Kayanne

Did your son's tics getting worse coincide with his prednisone treatment? Sometimes I wonder if there is such a thing as a PANDAS/Tourettes overlap because it seems like tics are the hardest to treat with PANDAS. And I have been wondering if maybe the supplementation protocol, diet changes, etc...that are discussed more on the TS board would benefit some kids whose tics seem to linger. ...these are just my wandering thoughts....I have nothing to back them up... ~Karen

I'm curious as to why the DAN dr didn't treat for this infection, when he tested positive? Yes, I would give it a try. Which antibiotic is it, and what is the normal length and dose given?

american mutts here....mostly...Irish...Polish

I'm really glad that you are seeing a lot of improvement. My daughter's first recognizable episode started in April '09. She had obsessive thoughts that just shut her down so much that she completely withdrew, and was no longer an independant 6yr old. She was treated with several antibiotics by her ped until her strep throat cleared, and Dr. Latimer treated her with prednisone and also put her on azithromycin as a prophylaxis. She improved almost completly by the end of the prednisone, and it took about 2 more months for the final 1% of PANDAS to disappear. She has been on pen vk 200mg 2X/day since September...so far, no more strep. Is your son on a preventative dose of antibiotics? I feel VERY strongly that this is really key to managing this disorder. When we saw Dr. Latimer in June, she did say that some kids only go through this one time....I am sooooo hoping that is the case for my daughter. She has had a few colds, some minor allergies, and the flu without any significant increase in PANDAS (it was always like...she would do one thing that was a PANDAS symptom, but then it just wouldn't last at all or even come back). She has also received the first dose of H1N1 vaccine without an uptick in symptoms. I, too, am hoping that we caught this early enough that her immune system was not knocked out of wack. That being said...I still worry, I still obsess, spend hours reading about health, PANDAS, TS, vitamins....etc. I am a changed person. One really positve thing that has come out of this for me is that it is much easier for me to cut other people and parents slack....I'm much more empathetic. ~Karen

I'm sorry that you are going through this, I don't any advice about the separation anxiety butI wanted to comment on the anitbiotic. 3 CCs of zith seems kind of low... depending upon the strength of the liquid--if it is 100mg/5ml, then your son is only getting 60 mg daily if it is 200mg/ml it is only 120mg. I'm pretty sure that most of the parents have said that their children take 250mg daily. Also, if you are fighing an infection, then zith usually starts out on day one at a double dose.... I would say that 120mg would be an acceptable dose for prophalaxis, if you are sure the infection is cleared. However if you are trying to get to the strep in the cells...I think it is too low. Have you ever tried a steroid? That may just be one more tool that you could add to get your son better sooner. ~Karen

I really would not even try the liquid Clindamycin--it is so horrible! Go back to the pharmacy, and ask for capsules instead. We carefully opened the capsules on a spoon with a thin layer of chocolate pudding, and then we would put a dollop of pudding on top of the antibiotic, so that it was all covered. My dd6 knew we were giving it to her, so we let her have a regular spoon full of pudding, then the medicine filled pudding, and then another spoon full of regular puddding...she was able to tolerate it that way. EAMom has said that they couldn't get their daughter to take the liqud Clindamycin either, and they successfully swithed to azith. I hope this is helpful! ~Karen

do you remember the dosage? week 1-10mg 2 times/day week 2-5mg 2times/day weeks 3,4 - 5mg 2 times/day how old and how much does she weigh? Sorry, I usually don't forget that info She was 6 and about 42-44 lbs

do you remember the dosage? week 1-10mg 2 times/day week 2-5mg 2times/day weeks 3,4 - 5mg 2 times/day

My daughter was gettiing more "ragey" prior to taking the prednisone, and for the first two weeks, she definately had a lot of screaming, and fighting against us, but by the 3rd week when we started the taper down, her mood really improved.

