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Posts posted by kcdc3

  1. My daughter has had PANDAS since January 2006. Also chronic MycoP, that we just found in January 2010. We had a T&A in January of this year. It took about 2 months of worsening symptoms, but we are currently symptom free (maybe one or two OCD things present- but not 20 or 30 like before). She also had PANDAS induced anorexia, which is now normalized. She has crossed the puberty threshold (she is 12) and hoping that is going to help her maintain. She also has not been on any psych medications since December of last year - they ALL made her worse.

  2. Oh...I feel your pain. Our dd11 has had PANDAS since age 6, and we had so many instances of moodiness, meanness, aggression, she at her worst was delusional and has once or twice grabbed a kitchen knife. I also did not think it would ever end, and was at the point where we thought we may have to send her away. She had PANDAS induced anorexia, as well. She is also PITAND with a positive Mycoplasma IGG and IGM. Guess what??? She had her tonsils removed in February of this year. Her IGM is now negative. Still fighting a positive IGG, however. She went into anorexia treatment and is now 2 pounds from her goal weight. Her OCD is next to nothing. She is a happy, content 11 year old. I would consider us in remission going on almost 5 months. She was exposed to several viruses and has not had the canary reaction that she use to get. I am praying, praying -as we all do when remission strikes - that it stays, but like all PANDAS parents - will take it for as long as it is given to me!!! Keep your head up! Things will get better. Keep searching for answers. Don't take "I don't know" or "I've never heard of that test" or "I've never heard of PANDAS - she has OCD" .... DON'T LISTEN....you are the mom - and you know best!! New things are popping up every day!! Steven Curtis Chapman sings a song called "Help Is On The Way" and I listened to that when I was discouraged. Prayers your way mom!!

  3. Absolutely....the ones we have tried have made her worse. We have only tried two - Zoloft and Luvox. Both of them threw her for a loop. She picked up OCD while on Luvox that I have never seen (OCD increased tremendously) and after pulling her off of it, the OCD got better, calmed down, but the OCD she picked up (new things) never went completely away. So every time we put her on one of the SSRI's, she would always pick up new behaviors that would never go away. When not on SSRI's any OCD she has stays the same. Right now she is not on any SSRI and the moods are so much more stabilized and she is not nearly as mean spirited. I don't ever want to go back to them!!!

  4. So I finally had my doc refer us to eating disorder clinic. Intake called today and we have an appointment on Monday. I told my dd about this and she went into a fit of rage. She says that she is going to curse them out and lie to them. She says that she will tell them all the lies she can think of. She said that she has been doing better and does not understand why we are doing this. She said that I needed to be prepared....that she would get worse just like she did when we went to therapy for the OCD. It's threat after threat and she is sooooo angry. She says I will be wasting my money.

    I just don't know what to do. I can't let this go on, but on the other hand if she is so resistant to this, will it do any good and am I really throwing my money away????? Is there any weight to the fact that you have to want to change??

  5. I'm just wondering, though....are dogs like humans where they can be a strep carrier and no matter how many times you treat them, they just still carry it? I know a person like that - she is a strep carrier and no matter how many antibiotics she has been on, tonsils are out, etc. - she still shows up as a carrier.

  6. I've heard this before, but heard it again recently.....dogs can be strep carriers. Just checking to see if anyone on this forum has had their dog tested for strep and if so, what is involved with that and what is the cost? I mentioned it to my vet last year, but she thought I was being a little "over the top" and would not test her for it. She also said it was expensive to test. Well.....our problems started in January of 2006. We got our dog in October of 2006. Not saying that the dog is the reason why we are still struggling, but when you get to the point of trying everything in the world, and exploring all reasons why your child may not be getting better, and this comes up again - it makes you wonder! We just tested her (DD) again and her MycoP is still elevated (IGM), and she has a 1:200 Streptozyme.

  7. We tried a 2 week steroid dose for dd who had tics and OCD. The tics did get worse. Actually, much, much worse. However - after stopping the steroids her tics went away for good. We've been tic-free for a year. The OCD is still there, and as bad as it always has been. Her doctor said the reason her tics got worse was because she was "rebounding" and it was an indication that the steroids possibly worked. I never really understood that completely.

  8. From doctor who had been educated on PANDAS and was completely 100% aware that my dd had PANDAS induced anorexia....

    "Oh, all the weight she's lost from the surgery is nothing to be worried about. She won't have any trouble gaining it back."

    Or from the doctor prescribing new medication (who also is aware of the anorexia) - "Now, one of the side effects is weight gain." Right there in front of her. Great job. You think she'll actually take that medicine now??

