Can you have PANDAS w/o OCD, Tics, Anxiety?

[peagreen]

Both my children have behavioral changes following illness, which to me represents some kind of neuro-inflammatory immune issue, but they do not display much in the way of typical PANDAS issues (tics, OCD, or anxiety). Instead, both my kids become hyper, loopy, sensory seeking, and emotionally unstable/ridged.

 

When I look at the typical presentation of PANDAS, I feel like my kids don't quite fit, yet they definitely have something going on. Also, my daughter's Cunningham results were above the mean in the PANDAS range. We tried Azith for both kids, but because they both have yeast issues, we saw both kids become worse while they were on it.

 

Also, my son has other abnormal immune system lab results, like low IgG, low IgA and failure to mount antibody responses to pneumo strep and candida. His Cunningham results, however, were close to normal, and he's the one with more severe behavior issues.

 

Does this sound like PANDAS, or something else? Since antibiotics didn't work, what should we do to help them? I'm terrified that my daughter is a walking time bomb with her Cunningham number at 165. Should we consider IVIG for one or both of them?

 

Would appreciate some advice.

 

P

[ajcire]

My son presents with some minor tics and had a short while of some minor ocd behaviors. I have no doubt that he has pandas. I am concerned about my dd who does not have the tics or the ocd either... she is an emotional time bomb. A simple request now will result in a meltdown. She gets strep frequently. I just recognize the behaviorial component I see in my son, in her. I was not able to do the cunningham test on her yet. I regret not doing it on her when I did my son's but I didn't have the same degree of concern at the time. I am definitely watching her and am wondering if there is ocd there that I just don't recognize as ocd. This child is incapable of making a decision, is unable to accept no, will cry and scream for hours. She was always a bit dramatic but she was not always so extreme. Her teacher describes her as a delight. IF I didn't know better I would think she was just a spoiled brat but I can see that she is just beside herself over these things in a different way than the times she just is typical mad about not getting her way.

 

I guess I have no advice, just I know how you feel.

 

 

 

 

 

Both my children have behavioral changes following illness, which to me represents some kind of neuro-inflammatory immune issue, but they do not display much in the way of typical PANDAS issues (tics, OCD, or anxiety). Instead, both my kids become hyper, loopy, sensory seeking, and emotionally unstable/ridged.

 

When I look at the typical presentation of PANDAS, I feel like my kids don't quite fit, yet they definitely have something going on. Also, my daughter's Cunningham results were above the mean in the PANDAS range. We tried Azith for both kids, but because they both have yeast issues, we saw both kids become worse while they were on it.

 

Also, my son has other abnormal immune system lab results, like low IgG, low IgA and failure to mount antibody responses to pneumo strep and candida. His Cunningham results, however, were close to normal, and he's the one with more severe behavior issues.

 

Does this sound like PANDAS, or something else? Since antibiotics didn't work, what should we do to help them? I'm terrified that my daughter is a walking time bomb with her Cunningham number at 165. Should we consider IVIG for one or both of them?

 

Would appreciate some advice.

 

P

[nevergiveup]

My dd when she was young had hyper loopy behavior before every illness (fever) came on. She later developed pandas. She also has cvid and probably SAD. I say probably becuz we would not vaccinate her with the pnuemoccocal vaccine to validate the diagnosis but she failed the titers test terrible first pass. If your child has CVID then I would treat. This may stop that strange behavior with illness. I know monthly ivig's help my kids overall well being and health. They have definately eliminated the hyper loopy behavior and OCD.

[momto2pandas]

One of my sons had only one real OCD episode, and that's when he was diagnosed. Since then and before then, no OCD, but minor tics and as you said, extremely loopy, unstable, hypersensitive (both sensory and emotional), irritable, and sometimes depressed, when in an episode.

 

My other ds is really OCD.

 

I, also, only had OCD symptoms during one phase as a child. The rest of the time it was just like my first ds, except that I also had anorexia, and so far he doesn't.

 

On the other hand, my father had OCD episodes way into adulthood when sick, in addition to all of that other behavioral stuff. It always drove my mother bats that my father and I would "get sick" at the same time all the time and turn the household upside down.

 

So, I don't know if they are just different manifestations of the same exact thing, or if they are related but not the same. In any case, all of the above have other autoimmune issues too, and suspected immunodeficiencies (waiting for a LOT of lab tests right now.)

 

 

 

Both my children have behavioral changes following illness, which to me represents some kind of neuro-inflammatory immune issue, but they do not display much in the way of typical PANDAS issues (tics, OCD, or anxiety). Instead, both my kids become hyper, loopy, sensory seeking, and emotionally unstable/ridged.

