Pandas with joint pain, tantrums, neuro issues but no OCD?

[Megan]

My 6 year old daughter has such severe joint pain that she cannot walk some days. She also has severe tantrums every night and neuro issues (blurred vision, hearing and skin sensitivity). She has a constant sore throat and headache and often has to spit mucous in the sink because I suspect there is an infection deep in her throat, even when on zithromax or keflex. Doctors say her throat looks fine. She has not been to school in a month.

 

Has anyone had a similar presentation? We are waiting to get into see a PANDAS expert.

 

Thanks for any input.

 

Megan

[Dedee]

Megan,

 

My opinion from reading this post and your other post is that your daughter most likely has another infection other than strep that is causing her symptoms. When my daughter first triggered she had many of the same symptoms. Her fatigue was huge. She had many physical complaints and I did not notice the OCD because of the defiance and tantrums. However, the tantrums are usually a sign of underlying OCD. Anyway, my guess is that your daughter will test positive for Mycoplasma p. at a minimum. From the physical complaints she should also be tested for lyme. See if you can get a prescription for Biaxin. That was the only thing that made a difference for daughter in the beginning. OCD in children is a funny thing. It presents very differntly. If you have a child with tantrums, I bet you have OCD. JMHO.

 

Dedee

[Kathy4Him]

Megan, I would get an appt with a pediatric rheumatologist. When my son was 9 he had joint and muscle pain and distinctive rash. Our Dr. sent us to ped. Rheum. who diagnosed him with autoimmune disease JDMS. Interestingly enough, in 3 mths symtoms went away BUT now he has PANS/ PANDAS.

 

With joint pains, I always think rheumatologist is the way to go.

[mdmom]

You may want to post your question over on the Lyme forum. It sounds like your daughter would benefit from an evaluation by a LLMD (Lyme-literate Medical Dr). Not suggesting she has Lyme, but these types of docs are very good at diagnosing underlying infections. Many on this forum deal with Lyme or co-infections of Lyme + PANDAS/PANS.

[Megan]

Thanks mdmom, yes, we are well versed in lyme and she has had many reinfections. She is on lyme treatment and we don't think her current symptoms are related to lyme. Her ANA is elevated and I wonder if she has EBV. We are awaiting more blood work which hopefully will show something.

 

KathyN - how did the Rheumatologist diagnose your son? Was there a blood test or was it based on symptoms? That's wonderful the joint pain went away.

 

Dedee - thanks for your thoughts - did you ever try zithromax for your daughter and found it didn't work but the biaxin did?

[kos_mom]

Dr. L has told us spitting is a big Pandas symptom--not sure why but DD really had it and complained constantly about having excess saliva. DD also had severe knee and leg pain and sometimes could only walk with very cramped pigeon-toed steps. Both seemed to have improved notably since IVIG. She had both strep and mycoplasma, as well as past infections of EBV. Was not positive for lyme or other tick-borne diseases on tests Dr. T ran.

[LNN]

Lyme was my immediate thought as well. Curious about which symptoms you don't feel are related to lyme - the ones you list are all common among the lyme community. Is your doctor following IDSA guidelines or ILADS guidelines for the lyme? If not ILADS, you may want to look for a doctor who does. There is a wide gap between the protocols each group recommends.

 

I hope you find relief soon.

[Megan]

THanks LLM. I know that these symptoms could be lyme symptoms, however, she did have her typical lyme symmptoms this summer when she was reinfected. She is on the Dr. Klinghardt lyme cocktail which is very effective for lyme and I have seen "her" typical lyme/coinfection symptoms disappear over the past few months. She is cheerful during the day and does not have a herx reaction after taking her lyme cocktail like she did two months ago.

 

I have been researching lyme for years since my entire family became sick. Have been to many of the top LLMD's and our best progress was through natural treatments after doing 2 years of abx through Dr. J in CT. The abx worked for the first year and then stopped working and my children plataued but were not healed. Then I discovered natural therapies and actually healed my children on those until they became reinfected with lyme many times this year as well as parasites from our well water going bad and then passing strep back and forth and everything has gone down hill.

