nicklemama

Yes. He's young, so the words he would be compulsed to say were things like poop, butt, penis. He'd be talking about something and then some sentence would come out w/ one of these words in them that was not part of the conversation. He's been slipping on prof abx and he actually did this yesterday. His primary presentation and symptoms of PANDAS were not tics but separation anxiety, anger/irritibility/rages and ocd's. He developed motor and verbal tics about a yr after first exacerbation, right before his diagnosis. They went away w/ abx. Cindy

We adopted our son and have no family medical history on him. Its not relevant for me to answer but I did not have PANDAS. I had a few strep infections as a child. Always took erythromycin (I have a penicillan allergy) and it always cleared up. The last strep I recall was when I was a senior in high school.

It was very blatant that something was very wrong w/ my DS. He woke up one morning tantruming and it went downhill from there. Severe separation anxiety, anger, irritibility, raging, ocd's, fears. He literally woke up one morning a different child. It wasn't something that just sort of gradually slipped up on us. Those were the intitial symptoms and they hit him like a Mack truck. Cindy

DS 5.5 at first exacerbation. 6.5 at diagnosis. Just turned 7. He went off daily abx a month ago and onto prophylactic 2x a week. He is sliding downhill slowly. Need to have a consult this week and see if we can do more frequent prophylactic abx or what we need to do. He was nearly 100% at the end of 60 days of biaxin.

Wilma- I am so glad for you and your girl that you are finally seeing improvement. Cindy

I can totally understand. Over Christmas, my mother said she never really thought there was anything wrong w/ our son. Well, she lives 1000 miles away and sees him a few times a year. Add to that, he is capable of holding things in when he needs to. The school must think I'm a lunatic. DS has never had problems at school. Even our friends have never seen him at his worst. I just wouldn't expose him to others when things were really bad. He wasn't all that bad in the doctors office either. Oh, and I've had numerous people question why I'd give him long term antibiotics. Didn't I know I was setting him up for resistance? I always answer w/ what would you have me do, let him be mentally ill? Is that a better choice? Heavy duty psych meds are preferrable to the chance of resistance? Cindy

Wilma- Is the 5mg of Lamictal a typo? That is a very tiny dose. My DS7 takes 50mgs lamictal 2x a day. 75-100mgs is considered the bottom of a therapeutic dose. My DS started out at 25mgs a day and it took several months to work up to 100mgs. We did see a reduction in the raging from lamictal but it did not totally wipe it out. Cindy

I have wondered the same. It is possible the Flu Mist was a red herring that just happened to be given when he was brewing strep or it made things worse than they might have been. I doubted myself many, many times while pursuing PANDAS for my DS7. It kept me from being more aggressive and letting it go on for so long. He's always been so healthy and rarely sick. However, looking at his sudden onset and symptoms, he was classic for PANDAS, if you can overlook the lack of confirmed strep. My friend's kids were/are sick all the time. Its always something....coughing, runny nose, fever, etc... My son would not get sick even w/ exposure to their sick kids. The jokes on me since he has turned out to be the "sickest" one of them all. Cindy

My son has normal strep titers. They show absolutely no evidence of strep. He's never had a throat culture done. Strep was never suspected. He's rarely sick. He has not had a known illness since Feb 2010, when he had an ear infection. No runny nose, cough, fever, sore throat, vomiting, etc..... His PANDAS, if you want to call it that, started up after the Flu Mist in fall 09. I just got his Cunningham results back today. His Cam Kinase II is 144, that's in the low PANDAS range. His anti-tubulin is high. Sixty days of biaxin has brought him back to about 95%. He's been on prophylactic zithro 2x week for a month now and holding his own. It would seem that a child w/ normal strep titers and normal myco titers and a viral trigger would not improve w/ antibiotics, but he has. I have no explanation. Cindy

