How do you know when PANDAS is really gone?

[Stephanie2]

It is hard for me to see where my child is at right now b/c he has had pandas since he was 18 months old and now he is 5. There have been very few times in his life, if any, when he has acted "normal", so I don't really know what I am looking for. We just found out about this over the summer and we just got him on a treatment plan last week (200 mg zithromax, slowly weaning to see what dose he needs to stay on prophylactically). We did 200 mg daily last week and now 200 mg every other day. Doc wants me to slowly get him to 200 mg every 3rd day and stay there for awhile. We are now on the 200 mg every other day and I have to say that he is doing very well (by the way, I am cheating by giving him some Olive Leaf Extract on the days off b/c I am too scared to just give him nothing!). The depression/anger seems to be gone and he is much less anxious (OCD seems to be quite reduced). There is some real normalcy in our house right now which is the ultimate goal.

 

However, he still has some tics (mild) and some sensory defensiveness (auditory and tactile). I guess I am wondering if some kids ultimately never lose the sensory stuff and we need to keep going with OT for a while. And do some still have some mild OCD that needs therapy?

 

I hate to increase his zithromax again b/c he gets some real behavior issues with yeast.

 

I guess what I am asking is how do you really evaluate the effectiveness of a treatment plan? Do you just go by gut instinct?

 

Stephanie

[thereishope]

For me, a lot is instinct. But, then, sadly, I have to get to know him all over agian and I don't know how much of his personality has just naturally changed over the course of the exacerbation. An example is just because he liked playing with Transformers prior to PANDAS resurfacing , doesn't mean that's an interest anymore just because it's normal for kids to chnage interests on a whim. Not all changes will be a result of PANDAS.

 

For my son, the OCD fades away (except for exacerbation # 3...will explain in a minute), I "test" him with things that he wouldn't tolerate in an episode and he passes, he acts happier, smiles, runs aroung outside ewithout a care. Arms raised like an airplane and just....happy. Reasoning returns. He acts in a way that one may expect a child to act.

 

One thing to remember is that some kids will aso have "pre-existing issues". Some may have had a sensory problem, some OCD, tics, etc in addition to whatever surfaced with PANDAS. I believe my son does have some slight sensory issues but I think it is "him". Luckily, it does not affcet or hinder daily life. They also were there prior to PANDAS first entering our lives. Same with a speech disorder he has.

 

Now back to exacerbation # 3. That time, I could just tell he was recovered from PANDAS but OCD remained. All other problems were gone, but that pesky OCD. Once I realized that and came to grips that it wasn't just going to go away this time, but it was a residual problem, I approached it as OCD. Not OCD as a result of PANDAS. When I did that by weaning him off his rituals and routines. He shed the residual OCD rather quickly and I am VERY proud to say he has none left. Let me say, it wasn't easy and it was stressful, but we did it.

 

Now someone in the family made the comment that they think my son had OCD anyway. What I explained to the was so many people may have traits of OCD. When you get that nagging feeling that you NEED to do something and it "drive you crazy", that may be slight OCD. So if my son gets bothered that something isn't the way he wants...that's ok. He doesn't have high anxiety over it, he can overcome it within a matter of a minute or so, I can reason with him and it doesn't hinder his life at all. I can go weeks without seeing something that one may consider OCD-ish. And when that happens, I do "test" him because I do want to make sure it isn't PANDAS again. That anxiety level and for how long they have it will tell you if it clinical OCD and needs therapy. Note...he did not ever go on SSRI's.

 

I hope this has helped and I did not go on too much of a rant.