I agree with DCmom. I thought my daughter had a mild coughing tic...but yesterday, she just said to me that she was coughing and breathing like that into her arm because she didn't want the "little boogies" to get out into the air....so I would say that was OCD and not a tic.....so my daughter had-obsessive thoughts without compulsions.

Right. I couldn't agree more! I just don't know what to do. We are 3 years into on again and off again ticcing. He was tic free over 6 months and now they're back. I'm just not sure I feel comfortable "assuming" it's TS or transient childhood tics. I feel like we should rule out PANDAS but our Ped. feels we already have with a neg. throat swab and negative ASO and DNASE-B back in 2007. What happens to the PANDAS kids who are incorrectly diagnosed TS? Tics are back...have you had his throat swabbed this time? Did your Ped test for strep titers again? 2007 is 2007...this is now, why will he not see if strep is involved this time? Also, Have you seen Dr. T's post about Mycoplasma? I'm not sure if there is a test for that though...strep can be in many places...sinuses, gut, middle ear, skin, tonsils & adnoids, vagina....I would bring all of this up to the doctor, and ask if he is willing to do all the tests involoved with finding an infection, or more willing to just try anitbitics for a month to see if there is an improvement in the tics. Just some of my thoughts... Oh, and about the topic--I agree with peglem.

Yes, while my daughter was in her PANAS episode all of her prolific writing, drawing and crafting stopped. Answer to no. 1---yes! All of those difficult behaviors have been noted by other parents as well---I believe there are a wide array of symptoms of PANDAS, and you will find as you read this forum, lots of "lightbulb moments" on things you didn't realize as being OCD or PANDAS related. Yes, if an infection is still present, then the symptoms can become chronic. Step 1 in fighting this is to aggressively go after the infection. In a lot of our PANDAS kids, this is difficult, because there is also underlying immune deficiencies (antibiotics only slow down the replication of the bacteria so as to give your immune system time to fight it off). Many people don't see a lot of changes with antibiotic treatment unless they are on the full strength for one-two months. Even after an infection is cleared, the symptoms can persist because PANDAS is thought to be a post-infectious autoimmune response. Antibodies that your body creates to fight the infection "get confused" and attack the Basal Ganglia causing inflammaion and/or chaotic neural signaling. These antibodies can take several weeks to receed once the infection is cleared, and then there is still time needed for the brain to heal...so far the research shows that PANDAS doesn't cause permanant damage. Yes absolutely, finish the antibiotic. Specifically which cephalosporin is your son on, what dose, how much does he weigh? It is believed that many antibiotics have anti-inflammatory properties. It has been documented that zithromax has anti-inflammatory and immune modulating (don't understand it, but it causes your body to shift from producing one type of T-cell to a different T-cell--I think!) properties so many kids do see an symptoms get better while taking it. If you saw more improvement on the zithromax, then I would push to have your son put back on that. Tics do seem to be harder to treat than the behavior and OCD associated with this. I'm sorry that you are here, but you found the right place! ~Karen

I also wanted to add that many pople also take 5HTP. From wikipedia: "5-Hydroxytryptophan (5-HTP; Oxitriptan) is a naturally occurring amino acid, a precursor to the neurotransmitter serotonin and an intermediate in tryptophan metabolism." So the way I understand it is...your body starts with tryptophan, converts it to 5HTP, and then that it gets converted to serotonin. Since Tryptophan and 5HTP are serotonin boosters....don't take both...just one or the other. ~Karen

