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NVAmom

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Posts posted by NVAmom

  1. Hi Dr T,

     

    I have an 11 year old son originally diagnosed with Tourette's Syndrome when he was 7. He had a sever strep infection last spring with a return of all the PANDAS symptoms that we have been told for years were a comorbid condition that went with TS. Thankfully, he was diagnosed last fall with PANDAS and began Augmetnin 875 mg 2x/day. We have seen slow steady progress but still have a ways to go.

     

    He had blood work in Aug before the antibiotics. Here are the results:

    Lyme, Western Blot, Serum

    Lyme Ab IgG by WB

    IgG P 93 Ab - Absent

    IgG P66 Ab - Present - Abnormal

    IgG P58 Ab - Absent

    IgG P45 Ab - Present - Abnormal

    IgG P41 Ab - Present - Abnormal

    IgG P39 Ab - Absent

    IgG P30 Ab - Absent

    IgG P28 Ab - Present - Abnormal

    IgG P 23 Ab - Absent

    IgG P18 Ab - Absent

    Lyme IgG WB Interp - Negative

    Positive: 5 of the following Borrelia-specific bands: 18,23,28,30,39,41,45,58,66 and 93

    Negative: No bands or banding patterns which do not meet positive criteria

     

    Lyme Ab IgM by WB:

    IgM P41 Ab- Present -abnomral

    IgM p 39 Ab- Absent

    IgM P23 Ab- Absent

    Lyme IgM WB Interp. - Negative

     

    Positive 2 of the following abnds 23,39,41

     

    Antistreptolysin O Ab - 463.3

    Anti-DNase B strep Antibodies 1:680

     

    Medical history includes: chronic strep, tonsillectomy, adneoidectomy, reflux, frequent pink eye, chronic croup, frequent complaints of stomach pain

     

    Thank you for your posts!

  2. I think the idea of a time line vs a paragraph format is a great idea. When my son saw her she went through ours and asked questions about anything was not clear. I also took copies of handwriting before, during and after an exacerbation. Also, does your son do any sports? My son does karate. I had noticed a change in his balance during class one day. I went back to look at old videos of him at karate events that were taken before a strep infection last winter, during an active infection last spring and after 3 weeks of antibiotics this fall. There were obvious variations in his balance. I played the videos for her and she was able to point out the chorea movements that were affecting his balance. I knew his balance was off but did not see the underlying reason until she pointed it out in the videos.

  3. Are there any parents out there whose child has had Pandas for a very long time, 5+ years, that was not correctly diagnosed or misdiagnosed as PDDnos, Tourette's, etc. and did not get proper treatment, i.e, abx, ivig, pex until many years later? How are your kids doing? Are they "healed" after treatment and such a long time of non-treatment?

     

    The reason I am asking is that my dd was misdiagnosed with Pddnos at age 5 (had symptoms long before that), and just this past summer we figured out it was Pandas. She is now 9. Now that we know what "it" is we are all over it and are as aggressive as possible. We have done IVIG with Dr. K., doing monthly IVIG with Dr. Bouboulis and are on high-dose abx. We are seeing many good things, but the backslides are really tough and I every time I see my dd live through one I am convinced this is all not going to work get very worried that she can't pull all the way out of this. I know, I know, I have to be patient, but it is gut-wrenching to watch this as it feels like whatever recovery we are having is in slow motion.

     

    Are there any long term pandas kids that are healed and if so, how long did it take and what treatment worked best? Sigh. I think I need a pep talk here.

     

    coco

     

    Hi Coco, I am sorry that you are going through this. It is so hard to see your child improve and then lose the progress that was made. My son was misdiagnosed with Tourette's in first grade. We were told his tics, his behavior problems, seperation anxiety.....everything was a co-morbid condition of TS. He had an unbleievale exacerbation last Spring and was not correctly diagnosed with PANDAS until this fall. He went untreated for 4 years at least (looking back I think the first PANDAS episode was around 2 or 3). He started on antibitotics in Sept and the doseage was increased in Oct. He was doing great until his sister got pink eye....then we took about 10 steps backwards. He started prednisone after that set back and has made tremendous prgoress. He is now doing even better than before my daughter had the pink eye. Also, this may have already been mentioned to you, but I started charting his symptoms on a 10 point scale each day (thanks to a suggestion from this forum) and it has helped me see that things are slowly but surely improving. I pray that this will give you some hope that it is not too late for successful treatment for your daughter.

