So tired and confused…need some guidance

[momofthree]

I apologize ahead of time for the long post. I have been a long time reader/researcher on this great forum, but this is my first post.It's so hard to be both the 3-ring circus leader and Sherlock Holmes at the same time, and I am feeling lost and worried- so I could use some of your guidance. I will try to give you brief history up to this point.

I had a very long road to discovery of PANDAS/PANS with DS8. Though he was a healthy and happy baby, at around 18mos he would have repetitive strep- he also seemed to speak less or lose speech. The big culminating episode that is forever etched in my memory was when he was 21/2 and i got call from daycare he was stumbling! Took him straight to dr., walked like a drunken sailor, and sure enough, strep again. Flying the next day on vacation I asked for shot of antibiotics. From the moment we got on plane,and for two days after, he was "out of his head", screaming, inconsolable, irritable, but with little words. I was about to take him to Standford ER when he passed out. The next day he seemed better, but from that point fw I feel he was and continued to forever change.

When trying to get tonsillectomy done, we didn't pass pre-certification at first, they couldn't figure out why his PT, PTTs and I think neutrophils were so off. Tested for leukemia, lymphoma, von wildebrands etc. I was worried that he'd have leukemia or hemophilia. Finally, they gave us the approval and said that sometimes repeated infections can cause Autonomic System Irregularities. Post surgery he was better for a time and then things started to fall apart.

Preschool teacher said just fall off the chair sometimes, really out of it and spacey sometimes, know things one day, and then not the next. I took him to Neurologist, who tested for Fragile X and some other rare syndromes, also ordered EEG. All tests were normal. He continued to catch every virus and bug.

Next couple years, he was extremely fatigued, falling asleep mid day, always sleeping so hard he'd wake up wet. He complained about his legs and arms hurting him occasionally. HIs eyes started to not track together and occasionally not focus on you. He started to walk on his toes. I took him to orthopedist. Still had trouble with cognitive processes, but progressing very slightly. Next year he started with eye blinking here and there and started to become "adhd" like. He became overly sensitive to even the slightest light, smells of things he used to eat all the time, now bothered him, and sounds too. I then noticed a hacking cough, but not all the time, and he would sweat up the bed like crazy. I thought maybe he had apnea or tonsils had come back? Did overnight sleep study that was all clear too. Though changes were physical in the first couple years, in the last few they have been more mental. For a while his smile seemed more like a growl. His once easy going, happy disposition became one that was irritable, easily upset, and extremely emotional. We had to watch on Tippee toes when he joined the little sports teams. He seemed to get really agitated when he exerted himself. I found his pupils to always seem dilated. He was going off a cliff and I could not figure what was going on! I ALWAYS thought that strep, stumbling, and out of head episode had something to do with everything. I looked and researched. Finally found PANDAS. I watched the next time he was really "off"-- the obsessing over batman, the personality change, the throwing his body around, nighttime wetting, and waking up with a sore throat…took him to dr…STREP! I don't even remember if I asked my regular pediatrician about pandas- but waited 5 months for Dr. B. He agreed with pandas- took blood, and put him on antibiotic and prednisone. DS did not do well on steroids…crazier behavior, extreme melt downs, crying then hysterical laughing. When we saw for followup- I told him how awfully he did with prednisone- reiterated his symptoms of low grade fever, night sweats, fatigue and hacking - and he said sounds like Lyme and Babesia. Ordered Igenix lyme test and he was IGG positive through Igenix, not CDC, and Lyme IGM negative by both standards. He was positive for Babesia, both IGM and FISH. Started with antibiotics and got an apt with DR J.

I thought he would be put on IV antibiotics, given his sensory and nuero symptoms and likelihood of having this for while. We continued to see both Dr, with seeing Dr. J more and Dr. B not so often. DS definitely made gradual improvement a couple months after starting treatment. But I would say he is only to 50%. Dr. J says DS has immuno-encephalopathy, but not offering any treatment. Dr. B ran more tests (mostly strep based i think) to see if anything else was coming up. DS continued to have episodes, and trouble with psycho-social issues. Some days would seem better, but he would fluctuate so much.

In September, just back to school for week or so, he was again in exacerbation. He was really off his head. I called my ped and asked to have Cunningham test asap. Numbers came back sky high for Dop1, Dop2, and Tubulin, with the other 2 in range. Results were at far end of PANDAS LIKELY. We actually had our DR. J visit that same week and I knew he was still a bit off..after treating lyme for whole year, and only having positive IGG results, it NOW said IGM positive both IGENIX and CDC!

What does that mean? I did call the office, but they really didn't have much to say. We have another visit scheduled for the end of January.

 

THEN in November, DS started had for the first time ever - physical tics, almost like spasms, almost a cough with his whole body jumping. This ramped up for day, double checked on his strep- he was negative, but I took his sister and she was positive. The tic slowly went away.