The amino acid L-Tryptophan is the pre-cursor to serotonin. From wikipedia (bolding and italics are mine): "For many organisms (including humans), tryptophan is an essential amino acid. This means that it cannot be synthesized by the organism and therefore must be part of its diet. Amino acids, including tryptophan, act as building blocks in protein biosynthesis. In addition, tryptophan functions as a biochemical precursor for the following compounds (see also figure to the right): Serotonin (a neurotransmitter), synthesized via tryptophan hydroxylase.[7][8] Serotonin, in turn, can be converted to melatonin (a neurohormone), via N-acetyltransferase and 5-hydroxyindole-O-methyltransferase activities.[9] Niacin is synthesized from tryptophan via kynurenine and quinolinic acids as key biosynthetic intermediates.[10] Auxin (a phytohormone) when sieve tube elements undergo apoptosis tryptophan is converted to auxins."[11] My husband didn't want to go back on an SSRI, so he has been taking the L-Tryptophan for about 3 weeks. He does think that it is helping. We learned about "pre-cursor loading" from the following The Way Up From Down by Priscilla Slagle, M.D. You can download the free book in .pdf format at: http://www.thewayup.com/ebook/ebook.htm It is an excellent book for someone who is not familiar with all of this stuff--It is full of basic info...when to take, with what types of foods, what vitamins and mineral are essential to take along with it so that the conversion to seratonin can even happen (B vitamins & B6-P5P). Buster, I think you will appreciate that she has several pages of cited sources. She offers some ideas for customization, like adding lecitin (which has Insitol in it) for anxiety...but I think for some people it may take more learning to get things just right. She stresses the importance of balance with these supplements, and I think for low moods and depression, it is probably correct. However, her program also includes taking L-Tyrosine and/or L-Phenlalanine. I think it is important for me to note that these two amino acids are not a good supplement to take if you have TS, because they are pre-cursors to dopamine....I've read on this forum that excess dopamine is a contributor to TS. Since PANDAS and TS have similar symptoms, then I think taking Tyrosine or Phenlalanine shouldn't be done. I'm still trying to find out if PANDAS also has an excess of dopamine....so far the way I understand it...it is more of a regulation of dopamine that is a problem...there is still a lot about PANDAS that I don't get. After about a week on the L-Tryptophan, my husband added in the L-Tryosine, and about three days later, he was having a lot of panic issues again....I found a post from Chemar in this thread: http://www.latitudes.org/forums/index.php?...ic=6533&hl= And I told my DH to stop the L-Tyrosine (because I suspect he has a very mild case of TS or PANDAS). His panic issues have subsided, but not to the point it was while he was just taking the L-Tryptophan. It has been a week since he stopped the Tyrosine....so I am thinking this stuff does take some time....you can't expect overnight results. Chemical imbalances and vitamin deficencies don't happen overnight either.. I hope this info is helpful. ~Karen

Betsy, So sorry your going through this, but you did find the right place. Go to the top of the forum, and click on helpful threads, and read as much of that as you can...I think you will find many of your questions answered there....if not, do not hesitate to post your question. What part of the country are you from? Based on that many on this forum can give you reccomendations for doctors. Get every one in the house swabbed for strep...step one in getting this under control is getting the infection under contol. Is she done taking the amoxicillian? Did you notice her behaviors improve while on the antibiotic? What types of behaviors? Strep can be in the mddle ear too, but the only way to test it is if your daughter's drum perforates from the pressure...this doesn't happen often (but it did twice to me--go figure!) Best of luck (hugs) ~Karen

I hoping and praying that this doesn't get any worse for your son! ~Karen

I'm from PA...so I cannot give suggestions on where to stay...we did the three hour drive back and forth in one day....I just want to wish you the best of Luck. I hope Dr. Latimer is able to help Lauren...thank you for what you have done to bring attention to this disorder! ~Karen