  4. I also have struggled with the 'why my child?' thought. Now when I think about it I think of how I maybe able to offer help - to another parent in the future. However, what really excites me is thinking how my children might help others in the future. I daydream at times that my PANDA's son will have a passion for research or for healing ....to help others based on his battles.... or my daughter may have the same passion.... after seeing how her brother has suffered. No matter what their path, I feel our family is also learning to to have more compassion along the way.

  5. Hi all - need some advice. Meg is nearly 99% now - no real OCD left. Maybe 1 compulsion per day, but very habit based, not at all stressful. She is doing well at school & at home - much less hyper, better focus, no nighttime issues, no clothing issues, etc. She is very happy and talks about it all the time.

     

    Anyway, at this point, our big residual problem is around blood draws. Meg had 2 horrendous experiences during PANDAS (one time a newbie yanked half the thing out & blood went everywhere - all over both of us. The next time, an evil nurse threatened to "hold her down" because she yanked her arm just one time. Meg had claustropbia along with everything else at the time, so not good.) Anyway, we have been trying to get a blood draw from her for 2 months now. We went to therapy about it - her therapist does not think it is OCD/PANDAS, and neither do I. It is clearly anxiety & also just that Meg has put her foot down (I don't really blame her!).

     

    We did therapy for her on this issue over the last month - tons of practice at home & found an awesome nurse who has also been taking it step by step with her. Well, today should have finally been a full vial. And Meg went backwards and refused to do the draw. Needless to say, I am VERY frustrated. Whew, I swear, I have the patience of Job when we are in a PANDAS episode - but this will drive me nutty :wacko: . I think we should medicate her for the next draw, so she can be successful and start building her confidence about this. I tried Benedryl and Motrin today, and that did not touch it. Any recos? I want to call her ped in the morning & I know it will be better if I have a specific request. I am thinking of something like a kid valium?

     

    Would love some ideas! Thanks -

     

    Hi, My mom had sent me this link and was going to order this product for my son if we had to go the IVIG route or many more blood draws. It is called "Buzzy for Blood draws". I think the site says they are not readily available until 1/2010 but they say if you have special circumstances they might be able to help you earlier. Here is the link.

    http://www.needle-pain-management.com/buzz...lood-draws.html

    Would love to know, if you decide to try it, if it helps you dtr.

    Debby

  6. Hi Angela, My son is 87 lbs, 11 years old. We saw some improvements in his mood, attention and rages at an initial does of Augmentin 500 mg 2x/day. We saw even greater improvements in the symptoms already mentioned on 875mg Augmentin 2X/day. His vocal tic also went away on the higher dose (until his sister got pink eye.....and now we are back where we started with regard to most symptoms). Hope that helps. Debby

     

    Thanks Debby. It does help. The more info I go in with, the better, I think. How long was he on the 500mg twice a day before the dosage was raised?

     

    Angela

    He was on the lower dose for about 5 weeks. The reason he started the lower dose was because he had a sinus infection. However, he had extreme behavior the day before we found out he had a sinus infection so the psych increased his Abilify the day before stating the antibitotic. At the time I was just learning about PANDAS. When we began seeing improvements I felt it was too soon to attribute the improvements to the Abilify since that takes several weeks to start showing improvements...but was still not sure it was the antibiotics. I talked about it with our pediatrician and she agreed to extend the antibitoics until our appointment with Dr Latimer. When we saw Dr L she increased the antibiotics to the current dose. When we saw the improvements after the doseage increased I was positive the initial improvements were from the first antibiotic and not the increase in Abilify. Hope that makes sense.

  7. I see our family physician again tomorrow. It will have been ten days since dd began Augmentin xr. She is 90 lbs and is on 500mg twice per day. There is no big change in Lilly's ocd at this point, though she has been willing and able to tackle teeth brushing the last 3 days. Sammy Maloney in the end was on 1000mg twice per day.

