Mycoplasma PANS

[Sternjs]

Does anyone have experience with PANS caused strictly by a mycoplasma infection? Our previously confident, athletic, outgoing 11 yr old daughter is now more like a shy, emotionally volatile 5 year old. We first saw this change when she went to a short, 5 night sleep-away camp in July of this year. Without any hint that there would be a problem we received many desperate calls from the camp staff and were forced to come get her after 3 nights. Looking back she had missed a week of school back in late April with a cough that was so severe she literally couldn't go 10 seconds without coughing. Strep culture was negative so we never received a satisfactory diagnosis at the time. Needless to say but we did not see any connection at that time. Chalking it up to a bad case of home sickness my wife and I thought little more about it until several weeks later when she was set to end the summer with several short soccer and dance day camps. Even though she had attended these in past years and had great experiences she cried for hours, even while at camp. Her separation anxiety became even more pronounced when middle school began. Despite trying everything from dragging her to school, staying in the office while she attempted to attend class, shortening her day...nothing worked. Rather than taking the school social workers advise and seeking psychiatric help we took her to the pediatrician for a physical evaluation and blood work. He kindly called us on a Sunday, said she was physically fine, gave his diagnosis of "school phobia" and concurred that it was time to seek therapy as she had by then missed 2 weeks of school. At this point the school guidance counselor mentioned the word PANDAS to us for the first time. Curiosity piqued, and KNOWING this behavior was just not my kid I asked for a copy of the blood test results (I always do this now) which showed a high ELISA Lyme test. Armed with this we went to a Lyme Literate pediatrician who said it was very suspicious and performed a load of other blood work which revealed a high mycoplasma titre (IgM of 1632 and IgG of 817) though now a negative Lyme ELISA and negative Western Blot. It was at this point, in early October that the new pediatrician said she thought this was PANS. After a month of Zithromax IgM has dropped to 1317 and IgG to 762 both of which are still high. Her separation anxiety is now so severe she can't even attend soccer practice let alone school. Even home tutoring has been difficult with huge mood swings and such emotional sensitivity that the slightest, most gentle critique is met with running to her room and up to an hour of crying. We are now near Thanksgiving break with no sign that she will be able to attend school anytime soon. Outside of what I would describe as some deep, quick blinking when upset there are no tics nor are there any obvious OCD behaviors unless what we are witnessing is an expression of OCD. In addition to the antibiotic she is taking fish oil, reishi, glutathione, vitamin D, and probiotics. We also tried 500 mg of ibuprofen for 10 days without result. If anyone has words of wisdom, treatment ideas, has experience with a timeline to healing we would greatly appreciate hearing from you.

[Chemar]

Just bumping up this new member post for others to see and respond.

[Sonshine]

We are also dealing with Myco. DS has very high IGG and IGM after 4 months of Clarithromycin. Something other than Azith may be required for your D. With possible Lyme, a combination of abx may be required. DS has a positive Lyme culture from Advanced Lab. You might check into this test due to your conflicting Lyme results. If positive, you will have grounds for more aggressive treatment.

 

Interestingly, I had Myco P at the same time as my son. My IGG/IGM returned to normal with no abx treatment. His does not. Some here have had to treat Myco for quite some time. DS also had high streptozyme and ASO even with negative strep culture. He is getting strep infections somewhere other than his throat. He had onset of PANDAS with impetigo (strep infected skin) He has had constant ear/sinus infections since birth and doctors are suspicious that some of those were strep. Yes, it is possible to have PANS with Myco as only trigger, but it is also possible your D has had undiagnosed strep at some point.

 

Regarding separation anxiety, my DS has also had this to an extreme. OCD can take many forms and in children it can look like separation anxeity, extreme bedtime difficulties etc.

 

Do you have a specialist nearby. There is a thread here listing specialists and some of the members here can direct you.

Edited November 23, 2014 by Sonshine

[Broo100]

Absolutely yes. I am certain that myco was the big trigger for my son (even if he also had strep at the time too). It was only after the myco was gone (2 years later) that his good mood returned. It was hard for me to assess if he was in an adolescence moody state or if it was pandas. After the myco was finally gone he was so much calmer and positive. It was very gradual.

