kcdc3

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.

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!!

Has anyone experienced hot flashes after having a steroid injection for bronchitis?

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!!!

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??

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.

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.

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.

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??

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.

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?

My dd calms down as well, but she hallucinates if she is sleeping. She will wake up with vivid horrible hallucinations.

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?

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.

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????