 

We use electrodermal screening from one practitioner and muscle testing from another to see which infections are present. That is another reason why I feel these symptoms are not from lyme. Our EDS practitioner feels that EBV and mycoplasma are causing a lot of her symptoms right now. We also go to a more mainstream doc to get blood testing done.

 

Thanks for your help.

 

Megan

[Dedee]

Megan,

 

To answer your question about the Zith, yes we did use zith and got results for several days, maybe even a week but the results were minimal and didn't last. Once we started the Biaxin things started to turn around. My daughters myco titers were exteremely high. Best of luck.

 

Dedee

[LNN]

Ok - so you're clearly all over the lyme stuff. So on to EBV - when my (non-lyme) child had EBV, it lingered for months until we tried l-lysine. Within days, we saw significant improvement. Google "l-lysine + EBV" - several research studies on it. Good stuff.

[MomWithOCDSon]

Megan --

 

Like several other folks here, my first thought on reading your initial post was "sounds like lyme." And then I read through the entire thread, saw all the responses and yours in turn . . . wow, you guys have been through the wringer! So sorry!

 

In the end, isn't it likely that your DD is suffering from the overall immune onslaught . . . lyme, strep, EBV, etc.?! So, at this point, would the most effective treatment be to address the immune system itself through something like PEX? I seem to recall that IVIG and Lyme are not always a good mix, though certainly there are others here who could more knowledgably address that.

 

I just want to echo DeeDee's thoughts, though, with regard to the OCD. We didn't recognize it in our young child (DS) originally, either, because it wasn't taking a "classic" form, so we attributed his outbursts to him being "sensitive," etc. In the end, we discovered we were unknowingly interrupting some rituals he'd developed, and that's when he would get angry or frustrated and act out. At that age (before 6, which was when he was officially diagnosed when the first "classic" symptom appeared . . . handwashing), 4 or 5, he didn't have the vocabulary or self-awareness to explain to us why he was angry or that he was ritualizing, but in hindsight, it's all become clear.

 

Hope you find answers soon, but you sound like the tenacious type, so I'm betting you will. Hang in there!

[nicklemama]

In my experience, tantrums/raging = OCD interrupted or unable to complete. I did not think my DS had OCD either. It wasn't classic handwashing or checking or other similar things we all know are ocd. When I read the book Freeing Your Child From Obssesive Compulsive Disorder by Tamar Chansky, I recognized all kinds of ocd in my son.

[Kathy4Him]

Thanks mdmom, yes, we are well versed in lyme and she has had many reinfections. She is on lyme treatment and we don't think her current symptoms are related to lyme. Her ANA is elevated and I wonder if she has EBV. We are awaiting more blood work which hopefully will show something.

 

KathyN - how did the Rheumatologist diagnose your son? Was there a blood test or was it based on symptoms? That's wonderful the joint pain went away.

 

Dedee - thanks for your thoughts - did you ever try zithromax for your daughter and found it didn't work but the biaxin did?

 

 

 

 

Megan, 3 seperate rheumatolists at 3 locations did bloodwork. ANA titer was high, Anti RNP strong positive, as well as physical symptoms. Yes it was wonderful and we thought we were done with autoimmune diseases. oh well...not so true. but he did get 10 years of good health before this PANS/PANDAS attack.

Edited December 8, 2012 by Kathy N

[Megan]

LLM- thanks for the lysine tip....she has been taking it for a month and actually her ANA was normal this past week which, according to our practitioner, is a sign that the EBV is going down. It's nice to have the confirmation from you that it helped.

 

Thanks all for the info about the tantrums....I was actually wondering if it was some sort of ritual because it normally happens in the evening as we try to get her up to bed. At around 7 pm, we try to head it off by letting her watch a movie on the DVD player in her bed. We thought we had done so last night be she wasn't tired enough when it ended and she came back downstairs and started to run around acting like she was a horse and grabbing her brothers stuffed animals and harassing him. I had to physically carry her upstairs to her room screaming, which woke up her other brother, because she was messing up the house. When I carry her she claims I am hurting her because her skin is so sensitive from the neuro issues. Once the tantrum ends, she has to spit a lot of mucous. I feel so sad right now because her stomach is hurting too so I feel helpless...I feel the abx are too hard on her stomach.

 

Thanks,

 

Megan