[Hopeny]

We have had similar experiences dealing with Lyme and mycoplasma. It's hard to peel the onion and figure out what causes what. We've had good results treating with Doxycycline

[dasu]

I'm impressed you are doing reishi, it sounds like you have done some research.

 

We missed OCD symptoms in my son as I thought OCD was primarily constrained to symptoms like repetitive behaviors and fears over contamination. This web page broadens that a lot, so you might want to check that out: http://pandasnetwork.org/yourstory/your-experiences/ocd/

[Missmom]

My son has strep induced pandas, but just wanted to let you know he got his first major flair in sixth grade he was almost 12. It started when he woke up one morning and had a head nod tic that started overnight and he could not stop. He is now 14 1/2 and doing much better but he still has mild flairs. He is on abx and I feel that that has helped keep this from getting really bad. It has been 2 1/2 years for us and it is still not over. Hoping it will subside soon.

[Sternjs]

Thanks for all the comments and suggestions. Our biggest issue right now is simply dealing with school and tutoring. My wife and I are both teachers so we certainly get the importance of academics but her school refusal is so severe there is just no way of getting her to go. At this point it looks like she could lose an entire year...as she was one of the youngest in her grade maybe that would be for the best. Has anyone had such extreme school issues?

Edited November 24, 2014 by Sternjs

[HopeinHIM]

Does anyone have experience with PANS caused strictly by a mycoplasma infection? Our previously confident, athletic, outgoing 11 yr old daughter is now more like a shy, emotionally volatile 5 year old. We first saw this change when she went to a short, 5 night sleep-away camp in July of this year. Without any hint that there would be a problem we received many desperate calls from the camp staff and were forced to come get her after 3 nights. Looking back she had missed a week of school back in late April with a cough that was so severe she literally couldn't go 10 seconds without coughing. Strep culture was negative so we never received a satisfactory diagnosis at the time. Needless to say but we did not see any connection at that time. Chalking it up to a bad case of home sickness my wife and I thought little more about it until several weeks later when she was set to end the summer with several short soccer and dance day camps. Even though she had attended these in past years and had great experiences she cried for hours, even while at camp. Her separation anxiety became even more pronounced when middle school began. Despite trying everything from dragging her to school, staying in the office while she attempted to attend class, shortening her day...nothing worked. Rather than taking the school social workers advise and seeking psychiatric help we took her to the pediatrician for a physical evaluation and blood work. He kindly called us on a Sunday, said she was physically fine, gave his diagnosis of "school phobia" and concurred that it was time to seek therapy as she had by then missed 2 weeks of school. At this point the school guidance counselor mentioned the word PANDAS to us for the first time. Curiosity piqued, and KNOWING this behavior was just not my kid I asked for a copy of the blood test results (I always do this now) which showed a high ELISA Lyme test. Armed with this we went to a Lyme Literate pediatrician who said it was very suspicious and performed a load of other blood work which revealed a high mycoplasma titre (IgM of 1632 and IgG of 817) though now a negative Lyme ELISA and negative Western Blot. It was at this point, in early October that the new pediatrician said she thought this was PANS. After a month of Zithromax IgM has dropped to 1317 and IgG to 762 both of which are still high. Her separation anxiety is now so severe she can't even attend soccer practice let alone school. Even home tutoring has been difficult with huge mood swings and such emotional sensitivity that the slightest, most gentle critique is met with running to her room and up to an hour of crying. We are now near Thanksgiving break with no sign that she will be able to attend school anytime soon. Outside of what I would describe as some deep, quick blinking when upset there are no tics nor are there any obvious OCD behaviors unless what we are witnessing is an expression of OCD. In addition to the antibiotic she is taking fish oil, reishi, glutathione, vitamin D, and probiotics. We also tried 500 mg of ibuprofen for 10 days without result. If anyone has words of wisdom, treatment ideas, has experience with a timeline to healing we would greatly appreciate hearing from you.

