sandree

There also was an insect bite before that, I think a tick that did not really heal for a couple of years. No rash around that. Would get irritated and a scab would form and fall off. Has finally healed now. Had another insect bite before that and had hives daily for at least a month. Before that had strep, and was given penicillin and had a rash from the penicillin.... Who is the homeopath that you work with? Sandy

When my daughter went dramatically downhill, it began with severe stomach pain, not throat pain, and at that time the pediatrician suggested we should stop gluten. We did that, then saw gastro (unfortunately in the wrong order). Gastro said to start gluten again so he could test for celiac. At that time when we started gluten again, I remember stomach pain with a small, red raised rash, I think on her arms. Now I wonder if that could have been strep without the throat symptoms and because we were focused on the stomach issue, no one tested for strep. Because she did have all the sensory sensitivities and black rage begin at that time and eventually was diagnosed with Aspergers, OCD, sensory sensitivities.. Gastro found nothing with testing. She has improved a lot with homeopathy but the OCD persists. This mention of it receding with getting sick is really the only thing that has impacted it. Makes me think... Sandy

Hi, I am am a homeopath with a daughter diagnosed with Aspergers and OCD. Quite a while ago, I ruled out PANDAS for my daughter because there was no clear connection with strep but I continue to wonder about that. In the last couple of weeks the whole family has been sick with something viral, and I think that my son and I have had strep. Jaime rarely gets sick and usually only very mildly even when the rest of us are more seriously affected. This time she got a head cold, pretty mild, but she said that her OCD was improved during her cold. So, once again, I am wondering if there is a connection with infection. That when her body mounts a normal immune reaction, it I proves the OCD? What is the meaning of feeling improved during a virus, and what would that indicate about possible PANDAS etc? I am treating myself with a very aggressive homeopathic protocol that A.U. Ramakrishnan, a homeopath from India proposes for strep (strep nosode plus high potency Sulphur homeopathic). I am already feeling improved. I think I have had a lingering infection from a couple of years ago as I have an enlarged tonsil that has never gone away since I had tonsillitis at that time. I am just trying to figure out if my daughter's response would warrant trying this protocol with her. When she was tested for strep quite a while ago, the tests were negative. Thanks for your help. Sandy Seaman

I have definitely seen some very quick and dramatic changes. My daughter has had very bad sleep problems - with her sleep completely reversed - with her latest remedy, the sleep flipped around in about 2 weeks. Some other changes have been very slow and two steps forward, one step back. I believe OCD is considered a very difficult condition to treat and the treatment would be expected to be slow and take quite some time - often with different remedies being needed at times for different layers of symptoms. Because OCD is not easy to treat, I think it is so important to find a good homeopath who has experience with miasmatic prescribing (prescribing for what we might call genetic predispositions). Sandy

Hi Gayle, We are in Reading, PA. I think traditional Chinese medicine and homeopathy have some common ground. Sandy

We are working with a classical homeopath. I am not familiar with the Pleo Sans drops but they seem to be a nosode or isopathic type of remedy. A classical homeopath uses a single remedy at a time, and bases their remedy selection on the individual mental, physical and emotional characteristics of the patient - so 10 children with PANDAS might be prescribed a variety of different remedies (and nosodes) depending on their individual symptoms. A great book that explains classical homepathy is "Impossible Cure" by Amy Lansky. Her son was cured of autism with homeopathy and it does tell that story but goes on to give a really good explanation of how classical homeopathy works and how to choose a homeopath. It's a really interesting read too. Here is a link to an article on a 16 year old with OCD treated with classical homeopathy. Although this boy's remedy was syhpilinum, not everyone having OCD would need that remedy and it is a very powerful nosode so would not be recommended that anyone try that on their own. http://findarticles.com/p/articles/mi_m0IS..._84211150/pg_5/ I found our homeopath from this website. These ladies are all students of Dr. Luc DeSchepper, a homeopath (now retired) who has written many books. He has someone who took over his practice who is also probably very good (Farah Gron). It is better to meet with someone in person but some practitioners will work over the phone or skype. http://www.homeopathyforwomen.org/ There are different ways of dosing homeopathically and our homeopath uses the remedies in water rather than with dry dosing. I like this method as it is possible to adjust the dose very precisely for kids who are very sensitive as my daughter is and you have a lot more contact and give and take with the homeopath with this method. My daughter was fairly healthy though had tons of ear infections/strep several times when she was younger. She was quirky - extremely gifted, had difficulty with transitions, socially inept, adopted). When she hit puberty she developed sensory processing problems, rage, withdrew socially, developed OCD, eventually became unable to do school. During that time she did stop having colds, flu etc. It was suggested that she had aspergers but I don't really think she does. When we were on that track we tried DAN and Amy Yasko (buckets of supplements!) and I think in the end the heavy supplementation made her OCD worse. Her body is really sensitive and I don't think she was able to tolerate it - same with medication. Even with homeopathy, we have to give her 1/4 tsp. of a remedy while the rest of us take a 1 tsp. usually. The homeopath sees any kind of discharge - cold, vomiting, diarrhea, even emotional outbursts as positive. The homeopathic view is that the body tries to move disease outward - away from the essential organs of body to protect the organism. So a skin eruption would not be as serious as asthma and the mental level would be considered the most serious impairment of a person. The example would be that a person can function pretty well having lost a finger or even a hand, but if they are impaired on the mental level, they lose much more ability to function. OK - I will stop now. I have become so fascinated with all this that I have recently enrolled in a school for homeopathy. So I could go on and on... Sandy

