Waxing & Waning

[Tattoomom]

Do PANDAS kids wax & wane with their symptoms, like TS, or is it more of a constant battle?

 

I'm just wondering since my son is undiagnosed with no treatment, would he have a remission of symptoms, or is that only achieved by Abx?

 

Is it always "there" and you just experience exacerbations? But you can always tell it's there?

 

Does that make any sense?!

[ajcire]

I feel like my son's kind of comes and goes even when not on antibiotics but that regardless even on antibiotics that there is something pandas about him all the time.. I can't really explain what I mean by there is something pandas about him to anyone except maybe to another parent of a pandas kid.. so much of pandas is now easily confused with his personality... like his quirks and what not.

 

Not sure if that is what you meant or not.

 

 

Do PANDAS kids wax & wane with their symptoms, like TS, or is it more of a constant battle?

 

I'm just wondering since my son is undiagnosed with no treatment, would he have a remission of symptoms, or is that only achieved by Abx?

 

Is it always "there" and you just experience exacerbations? But you can always tell it's there?

 

Does that make any sense?!

[thereishope]

Perhaps what appears to be waxing and waning as associated with TS or OCD may be the result of a virus, exposure to strep, etc when it comes to PANDAS. Also, during an exacerbation, there are ups and downs where you are making progress then you get hit with a setback.

[Tattoomom]

I guess I just wonder how my son could have tics/OCD and then go 6 months tic free and then BLOW UP with tics & OCD after the H1N1 virus. His anxiety is constantly there no matter what.

 

I just wondered if your PANDAS children ever took a "break" from symptoms?

[Tattoomom]

Perhaps what appears to be waxing and waning as associated with TS or OCD may be the result of a virus, exposure to strep, etc when it comes to PANDAS. Also, during an exacerbation, there are ups and downs where you are making progress then you get hit with a setback.

 

 

That makes sense, Vickie!

 

Ds just has times where I think... "Wow! He seems better!!" and for a minute, I'm fooled into thinking it's a thing of the past and then my bubble deflates. I just don't understand the good streaks we have... It's such a tease!

[nevergiveup]

Yes there always seems to be some underlying anxiety all the time and my dd tics came for one year at age nine. Remission of tics over two years and then a horrible movement disorder attack at age 13 with chorea and tics. I always knew she wasn't well because she suffered from chronic infections and fatigue and was always ill. Now she was diagnosed with CVID and with monthly IVIG and high dose abx I can see she is a lot better, better than ever. But .... Still some eye tics. Its funny how the tics are no big deal when she is well. She laughs, is engaging, can concentrate, can sleep, doesn't have anxiety. The tics seem horrible when they are so sick and under distress. You can see it in their eyes and as a parent you know your kid is suffering. But now that my dd is not sufferring, her tics although still very noticeable, her daily life and overall well being is strong.

[Kayanne]

I guess I just wonder how my son could have tics/OCD and then go 6 months tic free and then BLOW UP with tics & OCD after the H1N1 virus. His anxiety is constantly there no matter what.

 

I just wondered if your PANDAS children ever took a "break" from symptoms?

 

Was your son on any medication to treat his OCD/tics that you could attribute to his remission? If not, then I would say you are probably looking at PANDAS.....The original description of PANDAS (I guess you could call it "classic") by Susan Swedo is that it has a waxing and waning pattern--with much larger ups and downs than with TS.

 

My daughter's first recognizable episode was this spring, and an infectious disease dr. wouldn't say it was PANDAS because she had yet to go through a provable "waxing and waning" associated with a strep infection....I do think some drs will only diagnose PANDAS if they see this pattern...I recall an article from a doctor at Children's Hospital in Boston that said that you must see this pattern to diagnose.

 

I'm so thankful that Dr. Latimer had enough compassion to see it differently....

 

Many parents on this forum are dealing with a more chronic variant of PANDAS...cronic strep, multiple assults to the immune system, and immune deficiencies.

 

Also, Diana P. told me that with each episode the "baseline" of the child moves just a bit more....that is why it is critical to try to prevent future strep infections.

 

For my daughter, she is a classic case of PANDAS, positive strep test, elevated titers, a wax of symptoms, and now a wane (hopefully never to wax again!), but there is a very slight issue with minor OCD tendencies....so we are watching her very closely....is this a baseline shift? Who knows? We have a family history of OCD tendencies....so it is really hard to say.

 

~Karen

[Tattoomom]

Was your son on any medication to treat his OCD/tics that you could attribute to his remission? If not, then I would say you are probably looking at PANDAS.....The original description of PANDAS (I guess you could call it "classic") by Susan Swedo is that it has a waxing and waning pattern--with much larger ups and downs than with TS.

~Karen

 

 

No. Not at all. I had started to think that maybe his tics were just transient childhood tics since they were totally gone from Feb.-Aug.

 

He's never had a positive throat culture and his titers were normal wayyyy back when this all started (in 2007)

 

I have no clue what this is? TS? PANDAS???