Clindamycin worked really well for us too. I know one of the benefits of using it for acne is that it helps with inflammation....but I couldn't find anything about it being anti-inflammatory in the body... But our daughter was on three other 5-10 day courses of antibiotics before her ped put her on 300mg of clindamycin 3X/day for 10 days. She was about 42-44 lbs at the time. They did this because the rapid strep kept being positive. The clindamycin cleared that. I suspect that we were seeing some anti-inflammatory benefits of it because she was suddenly able to answer yes or no questions, the crying was minimal, she was really trying to communicate, and the far away look was gone. Two days after stopping clindamycin, she started to spiral down again, and it seemed worse or more morphed....ADD type behaviors to Autistic Type....crying fits to ragey fits... About 19 days later we started prednisone and 100mg azith daily as a prophylaxis. When we first filled the clindamycin prescription it was for a liquid....NASTY. The pharmacy gave us 150 mg capsules to open up...we added two to chocolate pudding. For our daughter, it was key to clearing her infection. We had a bad strain in the house...my baby was on omnicef once...my non-PANDAS daughter and son were on antibiotics three times...my husband once...me three times (amox twice...a then finally 2 zpacks). I think Clindamycin is a good choice for an antibiotic...I'm not sure about long term though because I think it is pretty strong...and with dosing every 6 hours, it can be hard to get in those probiotics. ~Karen

We also had a great result with Dr. Latimer's steroid treatment. I am hopeful that if she has another PANDAS episode, we can stop it from getting too bad. I am also glad that my daughter responded to this "first line" of treatment because I feel like I still have Plasmapheresis and IVIG to fall back on. Side effects were minimal...she wasn't eating well so the weight gain was appreciated....ragey for the first two weeks, but she was beginning to rage prior to strarting the pred...one pimple...cheeks looked a little fuller, but it was hard to tell because she naturally has fuller cheeks. I would definately do it again. Prednisone is also an immuno-suppresent....but I was told that is generally after a month of use...I think is suppresses B cells...haven't looked that one up in a while. ~Karen

smartyjones, Sorry it has taken me a while to reply....we had a busy weekend (good type of busy ) When all of this started happening, our daughter had just turned six about two months prior. End of March/Beginning of April is when we started to notice her behavior to change. At home, we noticed it was over a few weeks that she got "difficult". At school, her kindergarten teacher felt that it was more of an abrupt change. Her screaming about going to the bathroom, and my having to gently force her to go happened up until the steroids kicked in very suddenly on July 3rd. After that, it was some crying about going, and a lot of coaxing from us, and then by September, we just "lightened up" about it, and told her to go when she wanted...no matter how long she waited...by mid-September she was going to the bathroom regularly without asking us first, or needing any prompting. So all of this has happened while she is six years old...prior to PANDAS, she was a completely independant as far as her personal care (except for a little help rinsing the shampoo out of her hair sometimes). She will be 7 in February. I think I should point out that for the most part, Becca's PANDAS occured during the last quarter of a very successful kindergarten year, and during the summer. As far as school was concerned, they knew she had a really good grasp of the material, and felt comfortable moving her along to first grade even though she was barely responsive, and her social skills just dropped off...she looked autistic. During the summer, we felt we had the luxury to just "let her be". We took her to weekly CBT, but kind of agreed wth the therapist that those appointments were really so that a "professional" could see her progress. We didn't want her to get frustrated because we felt really that she wasn't capable of trying the skills anyway. We were going by her behavior. After about a month, of getting angry, telling her she couldn't say "maybe yes or maybe no" when we asked her a question, her crying fits were very frequent, and we couldn't comfort her at all. We basically dropped all expectations on her, and she did become happier. We saw giggles (actually made it a point to make her laugh once a day), and she would run around the house with her little brothers, but mostly she sat in front of the tv. We performed all of the basic functions for her. I should add, that she didn't play with her older sister or some friends when they came over...I just think it was too complicated for her. I knew, though, that come September, it was going to have to change if she didn't improve. In a lot of ways, PANDAS happened to my daughter at a good time of the year, and for that I am grateful. I think cognitive inflexibility is an excellent term. Definetly, 99.99% of her issues dropped off when she came out of her exercerbation. Yes, my husband and I didn't push her because, as we understood it at the time, we thought she had actual swelling in the Basal Ganglia. Now we are left with (prior to PANDAS I would have called her stubborness) some minor things. Like crying if I put a barette in her hair instead of a ponytail--or it is not quite on the top of her head, crying if she cannot wear what she wants... But this was normal before we heard of PANDAS. I just considered her more "fussy". Really right now, we see bits of behavior that break through, that most people would consider completely normal...but having gone through a PANDAS episode, and the information sharing on this forum, it is hard not to take a second look. Hindsight being 20/20, we do think she had a milder PANDAS episode around 3 yrs old, and I have wondered if her baseline was set there because of it...but knowing what I now know about OCD...this could just be a natural genetic disposition toward it...my husband and many of his family have minor OCD tendancies... So I often wonder, and don't think I will ever know how much is geneticlly classic OCD, and how much is PANDAS, and how much is normal six yr. old stuff? The ped practice treated her strep. She kept testing positve on rapid strep tests from March - May. She was on 5 days of Omnicef, 10 days of amoxicillin (once a day!), 10 days of augmentin with rifampin added on days 7-10, and finally on 10 days of clindamycin 300mg 3/times a day. She has not tested positive again....rapids and cultures --negative. We saw Dr. L on June 5th, and she prescribed a month of prednisone....two weeks treatment, two weeks taper....we did an additional two weeks of taper (5mg once a day). She also prescribed 100mg of azith daily as a prophylaxis. We saw babysteps of improvement for most of the month...with three days left...we saw dramatic overnight results...that's why we requested to continue the 5mg because she was sooo close to being back. By August, she started writing and drawing again, and in Sept we changed her prophylaxis to 200 mg of pen vk twice a day. The week after that, her potty issues went away. I hope this info helps...I'm so sorry about the long post...I have a difficult time keeping things short. ~Karen