  9. Update: Thanks to all of you for responding and giving some encouraging words. She is still not where I would hope she would be. She did start to eat a little more yesterday, but no where near what she needs to eat or drink. It is day 8 and so I'm going to continue to hang in there. Her OCD is really out of control right now and her eating disorder has ramped up. She is on 50 mg of Luvox and has been on that for about 7 weeks. I've seen her OCD get worse since starting that. I asked her pediatrician if I should wean her off and he said that I should hang in there. I'm not so sure about that. We tried Zoloft a few years ago and had the same reaction. I think I'm going to wean her off anyway.

  10. Yes, actually the ENT was very willing to use Antibiotics during surgery (Zith) and gave her a 10 day supply of suspension Biaxin due to her Mycoplasma co-infection after surgery. He did not use antibiotics pre-surgery. My other 2 children (non pandas DD age 8 and non pandas DS age 5) both have strep right now and my son has the flu on top of it. Maybe that is playing in a bit as well?

  11. Well, DD had T&A last Wednesday and things are worse than ever here. She has the PANDAS induced eating disorder and has lost 8 pounds since last Wednesday and will not eat hardly anything at all. I took her back to the doctor today because she is so frail and lethargic. I don't think he totally understood the whole thing because he said that the 8 pounds was nothing that he didn't think she would gain back. To say that in front of someone who is afraid to gain weight concerns me. I'm afraid that she is going to think this new weight should be her new normal, when in fact this new weight is below the 5th percentile. He would not give her IV nutrition although he said she was "on the line". Has anyone else experienced this and if so, did it get better?

  12. My dd has a horrible body image and in fact is our primary OCD symptom - She thinks she is fat and nothing you can say to her will change her mind on that issue. She is 11 years old and is 5'0 and weighs 80 pounds!!! She is skinny as a rail!!! This obsession never goes away, but the intensity of it increases during exacerbations. During exacerbations she will actually not eat. When not in exacerbation, she will eat, but complain she is fat. She's had this since age 6. It is so frustrating to try to help her when nothing you say or anything that anyone else says makes any difference. She is very therapy resistant, as well. I definitely think that if it has been going on for any time at all and other PANDAS symptoms are present, it is definately related.

  13. My dd is having a "canary" reaction to my son's virus. He stayed home from school today sick and she has been on Erythromycin for the past 12 days. She has been doing wonderfully (amazingly wonderfully). Today - she comes home from school, looks possessed is being mean and looks like a deer in headlights. She also has some tics which we have not seen since February. Does anyone have a medical explanation as to what is happening ... a link would be good - I am trying to explain it to her teacher. How in the world do you explain how your child exhibits these symptoms when someone ELSE is sick????

  14. I am at my wits end with this stuff.....Biaxin is the only drug that we have taken so far that we have seen a tremendous improvement with. On Biaxin, we went to 95% functionality. Docs will not continue it for fear of long-term use issues. I have resisted trying SSRI's or SSNI's since the experience we had previously with them has been horrible. Someone told me that Effexor tends to work well. Just wondering if anyone has experience with this in a child (my dd is 11) with PANDAS.


  15. Thanks to you all for your supportive words. I have not read The Explosive Child. I will look for it at the library. We have done a steroid burst (good results, but a really bad re-bound, wherein tics ramped up to 240 times an hour). After the burst they started to decline. Biaxin took them away completely. We have tried all the other antibiotics, but have not done IVIG. She has had CBT which did not work for her. I've tried to find a therapist that does ERP, but without any luck. She starts therapy (again) this week, and we are trying play therapy. I wonder if anyone has tried that? She is 10, but the therapist thinks it will benefit her. DD told me that she thinks she is going to feel stupid. If it makes her feel that way, we will certainly discontinue it and keep looking for someone who will do ERP.

  16. I think that one of the hardest parts of living with a child with PANDAS is the verbal abuse. I want her to know so badly that I am trying to do what's best for her, but to her I am her enemy. I am trying to take away what has become her existence (her OCD). I have been hit, yelled at, called names and been told that she hates me I bet one million times. And what is hard about this is that the other children see her doing this and it makes them think that they can use those cards. I have tried disciplining her for these things, but it does not work. The very next hour she will do them again. She almost always apologizes after she sees that it has hurt me, and of course, that makes me even more sad. She has been off of her wonder drug (Biaxin) for almost a month and she is exacerbating badly. We've been told that we can not do any more due to the danger of using it long term. I am praying through this break in time and hoping that we can have it back in the fall. Can anyone give me any suggestions on how to cope with this behavior?

