I feel like a broken record

[Tattoomom]

DD (just turned 4) has been on antibiotics off and on since her last strep infection in May. We started off on Amoxicillin and switched to Zithromax. She started the Zith in August and we did 14 days straight and then tried to wean down but things quickly deteriorated.

 

We know she has Pragmatic Speech & Processing Delay. She's also immature socially and emotionally. She's in ST and seeing a Psychiatrist who also thinks she has some PTSD from her past medical history of Autoimmune Neutropenia that she battled for almost 3 years. I've talked to her Psychiatrist indepthly about PANS/PANDAS and she's definitely not denying it, since we've seen such an improvement on antibiotics, and she's seen her MAJOR TANTRUMS, ANXIETY and OCD. She was diagnosed with a sinus infection at 2 1/2 that persisted despite antibiotics. She had a CAT scan to confirm the sinus infection, so we know for sure she had one. Anyway, coincidentally, that's when all of her tantrums/regression/spacey/foggy weird behavior started!

 

She was recently evaluated by a Developmental Pediatrician who deemed her to be developmentally delayed by about a year. Would PANDAS/PANS cause developmental delays? Before the abx we were starting to think she might have high functioning autism, but it's not consistent. Some days she's sharp as a knife and other days she's foggy brained. What we have learned, is when she goes OFF an antibiotic, she regresses! Her speech preogress is lost and she seems to lose everything she's gained. Is that typical????? The Pediatrician is wanting to get her down to a once a week dose, but it's just not cutting it. The Psychiatrist has her on Zoloft and Tenex. I'm still confused..... Does this sound like PANDAS????

[LaurenK]

I think a lot really depends on the age in which it happens. It's a whole different can of worms when it happens in infancy because crucial areas of the brain are still developing. If specific regions don't correctly because of PANDAS, then perhaps the child will be left with more problems. Parts of what you say do sound like PANDAS, but if you saw a good specialist and he/she said no- it's Autism, then maybe it is that instead. Both PANDAS and ASD can have overlapping symptoms and brain circuits so it can be hard to tell & certainly nobody here can tell you one way or another. But for me, PANDAS was an abrupt onset of OCD and tics following a strep infection- No developmental delays. EVERYTHING disappeared with immunosuppressive treatment. I had no lasting delays or neurological problems. The success with the antibiotics doesn't say much other than that perhaps inflammation is involved.... it doesn't necessarily prove an autoimmune problem because abx are immunomodulatory.

Edited September 16, 2012 by LaurenK

[LNN]

I think given your DDs history, it's very reasonable to consider PANS and to continue to push for a steady dosing of abx to maintain the improvements. Does that mean it's PANS or Pandas? Not sure. But I think it means it's worth pursuing and to me, it does suggest that there's a medical cause of her issues and a medical treatment.

 

I have to disagree with LaurenK that if a doctor gives a diagnosis, it must be so. That wasn't at all true for my kids. I know that sounds like I'm saying to doctor shop until you get a dx or treatment that you like. That's not really what I mean. But I do think we know our kids and no kid who's permanently impaired has moments where she's sharp as a knife. If those moments exist, then that's the baseline that's possible. To me, it suggests working with a doctor who has a large toolbox and who believes that autism is only a label for a group of conditions we don't understand and that the things you're seeing are medically treatable. That might be a Pandas doctor or a DAN (Defeat Autism Now) doctor or an LLMD (lyme literate MD). But it sounds like an integrative doctor who considers a broad range of medical issues, who tries to support as well as suppress the body's systems, could really help you.

 

When we were considering a neuropsych eval, our Pandas doc told us to cancel, that all we'd be doing is measuring the impact of the disease, not my son's true abilities. She suggested we treat the illness first and then if there were residual issues, test at that point. So the labels and findings you have can be useful in obtaining therapies and an IEP but if your heart tells you that there's a bright lamp hidden under that basket, believe that feeling.

 

My son got sick when he was 5 but had sporadic issues as a toddler. In my own experience, yes, he had delays that have gone away with treatment. The single biggest factor in my son's delays was that he has pyroluria - a genetic zinc/B6 deficiency, as well as a chronic infection. Once we started supplementing (under an LLMDs guidance), it was like someone turned a dimmer switch from low to bright. He had/has lyme and Pandas as well. But he needed more than just abx to help him literally emerge from the fog.