We have recently spoke with both the PANDAS doctor and her immunologist regarding Lauren's increase in her sneezing tic coinciding with the decrease/taper of the steroids (she had substantial improvement initially with the 30&25mg but no sustained improvement with the decrease). They both suggested that plasmapheresis and ivig (back- to-back) in the near future, could be helpful, but neither can do it. We have made an appointment with Dr. Latimer next Wednesday, as she is the only doc I know if who can do both. Has anyone else done PEX/IVIG back to back and the result? Lauren also started to have severe stomach issues..just in the last few days, today being the worst. I gave her a prilosec (dr. B's suggestion)., along with adding another probiotic. She also take Aloe Vera extract and Olive Leaf Extract. We seem to now have it under control but any other helpful advice (besides common sense suggestions ie:take with food) would be appreciated. She is on week three of 875mg Augmentin and a 3 day tapered steroid treatment. I also want to add that Lauren has low (below normal) total IGg and failed (had negative result) on most of her pneumococcal titers which also helps her qualify. I hope all is well with you and your family.. I'm sorry that you didn't see a sustained relief from the steroids. I think eveyone else has given you good advice, so I just want to add that I have read that Olive Leaf Extract can decrease the effectiveness of anitbiotics, so it is something that you may need to investigate further, if you have Lauren on both. http://www.anyvitamins.com/olive_leaf_extract.htm Best of Luck--Good luck with your appointment with Dr. Latimer. ~Karen http://www.anyvitamins.com/olive_leaf_extract.htm

