qannie47

That is the million dollar question.....I know that is has been theorized as part of the healing process, die off, etc., but I am not sure anybody really knows...But it is real, and it happens...

Thanks PowPow....I get the skepticism.....although at this point, If I saw a pink elephant fly across the room...I would believe anything...in fact, I think my calm response would be, "Hey, look at that pink elephant flying across the room"...and then I would go back to my conversation without missing a beat...

Although tomorrow, I am adding 5htp to his dies. 50 mg to start once a day. Got through biotech...Peds diet gave it the thumbs up and could not find any bad reviews....

Nothing, just stayed on abx course, of amox/clave, 500 mg 2x day.....this is day ten on higher strength....it is at these moments, that this disorder appears magical....you never quite get used to it....the ups or the downs...magic

I don't want to get my hopes up, but as of early last night, I felt the energy change in ds. (at this point I think it is a maternal thing). First, he made it through Karate without Ticking. Second, he sat calm last night with no great motoric movements. Third, this morning he woke up for the first time without going into verbal bird calls and antagonizing his brother. Fourth, when he realized that his skateboard was broken and unable to be ridden to school (you have no idea what kind of tantrum that could have produced), he handled it.....Later, his principal called at the end of the day and said, I quote, "DS had the best day that we have seen in weeks! He only needed 2 redirections all day. I personally stayed in class for 1 hour, and he did great". When I got home from work, my husband reported a great night... I must say, I have not seen him make it through an entire day like this in weeks...at the risk of sounding dramatic....Please Dear God....let it be....p.s Thanks for all the cyber hugs...I needed them.

I have heard that dosage is important when treating Pandas, it is a much heavier dosage I think..My ds was monitored the whole time by nurse and doctor. I am surprised that it is administered at home.

Otksmama: the fact that he could not find a current infection with blood work...that being said, he really did not want to definitively answer my Q, "Do you still think it's Pandas?". He said that he has seen too many scenarios to second guess anything to quickly....so I wonder if the steroid burst will cause him to reconsider his Pandas diagnosis if he does not respond. He will get it soon if he does not turn around.

My opinion is that the reason some people feel better during pregnancy, especially after week 8-12 is because it is at that time that progesterone really kicks in to sustain placenta. I remember never feeling better, emotionally speaking at that time, and I wondered if there was a correlation between mood disorders and progesterone after having that experience. So I find this thread interesting. I can't see why birth control would work, because it mainly works on estrogen levels. I know wild sweet potato's are supposed to have natural progesterone in them.....

Dr. K said his own blood work came back showing no infection...He wants to continue on abx for five more days, and then steroid burst if no improvement...When I pressed him for thoughts, he said with no infection, it is less likely that this episode is resulting from Pandas...although he added that he is not ruling it out because he has seen everything....I just don't know anymore. If he responds well to steroid, would that support the Pandas diagnosis? I would like some thoughts...Ty

My ds's doctor from children's called today to see what our end result was...Thank God For HIM. He disagreed with what they said, pretty much in it's entirety...He also said he still agrees that we are dealing with Pandas and he thinks that we should stay on course with treatment with Dr. K...He said that if he were in my shoes, that is what he would do...it is so nice to see a doctor who is humble enough to admit that he does not know everything and is willing to think out of the box.....when I shared the diagnosis, and quoted what the doctor said, he used terms like "that is utterly untrue", and , "I don't think you missed anything, as a mother you have been on top of everything, so I don't agree with that".

Thanks for your suggestions everyone. I think the people in the forum should all receive honorary doctorate's. I am so grateful that this site exists.

I am just so depressed. I like the idea of treating one symptom at a time. We have decided to follow the course with DR. K. Truly, while he may not have been a great fit for all, he seems to at least understand this. My ds will finish 5 more days of abx, and then if not 100% improvement, he will do a steroid burst. Not sure what the expect at this point, but it's all we got... But I can't give up...I am just so concerned about his school, I think his school also feels that they have never seen the pattern of symptoms before either. They are probably the best thing we have going for us right now. That being said, how long can they keep up with a child who needs to be managed all day long by either the school psychologist, a teachers assistant, or spend half the morning with the principal whom takes him for walks, or to the playground. Eventually something will give on their end as well. His twin, who is ODD, has unraveled with this 3 1/2 week long episode...everything I have accomplished with him is falling apart before my vary eyes...that alone is a heartbreak. We have decided to separate them as much as we can, one with dad, one with mom...the effect of what pandas is bringing to the household is just too much for his twin, age 7 to bear....This was a big hit for me emotionally. To see the disdain, the lack of compassion for my child. I am strong, I will recover and continue to fight for both my children...But this was a hit.

