Sleepless in South Bend

[billn]

Will see pandas experienced doctor tomorrow.

[WorriedDADNMOM]

Bill, Our worst Pandas kiddo had a lot of these "low grade fevers"....went mute twice, tics, tremors.....in addition to all the behaviors. Was horrible. However, with good comprehensive treatment.....your kiddo can be helped. Best of luck..

 

Here is a link for encephalitis.

 

http://www.nlm.nih.gov/medlineplus/ency/article/001415.htm

[billn]

The first meeting was last Thursday, the doctor made a great effort to make this possible.

 

History was discussed, and my concerns about pandas. Antibiotics are continuing, and testing (cunningham panel) etc. My concern is that I lack the experience to judge how much of the issues are due to pandas and how much to the accident TBI and PTSD. What I saw in March when she got better on antibiotics makes me think it's mostly pandas but that's a very very very hard sell I'm finding.

[billn]

Another sleepless night.

 

Two weeks ago Cunningham panel came back positive for Pandas

D1-2000

D2L-8000

Anti-lyso-40

Anti-tubulin-8000

CaM-K-163

 

These results after (following) augmentin 500 2X day for 4 weeks

Followed by 10 days at augmentin 750 2X day

 

I am pleased that pandas is confirmed, however based on her behavior and her improvement in March when given 26 days at 500 Augmentin twice a day I'm hopeful for better results than this. Why would she not now be as functional on 750mg 2X day? Did going off antibiotics for 3 weeks in april affect the pandas somehow making it harder to treat? Shouldn't the titers have been very low given that she was on such a high dose of antibiotics?

 

Three weeks have passed, a family vacation etc., but issues remain to be settled before changes in treatment occur. my daughter continues to show OCD, fear, enlarged pupils, sensory oversensitivity, emotional lability and defiant behaviors.

 

Is a higher dose of Augmentin ever used for Pandas? Can damage occur with extended use?

 

One treatment path includes psycotropic drugs and in-patient intense OCD facility. How is this best coordinated with anti-biotics and IVIG? Before, during or after?.

Edited July 8, 2015 by billn

[MomWithOCDSon]

Billn --

 

Sorry you're going through this, but I hope you won't get too discouraged by it. In our experience, what you're experiencing isn't, unfortunately, unusual. Our PANDAS journey highlighted two things for us: 1) the rapid-fire improvements we saw under the initial introduction of abx did not continue throughout the entire treatment period; and 2) especially for older children (our DS was 12 at PANDAs DX but, we suspect, had been suffering for several years prior to that DX), treatment and healing is more like a slow slog than a sprint.

 

Our DS showed immediate, very dramatic behavioral improvements when we first started him on Augmentin, but the pace and drama of those first improvements didn't continue; the improvements became more subtle over time. So much so that we initially thought the abx had "completed the job" and took him off; but then the backslide in behavior would start up within 24 to 48 hours, and we'd realize he still needed the abx. Finally, we started daily journaling -- just a few notes -- so that we could better track the improvements. The things he'd previously been doing that he'd been able to stop, the things he hadn't been able to do for several months that he was now able to do again, etc.

 

Higher dose of Augmentin? Yes, I think so. Like I said, our DS was 12 years old and about 90 pounds when he was first diagnosed, and he was put on 1,000 mg. of Augmentin XR, twice daily (the same med and dosage that Sammy Maloney of "Saving Sammy" was given). While that might seem like hefty dosage, many PANDAS kids have taken that, and since the recommended adult dosage of Augmentin XR for conditions such as sinus infections, etc. is DOUBLE that (2,000 mg., twice daily). Additionally, the XR (extended release) formula is thought to be beneficial on a couple of fronts: 1) Augmentin's half-life is pretty short, so the extended release keeps the med active longer, and 2) the XR version also has a higher clavulanic acid ratio, which is thought be helpful. It might be worth asking your doctor about.

 

Damage with extended use? I'm sure it can occur, and many doctors are very concerned about the phenomena of abx-resistant bacteria and/or c-difficile. Dr. Swedo indicated in a panel discussion that while she doesn't believe that consistent, longer-term abx use necessarily contributes to "super-bugs," she is concerned about it contributing to c-difficile. I can only offer, however, that my DS was on Augmentin XR for almost 2 years before we weaned him off, and he did not suffer either of these negative consequences. We did (and still do), however, give him pretty large quantities of probiotics in order to keep his gut populated with beneficial bacteria.

