kimballot

I want to second what DC Mom said - A group of PANDAS/PITAND experts got together last summer and the name of the disorder was one of the issues they discussed. As a result of that meeting, Dr. Swedo is writing a "white paper" (This is an early version of a position paper or a guideline). We are all anxiously awaiting that paper. Dr. Cunningham presented at Autism One yesterday and in her presentation she stated that the name for the disorder will be changing to PANS (Pediatric Acute Neurologic Syndrome), and she acknowledged that exacerbations are most commonly triggered by strep, mycoplasma, lyme and viruses. I am not sure if this will be the final name, but I suspect the "strep" part of the name will be removed. The Autism one conference presentations are available online. This thread discusses some of the PANDAS related presentations.

I watched the recording of Dr. Bradstreet's presentation yesterday found at http://www.ustream.tv/recorded/14976060 Here are a couple of interesting notes I made: The video begins with Dr. Richard Frye, but Jeff Bradstreet starts about 25 minutes into the video. - Around 52 minutes he talks about quercetin, tryptophan, and 5 thp. Cautions against using quercetin and trypotphan in some kids - Around 1:15 he talks about PANDAS briefly, then goes on to talk about motrin, naproxen, curcumin, steroids, IVIG, spironolactone and other anti inflammatories

Dr. C gave new information - starting about halfway through. Hopefully it will be recorded. She did talk about D1 vs D2 and gave more information on the Tel Aviv stud (I don't think this study has been published yet) Dr. rossignol is on now - metabolic disorder including glutathione info at http://www.ustream.tv/channel/autism-one-conference-3 Wow! Dr. Rossignol actually explain oxidative stress and the use of antioxidants in a way that makes sense!! His handouts are here http://www.autismone.org/sites/default/files/Rossignol,%20Daniel%205-29%20Metabolic%20Abnormalities.pdf

Dr. C gave new information - starting about halfway through. Hopefully it will be recorded. She did talk about D1 vs D2 and gave more information on the Tel Aviv stud (I don't think this study has been published yet) Dr. rossignol is on now - metabolic disorder including glutathione info at http://www.ustream.tv/channel/autism-one-conference-3

Just a reminder that the AutismOne conference is streming live. Dr. C is up in a few minutes at http://www.ustream.tv/channel/autism-one-conference-2. You will need to make an account before you can see her. There are also several recorded sessions to watch later.

Wilma - I just want to congratulate you for your perseverance. You are seeing all the best doctors for your child. As you can see - there is no "One" way to diagnose and treat PANDAS or lyme.. but you are finding the best ways for your daughter. I look forward to hearing positive stories about your daughter.

Hi Eileen - I think that your child's clinical picture is as important as the IGG and IGA numbers. If your daughter is having frequent infections and has mildly deficient numbers, then you may want to pursue further specific testing of IGG subclasses, s pneumoniae titers (14 titers), and IGA subclasses to see if the problem is concentrated in one type of IgG or one type of IGA. IVIG does replace IgG, but it does not replace IgA. In fact, if your daughter is very low in IgA she may need to be careful about the brand if IVIG she receives. From what I have learned, there is really no cure for low IgA, which stinks because IgA is the body's first defense against mucosal infections including sinus infections. IgG makes antibodies that fight the bacteria or virus once it is int the body. Different insurance companies have different criterea for IVIG - if that is an avenue you are considering.

Wilma - If your daughter is like most on this forum she gets neuropsychiatric symtpms with ANY infection (hence - PITAND)... so the sinus infection was probably part of it Also - you and your doctor need to reevaluate IVIG in light of the bartonella diagnosis. You need to get advice from a LLMD and coordinate that with the PANDAS doctor. My son is currently being tested (again) for lyme.. but the lyme doctor told me that we should continue with IVIG every 8 weeks because of my son's immune deficiencies. It really depends on your child's individual case. I think the big thing here is that you FOUND SOMETHING that is contributing to your daughter's problems, which means that you have something to focus on now!