     

    I'd like to be able to take our doctor some other examples of what worked for other people's children. I really need to decided soon if I am going to try to stay working withour doctor who has never dealt with PANDAS before or whether I am going to take my dd to Boston to see Dr. Geller, which is $2000 out of pocket just to get started. While this won't make us lose our house or anything, it will make life more difficult for a while.

     

    Working with our family doctor would be MUCH cheaper. I plan to see what she has to say tomorrow and see how far she is willing to go to treat Lilly for this. I would happily pay to have her consult with Dr. Geller which is $250 for half an hour.

     

    I would like to take her some other examples of how much augmentin has worked for other kids. I know it is an individual thing but the more examples the better.

     

    So, please state weight, age, and dosage that helped..and how long they had to be on it.

     

    Thanks.

     

    Angela Shaw

    Hi Angela, My son is 87 lbs, 11 years old. We saw some improvements in his mood, attention and rages at an initial does of Augmentin 500 mg 2x/day. We saw even greater improvements in the symptoms already mentioned on 875mg Augmentin 2X/day. His vocal tic also went away on the higher dose (until his sister got pink eye.....and now we are back where we started with regard to most symptoms). Hope that helps. Debby

  8. Wish I had an easy answer for you, but I can at least offer sympathy.

     

    Your story about your daughter and flash cards could easily have been our DD9. That contradiction of wanting two mutually-exclusive things at the same time was a really common occurrence for us.

     

    The only thing I EVER found that helped me was just to keep lowering my emotional energy the more worked up my DD became. In other words, if she was getting upset, I deliberately lowered my response - lowered my volume, lowered my physical movements. I tended to mirror her questions back at her and ask gently what I could do to help.

     

    It certainly didn't always work, but it usually didn't make anything worse.

     

    Pixiesdaddy

    Reading your post brought tears to my eyes. I've been there....maybe not over flashcards but getting the number or letter etc to look perfect...even after he had erased until there was a hole in the paper....then he was upset over the hole in the paper. I've tried holding him tight ....even though he may resist at first ....eventually his body would go limp and he would lie in my arms and cry and evenually it would pass ...until the next obstacle.

  9. Hello all,

     

    I normally post on the TS page, but thought I would get a better response here.

     

    My son DX TS, is sched. to see an ENT this week and I know the information on adenotonsillectomy has mixed reviews. My question is how many of you all have had this done for your child? Does your child have TS, PANDAS, or Synenham's Chorea?

     

    I'm checking into it because my son does have huge tonsils and he has never been able to breath through his nose. My husband has the same problem. My husband also has sleep apnea and we do believe our son does too. So these are the reasons we are thinking about the adenotonsillectomy. Tho I'm scare to go this route, but would love to report good news if it helps.

     

    How should I handle this? Do I have my son on ABX before, and how long after?

     

    Thanks,

    CP

     

    Hi CP, I know that is a difficult decision to make. My son was diagnosed with tourette's in first grade. We have learned within the last 3 months he was misdiagnosed and he actually has PANDAS.

     

    He had his adenoids removed in preschool. They were doing an endoscopy and bronchoscopy due to chronic croup and reflux and determined the adenoids need to be removed during that procedure. The only real change we noticed after that was he no longer snored.

     

    My son had his tonsils removed in first grade. He is now in 5th grade. He was also in his first full blown PANDAS episode but we did not know what it was at that time. Looking back I realize the seperation anxiety, social anxiety, defiance and OCD dramatically decreased after the the tonsils were removed but no real change in his vocal tic. However, at the time he was also working with a counselor. I remember thinking that it did not seem like the counselor was doing anything specifc to help him but figured I must be wrong because he was improving. Looking back I definitely feel it was removing the tonsils that helped. At that time, my dtr and I were getting strep at least 4-6x a year. It has been 4 years and we have had strep 1 - 2 xs.

     

    Hope that helps! Debby

  10. I thought I had a better understanding of 'sawtooth' healing after reading some posts from yesterday but now I'm not sure how you tell the difference b/t 'sawtooth' patterns and exacerbations. Can anyone help me understand how I know my son is not at the bottom of the saw tooth vs in a complete exacerbation?

     

    Also, he has had a difficult week with increasing seperation anxiety and rages but this morning I realized he has a mouth full of sores and one in each corner of his mouth on the outside. I think I have read that can cause exacerbations but can you do anything for it? I have him using Listerene and a numbing spray from the dentist Ameseal).

