chronic PANDAS kids

[michele]

We are definately chronic PANDAS exacerbations that have waxed and waned and are sawtoothed over time. Over the years since age 1 when he had overnight chorea and blinking with a positive strep test and elevated antibodies and he is now turning 8 and things keep evolving. Things have gotten worse as it has progressed over time. The tics (tourettes)have come and gone and changed over time. We are now worse with the verbal tics and saying and doing inappropriate/bad things(talking about butts, weiners, boobs, poop and cussing). The initial episode was with strep but others times it has come on with shots, stress and illness in general mostly fevers. Some epiosodes are worse then others and last longer and involve more compulsions. He also has the everyday obsessions over getting things and fixed ideas. He has urinary and encopresis (poop issues are the worst!). He gets loud and impulsive and his attention span is short. He takes things wrong and gets mad easily and angers fast. He has coordination issues and handwriting delays and visual and gross motor delays. OT helps alot for the sensory and motor delays. Longterm antibiotics have never completely improved his behaviors. The only help we have found is meds for the symptoms and those have to be closely monitered and tweaked often. If he is in the height of a bad exacerbation therapy won't help at all and is a waiste of money. Until symptoms are calmed down and he can be reasoned with he just overreacts and gets distructive. Each episode seems to take about three months to improve regardless of antibiotics for us. Although last episode with the steroids he seemed to get worse behaviors before he got better. Right now Tenex and risperdal and prozac are helping alot with homelife and schoolwork. His attention is better and his anger/impulse seem improved. I just think it is something we will have to constantly battle with until a cure is found. I personally think PANDAS is on the autism spectrum/aspergers end. He is very smart and advanced in his research of his interests. Also the psychiatric component makes it hard to treat without medications because he has alot of anxiety. However, finding a Dr. to treat him effectively has been a struggle and nobody seems to have the interest or time or answers to follow him over time. Dr. T has said maybe he could help us get off some of the meds and get on stronger antibiotics longterm if we travel to NY or phone consult. We have had a lot of disappointment with Dr's even when traveling to FL or MD. I have lost count of how many we have seen maybe in the 20's. For now we are sticking with the local psychiatrist and the meds since they are helping. So far he has not had a bad exacerbation this winter. A minor one in the fall with the flu and he had some tics and moods but nothing like over the summer which was h e l l for our family. Transitions and being off schedule are tough on him and us. I now have respite care in place if we need it through our local MRDD and pathway for children.It gives our family a break where we can go do something without a meltdown for a few hours.

 

In reference to needing more therapy and time...

 

I still have this feeling that some problems, such as OCD, do become residual for some kids and the abs will not fully be the answer for that problem, but therapy is necessary. I realize PANDAS kids during a full blown exacerbation will probably not benefit fro CBT or maybe even ERP, but when you feel you have hit a road block and you are so close to recovery, therapy should be considered (in addition to continuing abs).

 

If CBT can retrain the brain to think the right way and MRI of the brain show that CBT alone can change the chemical balance, then why can't a healthy brain be retrained to do the wrong thing.? Like a bad, reversal CBT?

 

Maybe I think this because my son had residual OCD.

[fuelforall]

We are definately chronic PANDAS exacerbations that have waxed and waned and are sawtoothed over time. Over the years since age 1 when he had overnight chorea and blinking with a positive strep test and elevated antibodies and he is now turning 8 and things keep evolving. Things have gotten worse as it has progressed over time. The tics (tourettes)have come and gone and changed over time. We are now worse with the verbal tics and saying and doing inappropriate/bad things(talking about butts, weiners, boobs, poop and cussing). The initial episode was with strep but others times it has come on with shots, stress and illness in general mostly fevers. Some epiosodes are worse then others and last longer and involve more compulsions. He also has the everyday obsessions over getting things and fixed ideas. He has urinary and encopresis (poop issues are the worst!). He gets loud and impulsive and his attention span is short. He takes things wrong and gets mad easily and angers fast. He has coordination issues and handwriting delays and visual and gross motor delays. OT helps alot for the sensory and motor delays. Longterm antibiotics have never completely improved his behaviors. The only help we have found is meds for the symptoms and those have to be closely monitered and tweaked often. If he is in the height of a bad exacerbation therapy won't help at all and is a waiste of money. Until symptoms are calmed down and he can be reasoned with he just overreacts and gets distructive. Each episode seems to take about three months to improve regardless of antibiotics for us. Although last episode with the steroids he seemed to get worse behaviors before he got better. Right now Tenex and risperdal and prozac are helping alot with homelife and schoolwork. His attention is better and his anger/impulse seem improved. I just think it is something we will have to constantly battle with until a cure is found. I personally think PANDAS is on the autism spectrum/aspergers end. He is very smart and advanced in his research of his interests. Also the psychiatric component makes it hard to treat without medications because he has alot of anxiety. However, finding a Dr. to treat him effectively has been a struggle and nobody seems to have the interest or time or answers to follow him over time. Dr. T has said maybe he could help us get off some of the meds and get on stronger antibiotics longterm if we travel to NY or phone consult. We have had a lot of disappointment with Dr's even when traveling to FL or MD. I have lost count of how many we have seen maybe in the 20's. For now we are sticking with the local psychiatrist and the meds since they are helping. So far he has not had a bad exacerbation this winter. A minor one in the fall with the flu and he had some tics and moods but nothing like over the summer which was h e l l for our family. Transitions and being off schedule are tough on him and us. I now have respite care in place if we need it through our local MRDD and pathway for children.It gives our family a break where we can go do something without a meltdown for a few hours.

