Dedee

Hey guys, This is the same discussion that just went on under Omegabrite below regarding fish oil. Dr. Murphy at Shands clinic recommended Max EPA fish oil for my PANDAS son. The details are in the link below. Dedee

Michele, I think you will be pleased with the way Dr. Murphy will work with you. She seems to know so much about all the different aspects of medicine that can affect children. I suppose that would be the research side of her work coming out. I am waiting with baited breath to hear about your appointment. Good luck and God bless. Dedee

I can only respond quickly. My son who has PANDAS has done much better after finally having his tonsils removed at age 11. He has been diagnosed with PANDAS since 5. His OCD has been an issue since age 5, but the tics did not show up until he began having recurrent strep infections around age 10 and 11. That is when we decided to have them out. He has also been on antibiotic therapy since that time as well. So it may be difficult to say which has helped the most. I personally think it is a good thing. Just my two cents. We didn't have pre titers to compare to but my sons titers are still waaaay elevated. Who knows what they were before. Good luck on your decision. Dedee

Emma, I really can not remember which of the Nordics we used. I only used them a couple of times before I realized I needed to find a less expensive brand if I was going to give them to everyone in my household. I currently use the NSI "Mega EFA Omega 3 EPA & DHA". The bottle says only one softgel per day, but in our family the adults take four a day, the kids take two or three a day and my 4 year old takes one (I spuirt it out and she takes the liquid). I can tell a big difference in my PANDAS son. Only a little difference in my middle boy, although he may need a little more since I cut him back to two a day. My friend who has a son with OCD has seen big changes with her son since starting it as well (he is on 4 daily since he is 13). I think I finally got the previous post fixed to access the website for the article. It is interesting. Let me know if you get results either way with the fish oil. It is interesting stuff. Dedee

Hey Guys, It was me who discussed the fish oil and the ratio of EPA to DHA. Dr. Murphy told us not to give my son any supplemental omega 6 at all and to use the 2:1 ratio. I have recommened before the Nordic Naturals as that is what is used in most studies. However I use the NSI brand from Vitacost.com, because it is a bit less expensive and I have researched it and found it to be, in my opinion, up to the same standards. I don't have much time now, but I am going to try to post an article that explains about the fish oil and why the ratio is so important. Good Luck. Dedee Literature review of essential fatty acids

Wow, I am so glad to see that you had a positive experience at Shands as well. Dr. Murphy is so awesome! I think in regards to the fish oil it may depend on the age of the child as well, depending on whether or not they can swallow a capsule or not. We have used both Nordic naturals (which is used in most studies) and NSI brands. My son can easily swallow capsules though. I can feel your relief in your writing. It is so good to finally see a doctor who doesn't think you have lost your mind and looks at you like you have grown another head :-). I just wish there were more like her out there. She was even able to help me with my other son who doesn't have PANDAS but who tends to have OCD tendencies. Just gave me a few pointers and explained a few things that made so much more sense. All I can say is God bless her and I am so happy for you and I can't wait for Michele to get back! Dedee

Michele, That is awesome that you have an appointment so soon. I can't wait to hear how it goes. To answer your question, we use NSI brand of Fish oil and I get it online from vitacost. I started off using Nordic Naturals because that is what is used in many of the studies done on children. I was very satisified with them, and only switched because of price. I have my entire family, 3 children and 2 adults on it so it can get a bit costly for us. If I was only giving it to one son I would probably have stayed with the Nordic just for the peace of mind knowing that is what was chosen for scientific studies. However, I researched the NSI brand thoroughly and found it to be very good as well and a bit less expensive. I had actually talked to Dr. Murphy about my other child (who wasn't with us during our visit), and his OCD tendencies, and some of his behavior that was becoming a bit PANDAS acting. She had recommended that I start all of my kids on the fish oil, so that is how we got to the family plan. I give my oldest son who has PANDAS and is almost 12 years old and weighs 135 pounds, three capsules daily. The bottle will say to only take one, but the studies give much higher doses. I started off giving him four for about the first month till things settled down, then I cut back to three and he is still doing fine. I take four a day myself and I can tell that I feel so much better. As for the probiotics, I also use the NSI brand for that, although there are lots of people here who use other brands successfully. I just chose that so I could order it together and because it has all of the appropriate strains that he needs. Seems to be fine. I have all the children on it. My son is doing fine. I knew that school would be the defining time for him. So far, and I hold my breath, everything is going well. He did very well the last few months of last year as well. All I can do is thank the Lord, and keep a close eye out for changes. We haven't had to call back to Shands yet for anything except to remind them to send the follow up letter to my pediatrician. As usual, they were extremely nice and apologized that it had not been done. I think you will be pleased with your experience. I really do not know how she will react to the whole DAN doctor thing. I personally don't know much about it either. I guess that is the only thing we didn't do. Although I would have if I needed to. She is so very nice and seems open minded, I can't imagine she would ever be rude. Please let me know how things go for you after you get back. Hope you get some answers. Dedee

