Who here isn't entirely sure their child even has PANDAS?

[AmySLP]

I know for certain that my 6.5 yr old daughter has PANDAS-after nearly 8 months of strep at age 4 that was difficult to erradicate & onset of tics and emotional problems & OCDduring that time period, it was apparent. SHe responds to ABX well and if taken off, the tics return with a vengence. My question is my 4 year old daughter, who Dr B feels also has PANDAS, but I'm on the fence. She does not have that step history, a few bouts, but nothing like my other. SHe is however very extremely emotional, has sudden fear of being alone, has sensory problems, night time incontinence. I'm torn between is this PANDAS on some form of the spectrum or simply a needy 4 year old, whose grown up in a household with a PANDAS sibling. The only thing we do see in her labs are elevated Cd3 and poor response to Prevnar vaccine in terms of the serotypes. Trials of ABX for 4-6 weeks at a time have shown no huge improvement but I have not honestly journaled enough to catch small changes. She's my question...my older daughter is absolutely affected.

[eljomom]

AmySLP--do you mind sharing what abx your dd6.5 is on? and how long she had tics prior to starting abx? Thanks.

 

I know for certain that my 6.5 yr old daughter has PANDAS-after nearly 8 months of strep at age 4 that was difficult to erradicate & onset of tics and emotional problems & OCDduring that time period, it was apparent. SHe responds to ABX well and if taken off, the tics return with a vengence. My question is my 4 year old daughter, who Dr B feels also has PANDAS, but I'm on the fence. She does not have that step history, a few bouts, but nothing like my other. SHe is however very extremely emotional, has sudden fear of being alone, has sensory problems, night time incontinence. I'm torn between is this PANDAS on some form of the spectrum or simply a needy 4 year old, whose grown up in a household with a PANDAS sibling. The only thing we do see in her labs are elevated Cd3 and poor response to Prevnar vaccine in terms of the serotypes. Trials of ABX for 4-6 weeks at a time have shown no huge improvement but I have not honestly journaled enough to catch small changes. She's my question...my older daughter is absolutely affected.

[MichaelTampa]

I know for certain that my 6.5 yr old daughter has PANDAS-after nearly 8 months of strep at age 4 that was difficult to erradicate & onset of tics and emotional problems & OCDduring that time period, it was apparent. SHe responds to ABX well and if taken off, the tics return with a vengence. My question is my 4 year old daughter, who Dr B feels also has PANDAS, but I'm on the fence. She does not have that step history, a few bouts, but nothing like my other. SHe is however very extremely emotional, has sudden fear of being alone, has sensory problems, night time incontinence. I'm torn between is this PANDAS on some form of the spectrum or simply a needy 4 year old, whose grown up in a household with a PANDAS sibling. The only thing we do see in her labs are elevated Cd3 and poor response to Prevnar vaccine in terms of the serotypes. Trials of ABX for 4-6 weeks at a time have shown no huge improvement but I have not honestly journaled enough to catch small changes. She's my question...my older daughter is absolutely affected.

 

 

Maybe you could test the 4yo for some markers of inflammation or autoimmunity--C3A and C4A (not an expert but think they test something like inflamation), or, of course, Cunnigham CamKinase?

[AmySLP]

AmySLP--do you mind sharing what abx your dd6.5 is on? and how long she had tics prior to starting abx? Thanks.

 

I know for certain that my 6.5 yr old daughter has PANDAS-after nearly 8 months of strep at age 4 that was difficult to erradicate & onset of tics and emotional problems & OCDduring that time period, it was apparent. SHe responds to ABX well and if taken off, the tics return with a vengence.

