bigmighty

Thanks for all of the thoughts. They are much appreciated. We have an appt. with a local immunologist to see if he agrees about the need to treat CVID at this time. We will get more info and move forward from there. If we decide to treat CVID, either now or in future, we hopefully will be able to convince the local doc to take us on so we don't need to travel 300 miles. At the very least, we have a couple of months of good times to be had at present! Thanks again.

DS's PANDAS symptoms disappeared entirely six weeks ago (shortly after 19 day steroid taper). He remains on Augmentin 875 twice daily. His overall IgG is 600. Doc says IgG will never improve without multiple IVIGs and that DS is considerably immune compromised. Doc also says we will need to reduce dose of Augmentin soon, but when we do, DS likely will get strep again immediately and all symptoms will return. Doc recommends IVIG every 8 weeks for a year then check IgG to see if improved - starting with IVIG this August. Doc also says it is highly likely that all PANDAS symptoms will return as soon as we start the IVIGs. Rock and a hard place. After 16 1/2 months of severe OCD, we would love to keep this happy OCD-free thing going for as long as possible. But doc says we have to reduce Augmentin by Halloween. DS is almost 14 and starts high school in the fall. Either we start the first of multiple IVIGs in August (and possibly get the OCD back at that time) or we wait until we reduce Augmentin in October, and just hold off, continue lower dose of antibiotics, and see if DS actually DOES get strep and return of symptoms. In that second version either - a) he gets strep again immediately and we kick back up the Augmentin, do more steroids, try to get back to a better place, and then move forward to schedule IVIGs or he doesn't get strep and makes it through the year on reduced antibiotics and we don't have any return of symptoms. If you were me, would you be proactively starting the IVIG ball rolling now and scheduling all of those appointments? Or would you want to wait and see if DS actually has the immune capabilities to keep strep at bay on prophylactic dose of antibiotics? Obviously, the goal is to get DS into the best possible shape to be healthy for the long-term. But if we are lucky enough that he remains symptom free for the entire next year, we could hold off on IVIG until next summer. Then he could have IVIG in June and August of 2013 and see if that was sufficient to get an IgG bump. Trying not to disrupt his entire freshman year in HS with OCD and multiple IVIGs, but don't want to do the wrong thing for him. Thoughts?

Sorry. I'm not sure what you are asking. Perhaps you could explain in more detail and add some gestures (just kidding)? But, seriously - Are you asking if a tendency to give long-winded answers and/or gesticulate a great deal might be autoimmune in nature? Honestly, I have no idea. But it'd be interesting to see if other families see this trait in their PANS kids.

Jill just reminded me - DS needed ibuprofen 3x a day for three weeks after the steroid taper. If he missed even one, he was terribly depressed. Is your DS on ibuprofen? Perhaps you could give it a try, if he can tolerate it.

Oh, sweetie. I am so sorry. I can't even begin to imagine how difficult this is. You have kept everything together up until this point, and you are still doing that. Take a breath. Keep trusting your instincts. They are excellent. Yes, get on the cancellation wait list and see if you can get in for IVIG sooner. Make an appointment with any local immunologist that can see you quickly and see if there is any (slim) chance of getting IVIG locally somewhere. Make an appt with the pediatrician and get a few moments alone with the doc to express concerns about your DS's depression. Definitely do anything you can think of that you haven't already done (if there's anything left to try, that is). When he is out of earshot, you might want to call the suicide hotline and see if there are resources or things they recommend - knowing that your DS will be home alone this summer. I don't know what you do for a living. Is there any chance of either you working from home for a couple of days or your DS joining you at the office? Maybe he could help out with a filing/organizing project, or read some books. If not, do you have enough vacation days to take a few days and do some day-trips with your DS to distract him? Maybe get some books on CD if you have a player in the car, and just take some drives - find the best diners within 100 miles or something? Are there any summer activities he'd be well enough to attend - maybe places he can volunteer to help out with some younger kids? I found that even when DS was at his sickest, he was still able to nurture mentor younger children. Not sure if your DS is even permitted to be around little kids with his immune challenges though. I feel like I'm grasping at straws here. Sending virtual hugs and hoping your DS's mindset is improved with the new day. So very sorry.