[Tattoomom]

Yes there always seems to be some underlying anxiety all the time and my dd tics came for one year at age nine. Remission of tics over two years and then a horrible movement disorder attack at age 13 with chorea and tics. I always knew she wasn't well because she suffered from chronic infections and fatigue and was always ill. Now she was diagnosed with CVID and with monthly IVIG and high dose abx I can see she is a lot better, better than ever. But .... Still some eye tics. Its funny how the tics are no big deal when she is well. She laughs, is engaging, can concentrate, can sleep, doesn't have anxiety. The tics seem horrible when they are so sick and under distress. You can see it in their eyes and as a parent you know your kid is suffering. But now that my dd is not sufferring, her tics although still very noticeable, her daily life and overall well being is strong.

 

 

Does your dd have PANDAS?

[Buster]

Do PANDAS kids wax & wane with their symptoms, like TS, or is it more of a constant battle?

 

In our case, our dd9's exacerbations are quite distinct. There was always some underlying social anxiety, but this is tiny by comparison. If 100 is an all out exacerbation, the social anxiety is a 7-8. During her worst exacerbation, there were contamination fears, an inability for the family to go through a doorway out of order, huge defiance, complex movement disorders involving her right hand, measurement rituals, obsessive questioning around food, hallucinations and occular migraines, lashing out, significant defiance, lability, ... I would never characterize this as waxing/waning.

 

During remission, the only symptom was some minor social anxiety and perhaps some separation anxiety at night.

 

I should mention that in our case an exacebation lasts approximately 4-5 weeks. It has a noticable start and a noticable conclusion. The only problem we've seen is if another trigger occurs in the midst of a present exacerbation. We called our dd9 our canary for strep. When she started to ramp we would take her sister in and 4 out of 6 times she was positive for strep. In the 5th case, my dw was positive. In the 7th instance, both daughters got 5th's disease (we don't know why that had any bearing but that's what happened). The sister is culture negative at 3 weeks post treatment (i.e., we do check for clearance).

 

Bottom line is we don't really see waxing/waning. We see more the episodic "sawtooth". I'm sure every kid is different, but that's what we saw.

Buster

[thereishope]

From what I've experienced myself and have read some kids do have other issues in addition to PANDAS. Whether it be sensory, speech, or another disorder. Some question whether it is from an undetected PANDAS episode that happened early on in life and some say it is just another layer of their child totally separate from PANDAS. So, there is a chance a child has things like anxiety that is part of them, then they have PANDAS in addition to that.

 

For my child, he had/has a pre-existing speech disorder. He also has some quirks that are just him. Also, I will reference to Sammy from Saving Sammy. Even though he has been PANDAS symptom free for quite awhile, I beleive he also has ADD or ADHD. That's part of him.

 

In reference to not having a documented strep test. I am aware of some others like that. Perhaps they never had strep and it was a different original trigger or your child did have strep very early on in life and you just never knew it. Again, many PANDAS children are asymptomatic when it comes to strep and if your child is an infant or toddler, there are 100 reasons you can think of for the behaviors that may have surfaced at that time and you would have never thought of going to the docs, esp for a strep test on a child that seemed healthy.

 

So, would you mind giving me a timeline again. At what age did you notice his first tics? Were they gradual and increased or was an explosion of tics out of nowhere? How would you describe your child when he was a baby or toddler?

 

One more thing...with my son when it is strep triggered, it is a noticeable, obvious start when an exacerbation comes along. It's like an explosion. When it is another trigger like a virus, I am left questionnning and wondering if his PANDAS is being triggered because his viral triggered reaction is more subtle and not as bad. Since he is 6 is why I have a more difficult time distinguishing bet PANDAS and a 6 year old being moody when it is viral triggered. My son does not have tics, it's more emotional, OCD, etc. Finally, when there is a viral or allergy trigger when he is still recovering from astrep triggerered excaerbation, it is obvious. The OCD kicks up.

 

I always feel bad saying this, but it really is different for each kids. We all seem to have overall similarities, but each child has different patterns of healing, different triggers, and severity along with each trigger varies and idifferent symptoms. I'm just fortunate that for the time being I think I kind of know how my son reacts to different triggers at different times.

[thereishope]

One more thing I thought of. When my son had a bad setback during his 3rd strep triggered excaerbation, we took him in for another strep test. It was negative. We were then told it we were seeing waxing and waning and to take him to the psychiatrist. It in fact was his allergies. That's when we learned allergies was a trigger for him. So, to "professionals" it appeared he had OCD and he was waxing and waning, when in fact it was a different trigger we weren't aware of. Once we got his allergies under control he was back in recovery mode and doing better.

 

The worsening of PANDAS symptoms seemed to occur before the physical allergy symptoms surfaced. All he had was horrble red eyes. I guess his PANDAS is more sensitive than the rest of his body was to the allergies.

[Tattoomom]

So, would you mind giving me a timeline again. At what age did you notice his first tics? Were they gradual and increased or was an explosion of tics out of nowhere? How would you describe your child when he was a baby or toddler?