MRI: Normal at first glance reading EEG: Normal at first glance reading Blood work: inflammation: normal, Thyroid: normal, everything else: normal. They will send me a copy of all test in it's entirety. Spinal fluid: no initial inflammation detected. 4-6 weeks for results Diagnosis: This is not Pandas because there is no way to conclusively test for Pandas. This is not encephalitis because his EEG was normal and so were blood results. This is not an auto-immune disorder because the above results would have showed something. Dr. feels that he does not fit the criteria even if it existed because his tics are not repetitive. I guess repetitive sommer saults for 2 hours straight, climbing up the same 3 stairs for hours at a time, nail biting too the point that he was ripping off strips of skin from the pads of his fingers, facial grimacing, bird calls over and over are not impressive. This is most likely symptoms of my ds's mild Hypo-sensory issues. And they have probably been there all along, but I MUST have missed it. Hypo-sensory kids are red flags for going on to psychiatric problems. SOLUTION: Put him on a sensory diet and see a psychiatrist. Past 100% remissions with abx and IVIG is a coincidence. Any positive improvement with a steroid burst is only because "steroids can produce a feeling of inner harmony and that is why people become addicted to them". If a burst works, it is no indication of an auto-immune problem. DR. K "see's what he wants to see" My issues with their diagnosis: My child was sudden onset with issues and there has been repeated evidence that abx and IVIG works back to 100% for sustained long periods of time. My ds's sensory issues were never huge and never got in the way of his life, plus, his Pandas symptoms are not similar at all to what we experienced with his sensory issues. I now have had 3 consults with Psychiatrists, now including theirs, and yet none of them can come up with a psychiatric diagnosis that fits. I have read on steroids, and have found no evidence that they work to help mood swings. On the contrary, they seem to cause them. So I guess if DR. K is seeing ONLY what he wants to see, could that not be the same for this doctor? In the end, I was not impressed. I felt like everybody was looking at me like I had a third eye. I felt like everybody was looking at my son like he had a behavior problem. I felt like they had diagnosed him before he even got there. UGH

One other interesting thing I read, it appears that first symptoms seem to be viral, flu type infection. But if it started years ago, in some of these people, I can see where the connection would not have been made.

I have recently read quite a bit on this. I think this discovery might be the Tip of the iceburg. They are finding these antibodies in all different kinds of psyche cases from what I can tell, and it seems to be causing quite a stir. While mostly girls, and often ovarian tumors present, there are cases as well without tumors, and in boys. It appears that the psyche symptoms are present first, without any physical symptoms. I have not been able to find anything that correlates a time line for disease progression. But it appears, left undiagnosed, physical autonomic symptoms follow...but again, what is that timeline? They talk about patients having had diagnosed with schizophrenia, and other behavioral disorders that were present for years, with no other symptoms, and when tested, they are positive for these antibodies. When administered IVIG, plasma exchange, or steroid, all psyche symptoms have gone away....so what does that imply? It certainly strengthen our case with our DS, who responded beautifully to IVIG for 12 weeks....hmmmm.

Trintiybella, I can't imagine going what we all go through only to have doctors look at me like I am crazy. I am sorry that you have experienced that. We have been lucky that ds's pediatrician had some experience first hand with another Pandas child, so he got it. So he goes to bat for us. The neuro, who is admitting him today also ascribes to the belief that some psychiatric symptoms are autoimmune related. In fact, he has done research on this specifically, and gets funding from NIMH from what I have read. So, hopefully, we are with the right people. Perhaps our experience can help to shed light for all of you....I will start a thread specifically to keep all of you about tests done, and results.....

What I find Ironic is that I just read about this for the first time when I decided to post the link....and the very neurologist that my ds's peds doc called for a consult actually has done research on this very same disorder. So, It will indeed be very interesting to see what direction he goes in with my son. He already stated to our peds doc that he thinks that this is autoimmune based.....

I hope they find something that will provide some answers. Of course, the hospital failed to call today to start the admitting process, our doctor is disappointed. Hopefully they will call first thing in the morning so we can get this going.

Ds who has taken a turn for the worse is going to be admitted to Children's tomorrow. His pediatrician did a phone consult with a neurologist there and went over his history. The particular neuro has specialized in autoimmune/psychiatric symptoms and believe that this is auto-immune based. According to my ped's doc, he believes in Pandas....DS will get MRI EEG Spinal tap, etc.....My ds has become someone else. Withdrawn, blank stares at times, very dark, trigger rages at any little thing, short term memory decline, sleepy .... This is so far off from his baseline personality it is almost a polar opposite......I just hope we find some answers....Prayers...

momwocdson, your description of short term memory, executive functioning is dead on..while my DS has been on the weak side of the fence regarding short term recall, it has never been this bad.....

p.s. aso titers NORMAL. but im not surprised

If you have followed, 3 weeks into an episode. I can safely say that this time around, it has had new symptoms. School called for me to pick him up. Nice, but at a loss. Short term memory loss in a big way. He seems unable to remember 5 minutes ago...Really????? High anger, high agitation. Picked him up and went straight to ped's office. He ordered an MRI. Called neurologist.(who could not see him until January..wt..) He ordered Tenex to calm him...gave 2 hours ago..NO EFFECT. I am losing my child. He looks and acts like the junkie that you see on the 6 o'clock news. MRI on Thursday morning. Might admit him to Children's Memorial Chicago, if Neurologist can't see him..have to get something going...OMG.

I find it highly disconcerting that when it comes to IVIG, many in this forum do not experience much relief. Or if success with 1st IVIG, it is not the same with 2nd or 3rd. Yet it is the touted as the BIG treatment for Pandas, and the collaborative studies show great success...yet in real life, I am not seeing this.

are any side effects to 5htp? It was recommended as a serotonin supplement but I have been afraid to try it. could it help with mood swings?

Saw Dr. K today. He looked sincerely down hearted about the 3 week long relapse. Although he stayed optimistic. He said that it is not unusual for a long relapse. He said that we can still be optimistic about IVIG being a success and that while other relapses can occur, hopefully, in his experience, future relapses will get less intense and farther in between. (I did not remind him that this current episode was at bad as the first, if not worse in many ways, and all the ones in between were mild compared to this one, before the IVIG). He ordered 3 blood tests looking for infection. He changed and increased his abx to augmentin 500 2x a day for 14 days. He said that if this does not do the trick, he will do steroid burst... I thought of some of you when he talked about the importance of ruling out any infection BEFORE DOING A STEROID BURST. He said, "If there is any infection in him, the steroid will make him worse".