PANDAMOMMN, First let me say that this is a terrible case of PANDAS and I do believe that your son has been very terribly mistreated by the health care system. This is what happens when the phsychiatric community does not fully understand an illness. I suspect that you and your husband have also been traumatized as well. What a horrific thing to watch your child suffer through and then to suffer again at the hands of those you trust to help him. I can not imagine what you must be going through. Have you heard anything back from Dr. Swedo? Will she be able to see him as a patient? Let me say that your son is so very lucky to have both you and your husband as parents. It is obvious that you both are very dedicated to him and to getting him the best of care. That is great! As for your pediatrician, if at all possible, I would drop him like a hot potatoe. Seriously, unless for some reason, there isn't another pediatrician anywhere near, the last thing you need is that negative type feedback. This is no time for sentiment, your sons life is seriously in jeorpady, we can only choose those who are on our side, so to speak. Next, I would never, ever, unless I truly believe him to be suicidal, take him back where they tied him down. Obviously, you have figured this out. In regards to the medicine, my son also takes citolapram (aka, celexa). Yes, his psychiatrist does say that it often works best in this situation. He did take Zoloft for a while, but after his second flare up of PANDAS related OCD, we had to switch to citolapram. For a while he took as much as 40mg. Since he as started to improve, we have decreased his dose down to 20mg and I am considering going down to 10mg. I absolutely did not like the idea of medication either, but my son did not eat for two days, and as you said he was washing his hands till they bled. At the beginning, the teachers could not teach class for his constant worries. It was just something we had to do so he could get back to "normal", then we worked on the cause. When the tics came along, it was somewhat different and we decided not to go the medication route. I think in your situation, this is such a life altering event, I would try the medications if it would help. For severe OCD, it often makes a huge difference. In addition, I would also try to address the cause, which of course is the strept. Since this is such a severe case it would be best to try to do this with an expert such as Dr. Swedo. My first instinct is to suggest antibiotics, but just bear in mind that there are a few cases of PANDAS (and it is concerning since Evan is so extreme), where the child actually will get worse on antibiotics. I am not sure why this occurs, but there are a few situations when this happens. Some on this forum have experienced it and my sons doctor mentioned this rare event as well. I am extremely concerned for your family and for the well being of your son. You must get proper guidance from a PANDAS specialist for his treatment. I do not feel anyone else can help you. I realize there are others out there who say they know the disease and believe they can treat it but believe me, I have been to these doctors and I have been to the true PANDAS expert, there is no comparison. I can only shudder to think where we might be had I not pushed forward. And let me say that Evan is much more ill than my son was. I can feel your pain in your writing, and I am so sorry that your family is going through this. It is hard to understand why your child must suffer this way. I will pray for Evan and your family. I know that he will come through this and you will get your little boy back. Take care of yourself and be strong for him. Peace and Strength - Dedee

