KaraM

I didn't see the show, but just looked at the synopsis page (I was really hoping they had past episodes online, but it doesn't look like they do). It looks like they had several segments including one on PANDAS and a separate one on Tourette's. The synopsis for the Tourette's segment mentions a person who was able to gain control...I wonder if that's the part your mother saw, and not the segment on PANDAS.... Frustrating, though, if they didn't mention PANDAS as a possible cause of tics/Tourette like symptoms on the segment on Tourettes... Here's a link to the synopsis. http://www.thedoctorstv.com/main/show_synopsis/875?section=synopsis .

Bumping one last time. It looks like we will have an acupuncturist there as well as a guest speaker.

Bumping one last time. It looks like we will have an acupuncturist there as well as a guest speaker.

So is Cefprozil in the Omincef family??? My dd improved only slightly on Omnicef. It wasn't until we started Zithromax that she truly started to improve. Different abx work differently, so maybe trying one that goes intracellularly would help.

I sent you a PM with some more names. Someone mentioned anti-inflammatories...I'd echo that and add Advil/Ibrofin to the list she suggested. Some have found a little relief with Inositol. It's basically vitamin B-6 and is supposed to help with Seratonin levels (like and SSRI). It is water soluble, so anything the body doesn't absorb will be eliminated. You can get it at whole foods (in the supplement section...Jarrow brand...I think where the liver support supplements are found). It can make you gassy, so start small. It has a very slight, sweet taste and can be put in juice or water. I can send you some article on it if you want (just email me your email address). Hang in there. I remember very well those desperate days. It's one minute at a time. Are you tracking symptoms using some sort of journal/chart? I suggest doing that as well, so you can see for yourself and show a doctor if there is a trend building (especially after starting treatment). All the days start to run together otherwise. I can send you a sample chart as well. Kara

My daughter was able to hide things at school as well. The teachers knew what was going on at home and were supportive, but they said you would never know at school. There have been discussions on the board about this before. Lots of kids hold it together in front of others, then let it all out at home. Did your Lyme test list any specific band numbers? Which test was done? The ELISA or a Western Blot? I'm sure you'll get some questions/responses on the Lyme Board as well. If it was just the ELISA, that is a screen and can get false negatives and false positives. It's not very reliable. The Western Blot tests for antibodies to several different protein bands, each with a different number. So you may see numbers like 41, 39, etc. Some of the bands are specific to the Borrelia bacteria (i.e. Lyme), others can be found in other bacteria as well. If you test positive to one of the bands that is specific to Borellia, some LLMD's will say that means you've been exposed to Borrelia. Others say you need more than one band... In the end, it's a clinical diagnosis based on symptoms and bloodwork combined.

Actually, it was my daughter. Her Lyme test was negative, but Bartonella and Ehrlichiosis were positive. She has improved with treatment. We basically just added Bactrim to the Zithromax we were already giving. This was at the end of March. She is doing really well right now. It took a while, though...The first month was full of herxes. But with each herx, we saw improvement as well.

Bumping as a a reminder...

Bumping as a reminder...

With us, he prescribed an initial prescription of a combo of anitbiotics to tie us over until we could see an LLMD. He referred us to Dr. J. in New Haven. So for us, he didn't treat the Lyme. He helped test for it, then referred out. Kara

I guess my dd's don't really look like these images. She doesn't have a raised, red or sanpapery rash. She just has 3 or 4 random white head like pimples. Just on one arm, too. I'm not overly concerned, I was just wondering if others have experience the same thing. Thanks, Kara Keratosis Pilaris- very common malady from toddlers to teenagers. Often gets better after puberty. Doubtful it is from "toxin release." Gets worse in the winter with dry skin- better in summer from humidity. Here is good link for how to treat. http://www.medicinen...ris/article.htm

No I haven't...but thanks for your reply and bumping it up. Anyone have experience/knowledge they can share on this?