 

When I look at the typical presentation of PANDAS, I feel like my kids don't quite fit, yet they definitely have something going on. Also, my daughter's Cunningham results were above the mean in the PANDAS range. We tried Azith for both kids, but because they both have yeast issues, we saw both kids become worse while they were on it.

 

Also, my son has other abnormal immune system lab results, like low IgG, low IgA and failure to mount antibody responses to pneumo strep and candida. His Cunningham results, however, were close to normal, and he's the one with more severe behavior issues.

 

Does this sound like PANDAS, or something else? Since antibiotics didn't work, what should we do to help them? I'm terrified that my daughter is a walking time bomb with her Cunningham number at 165. Should we consider IVIG for one or both of them?

 

Would appreciate some advice.

 

P

[KeithandElizabeth]

Hello:

 

My son is getting monthly IVIG and is really improving all the way around. Even his shirt sucking habit is going away. He is on prophylactic antibiotics, but we see a nutritionist who gives him 300 billion units of probiotics a day to overcompensate for the loss of the good bacteria from the antibiotics.

 

I am surprised that your doctor is not recommending IVIG simply based on the low IGG levels.

 

My "non-PANDAS" daughter had a very high CAM Kinase and we are giving her IGG supplements and the high dose probiotics as well.

 

I know how stressful it is to figure the whole treatment plan out, especially if your child is not very severe PANDAS wise.

 

Elizabeth

[MomWithOCDSon]

My son, too, was more emotional basket-case than your standard OCD or ticking kid when he was first diagnosed with OCD, which we now believe to be PANDAS. He was constantly melting down, and then on the heels of that, he would be inexplicably joyful, almost giddy. It would make you even consider bi-polar at times. We didn't recognize it as OCD/PANDAS until some contamination behaviors finally kicked in. But the inability to make decisions, touchiness, etc. . . . that's ALWAYS been there.

 

What we've come to realize is that his meltdowns were usually associated with our unknowingly sort of "bursting his OCD bubble," interrupting a ritual that we didn't realize he was even engaging in, expecting him to make a simple decision that, as it turns out, wasn't simple at all for him at the time (like deciding which shirt to wear).

 

Meanwhile, on the hyper side, it would blow us away when he would be all motor-mouthed, pacing and talking endlessly, sometimes less than 5 minutes after he'd had a major tearful meltdown over something else! It seemed like he was all over the place, no rhyme or reason. But I think that's what OCD/PANDAS does; it's not really coming from the rational, "thinking" part of the brain, so once the episode, ritual, meltdown is over, it's over! No residual regret or hang-up or anything. To this day, he has trouble understanding why it takes his dad and me so much longer to process and "get over" one of his meltdowns, 'cause he's over it the second he's over it!

[MichaelTampa]

peagreen,

 

I see your concern. I don't have any information on my own that can help you, but hoping you consider a very experienced PANDAS doctor familiar with immunology, if you don't get the information you need here.

 

One thing you said concerned me, though, regarding my case. I am just about to gear up to get treatment for myself, and I am pretty sure I have serious yeast issues. Do you know why azith would cause a problem for someone with yeast issues? Is it just azith, or most/all antibiotics?

 

Michael

[peglem]

Most all antibiotics cause yeast issues because it kills bacteria in the intestines, which destroys the natural flora (ecosystem)-the bacteria in the intestines compete with yeast for food. When the bacteria are gone, the yeast proliferate.

[MomWithOCDSon]

Most all antibiotics cause yeast issues because it kills bacteria in the intestines, which destroys the natural flora (ecosystem)-the bacteria in the intestines compete with yeast for food. When the bacteria are gone, the yeast proliferate.

 

But our pediatrician suggested that we actually give our son a yeast-based probiotic (Flora-Stor) to help his gut during the antibiotic treatment; she said that the antibiotic will kill off other beneficial gut bacteria like acidolpholus.

 

So, what probiotic would folks here recommend for a long-term abx cohort? I'm assuming some people are more sensitive to yeast than are others? Our son seems a bit more itchy than usual, but a topical seems to help that.

[peglem]

Yes, there are "good yeast" that compete with the bad yeast (usually candida). We use S. Boulardii (a good yeast). But, also use bacterial probiotics and yogurt, as well as prescription antifungals. The timing is important. The probiotics/yogurt need to be given long enough after antibiotics that they aren't killed by them (2-3 hours?) And the boulardii needs to be given a few or several hours after antifungals, so its not killed by them. Its a real balancing act.