I don't really have a lot of advice for you because our Daughter's potty issues decreased as she recoved from her PANDAS episode. We took her to a CBT weekly at her worst, but she really was not even capable of using any skills that she learned. Now she is learning some skills, but I think her OCD is so very minimal...that if there is any leftover...even we her parents don't see much. My PANDAS daughter never wanted to go to the bathroom. At her worst, I was wrestling her clothes off and making her go--all the while she was screaming, "Nooo, Mommy!" As she was improving, it was a lot of crying and, "Do I have to go now? No, I don't want to! Please, mommy, no" but I would be able to coax her to use the bathroom a few times a day....she had excellent control and never had an accident--I've often wondered if her control was somehow related to the OCD. She also would have specific behaviors when she was withholding her urine and stool. She would lie down...in the middle of meals, at the playground at school, for hours on the sofa...I think somehow this position made it easier to handle...However, it wasn't disruptive like you are dealing with your son (except at meals). It did get to a point, however, I would find her laying down, and would tell her she couldn't because I knew she was holding it in....so I guess in a way I was focusing on the behavior. Her reluctance to go the to bathroom was probably the very last PANDAS symptom to go. It got to a point, where we had to just tell her that she was not to have an accident, and she could go when she wanted to. But it was still a conversation that went something like this: “I think maybe I have to go poo, but I don’t want to.” “It’s okay if you don’t want to go right now, just don’t have an accident.” Usually she would start to cry if we tell her she has to try to go, but she would be happy when we tell her she can wait. Eventually, she would go. At the very end, My Husband and I felt that part of this behavior was a need to "relearn" some of the sensations, (I think the Basal Ganglia is implicated in bathroom sensations) and/or it was a little bit of her needing to decide for herself...she needed to regain her confidence--which took a bit of a hit from her PANDAS. While she was at her worst, honestly, we just wanted to see her happy, and believing that a PANDAS episode means swelling of the Basal Ganglia--we didn't push her too hard to do things that she was just not capable of. We basically were gently forcing her to do the basic functions....eating, letting us bath her, sitting her on the toilet. Sadly, I know that many of you are dealing with a chronic case, and have to do all that is possible to help your children cope in the outside world. Please, Please don't take this the wrong way because it is not intended to be critical at all (just trying to interject a different line of thinking)...it is just that if you are confident that your son won't have an accident at school, then right now, is this a battle you have to fight..or can it be put off a little while to maybe a point where your son is a little more healed? Also, you know your son best, and what is best for him...if your gut is telling you that 30 days is too short, you may need to discuss a more realistic goal with his psych. I know that these types of therapies don't work, if you don't continually challenge the child to face their fears. However, I think that stress can add to an increase in PANDAS behaviors...It is a difficult balance that as his parent you know best how to strike it. We now try to gently ask her why (or what was she thinking about) as it pertains to her PANDAS behaviors, and when asked about not wanting to go to the potty, she said she doesn't even know why she didn't want to go--I wasn't about to ask if it was because of germs. When we discuss it we try our best to get her interpretation, and not plant ideas into her head. ~Karen

Have you had your son tested for strep because of his sore throat? Dr. L told us that there isn't really any evidence that ibuprofen helps with PANDAS sympmtoms, but that was in Sept...she may have heard enough anecdotal stories to now believe that it does--many parents report that it helps their child. From reading people's various posts, it seems that she is open-minded and evolving in her treatment/beliefs about PANDAS. I don't think you need to convince her. Just bring your file, timeline as it pertains to strep infections and PANDAS symptoms, any lab results you may have. She asked us about family history too...anxiety, autoimmune diseases, Rhuematic Fever. In our case, she asked me to tell her the story, and that is what I did. It sounds to me that you have already gathered what you need. I also had a typed timeline, and she just had me go over that...she made her own notes on the computer. Something that we brought, which she found interesting (and told us to hold onto) were examples of our daughter's daily journal in Kindergarten...there was a definate difference in the quality/quantity of her writing and drawing, and she felt that was helpful. I know this is really scary, but Dr. L is very kind and caring, she will put you at ease...I think you have made the right choice to see her. I applaud your courage in stopping any more psych meds until you have some answers in regards to PANDAS. I hope this help. ~Karen

I agree with all of the above sentiments. Especially that it is much safer than psych meds! If you see improvement on the abx, then you have one more piece of the puzzle to present to a doctor here in the States. If you can get some probiotics, then use them to minimize the side effects of the abx. ~Karen

another good antibiotic is Clindamycin, but DO NOT get the liiquid....your child will never take it. Instead ask for caspsules, and open them and add to something good. We added it to chocolate pudding.