[peglem]

It is hard for me to see where my child is at right now b/c he has had pandas since he was 18 months old and now he is 5. There have been very few times in his life, if any, when he has acted "normal", so I don't really know what I am looking for. We just found out about this over the summer and we just got him on a treatment plan last week (200 mg zithromax, slowly weaning to see what dose he needs to stay on prophylactically). We did 200 mg daily last week and now 200 mg every other day. Doc wants me to slowly get him to 200 mg every 3rd day and stay there for awhile. We are now on the 200 mg every other day and I have to say that he is doing very well (by the way, I am cheating by giving him some Olive Leaf Extract on the days off b/c I am too scared to just give him nothing!). The depression/anger seems to be gone and he is much less anxious (OCD seems to be quite reduced). There is some real normalcy in our house right now which is the ultimate goal.

 

However, he still has some tics (mild) and some sensory defensiveness (auditory and tactile). I guess I am wondering if some kids ultimately never lose the sensory stuff and we need to keep going with OT for a while. And do some still have some mild OCD that needs therapy?

 

I hate to increase his zithromax again b/c he gets some real behavior issues with yeast.

 

I guess what I am asking is how do you really evaluate the effectiveness of a treatment plan? Do you just go by gut instinct?

 

Stephanie

I'm kinda in the same boat you are....my daughter's PANDAS begin very early- before age 2. It has drastically altered her early childhood development and all subsequent development. So, my judgement of treatment effectiveness will be, is she getting better-moving in the right direction. At this point (my daughter is 15 now) I don't expect normal, but I sure do expect that she will began to make some progress developmentally, to regain some functioning that was lost to her. Treatment will only remove or reduce the impairment...the development/learning will still need some help- therapy!

[Stephanie2]

So, what type of therapy should I seek for a child who had PANDAS throughout his life and now needs to catch up to his peers with general "life skills"? I mean, a psychologist? Are there really any psychs who have ever dealt with a child who has recovered form pandas? I am starting to think I am on my own with this...just start from scratch, as if he is 20 months (when it all began) and teach him how to go through life? It feels a little overwhelming! I don't really know where to begin. I am planning to set up a behavior chart, but it is so much more than behavior. He needs to learn routines of daily living...getting dressed by himself, eating at the table, etc...

 

Anyone have any ideas?

 

Stephanie

 

It is hard for me to see where my child is at right now b/c he has had pandas since he was 18 months old and now he is 5. There have been very few times in his life, if any, when he has acted "normal", so I don't really know what I am looking for. We just found out about this over the summer and we just got him on a treatment plan last week (200 mg zithromax, slowly weaning to see what dose he needs to stay on prophylactically). We did 200 mg daily last week and now 200 mg every other day. Doc wants me to slowly get him to 200 mg every 3rd day and stay there for awhile. We are now on the 200 mg every other day and I have to say that he is doing very well (by the way, I am cheating by giving him some Olive Leaf Extract on the days off b/c I am too scared to just give him nothing!). The depression/anger seems to be gone and he is much less anxious (OCD seems to be quite reduced). There is some real normalcy in our house right now which is the ultimate goal.

 

However, he still has some tics (mild) and some sensory defensiveness (auditory and tactile). I guess I am wondering if some kids ultimately never lose the sensory stuff and we need to keep going with OT for a while. And do some still have some mild OCD that needs therapy?

 

I hate to increase his zithromax again b/c he gets some real behavior issues with yeast.

 

I guess what I am asking is how do you really evaluate the effectiveness of a treatment plan? Do you just go by gut instinct?

 

Stephanie

I'm kinda in the same boat you are....my daughter's PANDAS begin very early- before age 2. It has drastically altered her early childhood development and all subsequent development. So, my judgement of treatment effectiveness will be, is she getting better-moving in the right direction. At this point (my daughter is 15 now) I don't expect normal, but I sure do expect that she will began to make some progress developmentally, to regain some functioning that was lost to her. Treatment will only remove or reduce the impairment...the development/learning will still need some help- therapy!

[dcmom]

Stefanie- I can see where you must be overwhelmed. I really don't have experience with this- but I have a couple thoughts:

 

I think you could use some type of professional to guide you through this (setting priorities, techniques, moral support,etc). Is your son in school? Some thoughts would be: school psychologist or special ed teacher, child psychologist, occupational therapist. DD saw a child psychologist who specialized in anxiety during her worst ocd flare- in the end, I ended up going alone to some of the appts. It was a huge help for me to spend an hour discussing and brainstorming how to help dd.