Who is your doctor?? Our DS 10 sounds very similiar. Anti B worked in the beginning and then he just back slid. NO school as well.Since last March actually. He was a straight A student. I had a great tudor set up this year for him as part of his homeschooling protocol, but every time she comes he starts to stress and can't read or think. Yet he does do hours of video games. Most days he is home and if I get him dressed or showered its considered a great day now.UUUHHHGG!

OK so have you looked at perhaps that she may have alot of neuro-toxin build up due to the meds? how is the Mold around her? Check out her environment bc mold can cause much problems. My boy also reacts oddly to high glutithion. I know it is supposed to be a huge immunity booster but I think that some of these children don't have great detoxing abilities so I cut back alot on that suppliment for now. How much ProBiotic is she getting??? Yeast can be a n issue as well. I am not a doctor of course, but if u are not getting the results you need, I would keep searching even if it means new doctor.I am getting a third opinion as we speak.!!!! Hang in there I know this is horrible!

[BeeRae22]

My dd (just turned 9 this weekend) has myco p, and myco p is the only "confirmed trigger" we have to go on. (Her specialist suspects Bartonella also, but we haven't found it yet).

 

Nearly a year of abx, and past 5 months has been 3 intracellular abx- Zith, Mino & Bactrim and finally within range for IGM's (in the 600's now) but still high IGG at >5. I don't know how to interpret your numbers, as it's always been presented to me that IGM should be <770 and IGG should be < .90 but I'm sure there are different "measurement methods" for this,...

 

We just fund out through Spectracell testing that dd has quite severe antioxidant/toxin issues, and we're going to start working on those now. She also has 1 mutation of MTHFR, but we have to address toxins first before "messing with folate" again (we've tried this before, and it wasn't pretty!)

 

Dd started school refusal last year (LOVED school previously) but I pushed her through it and managed to get her there, late, but got her there... My little version of ERP I guess, it wasn't easy but I did it. However, separation anxiety wasn't really her bigger issue- she had some, but not as severe as many describe on this board.

 

I think myco is just really time consuming to eradicate. If her symptoms are that severe, I wouldn't expect a drastic change in a short period of time with meds, but if just Zith doesn't seem to bring improvements I would push to add another abx to her protocol. We didn't see any real progress until we added Minocycline, and she's been taking that,along with the others, since June. Zith wasn't enough in our case- doesnt sound like it is for your child either.

 

Just a quick comment re:ocd, because you mentioned "obvious ocd" --ocd manifests in many different forms. It twists and turns, and is particularly difficult to assess in children. It takes so many forms, even throughout the day sometimes. Have you talked with her about it at all?

 

Best wishes for you and your daughter <3 I feel your pain.... This is all so difficult and frustrating for everyone, good luck.

Edited November 25, 2014 by beerae22

[MaryAW]

My DD only tested positive for mycoplasma with her onset of PANS. That's why it is called PANS now, because many children are not triggered by strep. I was just at the CT conference a couple of weeks ago, and they pointed out that PANS is a clinical diagnosis. The blood work is done to support the diagnosis and also to treat the underlying infections.

 

It is curious that ibuprofen did not alleviate the symptoms. Perhaps trying a short term steroid might help?

 

The best help for my DD early on was CBT to cope with the OCD. I homeschool her; however, she loved school and did not want to leave. I pulled her out because her sleeping was so bad. She never slept, which made her vulnerable to every germ going around, which made the condition worse.

 

Our timeline is this:

11/11 onset of symptoms

5/12 finally understood it was PANS, started ibuprofen - BIG improvement in most symptoms except tics

6/12 convinced pediatrician to RX Azith - tics resolved in about 5-7 days

7/13 finally understood the significance of raising Vit D level to 50 -80 range - HUGE improvement

1/14 finally learned about Omega 3's - HUGE improvement

 

We had a period from Feb to mid-June with almost zero symptoms, then grass allergies, set her off. Flare was very mild compared to past flares. Flare in August from bad virus, again not too bad.