Michele, Yes, my son does have relapses when he is exposed to others with strept, even when he doesn't actually get it. He has not gotten strep since he had his tonsils removed last Dec. His flare ups, the doctor believes, are from exposure to others when they have it. Thank goodness since we have had the tonsils removed and subsequently started him on antibiotics, he has been very healthy. Only a few sniffles here and there. His flare ups are very mild, usually including some night time fears, causing him to want to sleep in our room. Also, I will notice a few eye blinks and head turns that most folks wouldn't even pay attention to. He may mumble some under his breath, those sorts of things. It is just enough to scare me that it is all coming back. I usually start with epsom salt baths or increase his cal/mag or something and eventually, maybe in a week or two they will slowly go away. It's never enough to really cause problems, only anxiety for me. I don't think he has issues with viruses, but maybe just haven't put it together. He is sooooo much better since the tonsils came out and we started the amoxicillin. Not sure which it is or both, but I am so glad that our life has turned around and he is smiling and making good grades and good friends again. I do not know anything about DAN doctors. Many here do, and have good experiences and may give you input. I can not offer any advise on that. We did go to a ID before we went south, and the ID was absolutely no help what so ever. Now, they are all different. Ours just did a throat swab, said he was negative and brushed us and PANDAS off. She said she had heard of it and he probably did have it, but she wasn't giving out any anitbiotics to someone who didn't have a current infection. It was more frustrating than anything. Our neurologist basically said the same thing. So you can see what a relief it is to finally find a doctor that listens to you and agrees with you and even offers up information and a treatment plan for your child. Do not give up, this is a knowledge deficit issue with most physicians, and it is really hard to tell a specialist that is "top" in their field that maybe they don't know everything. Best to just move on to the real PANDAS pro's. There are a handful scattered around the country, all very good, but unless you are fortunate enough to live in the right state, you have to travel. Hope the info is helpful. Keep us updated. Dedee

Michelle, No, it was not really hard to get in. When I called, they put me on a waiting list for an appointment and told me it would be two to three months. After about 10 or 11 weeks they called back and gave me an appointment for one month away. I think they had one sooner but we couldn't get there then. I gave them all the insurance information over the phone and called my ped. and asked them to fax a referal and my sons records down. We went down the day before and spent the night, had an early morning appointment. We saw her "assistant" first who is only a psychiatric resident. Don't let them worry you. The one we saw knew little about PANDAS and kept telling us all kinds of things that was wrong about antibiotics and so forth. When she came in, she corrected him. She did suggest we leave him on amoxicillin 250mg twice daily. She preferred that to Zithromax if the child is doing well because she said that they get less resistance to the penicillins. She has seen quicker resistance to Zithromax, but said we can go to that if the amoxicilling stops working. I had a very detailed history of how well my son does on antibiotics and how his symptoms return when we stop the antibiotics. I had made a spread sheet with dates and symptoms because my doctors had insisted that we stop my sons antibiotics several times and he had gotten so much worse, so I documented it. She said that was very helpful to show a trend and kept it for his chart. My son has also been on low dose Celexa for his OCD for several years. We were simply unable to control it any other way and he was absolutely not able to function in the real world. This was a life saver for him. When he was first diagnosed with OCD at age 5 after a strep infection, he took a very low dose of Zoloft. That worked well for several years until he had another strept infection and his OCD went into overdrive and we could not get it under control with any amount of Zoloft. That was when we switched to Celexa. It only took a small dose and he was back to his old self. Then when he was 11 he had a series of strep infections that set of the tics and mood changes. It was such a nightmare. I am so blessed that people here helped me find the guidance I needed and pointed me in the right direction. The only other things the doctor suggested was a good vitamin (which he was on), and the fish oil. I do however, give him cal/mag, and occasionally epsom salt bath as I am a true believer in these supplements. Michelle, my heart aches for you and your son. If he can not enjoy being a little boy, he really needs more intervention. I do not think your doctor is being aggressive enough. I can tell by your posts that you are working hard to find the answer for your child and I believe that you will. A mother must fight for her child. It may not happen over night but it will happen. I hope for your sake and for Andrews that it is soon. Please take care of yourself. Let me know how he is doing. Praying for you - Dedee

Michelle, Wow, your son is really having a time. I am so sorry. It sounds like he is such a classic case of PANDAS. When I took my son to see the specialist in Florida, she described my son to a tee. She discussed his intermittent issues with frequent urination. She believes that he does this after a Strept exposure whether he actually acquires the illness or not. In the past, only once, he did the thing with his fingers. It was during a strept infection and it stopped after about three weeks. She said this was a classic PANDAS symptom, that almost all PANDAS patients will do this at some time. In regards to his repeating words and sentences, my son does this off and on also. She said it was a type of tic. He mostly does it during times of stress and I notice that his facial tics are more prominent during those times as well. Usually, as long as he is on his antibiotics he does well. However, there are still rare times when he will have a week here and there when old habits will show themselves and them slowly disappear. It's a terrible illness. I will pray for you and your son. Take care of yourself, so that you can be there for your family. Dedee