     

    My dtr has pink eye and was wondering if that has any corelation to my son with PANDAS and his increase in symptoms?

     

    Last question, I have read DAN in reference to dr's and was wondering what that stood for.

     

    Thank you very much. I am learning a great deal from everyone here and am very thankful for your willingness to answer ?'s

    Debby

  11. That's my question too. But a nurse practicioner told me yesterday we'll only know if we have the blood tests done. There's like 3 titers. One for current strep, one for strep upto 3 weeks out, one up to 6 weeks out or whatever. So I'd say blood tests.

    Denna

    I have not posted in a while. My son has been on high dose Augmentin for 1 month today. He has had a huge exacerbation in symptoms in the last few days.

    He is saying that his throat hurts and his tics are over the top and OCD.

    How can I get a strep throat rapid or culture if he is on Augmentin. Won't it automatically come back negative.

     

    At first I was thinking that he was having a saw tooth type of healing that is starting, because some really good things are happening. He is telling me that he is giving up some of his OCD habits on his own. He told me yesterday that he is doing his own Exposure Response Prevention (ERP). That different OCD things are going away.

     

    The part that makes me think it is saw tooth type of recovery is that he is getting tics back that he has not done in years. It is like they are going in reverse order.

     

    Hopefully we are not too far away from IVIG. 1st phone consult with Dr. K is Tuesday, 11/17 and follow-up with Dr. Gupta, Immuno from UC Irvine on 11/23.

     

    What is so strange is that his old tics are all merge together and cycling in and out very quickly. Like certain words he used to say that were a tic are all jumbled together.

     

    He said his throat hurt last night. He won't let me look at it because I did not want to force the issue because he is in such a state and I figured it can't be strep while he on the Augmentin, correct?

     

    We are planning to start a steroid burst today, but I am so nervous because he is so volatile.

     

    His OCD was telling him to open and shut doors all day yesterday and he slammed his pinky finger in the door (accidentally). It is all black and blue and swollen, I' m not sure if it is broken, I don't think so, because he is able to move it.

     

    I feel so bad for him and I just want a doctor to swoop in and help him. I'm sure Dr. K will help. I just wish we lived closer to him or that I could get my son on a plane. He is just too unstable right now. Thanks for letting me vent..

    Judy...

    I was wondering this myself. This is probably a dumb question..... but what would be done if a child's blood tests postitive for strep if they are already on antibitoics?

  12. Excellent advice Tmom- I always try (try) to look at overall trends....

     

    Faith- here's another thought for you. My dd (initial episode) really didn't show any improvement until about the 30th day of zithromax. Then almost everything was gone in a few days. (and she most likely only had pandas for 6-8 weeks to start with). I know it is frustrating- but you have to give it time.

     

    I can echo dcmom. We had a cliff of symptoms in June of last year when we put our dd on azithromycin. On the 10th day (after commencement) we had a break-through where she finally could vocalize that she wanted to get better and then symptoms dissipated over the next month until by mid August she was 90% back to normal.

     

    In our own case, we kept a daily log and then a weekly log because outside of that time window it is impossible for us to "remember" what happened. In addition my dw would mark major events on a calendar. When we plotted the last 75 weeks, there is a noticable ramp and decline in symptoms. We plotted each symptom on a 1..10 scale (emotional lability (raging), lashing out (physical striking), measurement rituals, skipping meals, contamination fears, hallucinations, suicidal vocalization, obsessive questions, handwriting anomolies, ...) where 2-3 meant it happened but was irradic. 4-6 meant it was consistently present, 7-10 it was disabling. The contamination fears and rituals are the easiest to see as disabling -- they basically intrude to such a degree that they prevent doing anything else for the typically 1-3 hours that the symptom is present.

     

    The sawtooth pattern and episodic nature was really clear when plotted against this 75 weeks. Symptoms +/- 30 points over 10 weeks -- looking in retrospect very sawtooth.

