4 weeks post Plasma Exchange

[Alex]

Hi all, it's been four weeks since my son finished PEX at Georgetown Hospital and I wanted to give a quick update.

 

So, drum roll please, he is doing really well and has been improving steadily, but still has a way to go. The most satisfying improvement we have seen is the reutrn of his personality. From the time his PANDAS started until a week or two after PEX he was pretty much incapable of relating to others in any sort of normal fashion. Since about two weeks after we got back from the hospital we have been seeing his old personality for a good portion of every day. Last week we took a family trip to Boston from Maine, and on the entire two hour drive home, he and his mom sat in the back of our Mini-van and my son talked about school, his interests, told jokes, laughed at his mother's stories and expressed his emotions. It was great. I looked at my wife in the rear view mirror from time to time and she would catch my eye and we would both get teary eyed. It's great to have him back, even if it's not 24/7 yet.

 

One of my sons symptoms throughout PANDAS was frequent urination. It remained a symptom through antibiotics and prednisone but as of about two weeks ago he is back to going a just three or four times a day and can sleep through the night without having to go.

 

When we first got back from the hospital, his OCD was actually worse, then declined somewhat over the course of the first week back home and then exploded again for one day about a week after finishing the PEX. Later that night he came down with a cold, so we are guessing that his immune system was ramping up to fight the cold and caused a brief flare up in his PANDAS. Since then the OCD has been in steady decline. He does a little bit of checking at night after going to the bathroom before bed, and still is avoiding the occasional crack in the sidewalk but other than that seems to be largely free of it.

 

The most discouraging aspect of the recovery so far is that he is still getting angry very easily. I would say though that this too is improving. He hasn't had any major rages in several weeks and seems to get past his anger more easily, but his terrible moods are still impacting him and the family pretty negatively.

 

That's all for now. I'll post again in a month or so to give another update. On a side note, my son is on 200mg of Azithromycin every other day. We are not as confident as we would like that this is a sufficient dose to prevent a strep infection should he get exposed. Any thoughts.

 

Thanks, Alex

[Kayanne]

I'm so happy you are seeing improvements....I hope it continues.

 

As far as the azith, what does your son weigh? You can google azithromycin dosages and usually get an accurate idea.

 

When Dr. Latimer put my daughter on Prednisone in June, she also prescribed 100mg of azith daily as a prophylactic. She was about 42 lbs at the time.

 

~Karen

[T_Mom]

Alex--What wonderful news-- Thank you for sharing this with us.

 

It sounds like things are on the mend--It is a long road in both directions it seems--but you seem to be heading in the right direction! The fact that you are hearing and seeing "normal" type of interactions again...personality back, and laughter...I remember how I felt when those returned--thankful, ever so thankful--

 

All the best--

[EAMom]

My dd was on 250mg daily azith when we started her (43 pounds-june 08) and is still on it (54 pounds).

[mom md]

I spoke with Latimer and she said they recovery is slow...just like encephalitis. With encephalitis you see two steps forward, one step back for the first 6 months, then the next 6 months are fairly progressive recovery. The next year they are still recovering and the fine tuning is done. She said any time they are tired, over-heated, etc you will see "flash-backs" of before. It is sort of mis-firings as the neurons heal. She said they have not done a great job telling parents what to expect so this was helpful. My son is doing great and he still has some physical findings on exam. He also has some mild vocalizations, poor impulse control, and subtle chorea things when tired. Please keep me posted. I am so glad he is healing...it just takes time.

[mama2alex]

Alex,

 

Thank you for posting this update! I am so happy for you, and your story gives us hope. We'll be watching for your next update - I hope you see lots of additional improvements in that time.

[T_Mom]

I spoke with Latimer and she said they recovery is slow...just like encephalitis. With encephalitis you see two steps forward, one step back for the first 6 months, then the next 6 months are fairly progressive recovery. The next year they are still recovering and the fine tuning is done. She said any time they are tired, over-heated, etc you will see "flash-backs" of before. It is sort of mis-firings as the neurons heal. She said they have not done a great job telling parents what to expect so this was helpful. My son is doing great and he still has some physical findings on exam. He also has some mild vocalizations, poor impulse control, and subtle chorea things when tired. Please keep me posted. I am so glad he is healing...it just takes time.

 

 

Wow--Mom MD that is great to hear--

 

Your post really captures the essence of the PANDAS/PITAND healing...It does take time.

It certainly has for us -- I really like the thoughts on progressive recovery, first 6 months, next 6 months, the following year...

 

I also really appreciate your sharing of the notes from Dr. Latimer. It certainly represents what my d has experienced including the periodic flashbacks when overly tired.

 

I am really glad to hear your son is doing so well--

[LNN]

Just want to echo what MomMD has experienced. We are 5 weeks post-pex. Our first few weeks saw symptoms get worse - sometimes much worse- than prior to treatment. But this week, my son went 3 days completely symptom free - except for a continued struggle with reading. But during previous periods of convalescence, we've seen his reading improve significantly, so we're hopeful this will improve again. That issue aside, the changes we see are huge. Some days it feels so strange to realize we haven't heard a hum, grunt, or seen a twitch all day. He's even having a lovefest with his sister right now (probably won't last). It feels like I'm living in someone else's house!

 

He's had two colds since school started. One only lasted 2 days and this one is looking like a normal cold. Aside from that half-cough some of you know so well, no Pandas symptoms. And the half-cough is mixed in with real coughs, so maybe it's become a learned habit of sorts. Will be keeping a hawk's eye on it to see if it subsides with the cold. But his ability to fight a cold seems better. He seems stronger.

 

We expect slow healing. We keep trying to remind ourselves that occasional set-backs don't mean "it" is back. Just that things are healing. But it's so hard to not freak when you see the smallest symptom return.