I just wanted to add that as the previous poster said, even though he is covered by antibiotics he can still get strept. So I would get him tested. Also, a couple of things to consider: of course one is just the stress of starting school. Another is that your son could have been exposed to strept without actually acquiring it, and still cause an increase in his symptoms. My sons physician said that some of his on again / off again issues are related to him being exposed to my other children when they have strept. Even thought he does not "officially" have strept, his body is so sensitized to it that it will cause his immune system to react and is antibodies will increase and cause him to have symptoms. Looking back, I do believe this has been true. I will be much more careful this winter about my other children and their proximity to him when they are sick. Just wanted to throw that in. Good Luck. Starting school is hard on the whole family. Dedee

Hi Faith, My son that has RLS is not the same child that has PANDAS and tics. Although he does suffer from some mild OCD symptoms he has never been officially diagnosed or treated. I had read some articles posted here regarding anxiety, OCD and Inositol and thought I would try it for him since he is not on any prescription medication. It does seem to have helped him at night which was his most difficult times. My oldest son with PANDAS, is on medication for his OCD so I do not give him the Inositol. Hope the info is helpful. Dedee

Thanks Chemar, I may try that. I worry about the cumulative effects over the years. Dedee

Chemar, I have a question regarding grinding teeth. I have three children and all of my kids do this in their sleep to the point that you can even hear them from outside there room. I do not notice it while they are awake. Even my PANDAS child has not done it as a tic or anything, but my gosh, I have gone in the room before when any of them are doing it and their jaw is clenched so tightly you would think they were having a seizure. I have mentioned it to their doctor, but they just shrug it off. I am with you, nothing works to stop it. Even my three year old does it. I find it odd that all my kids do this as neither my husband nor myself do it. Just wondering if you thought I should try something to prevent it. Thanks Dedee

I have found the link to the page here that has that article on RLS and strept and I am going to try to post it. I hope this works. I am not very good at this. RLS: association with Streptococcal or mycoplasma infection

I don't think the antibiotic would mask the pain of the appendicitis. I do however think that it may have kept her from getting a serious infection if it had already burst. Either way, I am glad to hear she came through everything so well. I probably would hold back or decrease the calcium/mag if she has a kidney stone. You could ask the docotor to be sure. I have chronic issues with kidney stones and am not able to take any calcium supplements, but it may be different with children. I would check with her doctor before taking her off, as I am sure it has been beneficial with her tics. Good Luck. Dedee

Let me assure you that what your son is having is not anxiety or tics. I believe that what he has is true RLS. Yes, children can have RLS. I am telling you this because my middle son had it for about 4 months after a strept infection. I would not have been a believer or so patient with him except the I also suffer from RLS and his description was right on the money. He would also cry every night and insist on sleeping with me. I would give him Benadryl to try to help him sleep, but that sometime seemed to make it worse. I was afraid to go to the doctor because at that time I was afraid they would think I was crazy. Since then I have seen a research article (it was very short) on the correlation between strept and RLS in kids, and I thought I would fall over. I just knew then that my son was the one with that direct correlation. By the way, this is not my son with PANDAS, but my other son who has other strange flare ups after strept infections. One thing that does help is Calcium supplements. I give them right before bedtime. In addition, make sure you avoid any sort of stimulant in foods such as caffiene, chocolate, etc.. before bed. Also, Inositol is a naturally occuring B vitamin that promotes rest and decreases anxiety. Although you have to use higher doses for these effects. I use two teaspoons of the powder in milk before bed for my son and it has helped him tremendously. It is a water soluable vitamin so you can't give to much. Whatever is not needed by the body will be excreted through the kidneys. I will try to hunt around for that article on RLS in kids and find the link. I got it from this site, maybe someone here remembers it. In the meantime, I will pray for you and your son. How horrible for him to suffer that way. Please let me know what the doctor says. I hope you find relief soon. Dedee

Actually yes, she said that it peaks when hormones peak (through puberty) then startes to subside in the late teens. Sometimes if you are lucky around 16-17 start seeing symptoms easing off. But for sure in the late teens early 20's at the latest. Only in very severe rare cases does this carry on to adult hood. She said best for us to try to wean him off the antibiotics every few years and see what the response is, that will give us the answer. My son is almost 12, so we haven't even begun to hit the peak hormones yet. Hope that helps. Nice to know there is an end in sight. Dedee

