Any perspective appreciated

[MamaV]

Hello,

Writing about my six year old son. We are trying to rule PANDAS/PANS in or out. Any thoughts from experienced families appreciated.

 

I recall a day or two of a blinking tic when my son was maybe two, perhaps a bit of throat clearing too, but nothing very intense, he has tended to be a bit phlegmy. Otherwise a very happy, healthy and typical kid! On Dec 01/2013 (at age 4) he was suddenly different! He had sensory issues, anxiety, tics, mood changes, un-focussed energy and started twitching and jerking in his sleep. Yet somehow he was still mostly functional and continued at day care etc. He had an EEG and a sleep study. Both normal. Only discovered low ferritin. No one suggested PANDAS. He would always appear just fine in the doctor's office. After about 4-5 months everything pretty much disappeared, except the sleep twitching persisted at a low level. He was great for 1.5 years, though chewed and picked at his fingernails and a bit fidgety, but otherwise his lovely happy self. Then in October of last year (2015) the school started to notice some anxiety in him. And suddenly on Nov 01/15 he had a lot of OCD symptoms, along with a bunch of the stuff we saw two years prior (sensory stuff, rage, separation anxiety, general anxiety, short term memory issues, etc - but no tics). Things improved somewhat in December (and we had 3 sessions of CBT), then he got a cold in January and his intense sniffing tic of two years ago was back. We had a naturopathic doctor who agreed likely PANDAS or PANS, though blood tests in late December showed no strep or mycoplasma. We started antibiotics in mid January, and saw a flare in symptoms that lasted a little over two weeks. He has been doing ok since, but not great. The tic is much reduced, but he has occasional weird OCD symptoms, still twitching a lot in his sleep, and currently thinks he doesn't get enough air when he breathes (though his breathing is in fact fine) and I hear a fair bit of exaggerated breathing. He is managing it and still functional, but I can tell it's hard for him. It's awful to see my six year old dealing with this. I'm sure many of you can relate.

 

I have appointments with a specialist this week, who may be able to give us more support in terms of diagnosis, meanwhile I torture myself wondering if this is indeed PANS or PANDAS, or am I looking at some kind of 'garden variety' (though early onset and complicated?) OCD/tic combo with few treatment options and a poor prognosis? I should mention I have an autoimmune disorder. We have no TS or OCD in the family.

 

Does this sound as much like PANS or PANDAS as I think it does, despite the negative strep and mycoplasma tests?

 

I am feeling discouraged that we haven't seen bigger improvement after 5 weeks of abx, especially since his case might have been considered 'mild' (as he was still fairly functional even at peak of both flares). Is it possible that the abx just need more time to work?

 

Just trying to get as much info as I can, from doctors and other families. Thanks for any feedback.

[putting together the piece]

Check for Lyme and its co-infection Babsesia. Ingenex lab is best. Provocation very helpful before hand.

[sf_mom]

I agree. You need to check your son for Lyme and TBI co-infections like Babesia and Bartonella. The difficulty breathing he expresses to you could be a real symptom called 'air hunger' and is associated with Babesia. Babesia is an inner red blood cell parasite and is treated with anti-malarials, not your typical antibiotics.

 

I've attached a symptom list for both Babesia and Bartonella. Both infections can trigger OCD behavior. However, Bartonella is more typically associated with rage behavior and anxiety while Babesia is associated with depression. Our children presented with only a few physical symptoms at any given time. Some children only have neuropsychiatric symptoms and no physical symptoms at all.

 

I am attaching a link that has great description of 'air hunger'.

 

http://suzycohen.com/articles/lyme_babesia_treatment/

 

Babesiosis

• • Chills
  • Fatigue and often excessive sleepiness
  • Night sweats often drenching and profuse
  • Severe muscle pains, especially the large muscles of the legs (quadriceps, hamstrings, buttocks, etc)
  • Neurological symptoms often described as "dizzy, tipsy, and spiciness," similar to a sensation of floating or of walking off the top of a mountain onto a cloud
  • Depression
  • Episodes of breathlessness, "air hunger" and/or cough
  • Decreased appetite and/or nausea, perhaps vomiting
  • Spleen and/or liver enlargement
  • Laboratory abnormalities that may include low white blood cell count, low platelet counts, mild elevation of liver enzymes, and elevated "sed rate"
  • Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)
  • Less common symptoms are joint pain (more common with Lyme and Bartonella), anxiety and/or panic attacks (more common with Bartonella), lymph gland swelling (more common with Bartonella and Lyme), non-specific "sick feeling" (also encountered with Bartonella and Lyme)
  • Dark urine
  • Enlarged lymph nodes
  • Significant memory changes
  • Struggle organizing
  • Profound psychiatric illnesses
  • Significant fatigue, daytime sleep urgency despite nighttime sleep
  • Waves of generalized itching
  • Balance problems with dizziness
  • Severe chest wall pains
  • Random stabbing pains
  • Weight loss
  • Sensitivity to light
  • Sleep in excess of 8 ½ hours per night
  • Sore throat with unproductive cough