 

If you are looking at an in-patient intense OCD facility, I would first confirm definitively that they will follow a PANDAS treatment regimen (abx, etc.); there are some facilities that claim to understand/know PANDAS but then cease abx dosing during the patient's stay. Honestly, at the stage of the game your DD is in, our DS would have been too fragile for a residential program; his brain was not well enough to function in a strange environment on any level, so I feel as though putting him in such a program at that point would have done more harm than good. If you can, and have the resources, I'd suggest continuing with abx at home and perhaps arrange ERP sessions 2 or 3 times during the week while she still stays at home with you, and then you're around to "help" and support the homework assignments a good ERP therapist will recommend. Many families find that ERP therapy, let alone an in-patient program, is extremely difficult -- if not impossible -- for a child to be compliant with until there's been adequate healing. When they're so fragile and frightened and unable to put executive functioning into play consistently, therapy can be very tough. I will say, however, that for kids your daughter's age and older, I feel as though SOME therapeutic tools, even if they can't use them consistently or effectively at first, are still worth introducing because they can help prevent the OCD behaviors from becoming full-blown "habits" and therefore more intractable.

 

As for psych drugs, our experience has been that if they can help set aside some of the distress and improve you and your child's quality of life, they are worth considering. Just maintain any dosage very low, and very slow, and ideally consult with a PANDAS-savvy practitioner with respect to any such meds.

 

Finally, we never did IVIG, so I can't advise on that. I'm sure you'll get more feedback from others here in that regard, and your PANDAS doctor should have some advice, as well. For us, our DS responded so well to abx that we didn't feel it a necessary component to treatment. He also has a tendency toward being hyper-immune, rather than immune-compromised, so unclear that donor antibodies would actually bring anything substantive to the table for him.

 

Try not to lose the faith, and listen to your gut!

[billn]

Once again my daughter is beginning to get better, but this time it's taking a higher dose of antibiotics.

 

Day 12 on aug 1000 XR 2X/day

 

I'm also giving her oregano tablets

 

Assuming that, like in March, she gets better each day I am hoping that in three or four weeks she will be much more functional.

[MomWithOCDSon]

Glad to hear it, Bill. Keep the faith!

[mama2alex]

Please make sure she's taking high quality probiotics while on antibiotics (about 3 hours apart). Also, PANDAS/PANS indicates a malfunctioning immune system, so it's very important to work on healing the immune system as well as treating any and all infections. An integrative or DAN doctor is your best bet for that.

[billn]

My daughter continues to get better, however she had her down time when she caught a stomach flu virus. As that fades she's coming back with the help of essential oils.

 

Before the pandas was confirmed with Cunningham panel an unnamed University Hospital had referred my daughter to a intense OCD clinic which now has an opening. I have been given a one-week notice to take my daughter, who has intense attachment anxiety, and leave her alone at an in-house facility for an eight week ERP.

 

It does not make sense to me to begin therapy before IVIG, before the biological cause of her OCD is treated. Correct me about this someone please. ERP therapy when a person has active antibodies attacking neuronal tissue and causing elevated dopamine would seem to be the same as putting someone with rheumatic fever activly inflaming a heart on the treadmill to build up their stamina with aerobic exercise. Or a person with rheumatoid arthritis being put on weight training with their joints are inflamed. Somebody please correct me if I'm missing some important point.

 

Just because medical doctors won't talk with psychiatrists and work together doesn't seem to be a reason to place my sick daughter into an eight week session of forced thought modification while she is ill.

 

I believe she needs therapy, but I can't see that beginning that until after her inflammation has decreased.

 

Can somebody please help me? I'm getting a lot of pressure and I consider this course unconsciencable.

Edited August 9, 2015 by billn

[MomWithOCDSon]

Billn --

 

While I don't think you'll win the ideological battle with some on this, I say, trust your instincts.

