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  1. my son was dx with hashimotos 1 1/2 years after pandas symptoms started. Dr. B just told me last week that it looked like he was just "hypothyroid" according to one lab report that I happen to bring with me to our appt. I told him the endo dx hashimotos (where else would I get that from?) I am wondering why he is questioning it. All of the info I read says that just about all aquired cases of hypothyroidism in children are autoimmune (hashimotos). He is running all of his thyroid levels again but he has been on thyroid meds for almost 2 years now, again, not sure what he is looking for. I still am not sure how my son aquired it...we have NO thyroid disease in the family at all, but it came on with the pandas...I have always thought PANDAS was the cause of it for my son.
  2. Thank you for all of the responses. My son started with the urinary frequency as soon as the pandas symptoms began 3 1/2 years ago, and I guess if I think really hard there have been times when it has "improved" but has never been back to his normal habits before pandas symptoms. Its hard for me to say if he flares when sick b/c my son is one of those kids who we suspect reacts to others when sick but does not necessarily come down with the illness himself each time. I can't image it would be a UTI since we have been dealing with it for 3 1/2 years and he has been on 2,000 mg abx/day for 3 months now. He also says he does not feel any discomfort at all when urinating...he just always has to go...and it is a normal amount when he does. I am going to have his urine cultured just to be sure, but with the abx I'm not sure anything will show. He is on an SSRI, but again the symptom was there long before he started the meds. Interestingly...his dr tried him on clonidine for sleep recently and he began to wet himself at night, I realized it was the clonidine and took him off of it right away since he had never wet himself at night before. I am just perplexed by the amount of urine he produces, the frequency of urination, and how it connects to pandas. If there are any other thoughts please share, thanks so much! Stephanie
  3. My son has been sick for over 3 1/2 years. We have just received a pandas dx from Dr. B recently. One of my son's most difficult symptoms is urination frequency/urgency. Can anyone tell me why they think this is related to pandas? I know that it is b/c Dr. B agreed and I have read about it in several articles, but I just don't understand the reason for it. Even when he seems to be doing well, no flare ups, stable mood, the urination issues never show improvement. Sometimes I worry that there could be something else going on because it is such a problem for him and it just does not seem to be connected to the other symptoms. Any thoughts would be appreciated.
  4. Thank you so much for the response. I am wondering from what you are telling me if there could be a connection with the fact that his labs also showed that he never developed any immunity from the TDap (tetanus) or in the fact that he developed Hashimotos (autoimmune thyroid disease) at age 7 when all of the pandas symptoms started? Maybe as you said he may have an immune deficency? Hopefully we are on the right track now because Dr. B ordered lots more lab work to be done, and I am very grateful that we have found him.
  5. Well, we had our very long awaited visit with Dr. B yesterday and he agreed that my son's symptoms are pandas related. I was hoping that someone could explain to me a little further about what I learned yesterday? He said that there are something like 12 or 14 strains of strep (is that correct?) and that according to my son's blood work he does not have immunity to any except one of them. Forgive my ignorance, but how does this happen? This is all new to me...are children immunized for strep (didnt think so), or do we produce our own immunity for it? I feel so foolish to ask these questions, but I need to learn everything now. This has been a 3 1/2 year journey that has taken away my son's childhood and severly affected my family. He said that my son could be reacting to those around him that are infected with strep or even those who are carriers. Can anyone explain how the carrier thing works? How could I or someone else be a carrier of strep and not be symptomatic? And this could still cause my son to be reactive? Again, I appologize for the pure ignorance. Lastly I wanted to ask about doing a steroid treatment. I know I have read words of caution here about doing it. He gave us a 2 week taper down RX. What is the reason for that? What are the pros and cons for using it? I have to say, I was almost surprised that he dx my son with pandas b/c he does not have tics, nor does he have the traditional OCD type behaviors that I read about here. He has so many other symptoms that Dr. B picked up on right away, infact he asked me if he could keep the handwriting samples I had brought, b/c it clearly showed how it has affected his motor planning and coordination. (I hope he shows it as an example next time he is on TV...it has very rude comments from his teacher written all over the pages about my son's "SLOPPY" handwriting. I bet she would believe me now! Thanks again for any help. This group is always so supportive! Stephanie
  6. my son was just dx with pandas by Dr. B and he does not have tics.