Interesting about the recommendation to remove. NIH recommended keeping tonsils. Dr. B. says that unless the child has repeat sinus infections, he also recommends keeping them. Most parents whose kids have had tonsils removed say they are glad they proceeded to remove them.

Can you request a 504 for your DD so that she gets extra time on tests (like comes in after school or during lunch or study hall if she doesn't get the chance to finish during class)? Would your DD take advantage of that, if it was available, or would she be too embarrassed? DS has a 504 and is permitted extra time on tests. As long as they are able to use calculators, he rarely needs the extra time. But he likes feeling that he has options.

NIH does 2 g/kg.

I have long suspected that this is PANDAS related. DS is two grade levels ahead in math, and a top student. He is almost 14 and does not know how to add 7+6. He does not know his times tables. He also cannot alphabetize. One summer, he volunteered at the library. Re-shelving books was ridiculous. He had to start at the beginning of the alphabet and sing the ABC song quietly under his breath every time so that he knew where in the alphabet a book starting with the letter P should go. For the math, we were finally able to get him a 504 in 4th grade. It allowed him to complete (with no calculator) some addition and subtraction fact worksheets (mostly by counting on his fingers) and a blank multiplication times table (by singing the 3 song from the old schoolhouse rock, etc). Then he was permitted to consult these during tests. That was the only way he was able to complete timed tests during a class period. Now that he is in geometry, they are permitted to use calculators for everything. No way he could survive without it. He does simple one digit addition and subtraction on it when doing his homework. I wish we could find a solution. DS's OCD symptoms have been in full remission for a month. No change in math fact abilities.

DS actually recovered, seemingly fully, after his 2nd IVIG with NIH. Sadly, he got strep three weeks later while on prophylactic antibiotics and it all came undone. Nine months later, DS finally seems to be in a remission (four weeks, exactly, and no pandas symptoms whatsoever). No additional IVIG. Augmentin 875 twice daily for about the past five months, with a three week steroid taper thrown in a couple of months ago. DS does not have any co-infections. We have heard from others that there is no sense pursuing IVIG if there are co-infections, until those have been successfully treated. Hoping people who have experience will chime in on that. I think you need to trust your gut. You seem hesitant to pursue IVIG at this time. I wouldn't try to talk yourself into it. While DS did technically get better after two rounds of IVIG, we have no way of knowing if those results would have been lasting, had he not gotten strep. Some kids do great for a few months after IVIG, then the symptoms return. We experimented with NAC and Omega 3 when DS was symptomatic, and did not have good results. But we have talked to others who said that, for their kids, those supplements made a huge positive difference. There may be other things you can try before heading down the possible IVIG path. Sending virtual hugs your way. I am keenly aware of how difficult it is to know if you are doing the right thing and how easy to second-guess yourself. It seems like you are very thoughtful and considering everything thoroughly. Wishing you a positive resolution sooner, rather than later. Best, Suzanne

DS was in the most recent NIH clinical trial. I just got an e-mail from them this morning with this same info about Azithro. Just as an FYi, they thought I would want to be aware. That is the prophylactic antibiotic that NIH prescribed to DS post-IVIG.

DS has had IVIG twice. Both times, his entire scalp flaked off afterwards and required very strong prescrip shampoo to treat.

Consider adding saccharomyces boulardii supplement along with the yogurt. Florastor is the most well-known brand, but others are less expensive. It is the only probiotic known to reduce risk of c-diff.

Thinking good healing thoughts for Lucy and hoping that the docs are able to figure things out sooner rather than later.

