finally got titer results

[EmilyK]

Today we finally got the titer results from testing on June 27th at Boston Children's. I don't understand the delay in getting them or why I had to badger them to get them, but we got them at least. The bloodwork was drawn at the tail end of three months of penicillin with his first negative throat culture that week too (he'd been positive on 4 previous throat cultures in april and May and June). His ASO titers were only 195 but his Anti Dnase B was high at 533. We also finally got the local dr to test for lyme after the neuropsych confirmed that indeed lyme could also play a role in the anxiety/ocd. So another success after 4 months of asking to rule out lyme. I am hoping we get those results before we see Dr. B on the 11th and I'm relieved to have the titers data for him. I'm not sure about the appropriateness of the timing of the titers test or what the results mean on the heels of three months of abx. The neuropsych gave him a laundry list of dx - Anxiety with OCD traits, ADHD, dysgraphia, LD math, LD NOS (fluency) and the 504 meeting is next week. We'll see if we stay with 504 vs IEP given the results.

 

All summer he's been complaining of leg pain and tired legs. He's active but never used to complain of that. Anyone else hear this much? I'd like to think it's just growing pains, but I don't know.

 

What all do folks bring to Dr. B besides lab results? I do have logs of symptoms and behavior.

 

The hives have been new this summer and initial allergy testing is coming up normal. There doesn't seem to be any common item across hive events other than about 20 minutes after eating. Bendryl nips it just fine thankfully. So the allergist is saying idiopathic hives at this point.

 

Melatonin has been a great thing for sleep. I just this week found a variety he will agree to take, and it's been wonderful to have him asleep by 8:30 rather than pacing the floor with anxiety.

 

I hope we can get on a course of decent treatment with Dr. B's visit so DS can start to get some relief!

Emily

[Wombat140]

All summer he's been complaining of leg pain and tired legs. He's active but never used to complain of that. Anyone else hear this much? I'd like to think it's just growing pains, but I don't know.

 

Oh, I get that a bit. Have had for the last few years - I think it's just that the tics make walking extra hard work, but I'm not sure. Still struggling to get any immune testing done (difficulty finding doctor in this country who knows anything about PANDAS!) so couldn't say what it means if anything. NB do get it looked at though, it turned out that mine was being made a lot worse because I had flat feet or something and needed special insoles.

 

Good luck with it all!

[colleendonny]

Dr. B will be great help! Do you live in the Boston area? We do... There is a support group meeting soon if you are interested.

[bulldog24]

I just want to add that not all PANDAS (PANS)kids have elevated titers. 33% of PANDAS kids have normal bloodwork. My son has completely normal aso antidnase b and he is "classic clear cut PANDAS" (then he got lyme on top of it)

 

So while having something to go on with labwork is helpful, It doesnt always tell the story. And FWIW if you are going to childrens for a Lyme or PANDAS diagnosis and or treatment they are not likely to be very helpful.

 

just my 2 cents

[kos_mom]

Re: leg pain weakness. DD, now 19, started complaining about this last year. Ped kept referring her to orthopedist, who kept blowing it off. A year and a half later, it has gotten to the point where she can hardly walk a block and sometimes can barely get up the stairs. She now has what doctors refer to as spasticity and hyperreflexia. While it is very MS like and an MS medication she got last week, Baclofen, has been amazingly effective, her brain scan doesn't square with that dx. Dr. T and a neurosurgeon think it could be lyme (she's tested negative several times) or some other infection, possibly viral. She needs a spinal tap to investigate further--in process of trying to locate neuro in our area who knows what he/she is doing to perform. We feel entrapped in a medical mystery at this point. Please keep your eye on this leg issue; it has become quite incapicitating for DD.

[EmilyK]

I've got it on my list for Dr. B next week and I'll keep an eye on it for sure. I think I won't waste my gas money driving back to Children's for anything. I'd much rather spend it on going to the Boston support group I think. We're in RI so not too far away although not right there.

[SSS]

Today we finally got the titer results from testing on June 27th at Boston Children's. I don't understand the delay in getting them or why I had to badger them to get them, but we got them at least. The bloodwork was drawn at the tail end of three months of penicillin with his first negative throat culture that week too (he'd been positive on 4 previous throat cultures in april and May and June). His ASO titers were only 195 but his Anti Dnase B was high at 533. We also finally got the local dr to test for lyme after the neuropsych confirmed that indeed lyme could also play a role in the anxiety/ocd. So another success after 4 months of asking to rule out lyme. I am hoping we get those results before we see Dr. B on the 11th and I'm relieved to have the titers data for him. I'm not sure about the appropriateness of the timing of the titers test or what the results mean on the heels of three months of abx. The neuropsych gave him a laundry list of dx - Anxiety with OCD traits, ADHD, dysgraphia, LD math, LD NOS (fluency) and the 504 meeting is next week. We'll see if we stay with 504 vs IEP given the results.

 

All summer he's been complaining of leg pain and tired legs. He's active but never used to complain of that. Anyone else hear this much? I'd like to think it's just growing pains, but I don't know.

 

What all do folks bring to Dr. B besides lab results? I do have logs of symptoms and behavior.

 

The hives have been new this summer and initial allergy testing is coming up normal. There doesn't seem to be any common item across hive events other than about 20 minutes after eating. Bendryl nips it just fine thankfully. So the allergist is saying idiopathic hives at this point.

 

Melatonin has been a great thing for sleep. I just this week found a variety he will agree to take, and it's been wonderful to have him asleep by 8:30 rather than pacing the floor with anxiety.

 

I hope we can get on a course of decent treatment with Dr. B's visit so DS can start to get some relief!

Emily

 

*Hang in there- you've worked hard!

I only mention this because you say you may suspect Lyme and are finally getting a test-

but leg pain like you mentioned are something I have w/ Lyme/Bartonella.