll be comfortable doing it in the regular peds ward.

 

Anyway the people were super nice (everyone in Georgetown and DC seemed strangely nice to me, actually) and my so was happy because he was doted on.

 

My only other hospital experience was giving birth in a NYC hospital, so I guess my expectations were low.

 

Anyway I left feeling very grateful to everyone at Georgetown.

 

At this point I am seeing only minor changes in his behavior. It's so hard not to hope for a magical transformation, or on the other hand freak out inwardly at every obsessional/defiant comment... I'm trying to take a step back a bit, and have some confidence in him, give him some time for his brain to heal, though at the same time I htink lots of our kids' behaviors have become learned/ingrained over the years, so I have a somewhat contradictory impulse to draw the line and refuse to accept the behaviors that my gut tells me he can control.

 

I don't want to speak for mommd, but I suspect much of the rapid and sudden improvement she saw in her son was from the IV steroids. (My son did not get IV steroids because he had no allergic reaction to the plasma stuff.)

 

I will say that he seems to look better somehow now. I mean his color and his eyes. For several years he just hasn't looked quite right to me.

[sf_mom]

So happy you were able to get your son treatment...... Wishing you all the best in the near short term in keeping him away from any illnesses. Our son is five weeks post IVIG. His brother and sister both had the flu twice during that period and we were able to keep him well by doubling up on the antibiotics. He is about 98% better and I look forward to being able to trust this process and looking back on this two years from now. BUT, we do feel like we've got our son back.

[mom md]

I think you are exactly right but the reason we did so well were the IV steroids. It made the hospital stay rough because he would not sleep and yelled at me a lot but when we left he seemed almost back to normal. I just recieved his CAM kinase II level 3 months post IVIG...99!!! Normal is 98!!!! This all means his brain is healing.

[Worried_Dad]

That is awesome! Hope you're past the "speed bump" and that you see great progress again.

 

 

I think you are exactly right but the reason we did so well were the IV steroids. It made the hospital stay rough because he would not sleep and yelled at me a lot but when we left he seemed almost back to normal. I just recieved his CAM kinase II level 3 months post IVIG...99!!! Normal is 98!!!! This all means his brain is healing.

[dcmom]

Bronxmom2- I was thinking about you all week, I will try to give you a call this weekend to talk.... I am glad everything went smoothly.

 

We are nice in DC, aren't we And yes, everyone seems to really like Dr Latimer!

 

I thought Julia looked really pale for about 4 days after pex. The first day home she was really on edge- possibly from lack of sleep and stress. Since then I have been noting lots of improvements. I am now really anxious about keeping her that way. I have doubled up on her antibiotics until we follow up with Dr L on 11/10, am not getting any vaccines, and am sending her back to school slowly.

 

Mom md- I assume you meant his cam kinase was 99 after pex (not ivig)- that is amazing... The best news I have heard for a long time. Has he quickly recovered from the relapse he was having?

[T_Mom]

I think you are exactly right but the reason we did so well were the IV steroids. It made the hospital stay rough because he would not sleep and yelled at me a lot but when we left he seemed almost back to normal. I just recieved his CAM kinase II level 3 months post IVIG...99!!! Normal is 98!!!! This all means his brain is healing.

 

 

Mom MD-- FANTASTIC NEWS! I think you are the first of anyone on here to have posted "normal" results!!! Wow! It works!

smiling and cheering for you mom md.

 

Bronx Mom--I will be anxiously awaiting reports in the coming weeks--I am so glad things went (relatively) smoothly for you at Georgetown, YEY!!!

 

DCMom -- May the good results continue! You courageous moms in the PICU are an inspiration, thanks.

TMom

[Debbie1]

Bronxmom,

 

I'm so happy to hear that you are home and all went smoothly. Looking forward to hearing good news from you and everyone else who recently underwent PEX/IVIG. Please keep us posted.

 

mommd and dcmom - I am so glad your kids are showing progress! I love reading about kids that are getting better. Please continue to post updates!

 

Debbie

[Kayanne]

I'm really glad that everything went so smoothly for your little guy--and I'm continually wishing the best!!

 

I asked Dr. Latimer if after PlasmPh a child would have to get new immunizations, and she said no because all the memory for those is stored in the liver.

 

~Karen