 

Good luck- you can do it! Keep us posted!

[thereishope]

It is going to take a lot of work and patience, but when you look at the scheme of life and how much it will benefit him....it's definitely worth it!

 

The psychologist we saw said she had PANDAS kids before, but it didn't really help us. First, sometimes I wonder if the kids some docs claimed to have seen really had PANDAS.Also, each PANDAS child is different. What worked for one may not work for another. For me, she was very nice, understanding, and never criticized, but I feel my going there benefited the psychologist more than it did us. Pretty much, we taught her.

 

I would think that an OT would be a tremendous help. What type of therapists help people who have had strokes? They have to sometimes relearn everything.

 

What skills does he already have? I would suggest starting with something that you may see the fastest results. Build confidence. That is very important.

 

 

 

So, what type of therapy should I seek for a child who had PANDAS throughout his life and now needs to catch up to his peers with general "life skills"? I mean, a psychologist? Are there really any psychs who have ever dealt with a child who has recovered form pandas? I am starting to think I am on my own with this...just start from scratch, as if he is 20 months (when it all began) and teach him how to go through life? It feels a little overwhelming! I don't really know where to begin. I am planning to set up a behavior chart, but it is so much more than behavior. He needs to learn routines of daily living...getting dressed by himself, eating at the table, etc...

 

Anyone have any ideas?

 

Stephanie

 

It is hard for me to see where my child is at right now b/c he has had pandas since he was 18 months old and now he is 5. There have been very few times in his life, if any, when he has acted "normal", so I don't really know what I am looking for. We just found out about this over the summer and we just got him on a treatment plan last week (200 mg zithromax, slowly weaning to see what dose he needs to stay on prophylactically). We did 200 mg daily last week and now 200 mg every other day. Doc wants me to slowly get him to 200 mg every 3rd day and stay there for awhile. We are now on the 200 mg every other day and I have to say that he is doing very well (by the way, I am cheating by giving him some Olive Leaf Extract on the days off b/c I am too scared to just give him nothing!). The depression/anger seems to be gone and he is much less anxious (OCD seems to be quite reduced). There is some real normalcy in our house right now which is the ultimate goal.

 

However, he still has some tics (mild) and some sensory defensiveness (auditory and tactile). I guess I am wondering if some kids ultimately never lose the sensory stuff and we need to keep going with OT for a while. And do some still have some mild OCD that needs therapy?

 

I hate to increase his zithromax again b/c he gets some real behavior issues with yeast.

 

I guess what I am asking is how do you really evaluate the effectiveness of a treatment plan? Do you just go by gut instinct?

 

Stephanie

I'm kinda in the same boat you are....my daughter's PANDAS begin very early- before age 2. It has drastically altered her early childhood development and all subsequent development. So, my judgement of treatment effectiveness will be, is she getting better-moving in the right direction. At this point (my daughter is 15 now) I don't expect normal, but I sure do expect that she will began to make some progress developmentally, to regain some functioning that was lost to her. Treatment will only remove or reduce the impairment...the development/learning will still need some help- therapy!

[smartyjones]

my son's symptoms first appeared just about a year ago at age 4, 4 mths. i feel i do have a fairly good handle on what has been pandas-related and what is his personality (of course, still hard to judge b/c this young is such development age). first issue of knowing when it's gone - end of summer, into sept, we rated him at 90% pre-pandas. now i believe i see that inch closer to 93-95%. i rate this according to:

• tempered response to an upset rather than an over-the-top fight or flight freak-out
  
• ability to calm down in a reasonable time - 5 min or under versus 15, 20, 30-minutes of not being able to let it go
  