Please see my post in the post about negative Igenex testing. We did do the steroid burst for 21 days. It didn't really help, but it didn't seem to hurt that much either (although, I am now remembering she got the stomach bug during it...don't don't whether that would have happened regardless given that it was going around the school at the time). After no improvement on the steroids, we did IgeneX. She clearly tested positive for Bartonella. Lyme results were "negative." So again, if your child is not getting better, keep digging and make the best decision you can with the information you have.

I'm recalling the article in the International OCD Foundation's journal, posted a few weeks ago. In that, it was stated that the term PANDAS has been changed to PANS (Pediatric Acute Onset Neuropsychiatric Syndrome) to account for the fact that several other infections can result in sudden onset OCD, tics, etc. PITAND would indicate that as well. So my feeling is we are all in this together regardless.

My dd was diagnosed with PANDAS in spring 2009. At the time, Dr. B. had tested ran an ELISA and Western Blot through a standard lab and the results were negative. She was put on Zith and responded well for about 6 months then declined, we thought, due to strep exposure in her brother. After clearing him with no improvement in her, we tried the steroids. She handled them well, no agression, but her OCD did not improve (she was just a happier OCDer). Anyway, Dr. said test through IgeneX for both my (nonPANDAS?) son and daughter. My son's IgeneX for Lyme came back CDC and IgeneX negative, but positive by later LLMD's interpretation. (I say nonPANDAS, because he didn't have any tics or OCD...but I must say there was fatigue and emotional lability.) I'm digressing a bit, so getting to the original question, my PANDAS dd was negative on all IGM and IGG IgeneX bands, with the exception of 41. She was indeterminate on one and ++ on another. She did, however, test positive for Bartonella. At the end of March 2011, we started treating for that with an additional antibiotic. She has improved slowly, but continuously (with some initial major herxing). She is doing , really, really well right now (thankfully). The LLMD we saw said the combo also worked for Lyme, so that comforted me a bit given all I read about it being possible even with negative testing. An interesting side note, though. A week or two ago I looked back at the original Western Blot ordered by Dr. B in 2009. Even though it was negative, there was one of those bands that is considered "specific" to Lyme that showed up. Just one, though. I imagine some LLMDs would say this was Lyme and others would say it's not. I just found it really interesting. Did the year on Zithro prior to the IgeneX testing cause that to go away? No idea. Unfortunately, I don't think any of it is straightforward. I have to agree with the recommendation that if your child is not getting better, keep digging. Sometimes the path to follow will be clear, but most often a difficult decision will have to be made. In hindsight, with the info I have now, I would not have done the steroid. However, I must say that with the information I had at the time, I made the best decision I could. So I don't regret it. And I would make the same one again if that was the only info I had... See what your IgeneX results say and then make the best decision you can with the information you have. Best wishes, Kara

Hi, I know antibiotics should not be put in warm beverages, but can activated charcoal. I read somewhere (don't ask me where) putting it in warm water can help with gas. But what about things like hot chocolate? Would the heat somehow change the composition and/or effectiveness? Thanks, Kara

Hi, I noticed LLM's comment in another post about how sometimes white pimples will show up on the backs of the arms or legs as toxins are released. My mouth dropped when I saw the post, because this has happened to my daughter but I didn't make the connection. (LLM, I always learn something when I read your posts...thanks!) How many others have experienced this. My daughter's have been there for a few months now. How long do they take to go away? Is there something to help? Just regular topical acne cream?? She really does not like them there. Thanks, Kara

I've also heard of a couple of other remedies...but can't say I've tried them. I've heard that oil of oregano is very effective and can help within a couple of days. From: http://www.wildoiloforegano.com/index.php?page=usage Warts can be treated by applying the Oil of Oregano directly to the wart with cotton wool. It is best to leave the soaked cotton on the wart as long as possible by taping with adhesive. Repeat this 2 or 3 times a day and take 3 drops under the tongue three times a day for a few months. Planter's warts can be successfully removed in a few days by applying the oil directly to the wart several times daily. It may help to break the surface of the skin to allow the oil to penetrate to the root of the wart. Oil of Oregano is also supposed to boost the immune system, but my feeling is that would be if you take it orally (so maybe you could skip the under the tongue part...). I know I've seen treatment without that recommendation. A friend of mine also said green banana peels helped her daughter...taking a small piece and covering the wart overnight. Here's a link: http://wartsguide.com/banana-skins-as-a-wart-removal-therapy I'm thinking these are both pretty benign approaches you could try before giving another medication that may possibly interfere with PANDAS.

