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Hi, I just signed up. I need help. My son is 15 and has regressive autism. He had strep throat when he was six and developed OCD, more meltdowns, anxiety; I didn't know about PANDAS at the time, so no treatment besides initial antibiotics. Things have been up and down over the years, but he mostly was improving. However, last year he got sick with what I thought was a cold, and everything got worse again. He's having rage/violence problems, dilated pupils that come and go depending on his mood, even more sensitive hearing, cognitive regression, wetting the bed, flat affect, puffy face, mood swings, talks about older brothers he doesn't actually have. He's not himself. He's had some tests, ASO, and thyroid, but nothing conclusive, except for yeast, which we are treating. The dr ordered the wrong test, so mycoplasma wasn't done, and the lab cancelled the anti-Dnase B because they said another test covered that one. I didn't understand that. Anyway, he seems to have PANDAS symptoms, except he eats all the time! He's always hungry now, which is why a thyroid panel was done. I just need to know what's going on with my kid. Everyday he says "make me feel better.' I can'tm and it sucks. We've seen a bunch of drs and I don't know what to do. I want to get the mycoplasma and dnase tests done. What else? ASO was 100. I don't know what it should be when his last known infection was a decade ago. None of the drs I've seen seem to know anything about this! Hoping someone here can help. The violence is keeping me up at night. He's already injured people when he's in a rage. I have a 2 year old, too. I seriously feel like I'm going to have a heart attack. No-one is helping. :(

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Laurac --

 

As your DS has autism, do you have access to a DAN! doctor? Some of them are familiar with PANDAS/PANs and know how to treat. Otherwise, you might want to consult the list of doctors others here have found to be helpful across the country and see if there's someone in your area you can readily get to. Notwithstanding that, many families have traveled significant distances to see the few specialists in the area of PANDAS/PANs, but I know that's not always feasible.

 

The cold which preceded your DS's most recent decline sounds to me like it might be a myco p incitement of the PANDAS/PANs, so getting those test results might be indicative. Did you get a full immune panel (IgA, IgG, etc.)? I think -- but I'm not sure and someone else here may be able to tell you more accurately -- that an IgG number out of range can be indicative of a myco p infection.

 

http://latitudes.org/forums/index.php?showtopic=5023

 

Our first doctor that we convinced to order the blood tests for us also threw out the anti-d-nase b test, saying it was redundant with the ASO -- which, of course, it isn't. That said, I don't believe that an ASO of only 100 would be out of range, but the lab's "normal" range should appear somewhere on the test results.

 

Have any of his general medications (if he takes any) changed recently? There are a number of them that can drive appetite, though you would think that the doctor(s) would have notified you of that. It's also possible, isn't it, that his appetite is tied to an anxiety behavior, just as some "normal" folks stress eat? Something from which he derives more pleasure than anxiety?

 

Hopefully some others will chime in, but you're likely to get a suggestion to test for Lyme and co-infections, especially if you live in an area, or your DS participates in activities that would make him prone to tick bites. You might also see if you can get the Cunningham test, a diagnostic panel specific to PANDAs designed by Dr. Madeline Cunningham. Unfortunately, I'm not certain how you go about order the test packet, and I don't think most standard labs have it yet, but someone else here can likely help you with that, or you could try Googling that.

 

Hang in there!

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Sounds to me like he has PANDAS or PANS. Im also 15. I too flare with just a cold, which sucks. I can relate to his wanting you to make him better. I'm sure you wish you could!

I would suggest seeing a specialist. They can order mycoplasma titers for you. Other than that, all I can say is hang in there, and I sincerely hope he gets better soon.

Edited by Eliself
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My 11 year old has many of these same symptoms. He tested positive for mycoplasma. His PANDAS doctor switched his prophylactic antibiotic to address it.

 

Here is further info about my son's journey for relief. By no means, do I recommend the same for your son. However, it may give you more information in solving the puzzle.

 

*******

 

He was also diagnosed with OCD, General Anxiety Disorder, Social Phobia (school anxiety) outside of PANDAS. In other words, antibiotics weren't the only solution for him.

 

During his worst flare last year where he was hearing voices and had already tried multiple antibiotics, steroid bursts, ibuprofen bursts, the only thing that helped was Abilify. Similar to seeing sudden (days) relief with PANDAS symptoms when prescribed an antibiotic, the Abilify seemed to work with him. He was also prescribed Zoloft because having his symptoms long-terms had created a depression he was unable to get himself out of.

