bigmighty

Hydrate like crazy - give an extra 8 ounces of liquid every 90 min during waking hours beginning today and stopping next Monday. It keeps the headache away. Also, ibuprofen a couple of times daily for a full week after IVIG is recommended.

Funny to see others with this issue. DS tied a shoe for the 1st time at age 12 1/2. Now, at 14, he finally has it mastered (but his technique is extremely atypical)...

Yeah. I only read the dust jacket, but that's sort of what I was thinking...

I read a synopsis about this - true 1st person account of tourettes (co-written by James Patterson). But it was sudden onset at age five and accompanies by severe OCD. Wondering if anyone has read this and if he had PANS. http://www.amazon.com/Against-Medical-Advice-Struggle-Agonizing/dp/B005SN26ZQ/ref=sr_1_1?ie=UTF8&qid=1341668856&sr=8-1&keywords=against+medical+advice

Oh, gosh. I'm so sorry to hear this. Very glad that IVIG is coming soon. May all go as smoothly as possible and have lasting positive results. Hugs - Suzanne

K - So sorry it turned out this way. DS has not had his tonsils removed because (even though we suspect that there is remaining infection) we just can't bring ourselves to rock the boat at this time. Maybe in the future, we will feel differently. Very glad you have the IVIG lined up.

so, ptcgirl, your DD is not on any antibiotics at all? Wow!

Kimflow - remember to hydrate like crazy before, during and after IVIG for about six to seven days in total. Like an extra 8 ounces of liquid every 90 minutes during waking hours.

Funny. Steroids is what put DS into his current remission. In spite of remission, Dr. B. still wants to proceed with multiple IVIGs due to low overall IgG. He says that this will probably bring a return of the OCD and other PANDAS symptoms. We had heard that steroids during IVIG was a possibility, and inquired about it (as we hoped this would keep the current remission). Dr. B. said it was not possible for DS to have steroids with IVIG. Maybe his labs/circumstances are different. We actually want steroids with IVIG, but have been told it is not an option. I found it interesting that we were warned that DS's PANDAS symptoms will likely all return with another round of IVIG. Another poster here said her DD is symptom free and Dr. B. wants to do a few more IVIGs, even though no problematic labs. If it is really true that more IVIG is likely to end the remission, what would be the benefit of doing that? I definitely am confused about some things.

Pre-diagnosis - Had 18 cases of 'symptom-free' strep between ages two and 10. DS would fall down and sob at length for no reason. I'd go in and request throat culture and it was always positive. Never a sore throat or fever with strep. Anxiety and tricotillomania accompanied each case but all usually resolved in one to two rounds of antibiotics. Just before age 10, ENT suggested six months of antibiotics. DS did not have strep again for nearly three years. During the ages 10-12, DS (always extremely shy and with extreme sensory integration issues) blossomed and became outgoing and much less sensitive. At the time, we did not see the connection at all, as his behavior changes took place after he went off of the antibiotics. Diagnosis - age 12 - extreme full-blown OCD overnight onset. Went to family therapist who, luckily, suspected PANDAS immediately. Titer score during an active case of strep at this time was "too low to measure." But Antinasal DNA antibody test score was quite elevated. Local PANDAS-friendly doc provided long-term antibiotics. DS accepted into NIH clinical trial. Two rounds of HD IVIG. DS was completely 100% in remission for three weeks (age 13) after 2nd round of IVIG. However, he got strep three weeks later, leading to symptoms much more severe than those at initial onset. Symptoms continued for 10 months, during which time DS worked with Dr. B in CT. Eventually, a combo of 19 day steroid taper and augmention 875 2x daily resulted in remission. Present - DS has been in remission of all symptoms for 10 weeks. He has no recollection of having ever been sick. He remains on augmentin 875 2x daily, for the present. His most recent few sets of labs show overall IGG at 600 (normal is 800-1800). Dr. B. recommends multiple IVIGs - every eight weeks ongoing, to address the CVID, but suspects that the PANDAS symptoms will return when IVIGs begin. Still undecided as to how to proceed. More labs and appts with local docs/immunologists next week. DS is presently on the schedule for IVIG in CT in late August.