Hi, My daughter, 16, is being treated by a classical homeopath. I thought I would check to see if anyone else is going this route. It would be nice to compare notes. My daughter does not have a formal diagnosis of PANDAS but I suspect that is an element of her case. She has sensory processing problems as well as contamination type OCD and had completely messed up sleep. She was sleeping all day and up all night. She is not doing any school at this point. We are in month three with the classical homeopathy. Her sleep has recently flipped around to normal so that is a wonderful positive. Her raging had stopped but just this week she got a cold and has had 3 OCD/rageful meltdowns. I am thinking the cold is the trigger. The homeopath is pleased that she developed a cold as she sees this as the body fighting back (she had not had any colds/flus for years). So far - I am very hopeful with the homeopathic treatment. Anyone else out there trying this? Sandy

My daughter is 15 now and I did not keep good records but I now believe that when she was 5 and had the chicken pox vaccine was the same year we began to see a child psychologist because her tantrums were so intense and scary. The psychologist did not want to see my daughter (which I still think is very strange) but just taught us to put her in time outs (very ugly). I do remember her commenting that my description of Jaime's behavior was very unusual and she had never heard of a child acting like this. That she would not see Jaime in person still bothers me. I actually called her office to try to get a specific date for our first appt. to see if it was near the vaccine but she never got back to me. Sandy

Yes - she had a throat culture which was negative. After reading the requirements for PANDAS over and over, I think I am just going to give up on it. I don't think we have a clear connection between strep and the OCD though I do think she has viral/bacterial issues. Maybe in the future, they will find that many neurological problems are connected to an impaired immune/methylation system. Sandy

Thanks, Susan - so maybe we just need to keep at it - adding it in very slowly. We are on our third different brand of Vitamin D now and she seems to react to them all. Sandy Hi Sandy, I don't know if this will be helpful but I thought I'd mention that I had a very hard time myself when I started vitamin D supplements due to low vit. D numbers. I was very low and started mega doses. It gave me horrible headaches and I would feel like I could not breathe. I had to try 3 different types of vitamin D and work up slowly to be able to tolerate it. Now that my numbers are good, I can take any vitamin D with no trouble. Just a thought for you anyway to maybe try a different type or brand? Unfortunately I don't know the differences between what I originally took and what I ended up with. They were prescriptions. Susan

She does not have tics although just lately she started to spit a lot. The drops are called Vaccistat and Neurostat and were recommended by another mom. Yes - I do think we should find a homeopath if we decide to continue with this. Sandy

Hi Everyone, I am mom to Jaime, 15, with severe OCD. We have tried to investigate the PANDAS connection but titers have been low and no positive throat cultures. She has not had a bout with strep for quite a few years - in fact, has not had a real illness for years. But I do think her OCD is related to viral or bacterial issues because she always has so many physical symptoms along with her OCD behavior as well as sensory problems. We have done many supplements in the last two years and she reacts strongly with detox symptoms to many of them. We recently tried some homeopathic drops for viral issues and she immediately responded with detox symptoms (headaches, nausea, eczema on her face, stomach pains, itching). She does not develop a full blown illness but just has these ongoing symptoms that come and go. I have heard of PITANDS but have not seen much about it. She is also, perhaps, too old for the PANDAS diagnosis. I keep thinking that IVIG would probably be of great help to her but I don't feel we have the testing to prove it and don't know where to get testing to prove that this might help. Our local doctor is of no help with all of this. Any thoughts? Sandy

