Back from PEX

[FallingApart]

Hi everyone,

 

I've been away for what seems like forever. We were at Georgetown last week for PEX and the one thing I forgot was my computer!!! We are back home now and settling in. We did the PEX and the folks at Georgetown were fabulous and did an amazing job. While we were there we saw a few very minor improvements in DD. She was able to sleep a bit and her drawing abilities returned. But her behavior is still terrible. In fact, it seems worse!!!

 

The fact that we saw some improvement in the hospital made me think this might be like the IVIG where we saw instant improvement, but so far it is not like that for us. Upon returning home, DD's behavior seemed to get worse than before we even left for PEX. I understand she has been through a major trauma and i am so hopeful that is what we are seeing in her are the effects of the trauma. Her art skills are amazing and she sings now. That just blows me away. But I am just so stuck on the behavior. It is so hard to make it through the day when your 3 year old is throwing chairs across the room because you told her no or her tower fell over. I don't mean to be a downer over here. I almost didn't write but I knew that I would want to hear how someone's experience went, so I am filling you all in. Of course, I will keep everyone posted at any improvement we see.

 

If anyone else who has gone through PEX feels that their situation was like ours, can you please let me know. DH and I are in need of some hope. And on top of all of this, DD has gained a TON of weight from the dreaded steroids. It is so sad to see. It is like the problems just keep mounting. Now I just hope we don't get hit with DCMom's insurance problem!!!

 

Ok, I hope my next post will be more positive!

[LNN]

We did PEX in August. Things absolutely got worse for about 3 weeks. Then they got better - much better. The major difference we saw was that pre-pex, PANDAS episodes would be a bell curve. A ramping up, then the "healing in reverse' where symptoms would dminish in the revers order they appeared.

 

Post-pex, we saw symptoms, but they were more like fireworks - a half day of something here, then quiet, then an hour of something else a few days later. Never the bell curve of multiplying symptoms. By week 6, DS was better than he'd been since he first got sick in Fall '08.

 

We did have a brief relapse in mid-Oct when a friend got strep. Saw a mild buildup of symptoms. We treated aggressively with a change in antibiotics and within two weeks we were back to baseline.

 

For some, it absolutely gets worse before it gets better. But when it does get better, it gets much much better. I would do it all again in a heartbeat.

 

Laura

[Alex]

Ditto what LLM said. My son had one of his worst days ever about a week after PEX but then we saw steady improvement. In addition, be as agressive as you can with anitbiotics. We saw Dr. Latimer yesterday and she called an infectious disease MD while we were there who said 250mg a day of azith is perfectly fine long term. I would absolutely push for that to cut down the chances of new infections or fight any immune responses if there happened to be some intracellualar strep lurking in there somewhere. Or do augmentin if there is no penecillin allergy. Alex

[faith]

FallingApart,

I've started a thread on our child's histories with PANDAS where we each have our own post box to give background on our child and all the info that you have. its good to see comparisons and have the background info on someone instead of having to search back on threads or ask tons of questions (but we can still do that too on othe threads), Would you mind scrolling down to the thread a filling it out when you get a chance? Its titled "Member Profile on PANDAS kids"......something like this will be good for you too when you want to see who else had PEX and what their experience was. thanks,

 

LLM, would you mind filling one out too? thanks, it really can help, sometimes a poster is not on-line and can't answer questions immediately.

 

hate to be pain, but anyone else reading, please fill one out too?

 

thanks

Faith

[dcmom]

Hi Falling apart,

 

I am sorry to hear things have been stressful. I would definitely try to stay positive. We noticed some small things in the hospital as well - better appetite, calmer, etc. Then the first two days home dd was on edge (trauma and lack of sleep). So, your daughter is much younger, maybe it will take her a bit longer to get over the trauma of the hospital. I think that might be what you are seeing in the behavoir.

 

Hang in there!

 

Eileen

[EAMom]

We saw Dr. Latimer yesterday and she called an infectious disease MD while we were there who said 250mg a day of azith is perfectly fine long term. I would absolutely push for that to cut down the chances of new infections or fight any immune responses if there happened to be some intracellualar strep lurking in there somewhere. Or do augmentin if there is no penecillin allergy. Alex

 

Woo hooo!! so maybe Dr. Latimer will get off her anti-Azithromycin kick!

[Ellen]

Falling apart, sorry to hear that things have gotten worse post PEX, and I hope you can hang in there and stay hopeful. It is interesting that you say that your daughter's drawing abilities returned and improved. This is a very good sign that something is working. I think that different parts of the brain may heal at different rates. My son is now 6 weeks post PEX and I have seen small improvements in some areas (like in general mood and responsiveness to questions and directions) and I am still waiting and hoping for some improvements in other areas such as his ability to read, to think clearly and to focus on homework. I still want and hope to see more and am trying to remain upbeat about the things that are looking better. I have to confess that I had this fantasy of seeing this dramatic overnight change where my son would suddenly morph into his pre-PANDAS self from three years ago and like some magic wand, PEX would just make all the remaining PANDAS symptoms magically go away. But this has not been the case for our son, who is older (13), has been dealing with PANDAS for a long time now (almost three years) and has had a complicated case that began as strep but was worsened with vaccines. Your daughter is very young. That can be a plus. The brain does take a long time to heal, and this is what I keep telling myself as I wait and watch for more positive changes in my son.