LLM - Thanks for the reminder! - I am bumping this up

I am sorry to hear that this did not go well for you. If it is any consolation, our PANDAS doc generally uses a 14 or 21 day taper with my son... so 17 days is a good amount to have in there! Also, we often do not see benefits until he tapers down to 10mg per day - and then the benefits have lasted (this has happened with 2 prednisone tapers).... until the next infection. I would try to stay on an antibiotic as long as the doctor will allow. Maybe talk with Dr. L about extending that. Best wishes -

LIKE! LIKE!

I don't know if it is true that kids outgrow symptoms (or is it that they are no longer required by law to spend 6 hours a day in an environment that is completely contrary to their body makeup).... but wouldn't it be nice if this is true??

Thanks, LLM - This is a great article! Now I understand biofilms much better! The whole time I was reading it I was thinking "I wonder if my son's sinuses could have been lined with biofilm and if that was why it was so difficult to eradicate... then I found it in the article - It has also recently been shown that biofilms are present on the removed tissue of 80% of patients undergoing surgery for chronic sinusitis. I think this is one of those articles that I will refer back to several times as it really explains so much about all those nasty little pests in our bodies that are building these impermeable cities of biofilm!

Wilma, It sounds like, overall, you have seen some improvement. I am keeping my fingers crossed for you. Be sure to write down all you notice... that will help you evaluate if this is working!

Hi Cindy - the cyst was actually a mucocele - which is a type of cyst that occurs when the mucosal lining pinches off and makes something like a water balloon - but it is filled with mucus. As you can imagine, as the body produces mucus it gets larger and larger and eventually the sinus has to grow (remold) and / or erode to make room for it. Mucoceles are pretty rare in children - generally only seen in a child who has had sinus surgery (my son had 2 sinus surgeries prior to this). BUT sinusitis is not rare, and many kids have chronic sinusitis without anyone realizing it. Children with PANDAS symptoms should be checked for siniusitis if you cannot figure out where the infection is. My son had surgery to drain the mucocele and remove the lining. They did not do any reconstruction at the time and there is a "fat pad" between his sinus and his eye - not a bone. His PANDAS symptoms did subside after the mucocele was removed and he was clear and doing well in school in September and October this year - but his sinusitis started up again in late October and we have been on a roller coaster ever since. He had IVIG in February and had a really bad couple of months after that, but he is starting to do well again. I am hoping the IVIG will keep his sinusitis at bay this year.

Hi Anita - First off - welcome to the forum. It is good to read your questions and know that you are working with a pediatrician who is trying hard to help you and your son. I am trying to piece together your posts - I think you are saying that you have a 7 year old son who was diagnosed with autism at 2 and PANDAS at 6. He recently had scarlitina - did well with the abx prescribed, but now has scarlitina again AND he was put on prednisone but had a bad reaction. Is that correct? It sounds like your pediatrician is really trying to help - but I would really recommend you try to find a DAN! doctor who is familiar with PANDAS or a PANDAS doc to consult with. I am concerned that your son never really eradicated the strep the first time around. I am not sure why the prednisone was prescribed, but I know my doctor tries to get rid of the infection first, before prescribing prednisone. Prednisone reduces inflammation and stops autoimmune responses, but it also slows down the immune system, so the immune system cannot fight infection well. That is why kids with lyme disease often do poorly with prednisone - because it allows the lyme to go unchecked for a while. Perhaps you should be treating with the antibiotics - and then consider prednisone if you are still having PANDAS symptoms once the infection clears. I hope that makes sense - if not - let me know. Also - regarding the sporonox - that was probably a herx reaction from the yeast die off... yes.. they could be somewhat related. If the prenisone stopped the body from fighting bacteria, then the bacteria and yeast may have been in somewhat of a conflict and the yeast may have died off a bit ... but that is a just a long shot speculation. In any event - be sure to use lots of probiotics with the antibiotic. Best wishes -

Wilma - I don't think steroids are going to fix your daughter's problems. You say she still has pretty severe OCD at night.... Is that better or worse than before steroids? Are the days better or worse than before? Try to be objective and break down her most difficult behaviors... then rate them before and during steroids. Then when the steroids end you can rate them again.