 

I heartily believe in the value of therapy (ERP), and unlike some, I even believe it has some merit even when our kiddos are not fully participatory and still in the early stages of healing, mostly because it can reinforce some strategies for the whole family and lay in the building blocks for not allowing the OCD to continue its "kudzu creep" of infiltration and control once the kid is returning to functionality.

 

But I'm with you on the whole residential treatment thing, particularly for a fragile kid. I'm assuming this is NOT the USF program in which the parents and kids stay together in the evenings? Something more like Rogers Memorial where you drop the kids off and don't see them for at least a week? We were presented a similar opportunity with our DS when he was at his worst, and I did not believe . . . and still don't believe . . . it to have been a proper response. He would have felt abandoned and stripped of everything he was accustomed to being able to count on, and that would NOT have supported his healing . . . it would have decimated it. On top of which, through our years of therapy (off and on), I've learned that it's almost as much about training the family as it is the person with OCD. So packing the patient off and looping the family in with a few hours or a single day's session in how to handle OCD in the home, in the world, etc. once the patient returns home just doesn't make any sense to me, in the end.

 

If you have the resources, I would try instead to set your DD up with regular therapy sessions while she remains at home with you. We wound up taking our DS for 3 sessions each week initially, with "homework" exercises at home. We eventually scaled that back to 2 sessions per week, then 1, then 1 session every other week, then 1 session per month or so. And now, he's no longer technically "in therapy," though we continue to employ the strategies we all learned at home and out in the world when we see the anxiety/OCD try to creep back in. These sessions won't be any fun, and she won't care for them much, more than likely, nor will she like the "homework," but at least she'll have the continued support of returning home with you and undertaking the homework in a known, more comfortable environment.

 

All the best to you!

[billn]

They want eight weeks at Rogers, away from me away from home before exacerbation controlled.

 

I just want a chance for my daughter. A chance for her to heal among familiar things. Loosing her mother, suddenly being debilitated by this autoimmune encephalitis, suffering misdiagnosis and inappropriate therapies which bully her.... She has had a hard enough time already. Just give her a chance to heal. It has only been three weeks on AUG1000 XR. Just give her a chance to heal.

[mom24pandas]

Heartily agree with the poster who says to trust your instincts. Particularly after losing her mother, I imagine that being away from you for eight weeks would be really difficult right now even aside from the PANDAS/ separation issues. Have you asked your PANDAS specialist what their opinion is? Good luck to you and again, trust your instincts. You know your daughter and are ultimately the best judge of what will help her.

[dcmom]

Billn

 

I highly recommend the ocd program at USF. It is an outpatient program. I strongly believe something like that should be tried prior to resorting to an inpatient program, especially if you are seeing some healing. Good luck!

[billn]

We are off to see Dr. Chugani in Detroit on Monday. The Cunningham panel in May confirmed PANDAS antibodies active despite five weeks on augmentin. Has anyone had contact with him to know if he is familiar with Dr. Cunningham's work and understands this test? I want to get my daughter through an IVIG treatment and see how she is. I've waited since late March for this .... It is hard work having to both care for a sick child and get a simple IV in the Midwest.

 

The pressure is intense to forgo my plan: letting her heal before psychological therapy. The non-acceptance of biological cause for pandas behaviors. I guess this is the penalty for living in the Midwest.

 

I have found daily application of doTerra's aroma touch essential oil kit plus frankincense seems to have significant benefit. I see how she does without, behaviors become more restrictive.

[WorriedDADNMOM]

Billn, I would absolutely trust your instincts. The way our DAN/Integrative pedi said to us.....healing first...... then the absorption of what your trying to teach and change can take root.......pandas is like having a cellophane wrapped sponge. You can do CBT and other counseling.....but poking holes in the wrapper......good......keep at it........however.........but taking off the wrapper......it will absorb so much more.......kinda weird description.......I know. But for us, our worst pandas kiddo improved tremendously. Physically for sure in every way....but emotionally, cognitively, adhd improved, compassion and empathy improved, self confidence, interest in other things not previously........really in every way she improved. And this was WITHOUT CBT OR COUNSELING.

 

Are there bad days...yep.....but the waxing and waning of this can and does get better. I really suggest doing as much as possible to prevent and treat future infections.

Edited August 13, 2015 by worrieddadnmom