 

Sigh. Sure sounds a lot like a boy I know and he's 9 and in the hospital. Thanks for the med tips, we are rebooting them now while he is in exacerbation.

[thereishope]

For my son there was no want need or desire to change. Because of that I did not give him options of what the goals would be like they do with CBT.I have to say that when I started trying to eliminate the remaining OCD I could tell that he was so close to full recovery, except for the OCD. the remaining PANDAS behavior we had seen were gone. I never did rewards with him. I did kind of what you are doing. I weaned him off the rituals, habits, etc. I warned him a day ahead what we would be tackling so he didn't feel blindsided. Sometimes, he even asked me to take a picture of him doing the ritual one last time. I didn't know if that was appropriate, but I figured if that helped him with closure, so be it. I tackled the problems I was involved in first since I was able to help control them better. And I tackled the ones that I believed would cause the least anxiety to eliminate first. It wasn't a cut and dry, "you need to do this" or "stop do it all together", but more like changing it up a bit or eliminating part of it. When the anxiety stopped occuring from it and he started to do it on his own without reminders, I knew it was time to take it to another level. It was very tendious process, but it worked for him.

 

The thing with any therapy when it comes to OCD is you have to commit to it. The second you let your guard down and you give in to what you were tryng to eliminate, you probably lost all ground you had made. OCD feeds off of it.

 

My son was very resistent to therapy. He couldn't do CBT because to him nothing was wrong.

 

 

vickie - so how did you deal with the fact that the goals were not his? how did you get him to participate when he had no desire, thought or motivation to change? i've been able to do some things with my son just by making them part of the routine but i do get hung up on the fact that the goals are really not his so he has no motivation to work toward them. the potty has really been our main issue as far as this is concerned. he now goes at home, not at school.

 

if he doesn't want to do it, no 'thing' or priviledge matters. i could go on and on about all the rewards that were left by the wayside when trying to potty train. nothing is as big as not doing it. i agree there has to be something but it's impossible for us to figure out. the only way i've been successful is by getting it into the routine. like now, we do a 'step' in the potty at school when i pick him up. i get worried that we're never getting to the end goal - he'll participate with the step but only so far.

 

thanks

[Worried_Dad]

DITTO!!! When our son improved dramatically after IVIG round 1, the OCD got much better, but the tics did not. Since we've been on the high-dose augmentin XR, OCD has diminished in a major way... but the darned vocal tics are still hanging on, not much improved.

 

Over our son's "PANDAS adventure" in the past 3 years, the tics have been the most stubborn. BTW, Lauren's Mom, how is Lauren doing? Is Dr. T still taking the lead on her treatment?

 

 

Bummer...I HATE tics!

 

If I take the definition of Chronic to be Trifilleti's and Pavone's definition (i.e., gradual onset, carrier state, more tics than OCD), then I don't think my daughter would qualify. Her symptoms remitted with antibiotics -- but came back when antibiotics were discontinued. In addition, her exacerbations were linked to strep in the house. Once treated it remitted.

 

Looking at case histories, it seems like those with tics definitely take longer to remit.

 

Buster

 

Folks,

As the parent of a chronic PANDAS sufferer, vs a sudden onset sufferer, how much success have you all had with treatment? I don't know why I suspect the chronic sufferers are tougher nuts to crack.

 

Please weigh in with thoughts on this. Thanks in advance, Buster, if you respond to this.

 

Michael

 

Hey Michael --

 

I'm not sure, but I think we qualify as "chronic." Son diagnosed with OCD at 6, waxes and wanes (or exacerbations) throughout the last 6 years and only moved on to PANDAS about 4 months ago. We are about to begin our third month-long dose of abx, and we ARE seeing improvement . . . slow, saw-toothed, but improvement nonetheless. I think you're right though . . . I feel like these are "tougher nuts to crack," maybe because the duration of their illness (and early mis-diagnosis) has permitted the strep to go intracellular? Maybe because the brain has taken on some more permanent configurations or accommodations during the illness prior to abx intervention? Maybe because the associated behaviors have become more ingrained over the extended time period, so even once the physical issues are addressed, it takes longer to turn back the clock on the learned behaviors?

 

I'll be interested in hearing what Buster has to say, also!

[coco]

UPDATE ON WACKY WEEK: Well, I feel better about this week right now because I just came from the pharmacy...long story short all week long I had been giving her expired augmentin (exp 12/31) unwittingly. She takes the liquid and receives a series of small bottles which I store in another fridge. There was one in there that I had not checked the date on so that certainly would account for the up in behaviors. BTW the pharmacist told me that it looses half it's potency after 10 days and rapidly breaks down. SO, I was essentially giving her no abx this week that were of any value until tonite. Additionally, she rec'd her 5th IVIG with Dr. B on Wednesday p.m. and today she is the best we have ever seen her -- EVER! I don't want to jinx it, but this time there is NO DOUBT there are SIGNIFICANT changes. I hope this boosts the spirits of all us "chronics" everywhere!!!!