  7. The hardest part of a "back slide" is the fact that my son gets so out right nasty. He has no ability to control his emotions when he is like this, and I honestly feel abused when this happens. I know that sounds selfish...this should be about him, not me...but I have been living with this for 3 1/2 years and to have 6 wonderful weeks and then get the rug just ripped out, is just so unbearable!
  8. Stephanie -- I know it's hard, but try to hang in there. And yes, we went through a similar pattern with our DS in terms of healing on Augmentin. Now, while it's not to say that you may find out that you need to add some additional immuno-therapies and/or even switch antibiotics in the end, it wouldn't be unusual for the "saw-toothed" recovery pattern to strike about now. I know it's demoralizing and it can make you question your sanity and belief in the path you've traveled thus far. But chances are it will get better again. It seems he's encountered a cold virus that is taxing his system and the antibiotics have no impact upon. I would suggest you try the following: add ibuprofen into the mix and see if that helps your DS through this hard time; try another addition such as valerian root to help take the edge off of some of the anxiety. You might also try upping your DS's zinc; not only is it good for fighting the common cold, but there's some evidence it can help some behavioral issues, as well, such as ADD/ADHD-like attention concerns. As for his school and teachers, do your DS have a 504 or IEP in place? If so, this is when you call upon those accommodations and let the teachers know that now is when he needs them. If not, you might consider asking for a meeting to begin the process so that, in times like these, the teachers will be supportive because they are legally obligated to be so, and not because they're doing your DS any "favors." Failing that, you might try calling him in sick and home-schooling for a week or so to see if you can get the behavioral issues in hand, providing that won't lead to school refusal when it's time to go back. Actually, I am a special education teacher in a local school dist. I work with children with ASD, so I can not home school him. He has a 504 plan and my pediatrician even called to explain PANDAS to the admin and staff, but his teacher could care less. She just sees my son as a behavior problem and contributes to his low self-esteem. His strep titers were normal when we started abx. He was high for myco p. He had chronic croup and sinus infections for years, I believe that is what caused his symptoms. He also developed Hashimoto's when all of the symptoms started. I have him on inositol, along with other meds. I will try to add zinc and the valerian root. I did put him back on ibuprofen. I guess I just never made a connection with him reacting to others b/c he never really had a good period for very long, it just seems he has been symptomatic for all these years.
  9. My son will have his 1st appt with Dr. B on Feb 8th. He has had pans symptoms for 3 1/2 years. Back in November, just as I thought I was going to have a nervous breakdown my pediatrician referred us to Dr. B but started him on augmentin while we waited for out appt. About 2 weeks after starting abx in Nov I started to see a change in my son. Up until about 10 days ago when he got a simple cold he was doing fantastic! His coughing tic was gone for the first time in 3 yrs, his anxiety was dramatically reduced, and we have not had a rage attack in over a month. Now it seems like we are back to square one and I just want to cry!!! How could all of the old behaviors have come back like that? Just from a simple cold that he actually got over quicker than usual? It is like night and day! I am so desperate to get my son back again, how do I do that??? I feel like someone played a very cruel joke on us. My son and my family have suffered so much for well over 3 years with no help and no answers, and for the last month it was like having that little boy back that I once knew that was stolen from me, and now he is gone again. I don't think I will survive until our appt with Dr. B., especially b/c his teachers are NOT understanding or supportive at all! Has this ever happened to anyone where your child was doing great for a while and then went down hill? Does anyone have any advice? Stephanie
  10. My son was dx with Hashimoto's a year after all of his symptoms presented and he was not responding to any psych meds. A psych dr that we were seeing at the time sent him for blood work and found his levels to be more than 2x normal. An endo dx Hashimoto's b/c his ANA levels were extremely high also. His thyroid levels have been back to normal range for almost 2 yrs since he started treatment, but his pans symptoms are still there (waiting for 1st appt with Dr. B in 2 weeks!)