• capacity to reason and see cause and effect
  
• ability to stick to agreed up limits - shutting of the tv after one show; if he continues doing something he's not supposed to or hasn't done what he's supposed to, with a reminder, he says, 'oh yeah, right' and does it rather than an argument
  
• capacity to find a solution or work with someone else helping find a solution or at least entertain there is a solution
  

this last one is huge for him. a few weeks ago, he wanted an umbrella to go out in the rain to protect his book. I said i couldn't find b/c we were late and just a quick run to the car. he then just made a thoughtful face and put the book under his coat.

last week, i forgot it was his snack day at school. huge b/c he's gluten, egg and dairy-free so his day is the only one he gets to eat what every one else does. we had discussed making his pumpkin muffins in these cute jack-o-latern molds we have. i remembered 5 min before leaving. he was sad and said he wanted us to bring no snack but he moved right along with getting ready, getting to the car. i told the teacher not to mention anything to him. he ate the chips and salsa i did bring. in the car on the way home, he said he'd like to make the muffins today at home b/c he didn't get to bring them. we happily made muffins. issue over.

 

I believe these are strides he's made from a medical basis of treating pandas, not from behavioral help. That said, i think behavior help is very important.

 

i am quite jaded of the psychological profession and disgusted at the lack of help/incompetence we've encountered. someone posted on here recently they walked out of an office in the first few minutes - i think you've got to be willing to do that if you feel it's just not jiving. we wasted all summer with a loser psych who was touted as the answer for us. after the first visit, my husband and i just looked at each other and said, "he just doesn't get it." we just didn't know where else to turn - he was supposed to be the 'one'.

 

i have found help from anxietybc.com with behavior suggestions. they have a really good parenting section.

i also post on here ad nauseum about the explosive child by ross greene. he says you have to treat behavior issues like any other delay. even up until the last few weeks and these changes - while 'out of exacerbation' he seemed to have the frustration mgmt and problem solving skills of a 3 year old, not a 5 year old. i think it's helpful to treat them as such rather than expecting them to be age-appropriate in that area. just as you wouldn't expect a kid with a reading delay to read at age level. so yes, i would suggest treating him in those life mgmt skills as a 20 month old if that is what he displays.

 

we have now found a helpful psych. she doesn't do CBT if we need that in the future, but her insights are helpful. my son does a potty delay thing and argues when i tell him to go. if we don't prompt him, he won't go - i mean 12 hrs won't go - then i have an kid with a full bladder being obnoxious. we were making it worse by tying the behavior to the potty. she suggested ignoring the potty and dealing with the behavior just as we would if we thought it wasn't related to the potty. i was 2 steps ahead and needed to be only 1. now it seems so simple but i couldn't see it. it's only been about a week but seems to be working. so i think the outside objective viewpoint can be very helpful. it just seems to take a lot to make sure that viewpoint is also in line with your lifestyle and your parenting beliefs.

[peglem]

So, what type of therapy should I seek for a child who had PANDAS throughout his life and now needs to catch up to his peers with general "life skills"? I mean, a psychologist? Are there really any psychs who have ever dealt with a child who has recovered form pandas? I am starting to think I am on my own with this...just start from scratch, as if he is 20 months (when it all began) and teach him how to go through life? It feels a little overwhelming! I don't really know where to begin. I am planning to set up a behavior chart, but it is so much more than behavior. He needs to learn routines of daily living...getting dressed by himself, eating at the table, etc...

 

Anyone have any ideas?

 

Stephanie

RDI (Relationship Development Intervention) is based on research in human development- mostly early childhood. They have extensively researched what fosters development and their program amplifies and focuses on actual development, instead of just dealing with things behaviorally. Here is the website:

 

http://www.rdiconnect.com/

 

Behavioral therapy (ABA) does not work for my child. This does.

[lukes_mom]

Hello,

Unfortunately, I'm at the beginning of this process so I can't help with your question. I just wanted to suggest that if your child isn't on a probiotic, that would be a good idea. It'll help with the yeast issue. Good luck!