Yes, so glad to hear your news. Interested in knowing, also, why you would do another IVIG at this time, if no symptoms. Is your DD on antibiotics and, if yes, which ones? Thanks and so happy you all were able to enjoy the vacation!

The standard prophylactic medication for tick bite with suspected lyme is a single dose of doxycycline if within 72 hours of contact.

DS has pandas and also has slight QTc interval prolongation.

Augmentin made DS worse in many ways for about five weeks. Small positive changes began in week six. In week seven, DS started a three-week steroid taper making him significantly better. The two weeks after the steroid taper were quite bad, then improvements began again. Five weeks after that, all of his symptoms went into remission. Still on the Augmentin.

If you google search it on youtube, there are videos showing the whole process. I have not watched them yet. It's my understanding that you have a large syringe that looks like it would hold slightly more than 1/2 cup. I believe you push the plunger in by a very small specified amount every 15 minutes and just keep doing that until it is all used up.

Hmmmm.... If DS is not having PANDAS symptoms and is only getting SCig for the CVID, I wonder if it would cause problems. Can't find anything in the literature.

Our local immunologist spoke with us this week and asked whether anyone had been trying subcutaneous IVIG for PANDAS patients. DS may have an ongoing CVID and, if yes, might require ongoing IVIG treatments for the sake of his immune system. If yes, a weekly self-administered 2 1/2 hour subcutaneous IVIG would be an option (the other alternative is two full days of IVIG every 8 weeks). DS's symptoms are in remission right now, so not treating with IVIG for PANDAS. But it got me wondering - is anyone out there trying this option for PANDAS? Obviously, it might not be an option for younger children or kids with significant symptoms. But it is an interesting idea...

Dr. B's office was kind enough to book us an appt late in the day, so we could drive all day and see them the same afternoon, then drive back the next morning. Of course, the down side was that by the time we rolled in, he was about 80 minutes behind schedule - and we'd already had a very long day. Be sure to ask at the desk when you get there to see how long the delay is. We were able to go to town for milkshakes and then return. We still cooled our heels for another hour after we got back - and we didn't leave the office until 9:00 pm. By then, the lab was closed and it was a Thursday evening. Since Dr. B's Darien office is not open on Fridays, we needed to find another local lab to have tests run before we could head out for our return trip in the morning. Definitely bring lots of items to entertain yourselves while you wait. He definitely pays full attention to you while he is with you and takes his time to be sure he understands your child's situation. Hope all goes well!

When DS was younger and on liquid meds, we always told the pharm that we were going out of town and were getting prescrip now to use later. They would give the powder in one bottle and water in another bottle and include mixing instructions. Since yours is already mixed, you'll need to use it now.

If you think the additional antibiotics are needed to keep the tics at bay, by all means give the additional five days. Not a big deal. If you think they are not absolutely necessary and your child will be okay without them, you might want to hang onto the five days worth for the future. Something for an absolute emergency if you cannot get a doc to prescribe and you know what's in store if you don't treat.

DS was on ibu daily for six months. Doc ran liver function labs 3x during that period. Even if you don't exceed recommended dose, with long-term use, it is important to check liver function periodically. Glad you are getting good results!

Are you already doing advil? Check w/the doc, but advil 3x daily for six weeks might be an option.

Keith Saylor is a CBS specialist, but I don't think he is a psychiatrist - probably PHD in psychology. So not sure if he would meet your needs. He is in Herndon. You can probably find an old video clip of him on the web if you search. He was on one of the first episodes of Hoarders.

Funny. It causes DS to become stuck and repeat the same phrase or comment again and again. He will tell the same story six times within an hour and seems to be unaware that he has told it previously. Only happens when he takes NAC. We have tried it a few different times. No positives at all, plenty of down side.