My daughter just recently starting spitting. She also is spitting on things to sort of "decontaminate" them but she also seems to have a lot of spit/mucus. We have sort of ruled out PANDAS as she tests negative but I still think her OCD is related to something - probably something viral. We tried 2 homeopathic remedies for viral issues - Vaccistat and Neurostat and she immediately got symptoms - headaches, nausea, eczema on her face, worse behaviorally. We only made it about two weeks and then she refused to take it. This week after stopping the drops has been a bit better for her. I do think they were helpful. But only confirms for me that her problems are viral or possibly bacterial. Is there a doctor or a test who could confirm chronic virus? She has not shown anything on the strep testing we have done. Sandy

Has anyone had their child react by detoxing and looking very ill when supplementing with vitamin d? My daughter is very low in vitamin d and we have had a very hard time supplementing with it. She always looks ill, pale, eczema appears on her face when I introduce vitamin d. She was on 1000 ius for a while (it took a year to work up to that) but we took a supplement break due to severe OCD. Now that we tried vitamin d again, we are right back to her looking very ill from it. I used to think this was just because her body really needed it, and when given her body would start to detox. Now I am just wondering if she really is intolerant to the supplement and we need to use a sun lamp as she will not consistently go out in the sun. Sandy

Hi Diana, Thanks so much for all the information. I am still very unsure of whether my daughter would fit the PANDAS criteria. She is also 15 and I know somewhere on Dr. K's site I found a list of symptoms for adolescents and she seemed to fit a lot of those including her problems starting with gastrointestinal problems. Now I can't seem to find that list again. We are currently having an ASO titer done. Jaime has not been sick (as in respiratory, strep etc.) in years as she has been doing school at home for 3 years (due to sensory problems) and does not come in contact with a lot of kids who are sick. But she always looks sick and has tons of somatic complaints, sleep problems, severe OCD that, I believe, intensified dramatically before Christmas when her brother was ill with a virus so that she is now on a medical leave of absence from school. Perhaps I should contact Dr. K. Just not sure as I don't even think we can afford to do the IVIG. If the ASO titer is high, our family dr. may prescribe zithromax and maybe that can give us an indication if she responds to that. Sandy

It seems to me that when I accessed the NIMH site a while ago - probably over 1 or 2 years ago regarding PANDAS, they mentioned antibiotic treatment and even IVIG as possible treatments. Now when I visited their site, it says that PANDAS should be treated exactly as regular OCD with CBT and an SSRI. They say they are studying antibiotic treatment but have no conclusive evidence. About IVIG they say there was a study done that showed improvement with IVIG but that it has great potential risks and should only be used in the most severe cases. Do you think they have changed their stance on this issue? It also says "PANDAS studies are no longer recruiting patients". Does this mean that they have stopped researching PANDAS? It seems that there is a lot of anecdotal evidence that Zithromax and IVIG work for PANDAS/PITANDS but I am unsure how to determine if these things are safe. So tired of trying to figure out if I am on the right track or not. Thanks, Sandy

Thanks, Malcom. Neurofeedback is on my list of therapies that we might try. Sandy

I am in Reading, PA - about an hour from Philadelphia. Thanks, Sandy

Hi Melanie,"She is very complicated and has very bad sleep problems at this point. She sleeps most of the day and is up most of the night. I just tried confronting her about it again yesterday and the rage starts immediately. I know that she tried last night to go to bed earlier but I believe it still took hours for her to actually get into bed. Her OCD is now tied up with sleep somehow. She does not have seasonal allergies though at the beginning of this journey she had chronic hives for a time. Basically, she is very gifted, has asperger traits, severe OCD, sensory problems, adopted internationally premature with a two month stay in a hospital at birth - so there are many factors happening. We are seeing a functional neurologist whose outlook is that the left and right brain are not functioning correctly - in her case the left brain and left cerebellum are very weak which does impact digestion and immune function. She is supposed to be doing exercises to strengthen the left brain and cerebellum (similar to the book "Disconnected Kids") but she can't do the exercises because of the OCD. Just thinking that if antibiotics could relieve the OCD a bit, she might be able to work on the exercises to get at the real crux of the problem which I think is impaired neurological functioning due to genentics and her early infant experiences." I feel very similar to you in that everyone we go and see has a different opinion and most say this or that will help and for the most part, none of it has. We tried Zoloft for three weeks and Luvox for one day. She reacts really badly to medication so I am staying away from it. Recently she has been on a Theramood patch (5 HTP & theanine) and heavy doses of inositol. Might help a little but she is now refusing to take it. I think the serotonin does not work for her - she gets more depressed and agoraophobic on it. It is very frustrating. I will let you know if we ever get anywhere with the functional neurology. At least the book "Disconnected Kids" really describes her to a T. Now - whether the therapy will work - or if she can even do the exercises - we will see... Sandy