DS got a fair amount worse for the first three weeks on Augmentin 875 (yes, he had been on amox and on keflex previously - keflex having had the most positive effect up until that point). After third week on Augmentin, DS began to stabilize somewhat, but still below baseline. Nearly stopped eating for first two months on Augmentin. We were very nervous, but doc advised to give liquid supplements and continue. Another month on Augmentin 875 and slight improvement over baseline, but a lot of weight loss. Did a three week steroid burst at that point, saw great improvement during burst, and overall some improvement over baseline after steroids were stopped. After four months and one week on Augmentin, DS just recently went into remission. It has only been a couple of weeks, but DS has no PANDAS symptoms or behaviors at the moment. He remains on Augmentin 875 2x daily, plus florastor as probiotic. Hope this helps. So sorry you are going through all of this tedious trial and error. It is so hard to know when to stay the course and when to bail on something. We really wanted to bail on the Augmentin and also did not want to try the steroids. In our case, it was a good thing the doc talked us into them. Hang in there - Suzanne

Low or normal titers don't necessarily mean anything. My son had labs drawn minutes before his in-office strep test popped positive (within seconds). Titer came back nonexistent - listed as "too low to calculate." Two months later, DS was accepted into the NIH clinical trial - they quickly confirmed PANDAS diagnosis in spite of no titer score.

There is a list on this forum of docs that you can use to find a PANDAS-friendly doc. You need long-term relatively high-dose antibiotics (a lot of the docs prefer Autmentin) and, possibly, a steroid burst for your child, as well. Get on every specialist or doc calendar you can - now. You can always cancel a couple of days out if you find the right specialist and feel that it is the doc who can help your child. Be persistent. Don't stop until you get someone to give you the correct treatment. There is no doubt in my mind that your child has PANDAS. PANDAS kids often have very high ASO-Titer scores (although some have extremely low scores). And they also usually high AntiNasal DNA Antibody Test scores. Get someone to run some labs and verify that it is PANDAS. I am so sorry your daughter and your family are dealing with this illness. I am thrilled that your child has such a wonderful persistent advocate. You are on the right track. Hang in there. Sending virtual hugs - Suzanne

We replaced our furnace and filter system last fall and included all of the whole-house UV filter attachments.

It'd be pretty easy to have the docs rule it out. At least you'd know for sure. And, if it is EB, the vast majority of people get better with a few months of R&R. At least you'd know what you were dealing with. What docs have you all seen, so far, and what have they tested for?

Fatigue, pain, and exaggerated startle response make me thing of epstein barr virus. I have a friend who has it and these particular symptoms are quite pronounced. Also, sometimes with EB, titer scores are high and remain high. Not saying that it isn't PANDAS. Just that you might want to look into the possibility of EB, as well. So very sorry this is happening to your child.

Thumbs up! Great news! Thanks for sharing.

They were six weeks apart - first week in May and mid-June. Both were the real deal and both done by NIH. They placed him on a very low dose of azithro (500 mg 1x weekly) as prophylactic antibiotic after the fist IVIG in May and told us that we could not take a higher dose or any additional antibiotics and remain in the study. Unfortunately, it wasn't sufficient to prevent strep in July. After DS got strep, they added Cefdinir and kept the Azithro. Later, they changed to Amoxicillin and later still, a low dose of Keflex. When we thought DS might have strep again in September, they doubled the Keflex for two weeks and we saw slight improvement. They reduced it and DS did very poorly again. After we officially completed the study in November, we arranged for the ped to increase the Keflex again and scheduled a consult with Bouboulis. He is the one who switched to Augmentin. DS is still on Augmentin 875. Forgot to mention - NIH did HD IVIG. Many docs do 1.0 or 1.5. NIH did 2.0 - a fairly high dose.

Dr. B's website - http://www.advanced-allergy.com/

There were earlier appointments. They had one appt in mid-June and three possibilities for July. August just worked for our calendars. With luck, we will be calling them in July to cancel the appt. anyway. Just wanted to have a fall-back plan in case we are being premature in cancelling.

Well, I hope y'all will pop in and reassure me that we are not making a mistake. We just cancelled IVIG for this coming Mon/Tues. Were able to get on the schedule, tentatively, for late August, just in case the present positive situation does not continue. Sort of freaking out. It has taken me seven months to get this lined up and arrange for insurance coverage and now that it's 1/2 a week away, I just cancelled it. Tell me it was the right thing to do.....