     

    Regards,

     

    Buster

    Tmom thank you very much! Your post was extremely timely. My son has been on Augmentin since 9/23. The dose was increased significatly 3 weeks ago (from 250mg / day to 1750 /day). We have seen significant improvements but he had an all out rage this afternoon while we were at karate. (I honestly did not know how I was going to get him home.) I start to lose sight that yes it was a difficult afternoon but this is still progress because we have only had a couple of rages this week. I love Buster's idea of plotting the symptoms on a scale of 1-10. I think a scale will make it much easier to see trends. I am so appreciative of all the posts on this site.

  13. OMG, I'm so upset. I had an appt with the immunologist on 11/23 that I have been desperately waiting for. Our psych appt was postponed until 11/30 because the therapist had the flu. I called the immunologist office to see if this was OK that the psych appt occured after 11/23 or should I find another place for the evaluation. The nurse called today to say that the immunologist has indicated we should wait and not come until our end of January 2010 appt.

     

    The last time I spoke on the phone with the immunologist, she told me January was too far away, that I should come in on 11/23 after she finishes her PANDAS research so we can talk about what she is going to do, that she was talking with the "experts". Then I get this call with the nurse telling me that the notes say there is no indication that there is anything wrong immunologically. How can they keep telling me that? And we have not met since all her tests were completed. Last time I saw her she was talking IVIG and now I can't even get in to see her.

     

    So I told the nurse all this, that I needed her to go back to the doc to tell her that I didn't understand why she was changing her plan. The nurse refused! She just kept saying the doc's notes were perfectly clear, that I also asked the nurse to tell the doc that I was going to bump her zith back up to every day. That things here were getting worse not better, to be sure the doc knew that. This nurse was not going to give my message. I finally said "Well I guess this conversation is over" and we both hung up. we would do allergy shots and the new allergy medication and that there is nothing wrong with her immunity. I want to scream! I left another message asking nicely to have the doctor call me but it's Friday and I'm sure I won't hear anything until next week

     

    Plus, I have to pick an insurance at work that has no out of network benefits. I think I'm going ot be sick.

     

    Susan

     

    Hi Susan, I am so sorry to hear about your experience today with the nurse. I know it is so disappointing to wait for an appointment that you think will offer help and it to be changed. Could you get an e-mail address for the DR?

  14. I just received my son's cam kinase 11 score. It is 150. Those of you that have had the test done, could you post the score and symptom severity of your child? Thanks.

    150- sons symptoms run from mild to moderate

     

    Hi, my son's score was 156, however, he had been on Augmentin 250mg /day for about 5 weeks prior to the blood draw. I would say at the time the blood was drawn his symptoms ranged from mild (tics) to moderte (anger outbursts, fine motor and gross motor chagnes, attention). Hope that helps.

  15. We're not sure exactly how the advil works...we suspect it decreases imflammation in the brain/basal ganglia. Or maybe it helps close the blood brain barrier somehow?? It's not a cure, but many find it seems to help with symptoms.

     

    When our dd's pandas was really bad (spring 08) we also tried Aleve (naproxen) which didn't have the same effect.

    THANK YOU! THANK YOU!!!! Last night he was having a very difficult evening and I gave him an Advil (not easy to persuade an 11 year old to do in the middle of an anger outburst) :) within an hour he was much calmer....and wanting to be around the rest of the family ;) . Usually when he has an evening like last night he wants to be left alone. I am not sure it was the Advil but will definitely try it again.

  16. Faith....I suspect that Dr. Latimer is starting to get more aggressive with abs in general (a la Saving Sammy). Perhaps she is realizing there is little downside (and a big potential for an upside) with the higher doses/stronger abs.

     

    NVAmom...have you tried adding on Advil (Ibuprofin). Lots of parents find it to help with symptoms. Dose is by weight...I think you can give a 90 pounder 400mg 3x daily (the same dose you'd give for the flu) for a few days. Long term, you might want to give less. Be sure to give it with food and you'll need to stop it if you start prednisone.

     

    I agree with Kayanne...some psych. drugs cause nasty withdrawal symptoms if you don't back off slowly enough, so that is one possibility for the beh change.

     

    I would also get throat cultures on other family members to make sure nobody is a strep carrier.

    Thanks for the reply. Does the Advil work by reducing swelling in the basal ganglia?