 

Eljomom- Let me try to put this in a nutshell

My daughter was treated initially for her onset of strep with Ammox in August 2008 (she was one month shy of 4. For about 6-7 weeks prior to that she was treated for everything else-she first presented while we were at the beach with a rash on both upper thighs (it was thought to be a yeast type infection at first, then bacterial etc, etc). She had some strange behaviors during this time, but no tics. Eventually she presented with this same rash on her chest-very classic scarletina. Her throat was swabbed and so began our attempts to erradicate strep. SHe was on Ammox,, she'd clear and then 1-2 weeks after the Abx stopped the behaviors and the scarletina rash would come back and then our pediatrican would put her on Augmentin (these were typical treatment doses for a child her weight at that time). This pattern went on for about 7 months, including January 2009 when one day the tics started. This started in the midst of her being on Ammox and then being dx. with Ebstein Barr/Mono. Out of frustration, I took her to a new pediatrician while we awaited our appt with Dr LAtimar, as by about February 2009 I had found out about PANDAS. He put her on clindamycin-which erradicated it all within about a month-behaviors, tics, choreiform movements with her tongue, emotional lability. We went 10 months symptom free-I even wondered if my daughter really had PANDAS & if she had the right dose ABX, if we would have ever ended up going through that nightmare for all those months. She would have very minor occasional flares with colds etc, but I only realize that in hindsight now. Then one day May 2010 she walked in the door from school and her arms were doing figure eights, when she sat down so were her legs. Her fingers were moving like she was playing the piano and her vocal tics and facial tics were all there too (she did not go to school with any symptoms)- I went crazy knowing at that moment that my daughter needed ABX. Called our local ped, Dr. LAtimar, and Dr. B when I didn;t hear back from Latimar. Dr. B spoke with me on the phone and suggested Azith.-she had never been on it before-I want to say it was 350 mg. It took away the choreiform movements and really complex tics, but after a few weeks when we finally got to see him, the facial & vocal tics still remained. He switched her to Augmentin ES 400mg (1 tsp 2x/day). Her tics went away within a week or so. We have been able to reduce that dose to 1x/day (and she takes it in chewable form which we cut and she swallows-this amounts to 400mg Aug & 250 Ammox to get the strength of the ES without more clav. acid than she should have by going with all Augmentin). On this dose, she had been 100% tic free for months. Then we had a period that I was away with a sick family member, her meds ran out and I told my husband to let it go as she was doing so well and we were going to be talking to Dr. B about reducing-----biggest mistake ever!! I came home 5 days later to find my daughter laden with vocal tics, facial tics, and this distinct movement with her finger that she's done in the past. I put her back on the 2x/day dose and things calmed down to the point that I was comfortable going back to 1x/day (that was about a month ago now). She is probably 95% tic free now, with some minimal tics being noticed later in the evening when she's tired. WE have a revisit with Dr B on the 28th of MArch. Obviously I will not be taking her off meds anytime soon.

 

My daughter's main symtpom I would say is tics, although they are prob mild-mod overall when uncontrolled. I hope this answered your question. For her the tics came while on ABX, but probably a pretty low typical dose for a 4 yr old at that time. Again she got Mono at the time the tics began too-so was that the trigger? I'll never know, but I will never question again if she has PANDAS just as looking into our family hx. I feel that my Dad, myself and my sister had the same.

 

Amy

[AmySLP]

I know for certain that my 6.5 yr old daughter has PANDAS-after nearly 8 months of strep at age 4 that was difficult to erradicate & onset of tics and emotional problems & OCDduring that time period, it was apparent. SHe responds to ABX well and if taken off, the tics return with a vengence. My question is my 4 year old daughter, who Dr B feels also has PANDAS, but I'm on the fence. She does not have that step history, a few bouts, but nothing like my other. SHe is however very extremely emotional, has sudden fear of being alone, has sensory problems, night time incontinence. I'm torn between is this PANDAS on some form of the spectrum or simply a needy 4 year old, whose grown up in a household with a PANDAS sibling. The only thing we do see in her labs are elevated Cd3 and poor response to Prevnar vaccine in terms of the serotypes. Trials of ABX for 4-6 weeks at a time have shown no huge improvement but I have not honestly journaled enough to catch small changes. She's my question...my older daughter is absolutely affected.

 

 

Maybe you could test the 4yo for some markers of inflammation or autoimmunity--C3A and C4A (not an expert but think they test something like inflamation), or, of course, Cunnigham CamKinase?

[AmySLP]

The Cd 3 was elevated (38- not sure what normal range is) and just re-tested...we see Dr. B back on March 28th. If Cunningham's test was a difinitive yes/no I'd do it, but we haven't b/c I fear she is so mild, that the results will be just as inconclusive as things are now.

 

I'm open to any suggestions-thank you,

 

Amy