Bartonellosis

• Fatigue (often with agitation, unlike Lyme disease which is more associated with exhaustion)
• Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"
• Headaches, especially frontal (often confused with sinus) or top of head
• Eye symptoms are common and include blurred-vision episodes, red eyes, dry eyes, depth perception problems, retinal problems, and light sensitivity
• Ringling in the ears and sometimes hearing problems (decreased or even increased sensitivity known as hyperacusis)
• Sore throats that are recurring
• Swollen glands, especially neck and under arms
• Anxiety, panic, or worry attacks; others perceive as "very anxious"
• Agitation, irritability, rage, impulsivity, or aggression
• Episodes of confusion and disorientation that are usually transient (and very scary), often can be seizure-like in nature
• Poor sleep (especially difficulty falling asleep), poor quality sleep
• Joint pain and stiffness (often symmetrical, as opposed to Lyme which is often unsymmetrical and often migratory)
• Muscle pains, especially in the calves; may be twitching and cramping also
• Foot pain in the morning involving the heels or soles of the feet (sometimes diagnosed as plantar fasciitis)
• Nerve irritation symptoms that can be described as burning, vibrating, numb, shooting, tingling, and so forth
• Tremors and/or muscle twitching
• Heart palpitations and strange chest pains
• Episodes of breathlessness
• Strange rashes recurring on the body, red stretch marks, peculiar tender lumps and nodules along the sides of legs or arms, and spider veins
• Gut symptoms, especially acid reflux
• Shin bone pain and tenderness
• Fainting
• Bladder pain, irritation, infections
• Genital disorders
• Obesity and body swelling

The list of Borreliosis, Bartonellosis, and Babesiosis symptoms were borrowed from Joseph Burrascano, M.D. (Checklist for Lyme Disease 2008), Kenneth Singleton, M.D., M.P.H. (The Lyme Disease Solution 2008), and James Schaller, M.D. (Bartonella: Diagnosis and Treatment 2008 and The Diagnosis and Treatment of Babesia 2006)

Edited February 23, 2016 by sf_mom

[MamaV]

Thanks - I actually got myself tested for lyme last year (by igenix) and results were negative. I guess I should pursue this for my son too. Ugh, I wish it were all more straightforward. I wish there was better guidance and help. Exhausted...

[mama2alex]

The air hunger is a BIG red flag for Babesia, which is a coinfection of Lyme. Your best bet right now is to find a Lyme-literate doctor and work with them on testing and treatment options. Doing a full Igenex panel is great, but those tests depend on an immune system response, so they're not always accurate - especially when the person's immune system is worn down. A Lyme-literate doctor will be able to do a more nuanced evaluation and use other tests, if necessary, to figure out what the infections

are and what treatments are needed.

 

Hang in there - you will find your way!

[valsmom]

As far as Strep goes , my both kids had negative bloodwork but positive swabs with no symptoms of strep. There are some kids like this . So maybe your son was positive for strep at some point , you could have missed it . But sounds like Pans to me. Did you watch any youtube videos of Dr Triffileti ? He talks about this titters , and how some kids don't show positive strep on bloodwork.

Edited March 3, 2016 by valsmom

[Wombat140]

Coiuld he have Babesia without Lyme disease? (Would that give a negative Igenex test, or does it test Babesia as well?) I'm interested myself because I have what looks like a Babesia rash (petechiae in small patches), albeit very minor. Never had any LD/coinifection testing done though. I don't have any of the classic physical LD symptoms, but then I don't think I have the Babesia ditto either.

[SSS]

So you've just tried 1 antibiotic? Because your 6 yr. old seems to 'fall off a cliff' into flares, it absolutely sounds like PANDAS/PANS w/ the symptoms that match.

I like the book and recommend

'Childhood Interuppted' by Beth Maloney

He is suffering, to bring relief, typically full dose Augmentin or Azithromycin/ Biaxin are tried-

And if you start treatment, diet, probiotics, detox.

Hope you can get to a good provider/ get a move on to quell this for him---