 

Ellen

 

Hi everyone,

 

I've been away for what seems like forever. We were at Georgetown last week for PEX and the one thing I forgot was my computer!!! We are back home now and settling in. We did the PEX and the folks at Georgetown were fabulous and did an amazing job. While we were there we saw a few very minor improvements in DD. She was able to sleep a bit and her drawing abilities returned. But her behavior is still terrible. In fact, it seems worse!!!

 

The fact that we saw some improvement in the hospital made me think this might be like the IVIG where we saw instant improvement, but so far it is not like that for us. Upon returning home, DD's behavior seemed to get worse than before we even left for PEX. I understand she has been through a major trauma and i am so hopeful that is what we are seeing in her are the effects of the trauma. Her art skills are amazing and she sings now. That just blows me away. But I am just so stuck on the behavior. It is so hard to make it through the day when your 3 year old is throwing chairs across the room because you told her no or her tower fell over. I don't mean to be a downer over here. I almost didn't write but I knew that I would want to hear how someone's experience went, so I am filling you all in. Of course, I will keep everyone posted at any improvement we see.

 

If anyone else who has gone through PEX feels that their situation was like ours, can you please let me know. DH and I are in need of some hope. And on top of all of this, DD has gained a TON of weight from the dreaded steroids. It is so sad to see. It is like the problems just keep mounting. Now I just hope we don't get hit with DCMom's insurance problem!!!

 

Ok, I hope my next post will be more positive!

[dcmom]

Just wanted to add another thought, and to some degree this could be worse since your daughter is younger.

 

I believe they "learn" from pandas. In other words, when they have pandas they don't necessarily realize it. I think they develop some "habits", and need to be coaxed out of them... For a 5 year old, 6 months is forever, they do not remember (necessarily) what they were like before. I don't know what in particular you are seeing now- but keep this in mind.... (Dr L agreed with this...).

[Megs_Mom]

Just wanted to add another thought, and to some degree this could be worse since your daughter is younger.

 

I believe they "learn" from pandas. In other words, when they have pandas they don't necessarily realize it. I think they develop some "habits", and need to be coaxed out of them... For a 5 year old, 6 months is forever, they do not remember (necessarily) what they were like before. I don't know what in particular you are seeing now- but keep this in mind.... (Dr L agreed with this...).

 

I also agree with this - adding behavorial therapy appropriate to the type of issue (rage, adhd, ocd, tics) can be very helpful. If you need suggestions, let us know specific behaviors that you would like to try a behavorial program with. We are still dealing with a few compulsions that seem to just be more habit rather than true compulsion. The brain is very elastic - it can learn very quickly on the positive - but it can also teach itself bad habits too, as a result of an illness.

[bronxmom2]

Hi FallingApart,

I have been wondering how you guys are doing!

 

My son is now 2.5 weeks out of PEX, and he is doing very very well...But not 100%.

 

His lingering issues seem the opposite of what you are describing... his behavior/attitude/mood are SO MUCH better, but he still can't write. He still panics a little (less than before) at the sight of math problems. His academic work and his attention are improving, though. I can walk out of the room and he will stay on task... for a little while. He is starting to get some pleasure out of work... slowly.

 

For us, I think, as people have mentioned, this is much a matter of habit as the underlying PANDAS. My son has struggled with this for at least 4 years (he is 7). I am trying to patiently insist that he work as hard as he can, to overcome this idea that he can't do anything. I guess it would have been foolish to expect his executive function to appear out of nowhere fully formed. He needs to learn it.

 

How does your daughter look? The one thing I have definitely noticed is that my son looks different. My husband has noticed this too, and he is much less attuned. (He is my son's stepfather) He just looks so much healthier!

 

Good luck, keep us posted.

[sf_mom]

I just wanted to say it was so up lifting to log onto the forum and see wonderful news. IMPROVEMENTS post PEX, YEAH!!!!!!!!

 

-Wendy

[FallingApart]

Thanks everyone! It is helpful for us to hear that not everyone had an instant change in their children. I know this is unrealistic to expect, but we did see it with IVIG and I was thinking for some reason it might be even better with PEX since PEX is a bigger deal. I want everyone's children to be 100% fine, but it is helpful for me to read that not everyone's is/was right away.

 

As far as how she looks. That seems to come and go too. When we were still in the hospital, I thought she looked a bit better. But somehow, the steroids seem to be doing worse things to her even in just these past few days. Her cheeks are enormous and iti s really hard to get past that to look at her to judge how healthy she looks. I know exactly what you are referring to though - the just looking healthier - because we saw it with IVIG. Right now it is just really hard to judge because she is not looking her best. Does anyone have any tips for trying to reduce the weight that was added with the steroids? I'm so thankful that she is young and has time to grow vertically. But I am worried these effects of the steroids will be around for a while!

 

The learned behaviors is a good thought. I just met with the neuropsych again today. (If there is anyone who hasn't done this yet, I can't say enough good about it. Ours is PANDAS friendly though- so that would make a big diference). They came and observed us prior to PEX and I think they think our situation is even worse than we think it is! It was so validating to get someone else to see how bad it is. They said we need an aide to come in to help her learn problem solving skills. I was so thankful that a professional suggested this and is going to help us set it up. I believe that DH and I are very good at this, but we are just out of energy.

 

I have a question. Perhaps there is no answer though. Does anyone know why IVIG could work so quickly for us and PEX would take longer? What would the reasoning be?

 

When I wrote this post, DH and I had just had a talk about learning to accept our explosive child permanently. We had all but given up hope. Thank you for your support and your stories. Perhaps we can pick ourselves back up once again and keep hoping!