  17. Update: My dd (10) was found to have MycoP in February...has been treating with Biaxin ever since and we now are back 90% or so. We are not going to be repeating the Biaxin again, at least not for a while. What does anyone think about Staterra? Is it able to help once OCD subsides considerably to kind of give that final push? Or does it only help with hyperactivity? She is definitely not hyperactive, but very very disorganized and forgetful....almost spacy. Does not pay attention to detail at all. Would love everyones' thoughts.


  18. Lynn,


    You said Mycoplasma was previously negative.....was that just IgM? How about IgG? Some docs do not treat a high IgG thinking it means past infection, but I am proof that you need to pursue treating a high IgG!! My dd had high Myco IgG, but negative IgM, has been on Biaxin for 90 days and is doing well. Not completely cured, but leaps and bounds from where we were 3 months ago. No tics at all (we were having 240 an hour) and OCD down probably 85 - 90%.



  19. He NEEDS this abx, but I'm scared to cause problems down the line. But I don't want fear to dictate my decision. I want to base it on facts & what works for my child.


    Simplygina: My sentiments exactly. My dd NEEDS the Biaxin, but that is exactly what scares me - what am I doing to her in the long run? But then again, what am I doing to her by not treating? Dr. T says that he thinks she can go another round. We did test for c-diff and it was negative. Wonder if we need to do any liver function tests or anything else of that nature. In my opinion, Biaxin has been a MIRACLE drug. We suffered for 4 years before finding it. There is absolutely no denying that it works and works well.

  20. I have not posted here in a while because my dd was 99.999% cured while on Biaxin. We did a total of 60 days worth. We've been off of it now for 3 weeks and she is deteriorating daily. Dr. T has her on a prophylactic dose of Zith (1/2 tab twice a week) plus one Advil a day. I do not see that helping at all. I feel like the only thing to get her back to what we saw the past 60 days is to go back on the Biaxin again. Has anyone been on this stuff longer than 60 days??

  21. My dd age 10 has been on Biaxin for nearly 60 days. She had high IgG, not high IgM. It very clearly works for her. We call it a miracle drug in our house. We know for sure it's working because we tried to go without it for 2 weeks and she spiraled back down to where she started and she had come to about 95% improvement during the first 30 days. It's frustrating at times because she would get better and then there would be a period of time where whe thought she had plateued. Then, she would go forward again. During this last round, we have seen even more improvements. I would say we are back to 95% inching up even closer to that 100%. I would say the one thing for sure that it did, and did quickly was stabilize her mood. Her mood is phenonmenal while on it and horrible when off. Biaxin works for her almost like an SSRI would work for someone with straight OCD. Just last week she stopped wetting the bed for the first time in years. I'm still trying to figure out if that is the Biaxin working on the PITAND or her age. I'm hoping it's the Biaxin working on the PITAND!!! ON another note, I would love it if you could PM me and let me know what Dr. Nicholson said as to his reasons for treating IgG.


  22. DD age 10 is on her 2nd 30 day course of Biaxin. We went without it for 2 weeks and clearly spiraled downward, so we know for sure it's working. I am so happy to say she has not wet the bed for one week straight now!!! I'm just wondering if the Biaxin is healing her slowly or if she just simply grew out of bedwetting. I find it somewhat coincidental that she was peeing a tremendous amount nightly and then after starting Biaxin, it stops. :) I'll take it whether it's Biaxin or age, though!!! I'm hoping, however, that it's Biaxin and her body is slowly healing. Just wondering if anyone else's child stopped bedwetting after being on antibiotics for a period of time. .......

  23. Here is what I know about Mycoplasma. Mycoplasma is tested using an IgG and and IgM test. If you test positive with an abnormal IgM, you have a current infection. If you test positive with an abnormal IgG, one of 2 things are going on. One, you have had it in the past. OR, you currently have it. Confusing, yes. Labcorb states on it's site regarding Mycoplasma testing that you can test positive IgM on your first exposure, but any subsequent exposures, you may only show a positive IgG, not a positive IgM. So, that is the basis for treating a positive IgG IF you have symtoms - and in some cases, with our PITANDS/PANDAS kids, the symptoms are OCD, tics, rages, etc.

    We had the whole families IgG and IgM titers ran. I, in particular, have a very high IgG. My PANDAS/PITANDS daughter also has a high IgG, and also a "higher" IgM, but not high enough on the IgM to be considered active. However, her symptoms were enough (Very bad OCD, rages, etc) that her doctor chose to treat her. (I don't have symptoms that I know of, so I think we are going to monitor mine to see if it rises). She's currently on her 2nd 30 day round of Biaxin and doing great. Her strep titers were never high, so I think this was definitely her "trigger" . She may also have Lyme, we are not sure.

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