 

It is hard for me to see where my child is at right now b/c he has had pandas since he was 18 months old and now he is 5. There have been very few times in his life, if any, when he has acted "normal", so I don't really know what I am looking for. We just found out about this over the summer and we just got him on a treatment plan last week (200 mg zithromax, slowly weaning to see what dose he needs to stay on prophylactically). We did 200 mg daily last week and now 200 mg every other day. Doc wants me to slowly get him to 200 mg every 3rd day and stay there for awhile. We are now on the 200 mg every other day and I have to say that he is doing very well (by the way, I am cheating by giving him some Olive Leaf Extract on the days off b/c I am too scared to just give him nothing!). The depression/anger seems to be gone and he is much less anxious (OCD seems to be quite reduced). There is some real normalcy in our house right now which is the ultimate goal.

 

However, he still has some tics (mild) and some sensory defensiveness (auditory and tactile). I guess I am wondering if some kids ultimately never lose the sensory stuff and we need to keep going with OT for a while. And do some still have some mild OCD that needs therapy?

 

I hate to increase his zithromax again b/c he gets some real behavior issues with yeast.

 

I guess what I am asking is how do you really evaluate the effectiveness of a treatment plan? Do you just go by gut instinct?

 

Stephanie

[Megs_Mom]

Hi Stephanie - What a great question! While our child does not have Autism (or yours), I found this community to be invaluable when searching for references. We found our OT for sensory integration issues there. There are often great schools that you can tap into for a few hours a day or a full day, to help bring a child's "life skills" back up to speed. Just as we "find our child again" through treatments, many in the Autism community are accustomed to finding a child whose illness or allergy has finally been identifed - but they now have developmental issues due to "missing so much of life". It does sound overwhelming! But I bet your local Autism organization can help. Maybe start there.

[peglem]

Stephanie,

Just to add about the RDI-

If you feel like your child's development was interrupted..RDI is the treatment. Everything else I've seen, over many, many years is a form of behavior mod. But, RDI addresses development. They will assess where your child is developmentally and coach you to guide his development in a clear, sequential manner. I don't make any profit from this (in fact, I'm incurring considerable expense), but I'm very excited about the progress we've seen with RDI, compared to the stagnation and regression we've seen with other programs.

[Stephanie2]

Thank you so much for all of your input!

 

To respond to a few of your posts:

 

Yes, he is on some probiotics and also some antifungal herbs and diflucan! Yeast doesn't stand a chance at this point (although the diflucan will be DC'd in a couple of days...we will see!)

 

He is already seeing an OT who specializes in sensory integration issues, so I guess they will be helping him catch up to speed, too.

 

RDI, I have heard of it and actually tried to implement it when I felt that my 20 month old was regressing into autism. I didn't get very far, b/c we "got him back" very quickly with biomedical interventions...haleluia! But, I never thought of using this therapy on my 5 year old. I wouldn't know where to begin. I will definitely look into this.

 

Also, as an update I did some brainstorming this past week and I found a great "discipline program" called Accountable Kids. It is based on rewards and consequences and includes a lot of life skills. It is one of the best I have found b/c they do all the work for you (there is a pegboard where the child manages his responsibilities and rewards). Here is the website: http://www.accountablekids.com/

 

Anyway, my son, very surprisingly, has really taken to this system. It is very organized and really gives the child a lot of control over his/her life. I think this will definitely help bring order to our lives.

 

Stephanie

 

Stephanie,

Just to add about the RDI-

If you feel like your child's development was interrupted..RDI is the treatment. Everything else I've seen, over many, many years is a form of behavior mod. But, RDI addresses development. They will assess where your child is developmentally and coach you to guide his development in a clear, sequential manner. I don't make any profit from this (in fact, I'm incurring considerable expense), but I'm very excited about the progress we've seen with RDI, compared to the stagnation and regression we've seen with other programs.