I have posted before about the omega 3 issue. My son's doctor who treats his PANDAS suggested that we start him on Max EPA fish oil with omega 3's only, and told us to avoid the omega 6's, based on research which shows that most individuals today have an imbalance in omega 3's and 6's which can cause neuropsychologic issues. This imbalance is an ambundance of omega 6's and a shortage of omega 3's. Therefore it does no good to supplement 3's if we are also adding more 6's. This imbalance of course is due to improper diet, etc. So not every child would suffer if they have good eating habits. Also, the supplement should contain a 2:1 EPA/DHA concentration (EPA being higher). Nordic Naturals is a good brand but you do need to be careful with the childs formulas as some of them will contain the omega 6 & 9's. Also NSI makes a good brand. I give my children the adult version. I get it from vitacost.com. I am going to post an article that I have posted before that speaks to fish oil benefits. I think for some children it is very beneficial. But some children are very sensitive and are not able to take it. Just like everything else, it is very individualized. Review of Fatty Acids / Fish Oil Dedee

What I find so astounding is that requests for research grants are being turned down on the basis of "not enough children affected by this illness". I agree that know one has any idea how many children are mis-diagnosed and go untreated and are left to suffer. I believe with more physician education the numbers would be scary. Dedee

Well, I just wanted to jump in and say a little about the penicilling issue. My son takes amoxicillin daily as it helps his PANDAS symptoms. Amoxicillin is a penicillin based antibiotic. When I spoke to Dr. Murphy about switching, we discussed issues such as starting on the strongest medications first with nothing more to work with once your child becomes resistant to that particular antibiotic. Of course, if you are in the middle of a true strep outbreak and penicillin is not working that is a totally different story. In my case, my son is doing well on amoxicillin, so really there is no reason to look for something stronger. I believe, again, that you need to think these things through on a case by case basis. As in most medical issues, there is no blanket therapy that works for everyone. While one person may do well on a weaker antibiotic, others may require the stronger more broad spectrum therapy. There is no need to pull out the big guns, so to speak, if they are not called for. However, if the penicillin does not seem to be doing the job, then you know my opinion on that...fight for whats right. Just wanted to put in my 2cents. Hope everyone has a good week-end. Dedee

Cindy, Thanks for the pm. Great to hear that you were able to get the help you needed for your dd as well. Is she on antibiotics or did she not require them. PANDAS is so different in each child, but equally devastating to each family. My heart breaks when I read posts from parents who can not get the help they need. I just want to shake some doctors and give them a wake up call. I shutter to think where my son would be if we had been complacent and followed the first doctors advice. I am also grateful to this forum for all of the wonderful information that I have learned here. Great to hear from you. Dedee

In response to your question on where to get max EPA fish oil. You can get fish oil at most any vitamin store, but it is essential as mentioned before to get the proper kind. I use the type that is used in most studies as it meets these recommendations. It is made by Nordic Naturals and I buy it off of vitacost.com. Another good brand sold there is by NSI. Be careful of what they make for children as some of that has omega 6's also, and you do not want that. Just get the regular adult dose and give the lower end of the recommendations. I think it says 2-4 daily. My son is 11 and she said he could take two daily. I am posting a link to an article that discusses the benefits of EPA and fish oil. Literature Review of Essential Fatty Acids Dedee

How frustrating for you. I do also remember that another PANDAS mother here has a son who got worse on antibiotics. I think she kept him off of them. PANDAS and especially PITANDS presents very differently in each child. If your child has PITANDS, then antibiotics is probably not the answer for you. You can try the suggestions offered regarding the food dye, but I think it is important to also identify whether you are attempting to treat true PANDAS or PITANDS. That may be part of the issue. Again, remember that each child will react differently to treatment, and just like the other mom here, penicillin may not work for your child. I know that Dr. Murphy says that with some children it seems to be a miracle cure and for others it has the opposite effect. This is such a frustrating illness, and I am so sorry that your son is struggling and that you are as well. You may want to try some Max EPA fish oil for his ADHD, there are several studies that are showing after a couple of months on the appropriate fish oil, that ADHD children show less hyper tendencies and more ability to stay on task. Make sure it does not have any omega 6, and that the epa / dha is 2:1 ratio. Good luck with your son and let us know how he is doing. Dedee