Hi Jay, I'm going to take a stab at this even though I know there are others both more knowledgeable and more articulate than I am. Antibiotics are a tool to help treat both a strep infection (PANDAS) and Lyme. However, not all antibiotics work the same way and not all people respond the same way to the same antibiotic. Different bacteria also respond differently to different antibiotics. For example, some antibiotics, like Zithromax, go inside the cells. So if that's where the infection is, then an antibiotic that can reach it will be more effective than an antibiotic that does not work intra-cellularly. Similarly, if the infection is in the brain, then (I think) you need an antibiotic that can cross the blood brain barrier. With Lyme, too, there are often several infections at play (co-infections). So often, in addition to the Borellia bacteria (a.k.a. Lyme), Lyme patients are often times infected with other tick born diseases such as Babesia, Bartonella, Ehrlichiosis, Ricksettia, etc. So you often need more than one type of antibiotic at the same time. For example, my dd has PANDAS, Bartonella and possibly Lyme, she is being treated with Zithromax and Bactrim. As for the testing, what constitutes a positive of negative test is very controversial. With Borrelia, there are many different protein bands that the tests look at. Some of those bands are specific to Borelia, others can be found in bacteria other than Borrelia. Some LLMDs will say that if you show antibodies against even one of the bands that is specific to Borrelia, then that indicates exposure to the Borrelia bacteria. The CDC says you need to show antibodies to at least five of the bands (some of which are specific to Borrelia and others that are not), to test positive for Lyme. So if you do a standard Lyme test and only show antibodies to two or three bands, then your test will say negative. You may want to post this question on the Lyme board to get some more input. This is my first time trying to actually write a response to such a question. If anyone else wants to chime in and tell me if they understand things differently or has more to add, please do. Thanks, Kara

Wow. Emmalilly, this is just warming my heart right now. I am so glad for you. You were suffering for so long. And I am so proud of/for you. You really educated yourself and advocated for yourself. You are very strong and inspiring young woman. My warmest wishes for continued health, Kara

We did have a period (albeit shorter) of major rages when we started the Bactrim/Zith combo for Bart. When that went away, yes, major, manic, hyperactivity. This lasted a few days, then went away. We kept having these three or four day major herxes of one symptom, followed by a few days of relief, then another major herx of another symptoms. So OCD intensified, then rages, then hyperactivity, then depression. After about 4-6 weeks, these super herxes have gotten increasingly shorter and less intense. They were always followed by some sort of improvement though.

If possible, I always have at least one other person there...preferably my husband. I want my husband there to hear the doctor for a couple of reasons: one, so he understands more about the disorder, and two, because I think it's always good to have a second set of ears and a second brain to think of questions. When my husband has not been able to come, I've been fortunate enough that my mother has been able to come along. However, instead of being a second set of ears/brain, she was a second set of hands that could stay with my daughter in the waiting room while I spoke with the doctor alone. Ideally, it would be nice to have three people: two for conversation with the doctor and one to stay with the kids in the waiting room. I know...it a little much if you have to travel any distance. Is there anyone that can go with you besides your husband if he can't go?

Hi, I know I sometimes don't realize I have a PM for weeks after it was sent. I hope you don't mind my pointing out the PM I sent you. Trying to help out someone else in the VT area... Thanks, Kara

Hi, We will be holding our third or fourth PANDAS/PITAND/PANS support group meeting on Saturday, Nov. 5 from 1:30 - 3:00. If you are interested in joining us, PM or email me and I will send you the address. We are trying to line up a guest speaker to talk for 30 minuets or so. Potential speakers include a medical psychiatrist or an acupuncturist. Best wishes, Kara

sorry...messed up the title