 

 

Our son, now 8 years old, has always been a spirited child. We went through terrible 1, 2's, 3's & 4's with him. He was highly aggressive as a toddler (hitting, crying, tantrums) yet highly sensitive (hated tags in his shirt, loud noises, crowds, new places) He seemed to outgrow a lot of these issues with time. And then came the tics around age 5 1/2. He had a throat-clearing tic that lasted from Dec 06-Feb 07. He was very sick at the time it started, with a cold/cough, and we thought it was just from being sick. He then added eye blinking in March of 2008. The eye blinking was way worse than the throat-clearing ever was. He started out blinking all.day.long. He had strep titers done back in March 2007, 3 months after he had his first explosion of tics and was negative. (ASO was 7 DNASE-B was <60) He saw a Pediatric Neurologist in April 2007 who said it was transient childhood tics/anxiety disorder and recommended counseling and said it may or may not end up being Tourette Syndrome.

 

He's waxed and waned, and even been completely tic free for 6 months at a time but then they seem to come back, usually during/after an illness. He developed a new eye roll tic in September, had Swine Flu in October and took Amoxicillan during the H1N1 for an ear infection. Ever since, he's started throat clearing and blinking again but added some new tics like finger flicking/touching finger tips (looks like he's trying to flick something off his finger), neck tic (looks like he's trying to crack his neck/stretch), shoulder tics, and he wipes his hands on his pants or the couch constantly and he just appears to be very nervous and fidgety. He constantly washes his hands but hates to dry them off. I've noticed him licking his hands this week... that is new.

 

We have no confirmed family history of TS. We do have a whole lot of autoimmune disorders, several blood disorders (his baby sister has an autoimmune-blood disorder), ADHD, Anxiety, & Depression.

[nevergiveup]

Yes she has PANDAS, she has a cam kinase of 162 and recently her antidopamine 1's are highly elevated according to Dr. Cunningham. She started her first Pandas attack at 7 severe OCD and psychosis and stopped eating for 9 days she was hospitalized for a week and her sysmptoms just disappeared. Then her second attack was with strep throat at age 9 tics, anger and basically a zombie for almost a year, then on and off panic ocd attacks, at the time I thought total remission for 2 years until after her attack last May she had IVIG and she told me that she has never been better her "stress and thoughts" are gone. She said they had continued throughout her remission the whole time she was just hiding it from us. I think we wanted to believe our ped, she said it would go away so for coping I pretended she was ok but deep inside I knew she had residual symptoms.

 

 

 

uote name='Tattoomom' date='Dec 24 2009, 12:39 AM' post='49642']

Yes there always seems to be some underlying anxiety all the time and my dd tics came for one year at age nine. Remission of tics over two years and then a horrible movement disorder attack at age 13 with chorea and tics. I always knew she wasn't well because she suffered from chronic infections and fatigue and was always ill. Now she was diagnosed with CVID and with monthly IVIG and high dose abx I can see she is a lot better, better than ever. But .... Still some eye tics. Its funny how the tics are no big deal when she is well. She laughs, is engaging, can concentrate, can sleep, doesn't have anxiety. The tics seem horrible when they are so sick and under distress. You can see it in their eyes and as a parent you know your kid is suffering. But now that my dd is not sufferring, her tics although still very noticeable, her daily life and overall well being is strong.

 

 

Does your dd have PANDAS?

[HeidiS]

I'm just curious. Does anyone else have a teenager just being diagnosed? It seems as if the other kids are young. Although, I think I can pinpoint when this started as 3rd grade.

 

 

 

 

 

 

 

 

Yes she has PANDAS, she has a cam kinase of 162 and recently her antidopamine 1's are highly elevated according to Dr. Cunningham. She started her first Pandas attack at 7 severe OCD and psychosis and stopped eating for 9 days she was hospitalized for a week and her sysmptoms just disappeared. Then her second attack was with strep throat at age 9 tics, anger and basically a zombie for almost a year, then on and off panic ocd attacks, at the time I thought total remission for 2 years until after her attack last May she had IVIG and she told me that she has never been better her "stress and thoughts" are gone. She said they had continued throughout her remission the whole time she was just hiding it from us. I think we wanted to believe our ped, she said it would go away so for coping I pretended she was ok but deep inside I knew she had residual symptoms.

 

 

 

uote name='Tattoomom' date='Dec 24 2009, 12:39 AM' post='49642']

Yes there always seems to be some underlying anxiety all the time and my dd tics came for one year at age nine. Remission of tics over two years and then a horrible movement disorder attack at age 13 with chorea and tics. I always knew she wasn't well because she suffered from chronic infections and fatigue and was always ill. Now she was diagnosed with CVID and with monthly IVIG and high dose abx I can see she is a lot better, better than ever. But .... Still some eye tics. Its funny how the tics are no big deal when she is well. She laughs, is engaging, can concentrate, can sleep, doesn't have anxiety. The tics seem horrible when they are so sick and under distress. You can see it in their eyes and as a parent you know your kid is suffering. But now that my dd is not sufferring, her tics although still very noticeable, her daily life and overall well being is strong.

 

 

Does your dd have PANDAS?