  11. We are still waiting for our first visit with Dr. B in Feb. I just wanted to comment on the thyroid issue. I would love to know how many pans kids have thyroid disease. My son developed Hashimotos which is autoimmune thyroid disease when he first presented with pans symptoms. It was so far out of the blue, but then again so was the "explosion" as I refer to it. I honestly believe his thyroid disease is tied into his pans. I do not believe he would have developed it otherwise. I also want to say that I have totally been where you are. I have lost my faith and trust in drs and I am praying that Dr. B will restore some of that for me. Keep up the good work, I know how exhausting it is.
  12. I am so happy to hear that there are Drs that do believe that there may be a connection with myco p and pandas symptoms. We are waiting for our first appt with Dr. B in Feb. The only thing that came up on my son's labs were high IgG but IgM was normal. Pediatrician says its ONLY a past infection though he has a chronic croup like cough for years.
  13. My ped dr seems to be convinced that the IgG levels only indicate a past infection and does not want to change his abx. This cough has been the one single constant throughout this entire 3 1/2 year experience that we have been searching for answers to find out what happened to our son! I truly hope Dr. B will look at things differently, but we have to wait until Feb to see him. Thanks for your help and I would love to hear more about your daughter and how it affected her (I'm new and just learning how to send messages, don't know how to pm someone first yet ) I would recommend that you see a LLMD (PM me if you want suggestions.) Here's why. MycoP can be a co-infection of Lyme, and many people are finding that they and their children, do in fact, have lyme and other co-infecitons in addition to strep (we are one of those families...I never would have believed it, but clinical signs were very, very positive.) Also, LLMD's are very used to mixing abx cocktails, and honestly that's what you are needing. I had mycoP for probably 3 years...I was very symptomatic, and not one dr. tested me for it, until Dr. B. tested the whole family as standard practice to see if that's what was causing the kids to be sick (in addition to known strep.) My IgM was out of control, as was my IgG. My DS's IgM was borderline, and IgG was extremely high. My children's IgG was quite high, and more recently, DS16 has gone up again (I need to call LLMD, because we are clearly fighting multiple infections...strep super high, too!) Again, even if this is not Lyme (and please, people...don't get on my case about the Lyme issue), I have found that LLMD's really do have the best idea how to treat something as tough as MycoP. We have now been treating mine for over 1year, and it took about 3/4 of a year for me to finally stop coughing. I am also seeing a Lung Specialist, who has told me that I appear to have some permanent lung damage from it. Even he is deferring to the LLMD, as he was surprised that we have been able to get the amount of abx over the amount of time needed. And, as Bat-Sheva said, IgG does not only mean past infection. Even the lab report says that, if they would take the time to read it. The lab report says it "frequently" indicates past infection. Thank you so much for all of the great information...crazy question, but what is a LLMD? A lyme specialist? His lyme came up non reactive on all bands, labs were done at Quest lab, not Igenex, but wouldn't something show up? BTW...I looked at the lab report and it states "a positive result indicates that the patient has antibody to mycoplasma. It does not differentiate between active or past infection. The clinical diagnosis must be interpreted with the clinical signs and symptoms of the patient." Am I crazy, or does that mean if my son still has a chronic cough and his IgG came back HIGH, he could still have an active infection and that could be causing his pandas/pitand symptoms??? Meanwhile he is on 4,000mg of augmentin/day until we see Dr. B in Feb, which won't treat the myco p and if that is what is causing his symptoms, then isn't he taking the augmentin for several months for no reason?
  14. I have had great success with inositol with my non-pandas son (although not sure he is a non-pandas...will see what Dr. B thinks). He has tics, OCD, ADHD, and anxiety. He is on prozac but never had great success till I added the inositol. His anxiety and OCD are rarely a problem any longer, and I know it was the inositol. He is 12 and a real light weight, about 74 lbs. I started with 1 500mg and worked up to 2 500mg in morning and 2 at night, with only positive results. My guy is sensative to meds b/c of his tics, but never had a prob with inositol...its been the best thing for him. Good luck!
  15. My ped dr seems to be convinced that the IgG levels only indicate a past infection and does not want to change his abx. This cough has been the one single constant throughout this entire 3 1/2 year experience that we have been searching for answers to find out what happened to our son! I truly hope Dr. B will look at things differently, but we have to wait until Feb to see him. Thanks for your help and I would love to hear more about your daughter and how it affected her (I'm new and just learning how to send messages, don't know how to pm someone first yet )
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