Since then though he has had them again, really really hard blinking and a CONSTANT coughing, inhaling tic. He also had a couple nights where he was really sweating it out. He is having super anxiety separation, panic attacks, and intrusive thoughts that go haywire. We were out again in SF visiting family. We went to Alcatraz and he could not stop worrying that the boat would leave us on island, and then worrying that he was going to have surgery there, and crying, even as we waited to get back on ferry. No amount of reassurance would help.

I went to neurologist in NYC who has pandas listed as interest- she agreed that it's likely auto-immune, but not really where to go with it, other than get a LP. She also drew blood. She called saying nothing came back in blood, even lyme tests were all clear, strep etc...

 

 

SOOO…I feel at a loss. He is having symptoms he's never had before, the motor and verbal ticks, crazy separation anxiety and panic attacks. If the lyme came back IGM positive after a year of treatment ...what does that mean? Is it the lyme or pandas? I feel it's getting worse or there's something more going on that needs addressing. Dr. J was ok, but he didn't seem to guide in any other kinds of ways. Thanks to this forum, I had him tested for MTHFR- he is compound hetero, but yet I got no guidance as what to do for that from either doctor. I did do the 23 and me and he has5 homozygous mutations and 6 hetero. But again I really don't know what to do with all of it. Should he be on IV antibiotics if lyme is still the culprit? Should I go about trying to get IVIG? I don't know how to swing it if not covered by insurance. What else can I do? We see neurologist on Friday- I think I want to have LP done, but should I wait for exacerbation? Should I be looking for another doctor?

[momofthree]

Also, his BUN/CREATINE level has continued to rise consistentally with each test,abnormally higher each time. starting at 27 for first test, to 37 for last. any idea what that means?

[911RN]

Also, his BUN/CREATINE level has continued to rise consistentally with each test,abnormally higher each time. starting at 27 for first test, to 37 for last. any idea what that means?

Those numbers reflect BUN, what is his creatinine? Both these numbers reflect somewhat different things for kidney function. High BUN in absense of high Creat can just indicate not enogh fluid intake i.e. little dehydration. Consistently high BUN/Creat can indicate some kidney problems.

[PowPow]

Your foray into Lyme sounds very similar to my daughter's- + Babesia, then + IGM Lyme, with treatment. My daughter did eventually receive IV abx for this.

One suggestion I would make to you- have you reconsidered trying the steroids, now that he has been treated by Dr J? In a high dose?

My daughter tried steroids (given by LLMD) when the comprehensive Lyme tx she was recieveing was not cutting it. the steroids were a teeny, tiny dose, and did not seem to do a darn thing. She was a total mess.

Then, several months, later, we went to PANS neuro and tried high dose (60 mg x 7 days and working down the dose over a month). By day 10, we saw very obvious, sound improvements. The effect did not last for ever- she ended up repeating steroids mulitple times, getting IVIG and pex (mulitple times each), but it did two things:

1. clarified that we were at the autoimmune point of her illness

2. brought her some relief from her severe symptoms (which some are quite similar to your son's, also)

 

Now, fast forward a few years & she is treated with monthly IVIG (1g/kg) and IV steroids, daily augmentin (1000mg XR twice a day) and an oral immune supressant. She has anti-phospholipid antibodies and has been diagnosed with encephalitis.

 

The best thing? She is doing great! Small tics, depression and OCD, but she goes to school every day, smiles, takes care of her self and enjoys herself and even has a good friend.

 

As an FYI- my daughter's LP has been totally normal-- so a normal result to those tests does not rule out everything .

Best wishes

[pr40]

post MTFHR results in a separate post and, I am sure, many will try to help you with those as well.

[momofthree]

thank you 911m. His bun is usually high, but the Bun/Creatine Ratio seems to have even more elevated numbers. The tests have usually been through lab corp, and it just states BUN/Creatine Ratio with a number. Each blood draw he has been consecutively abnormal, beginning with 26 in JUly 2012, to this past September with 37. I am curious to what that might indicate as it has never been in normal range.

 

Powpow- thank you. May I ask which PANS neuro you used? Were you able to get IVIG covered and how was Encephalitis diagnosed? Dr J thinks DS has autoimmune Encephelapothy, but again, but didn't really offer up anything to do anything about it. Is your daughter still in treatment for lyme as well? It's so hard to figure why a whole year later, now we have IGM positive, then a couple months later, neuro finds none of that on blood tests- but then again I'm sure didn't use igenix. I know LP would likely be normal, but as we still have never done it, since he continues to worsen, I feel we should at least see...

 

pr40 thank you for suggestion. I will try to post MTHFR results.

 

I am hoping school was not too hard today with tics. He said before break that a couple kids kept asking him to stop. They all seem to be respiratory related…inhaling or exhaling, coughing or clearing, with his whole body quickly moving like a real physical hiccup. Where or who does all the extended viral testing and such?