 

For a long time, I refused to give him SSRIs, antipsychotics, and benzodiazepines. I spent a year during this severe flare seeing doctor after doctor, trying to get an order for IVIG because that was my last resort. He got worse and worse. I saw several child psychiatrists, both experienced with treating PANDAS kids and not. The ones with the experience were full. They would do an evaluation but had so many PANDAS kids they couldn't see anymore.The psychiatrists with no PANDAS experience were pointless. They didn't believe in it and tried to put him in a box. PANDAS kids are difficult to treat. They are a complex puzzle and if a doctor doesn't believe that, it's pointless to see them.

 

When I found a PANDAS psychiatrist to take my son as a patient, he was at such a state that I was convinced to try these medications. They didn't alleviate all of his PANDAS-like symptoms but helped so much. His depression improved, he stopped hearing voices, and his rages were fewer and less intense. There were some days that he was happy.

 

A couple of months later I also took him to a PANDAS specialist in Florida who agreed with the course of treatment, but changed the antibiotic and added supplements. He also did an intensive CBT therapy. All of these things helped.

 

He still has flares. He is having one now (wetting the bed, dilated pupils, intense anxiety, anti-social behavior, school issues, etc). But, these medications actually help us to determine if he is having a PANDAS flare and needs to be tested. We are trying an ibuprofen burst as a first course of treatment before doing lab work and adding another antibiotic.

 

I do recommend that you find experienced PANDAS doctors. In addition to my son's PANDAS doctor who we see every 4 months, he sees a PANDAS-experienced neurologist when needed (sleep issues), a PANDAS-experienced pediatrician, a PANDAS-experienced psychiatrist, and a PANDAS-experienced psychologist for weekly CBT and Behavior Therapy.

 

All of these doctors told me the same thing. Regardless of a PANDAS diagnosis, the treatment approach is the same. Test results are not definitive because inflammation changes. All of the tests I insisted on helped, but were not the key decision makers for his doctors on treating him. His symptoms were.

 

******

 

I don't have any direct advice to give you. I can only tell you how we approached my son's last severe flare to give you more information. This forum was so important in helping me understand and help my doctors understand how to treat my son.

 

 

The right doctors are key to helping your son. All of the tests I insisted on helped, but were not the key decision makers for his doctors on treating him. His symptoms were.

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Thank you all so much for your help! My son saw a DAN dr almost a decade ago. We actually stopped going there after his strep infection because of the regression; the long car ride was too much. Anyway, I left a message for that dr on Friday. He's listed as the only PANDAS specialist in VT, I think. Hopefully he can help. The Cunningham panel can't be ordered in NYS, so maybe he can help with that, too. I'll look up my son's lab-work regarding the full immune panel -- I'm not sure what was done. ASO was in normal range. No med change. I didn't know if maybe a small percentage of kids with PANDAS overeat instead of having anorexia or limiting their food. But the stress eating could make sense, especially since I do the same thing. I'd like to ask his current dr for the mycoplasma test, so we don't have to wait any longer. Is it IgM and IgG? He is on Abilify, but he's gained a significant amount of weight, so it may not be helping so much. Thank you all again.

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That's interesting. And yeast itself could cause a flare, right?

There have been a couple of days where it seems that nothing is wrong, but then one little thing can happen that causes a bit of stress and my son spirals. Is this something anyone else experiences? I've never met anyone with PANDAS. I've only read and seen a few clips of video from the news. Are the dilated pupils and other symptoms a constant or intermittent?

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  • 1 month later...

Dopamine is the neurotransmitter that gets released when we eat (or participate in anything that gives a sense of pleasure) and provides a sense of well-being. Overeating, especially when your son says he doesn't feel well & wants you to help him feel better, can simply be that he's using the dopamine surge that comes from eating to "self medicate" or feel better temporarily.

 

Unfortunately, self-medicating that way leads to further metabolic imbalances and can burn out dopamine receptors (similar to what happens with insulin in Type II diabetes), so it's important to make sure that he's not going overboard.

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  • 2 weeks later...
  • 2 weeks later...

I got PANDAS at 14. I am now mid life. I also had eating troubles, both over and then under.

 

I used a lot of natural thiungs like Olive Leaf. Olive Leaf helped me so much, but I cannot take it now because I am sensitized. I also took grapefruit seed and that helps a lot. Oregeno oil, too.

 

I could not afford a Dr so I had to do it natural. My blood work was bad before I started with low counts but it is much better now. I also work out a lot. I had hyper so I walked everywhere.

 

It can get better. It is hard, but the hardest is not knowing. My family was bad off because Dr said they were just bad parents nad I was crazy. This was the 80's of course.

 

I can answer any questions. I hope your child is doing better!!

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