[EAMom]

Faith,

what doses of abs (and how much does your son weigh?) have you tried?

 

Have you noticed any mood improvement, even if tics remained the same?

[EAMom]

Hi to all!

 

Our 11 yo son is a chronic/incorrectly dxed case that was a figured out a 1 1/2 y ago after a stint in psych ward. We are three months post IVIG and quite discouraged. We saw some very encouraging improvements starting about post IVIG 3 weeks, only to a steady downward spiral starting in Dec. It has been a very rough day again and I feel like throwing in the towel. Dr. K has agreed prescribe 875mg Augmentin until conversion. A month ago we discovred that our 15 yo daughter had titers of 752/5700!! With the behavioral/stomach symptoms Dr. K wanted to see her. He is pretty sure she has the adol variant of PANDAS. She is on 875 mg Augmentin for a month. I'm not holding my breathe that that will completely take care of it. She is so much better. I believe someone someone else in the family is running around with strep despite the negative throat cultures. I have had considerable problems with my psoriasis, which can be irritated by GABHS. I haven't been able to get my doc or Dr. K signed on to checking titers for the rest of us that were negative. I wonder about our 13 yo whose behavior can be much younger and her spacey, lack of focus-stay on track traits. I did email Dr. K begging for titer checks. I agree with all the comments about these kids being tough cases to crack. It's been a long haul I thought was looking like it was going to be over and I am not sure where we are going now as my son tries to break down another door & terrorize his sisters. Gotta go. Dawn

 

Iowadawn,

you should run the Cunningham blood test on your 13-year-old, if you are unsure about whether it's PANDAS. Lots of PANDAS kids have low ASO/anti-dnase b .

[EAMom]

Makes sense to me. I agree with Peglem too.

[EAMom]

So, "suden onset", if it is mild enough (sensory stuff, anxiety or tantrums that could be written off as "normal phases", even tics) is undiagnosed, and depending on if the child gets antibiotics (and depending on the child's immune system) this child MAY develop a new "chronic" baseline. Then, things get A LOT worse (eg the wrong strain of strep at the wrong time ) and the child goes completely wacko (exorcist, pychiatric hospitalization). So, you have an Acute on Chronic situation (the only blessing is, PANDAS is finally diagnosed).

 

Or...the other side of the same coin...a child could have an obvious sudden onset acute change...but it isn't treated quite aggressively enough. So, symptoms improve but not 100% and then there is a "baseline change" after each subsequent exacerbation (which could be caused by a full-blown strep infeciton, strep exposure, or non-strep illness). In that case...you have an Acute pandas that is turning Chronic.

[Iowadawn]

Hi to all!

 

Our 11 yo son is a chronic/incorrectly dxed case that was a figured out a 1 1/2 y ago after a stint in psych ward. We are three months post IVIG and quite discouraged. We saw some very encouraging improvements starting about post IVIG 3 weeks, only to a steady downward spiral starting in Dec. It has been a very rough day again and I feel like throwing in the towel. Dr. K has agreed prescribe 875mg Augmentin until conversion. A month ago we discovred that our 15 yo daughter had titers of 752/5700!! With the behavioral/stomach symptoms Dr. K wanted to see her. He is pretty sure she has the adol variant of PANDAS. She is on 875 mg Augmentin for a month. I'm not holding my breathe that that will completely take care of it. She is so much better. I believe someone someone else in the family is running around with strep despite the negative throat cultures. I have had considerable problems with my psoriasis, which can be irritated by GABHS. I haven't been able to get my doc or Dr. K signed on to checking titers for the rest of us that were negative. I wonder about our 13 yo whose behavior can be much younger and her spacey, lack of focus-stay on track traits. I did email Dr. K begging for titer checks. I agree with all the comments about these kids being tough cases to crack. It's been a long haul I thought was looking like it was going to be over and I am not sure where we are going now as my son tries to break down another door & terrorize his sisters. Gotta go. Dawn

 

 

 

Iowadawn,

you should run the Cunningham blood test on your 13-year-old, if you are unsure about whether it's PANDAS. Lots of PANDAS kids have low ASO/anti-dnase b .

 

EAmom-

My mission next week is to see if I can convince our GP to run titer checks on the three of us that came up with negative throat cultures. My gut is that my psoriasis is being aggravated by strep and it just isn't showing up in the throat, but I'm causing problems. Does Buster have a take on this? I am not sure we don't have another culprit. My 15 yo girl was just lightly positive & her titers came back at 752/5700. That didn't happen overnight. My gut was right on with her with her stomach issues. Dr. K says it is not necessary to check the others' titers. If I hadn't heeded the forum's & Dr. C's recommendation to culture everyone, we wouldn't have suspected the daughter. I understand the low titer result situation. We are considering the Cunningham blood draw for her. If she were to come back elevated, she would be an example of a kid that would come in under the radar. Dawn