 

Bottom line - trust your instincts. Fight for what your heart tells you. Keep digging.

[LaurenK]

I think often times it depends on the doctor LLM. I agree with you that some just hand out a diagnosis like its nothing at all, but some do know and understand both diseases. Plus it is possible to have both.

[beeskneesmommy]

I think it is reasonable to pursue the PANDAS dx thru a true PANDAS specialist. The sinus infection seeming to be the primary trigger is a red flag. One of the things that made a huge difference for us was learning that there was a link betw. sinusitis and continues PANDAS symptoms. I suggest that you see a PANDAS specialist who takes this into consideration. Dr. Bouboulis in CT or Dr. Latimer in Bethesda, MD would be my recommendation; both if you can do it. Dr. B takes insurance but Dr. L does not.

[Tattoomom]

It is definitely NOT AUTISM. They said not even a toe in the pond.

 

Unfortunately, we cannot travel. We are poor as dirt

[Tattoomom]

Evidently, we have an Infectious Disease specialist here who knows of PANDAS. Do you think that would help me?

[kos_mom]

Having one autoimmune condition sets you up for another. So with the autoimmune neutropenia you need to be on the alert in any case--if it is not PANDAS today it could be something else down the road. But the regression off abx does sound suspicious for PANDAS. My DS had language processing problems--I though perhaps too many ear infections but I wouldn't be surprised if PANDAS played a role. All too long ago to really say.

 

You said your DD is on Tenex. Everyone reacts differently to meds, but this was not a good one for DS. He was on Prozac and had a lot of side effects (all of which the psychiatrist said was part of his "syndrome" never identified as PANDAS.) I wanted him off it so we weaned him down and put him on Tenex--he was 11 and had major problems with language when he took--it was like everything slowed down so much for him it was hard to express himself. So I'd take a look at that. I'd also give the infectious diseases guy a shot--but if he really doesn't know PANDAS as well as people on this board or if he is unwilling to experiment with longer term abx, you should feel free to disagree and see if there is another doctor that is more open. The sinus problems give you an in to an ENT, a number of them are quite familiar with PANDAS.

[Tattoomom]

She was just put on Tenex this week, so far so good.

 

We saw ENT for the sinus infection. He recommended tonsillectomy. This was before all of this really hit hard.

[kos_mom]

A tonsillectomy doesn't sound like a bad idea at all but she should be on abx leading up to it as well as afterwards. While he's in there he might see if the sinuses need some draining. I'd definitely consider a follow up with the ENT.

[Tattoomom]

So, regression off the antibiotics is a typical response with PANDAS? Does this mean she hasn't been on them long enough? Or possibly not on the right one? Or not on the right dose?

 

I'm so confused!! Thank you so much for all of your help!

[LNN]

So, regression off the antibiotics is a typical response with PANDAS? Does this mean she hasn't been on them long enough? Or possibly not on the right one? Or not on the right dose?

 

I'm so confused!! Thank you so much for all of your help!

Yes to any of your answers. There's no single answer. Often, it takes my DS about 6 weeks for a flare to calm down after antibiotics have killed the infection. But if your DD's symptoms get worse when you stop abx, it suggests that either the infection isn't gone or that the abx are helping to control the immune system and inflammation.

 

Some here have found that there was a chronic infection - a chronic sinus issue, mycoplasma pneumonia (which can takes months of abx), lyme or bartonella (both from ticks). So you stop the abx and the infection is still there and it starts all over again.

 

Many here also keep their kids on abx both the treat a current infection and to prevent any future infection. This is the standard protocol for rheumatic fever - the risk to the heart from a second infection is too great, so people are put on abx until adulthood.

 

You can also use motrin to help with the inflammation. Motrin will lessen my kids' symptoms in about 20 min. In bad times, I'll give them a motrin every 6-8 hrs non-stop for a week or two. it has to be motrin (ibuprofen) not tylenol (aceteminophen). Tylenol doesn't do squat for our kids.