I think we have all heard this response at one time or another. I say NO NO NO the treatment is not completely the same and the differences can be huge. YES talk therapy (CBT/ERP) works for PANDAS and YES some kids need to go on psych meds... but talk therapy and pysch meds alone do not fix it. When our kids have a ramp up of symptoms it means there is an infection or some type of inflammation present and we need to figure out what that is and remove it (to the best of our ability) before we can expect talk therapy to work and before we mask it with psych meds. Once the infection is cleared, then we can think about standard measures. I am very sensitive to this because I stopped looking for infections in my son after he had his tonsils out. He never had any strep throat and the docs all told me it didn't matter if it was PANDAS - we do the same thing. So I took him to CBT therapist for about 4 or 5 visits for two years in a row. He "suddenly" improved after4 or 5 visits each time (I thought it was becuase I was really good at following directions) NO! It was because it was spring and his sinuses had cleared!! Two years later he had PANDAS symptoms plus joint pains, body aches, fatigue. I was told that now it was depression and he needed to go on SSRIs. It didn't look like depression to me - he really wanted to go and do things ... he just couldn't (I am not afraid to admit or seek help when my son is depressed). That was when I re-explored PANDAS and the PANDAS doc said "let's check his sinuses" ... and there was a huge mucocele (cyst) in his sinuses that was eroding the bone between his sinus and his eye. It was a scary mess!!! Sudden onset of neuropsychiatric symptoms in kids with PANDAS signals an infection or inflammation somewhere in the body. Why would we ignore that? A high fever signals a sudden onset of infection or inflammation in the body and I am sure if a child had a 102 degree fever for a week or two straight the doctors would be doing every test possible to figure out what the problem was... .they would not say "Well... it really doesn't matter what's causing the fever - just give him ibuprofen or tylenol every day for the rest of his life while the infection rages on and he won't notice"... UGH Sorry - that is my soapbox -

I am glad that you were able to do IVIG with your son. Keep him drinking plenty of water over the next week or two. We also found that ibuprofen and benadryl helped for a few days after - you can see if that is OK with the doctor. I hope you have a smooth recovery from IVIG and a peaceful transition out of the current exacerbation!

Let the doctor know what is going on. The doctor may want to start another (different) antibiotic.

I am sure the steroids will not cure her... but I would take compulsive reading over rages for now. I hope she reads herself to sleep tonight and you have a quiet evening!

WOW! This is really neat! My son has never had this done and we've never found strep in his throat but he's always had sinus and nose stuff and chronic nose bleeds... Why don't they make this a regular test??? I wonder how many of our "Throat culture negative" kids are harboring strep in their nostrils!!??

Yikes!! you mean my son may have been RIGHT all these years?

I did not know you were paying for everything out of pocket. I think you daughter has a ways to go before she will be ready for ERP (from what you describe), but it sounds like she is moving in that direction and a psychologist can help you to do things at home in the meantime. Yes - get with a PANDAS psychologist who can do ERP if you can. Try to get an appointment now as it may take a while to get one. You can also make an appointment with a PANDAS psychiatrist (as that may also take a few months to get) and then cancel if you need to. Is your daughter receiving any services through your local mental health agency (county or state agency). She may be able to qualify for a medicaid waiver depending on the state you live in - and that could help pay for some of the local professionals at least.

Wilma - you seem to be on the right path!! I would make an appointment with a psychiatrist who specializes in PANDAS. It will probably take a month or more to get the appointment, and the PANDAS psychiatrist will speak the same language as you local psychiatrist, so the PANDAS psychiatrist would be a good person to consult with. You also need a local psychiatrist - so keep the one you have IF he/she is willing to work with a PANDAS expert. If he/she is NOT willing to work with the expert then I would look for another doc. I was thinking about the team analogy I made in anther post of yours - Yes, we have to draft the best members of our team from around the country, and we have to act as coach to make sure they all communicate and are heading toward the same plays - but we also have to use these all stars to help train the farm team (our local docs and therapists) so they can be strong members of the team too!