 

It took us a long time to reach the decision to do Pex. But I'd encourage anyone considering it to go ahead with it. It's indescribable to see my son coming back. And no one is happier than he is.

 

Also- for anyone who's done Pex or IVIG, I am working with another mom to gather some info so we can present a clearer picture of recovery. No one has done any follow up. If you you wouldn't mind sharing your contact info with me, please pm me so we can contact you once we have our act together with some sort of questionnaire. Thanks!

Laura

[Ellen]

Laura, thanks for sharing this. I am really happy to hear that your son is making a good recovery after plasma exchange. My son is scheduled to receive PEX at Georgetown next week. He had it done last year at Children's Hospital of Philadelphia but it was through a peripheral line and they were unable to complete it due to problems with his veins. Dr. Latimer feels that a central line will probably be more effective. We saw some very good improvements after the last PEX but he still has some major issues with OCD and focusing. Reading (especially fiction) is a problem for him. It is great to hear you to talk about him coming back and being happy. I will get in touch with you with my contact information for your follow-up questionnaire.

 

Ellen

 

Just want to echo what MomMD has experienced. We are 5 weeks post-pex. Our first few weeks saw symptoms get worse - sometimes much worse- than prior to treatment. But this week, my son went 3 days completely symptom free - except for a continued struggle with reading. But during previous periods of convalescence, we've seen his reading improve significantly, so we're hopeful this will improve again. That issue aside, the changes we see are huge. Some days it feels so strange to realize we haven't heard a hum, grunt, or seen a twitch all day. He's even having a lovefest with his sister right now (probably won't last). It feels like I'm living in someone else's house!

 

He's had two colds since school started. One only lasted 2 days and this one is looking like a normal cold. Aside from that half-cough some of you know so well, no Pandas symptoms. And the half-cough is mixed in with real coughs, so maybe it's become a learned habit of sorts. Will be keeping a hawk's eye on it to see if it subsides with the cold. But his ability to fight a cold seems better. He seems stronger.

 

We expect slow healing. We keep trying to remind ourselves that occasional set-backs don't mean "it" is back. Just that things are healing. But it's so hard to not freak when you see the smallest symptom return.

 

It took us a long time to reach the decision to do Pex. But I'd encourage anyone considering it to go ahead with it. It's indescribable to see my son coming back. And no one is happier than he is.

 

Also- for anyone who's done Pex or IVIG, I am working with another mom to gather some info so we can present a clearer picture of recovery. No one has done any follow up. If you you wouldn't mind sharing your contact info with me, please pm me so we can contact you once we have our act together with some sort of questionnaire. Thanks!

Laura

[sf_mom]

I just love following your story!!!!! Its so nice to hear of your son's improvements.

 

Our son just completed IVIG with Dr. K yesterday and we are seeing further improvement within 48 hours. I just wanted to respond directly to your question regarding antibiotics. Dr. K wants our son on 250 m.g. Azithromycin taken daily in the morning for a minimum of one year. He said that it could be longer 'things are changing rapidly' and he'll keep me posted. BUT, his perspective was... that our son's immune system needs an opportunity to recover. He is 5 1/2 and about 43 pounds.

 

 

Hi all, it's been four weeks since my son finished PEX at Georgetown Hospital and I wanted to give a quick update.

 

So, drum roll please, he is doing really well and has been improving steadily, but still has a way to go. The most satisfying improvement we have seen is the reutrn of his personality. From the time his PANDAS started until a week or two after PEX he was pretty much incapable of relating to others in any sort of normal fashion. Since about two weeks after we got back from the hospital we have been seeing his old personality for a good portion of every day. Last week we took a family trip to Boston from Maine, and on the entire two hour drive home, he and his mom sat in the back of our Mini-van and my son talked about school, his interests, told jokes, laughed at his mother's stories and expressed his emotions. It was great. I looked at my wife in the rear view mirror from time to time and she would catch my eye and we would both get teary eyed. It's great to have him back, even if it's not 24/7 yet.

 

One of my sons symptoms throughout PANDAS was frequent urination. It remained a symptom through antibiotics and prednisone but as of about two weeks ago he is back to going a just three or four times a day and can sleep through the night without having to go.

 

When we first got back from the hospital, his OCD was actually worse, then declined somewhat over the course of the first week back home and then exploded again for one day about a week after finishing the PEX. Later that night he came down with a cold, so we are guessing that his immune system was ramping up to fight the cold and caused a brief flare up in his PANDAS. Since then the OCD has been in steady decline. He does a little bit of checking at night after going to the bathroom before bed, and still is avoiding the occasional crack in the sidewalk but other than that seems to be largely free of it.

 

The most discouraging aspect of the recovery so far is that he is still getting angry very easily. I would say though that this too is improving. He hasn't had any major rages in several weeks and seems to get past his anger more easily, but his terrible moods are still impacting him and the family pretty negatively.

 

That's all for now. I'll post again in a month or so to give another update. On a side note, my son is on 200mg of Azithromycin every other day. We are not as confident as we would like that this is a sufficient dose to prevent a strep infection should he get exposed. Any thoughts.

 

Thanks, Alex

[KeithandElizabeth]

SF Mom,

 

I am surprised that Dr. K recommended the Azithromycin to you because during our consult he did not want us to use Azith and instead wanted us to use Augmentin. I was nervous because Amoxicillan never eradicated strep for our kids and I hear Augmentin is stronger, but that Azith. is the best. Has he changed his protocol?

 

Elizabeth

[sf_mom]

My son has a reaction to Amoxicillin so he prescribed Azithromycin. I'm not sure he has changed protocol.... he did seem open to longer term prescription than one year.