Hi Caryn, We started this journey focusing on her Asperger's syndrome. At the beginning of our journey she had gastro problems, the pediatrician suggested trying gluten free and it helped her stomach immediately. Then I started reading autism forums, and added the CF part. She is very rigid about sticking to the diet as she is afraid of the stomach pain and is kind of rigid anyway because of aspergers. I am also GFCF as I had Enterolabs testing done and was positive for gluten and casein intolerance as well as having the genes for gluten intolerance and celiac. But my daughter is adopted so that is not a clue to whether she is truly celiac. She was gluten free before the gastro suggested testing for celiac and she was unable to challenge with eating gluten because she felt so bad when we added it back in that we have just stuck with the diet and don't have definitive testing on celiac for her. The OCD developed later when we were doing tons of supplements (the Amy Yasko protocol) to detox her from heavy metals, virus and bacteria. We are taking a supplement break because of the OCD and the cost of the supps she was on (I have just run out of money for that protocol which is very expensive). The OCD has really become the most debilitating part of what goes on with her. She is very complicated and has very bad sleep problems at this point. She sleeps most of the day and is up most of the night. I just tried confronting her about it again yesterday and the rage starts immediately. I know that she tried last night to go to bed earlier but I believe it still took hours for her to actually get into bed. Her OCD is now tied up with sleep somehow. She does not have seasonal allergies though at the beginning of this journey she had chronic hives for a time. Basically, she is very gifted, has asperger traits, severe OCD, sensory problems, adopted internationally premature with a two month stay in a hospital at birth - so there are many factors happening. We are seeing a functional neurologist whose outlook is that the left and right brain are not functioning correctly - in her case the left brain and left cerebellum are very weak which does impact digestion and immune function. She is supposed to be doing exercises to strengthen the left brain and cerebellum (similar to the book "Disconnected Kids") but she can't do the exercises because of the OCD. Just thinking that if antibiotics could relieve the OCD a bit, she might be able to work on the exercises to get at the real crux of the problem which I think is impaired neurological functioning due to genentics and her early infant experiences. Whew - so there we are - still not finding many wows for her. Thanks, Sandy

Hi, My daughter has severe OCD and we had some strep testing done. I believe it was a throat culture and DNASE. Both were negative but I am just not sure that we have explored this option enough to put it to rest. She has not had any obvious cases of strep for years though she used to get it. She has a lot of rage and I believe her immune system is not working well. She has also been diagnosed with aspergers and sensory processing disorder. All this happened at about 12 years old and she is now 15. We have been doing a biomedical program for 2 years and she has been GFCF. The OCD developed about a year ago and before Christmas it really intensified to the point that it is now her dominant problem and she is on a medical leave of absence from cyber school as she cannot even do schoolwork any more. I am at a loss how to find someone (especially someone who takes our insurance) who can really investigate this. I am tempted to go to our family doctor (who is probably not even familiar with the term PANDAS) - take some literature along and ask for a round of Zithromax. Would that be a reasonable approach or do I need to find a pediatric neurologist or someone who specializes in PANDAS? Thanks so much for your help. I am really struggling to help this girl - she is so miserable. Sandy

My daughter, 15, has very debilitating OCD as well as being diagnosed with Aspergers. I am actually seeing a therapist who does EFT and have discussed with Jaime that this might be helpful for her. Her response is that she is afraid that the "tapping" involved in EFT will become a part of her OCD rituals so she does not want to do it. Have you ever run into this kind of a response? We have tried so many things and the latest is functional neurology - visiting a chiropractor who works with balancing the right and left sides of the brain. The Dr. gave my daughter exercises to do at home to help balance and create new connections between right and left brain but she is also being very uncooperative in doing the exercises. She almost talks about her OCD as if it is an entity that does not want to go away and prevents her from doing things that might make her better. Very frustrating to work with her. Any ideas? Sandy

We got our test results and the throat culture and DNASE test were both negative. In fact, the DNASE test showed levels appropriate for a pre-schooler and my daughter is a teenager. I am confused. We are going to the psychologist tomorrow and may talk about medication. She really needs some help at this point. Since she also has aspergers syndrome, that plays into it too, I think. Sandy

Well - a little better day yesterday. Erica, we are on so many supplements that it is sometimes hard to tell which one is making a difference. I have been doing a biomedical program with Amy Yasko for aspergers for over a year. It was going pretty well but recently she really developed this OCD so intensely. So we are checking out the PANDAS. But her good days and bad days could be due to other supplement changes we are making. We also added inositol with the 5 HTP. Sometimes it is just very confusing(: Sandy

I buy the empty capsules and divide the 50mg cap into 2 capsules. I spoke too soon. She had a very bad day yesterday. Her throat culture was negative - still waiting for the other test. Sandy