  17. Welcome to the forum...although I am sorry that you need to be here.

     

    I wouldn't hesitate to email Dr. Latimer...maybe the antibiotics need more time before you back up on the clomipramine....sometimes just the act of decreasing a psych med can create withdrawl symptoms...or he could be getting sick.

     

    My husband always had a "foggy head" dry mouth, sore throat and irritability while adjusting to psych med changes...lasting from a few days to weeks.

     

    Can you clarify, does your son not ususally have an uptick in PANDAS behaviors with viral issues--just strep?

    I don't think he has such a drastic uptick in PANDA behaviors with a virus but it has actually been a while since he has had a virus. Thanks for your response!

  18. NVMmom,

    could I ask how much your child weighs? is he big for his age? wondering why Dr. L. increase the Augmenin to 875 mgs. 2x day. So when you began that, you felt he was definitely getting better, symptoms were less? was the follow up in person or phone? Also, did she not want to to the prednisone now because he was on other meds right now?

     

     

    Faith

    Thank you for your respnse. He weighs about 90lbs (11 years old). He seems average compared to the size of his classmates even though he is a year older than most of them. I think she did not start the steroid because when we went to see her for the follow up everything was great. The chorea and attention problems were still pretty evident but I think compared to where he had been she was seeing great progress on just the antibiotic. I definitely saw a huge improvement in his behavior (he was happy, joking, playful) when we started the increased doseage of the antibiotic. As for why she increased the antibiotic to that does....not positive but I remember her commenting that his CAM score was on the high side....not sure if that would be a reason to have a high dose or not. I feel a little foolish now for not asking that question.

  19. I have been reading the posts in this forum since Aug and first want to say how thankfuk I am for this site! In the darkest nights I would read some of the posts and it would give me hope. I am posting for the first time to get some of your thoughts. I will try to give a brief background. My son has always been a quite, shy and reserved child with OCD tendencies. He began clearing his throat constantly when he ws 2. I thought it was because he had been taking an allergey medicine that was drying him out too much. Stopped the medicine but the throat clearing continued. He had chronic croup until age 7, reflux requiring treatment until age 10, frequent pink eye, and chronic strep. He was diagnosed with Tourette's (however Dr Latimer thinks it was the first episode of PANDAS) in first grade. At that time he also had severe speration anxiety. Getting him to school was a challenge each day. His OCD increased and he started having outbursts of anger. He is now in 5th grade and over the years the vocal tic (and new ones), OCD, anger and seperation anxiety come and go in intensity. Last spring (April 2009) he had strep throat and a sinus infection. Since then our lives have been turned upside down. He has intense anger outursts, irrational thoughts, new tics, difficulty concentrating, fine and gross motor changes, obsessess about germs the list goes on and on. When we would go to the pediatrician she kept recommending psych.... so we tried that. I came across PANDAS info in Aug. The pediatrician did sterp titers. Antistreptolysin O Ab was 463. I started looking for a dr knowledgable about PANDAS. He had another sinus infection 9/23 and started Augmentin500 mg 2x/day. There was also a huge spike in anger outbursts at this time so the psych increased the Abilify (7.5mg) and Clomipramine (75mg). He started the antibiotics and increase in psych meds within a day of each other. After a week I noticed an improvment. Since I thought it might be the antibiotics I asked the pediatician to continue the antibiotic until our appointment with Dr Latimer. We saw Dr Lattimer 10/22 and she increased the Augmnentin dose to 875mg 2x/day. He has been happy, relaxed and playing with kids in the neighborhood more than he has in a long time. We had a follow up with Dr Lattimer 11/6. She recommended starting to wean him off the clomipramine and staying with the Augmentin. He has been on the lower dose of clomipramine for 4 days. However, now I am starting to see the anger outbursts and irrational thoughts slowly increase. I am not sure if he could be getting sick, his body has adjusted to the antibiotics, or the small reduction in clomipramine could be the problem (even though it is for OCD not mood). Dr Latimer did tell us there would be set backs when he gets sick(I did not expect it this quickly) and we could look at a course of steroids when it happened. Has any one elses experienced this after being on the anitbiotics for about a month? I am use to him getting sick with no other symptoms except changes in behavior but that was always an indicator of strep.....but he is already on the antibiotics. Not sure if it is too early to contact Dr Latimer. Thank you for your help!

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