Possible PANDAS? please help!

[porkchop]

Just as expected, after 12 days of laying in bed, pacing the floor not eating my son is back to his normal self. However on Monday and Tuesday he was very repititive in his words. He just kept saying the same thing over and over again(could this be vocal tic). When you talk about symptoms waxing and waning, could this be the "cycling" that I refer to? My sons just happen to be every 12 days, so I call it "cycling" He did have a bit of a runny nose last week and he kept wiping his face with his sleeve to the point he gave himself 3rd degree burns under his nose and on his cheek. Could this be OCD? He also did this exact same thing back in April a few weeks before this whole situation started. The more I read on here the more I am convinced that this could be pandas. So far I have gotten no where with MRI, all kinds of bloodwork and Dr. appts. Each time he comes out of his episode I pray that was the last time, yet it comes back every time and has been going on for 4 months now. I just want my child back. This has been exhausting just watching my child slip back into it, knowing there is nothing I can do about it. At least not until we have our appt. on Oct 28th, but even then I dont have alot of hope that the Dr.s are going to be able to help THIS situation. I do have hope as far as a diagnosis for genetics. So I guess for now I will just have to enjoy these next 2 weeks with my "normal" son. I am just worried that one of these days he will go into an episode and not come out of it. This is sooooo frustrating!!!!

[kimballot]

I think I missed some of the cycle when you first posted.. so he has 10-12 days of symptoms followed by 10-12 days of no symptoms and then 10-12 days of symptoms again? Hmmm.... it is very interesting, though I am sure you would rather not be living it. Do you give him any supplements or medications when he is having symptoms? Something that may build up in his system to trigger relief? Something that you maybe stop once he is feeling better, and then there is a build up again until the symptoms are triggered?

[porkchop]

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Edited October 7, 2010 by tiredmom

[porkchop]

Yes, he has these symptoms for 10 to 12 days then he is fine, then he has them, then he is fine. It has been going on for 4 months this way. He hasnt been on ANY meds except for the 10 days of amoxicillin in July for strep that was discovered only through a bloodtest. I dont give him anything..no herbs, no meds, nothing. Unless there is a certain food that may be triggering these episodes? But his diet has not changed, he eats the same stuff he always ate. The dr. thinks he has a metabolic disorder that my be causing these episodes? He does have high lactic acid? and also ketones in his urine which suggest a metabolic disorder. I dont understand how he could have a metabolic disorder all his life, but these behaviors only occurred these past 4 months? I really feel that all this is in relation to the fever, the vacinne maybe? the mono and the strep?

[Fixit]

Yes, he has these symptoms for 10 to 12 days then he is fine, then he has them, then he is fine. It has been going on for 4 months this way. He hasnt been on ANY meds except for the 10 days of amoxicillin in July for strep that was discovered only through a bloodtest. I dont give him anything..no herbs, no meds, nothing. Unless there is a certain food that may be triggering these episodes? But his diet has not changed, he eats the same stuff he always ate. The dr. thinks he has a metabolic disorder that my be causing these episodes? He does have high lactic acid? and also ketones in his urine which suggest a metabolic disorder. I dont understand how he could have a metabolic disorder all his life, but these behaviors only occurred these past 4 months? I really feel that all this is in relation to the fever, the vacinne maybe? the mono and the strep?

 

this may seem pedestrian for all of the knowledgable people here...

and may have been mentioned..

but other than lyme..have you thought about some other parasite that may have a 10-14 day life cycle?

[porkchop]

I have asked his doctors on several occasions if he could have parasites. I was told that if he had a parasite he would have severe diareha, or vomiting. Funny not one of them has ordered a stool sample yet. I even told them that this all starts with a bout of constipation, and a day or 2 before he comes out of it he has a massive amount of diareha, and then he is ok for 10 to 12 days. Each time I suggest a parasite they just blow it off. A stool sample is not that hard to order, but how do you get a Dr. to order something when they dont beleive that it is even a possibility? Maybe a certain food is triggering these episodes? I dont know...its puzzling and exhausting!!

[porkchop]

Well, just like we expected ITS BACK!! Everything was going well for the last 10 days, and this morning on day 11 all the sudden he is having an episode. He didnt get out of bed until 1pm today, and when he did get up, he just paced the house in circles, refused to eat anything, complains of his neck hurting, and then crawls back in bed and just lays there staring off out the window. He shows no emotion during these episodes, doesnt play, doesnt care about anything. I am so sick of this!! This is 5 months that these episodes have been occurring every 10 to 12 days and I am emotionaly and physically exhausted. What is wrong with him? Why cant the doctors figure it out. I just want to scream!!!!!!!!!!!!!!

[tired mom]

Well, just like we expected ITS BACK!! Everything was going well for the last 10 days, and this morning on day 11 all the sudden he is having an episode. He didnt get out of bed until 1pm today, and when he did get up, he just paced the house in circles, refused to eat anything, complains of his neck hurting, and then crawls back in bed and just lays there staring off out the window. He shows no emotion during these episodes, doesnt play, doesnt care about anything. I am so sick of this!! This is 5 months that these episodes have been occurring every 10 to 12 days and I am emotionaly and physically exhausted. What is wrong with him? Why cant the doctors figure it out. I just want to scream!!!!!!!!!!!!!!

From one tired mom to another just want to say I am sorry your dealing with this. This one has me speechless. I think I would insist on a stool test. Just call your Dr. and insist you want to have it done. You don't even need to take your child in, you can tell them to write out the orders you will pick it up and then stop at the lab and they will give you something for the stool and have your son do it at home. Good Luck.