Oh, yes. I would not take him to Target or the grocery store because he would have a meltdown when he couldn't buy a toy. He was so obsessed w/ buying certain toys. I limited noisy places and highly stimulating environments. He was diagnosed w/ sensory processing disorder- sensory seeking before we had a clue about PANDAS. He wanted to look at and touch certain things in the stores. It took us forever to get the shopping done. My nerves just couldn't take it w/ him at Target, grocery store, etc..... and I was on eggshells the entire time wondering if he was going to have a meltdown. Cindy

I can totally understand your hesitancy to jump in to IVIG. The decision is not made lightly. To complicate matters, the response to various treatments, well.......varies. You'll find children who could not stay stable on antibiotics or just could not make enough improvement and went on to IVIG, plasmapheresis, or exchange. Others seem to be able to maintain on various doses of antibiotics. My DS7 had PANDAS for at least a year before diagnosis and treatment. His primary symptoms were severe separation anxiety and irritibility, anger, rage. He also had ocd's. They were many and varied but did not interfere too much w/ daily living, although I think they contributed to his anger/rage, especially when we unknowingly interrupted them. He lost his social skills. Became w/drawn, wouldn't play w/ friends. Had lots of fears. He developed tics a few weeks before diagnosis and treatment. He was placed on an antibiotic, biaxin, for 60 days. We have seen nearly complete remission of symptoms. He is a little ocd'ish but its pretty mild and still has some separation anxiety. Everything else has disappeared. He is currently on a prophylactic dose of azithromycin 2x a week. He's been on it for about a month and seems to be holding his own. For every child here who might have a similar response to antibiotics, you'll find many more parents here who'll say no way that would have done anything for my child. My advice is to go w/ your gut and see how it goes. If the abx wasn't working, you can believe we'd have already jumped on the IVIG boat and paid for it somehow. My son and our family couldn't go on living like that. Cindy

She sounds similar to my DS7, who was 5.5 at first episode. Diagnosed a year later, in Oct 10. His titers are normal. I am very familiar w/ the hitting, spitting, name calling. It was his worst symptom, along w/ separation anxiety. I could take the ocd's, weird talk, sensory issues (diagnosed spd in June 10), inability to make a decision, age regression. When the tics started, we really got ourselves in gear and got him diagnosed, after going from dr to dr trying to figure out what was wrong w/ him. He started biaxin in mid Oct and took it for 60 days. At 20 days, he was about 50% better. At 60 days, he was nearly back to himself. Currently, he's holding his own on zithro 2x weekly.(knock on wood) I'd give abx more time than 20 days, but that's just my experience. There are others around here who have tons more experience than me.

Of course, we don't know for certain and never will, but I believe the FluMist was the causative factor. My DS7 has never had a diagnosed case of strep. I never even suspected him of having strep. He has normal ASO and DNase titers.

The FluMist set my DS's PANDAS in motion last Oct 09. He was sick and starting up the PANDAS symptoms two days after the flu mist. NEVER again. Cindy

Wonderful!!!!!

This is so sad and hard on the small kids. My son said on Christmas Eve he was worried Santa wasn't coming because he's been bad this year, hitting and kicking us. We reminded him he couldn't help it, it was his PANDAS and now he's getting medicine for it to help him.

Interesting. Maybe it is the zith. My DS was on biaxin for 60 days and he is about 90% back to his former self. We started prophylactic zith 250mg, 2x weekly, a week and a half ago and while he has always been very affectionate and loving, he is incredibly loving since zith. I thought he was just feeling better and trying to make up for some pretty awful things he said and did during the worst of his PANDAS.

Hang in there. It must be very difficult. There were a few times I thought we might have to take our DS to the ER. Not a fun thing to have to do.

Rachel- I have the name of an LLMD in MI who treats children w/ Lyme. He's the only one anywhere near me (and he's not close) who treats children. In fact, I think he may be the only one in MI who treats children. I got his name from the Michigan Lyme Assoc. Cindy

The American Academy of Pediatrics is taking a very conservative stance on antibiotics. This spells disaster for PANDAS or potential PANDAS kids. They don't even recommend antibiotics for ear infections anymore. The eardrum has to be ready to burst before they will prescribe. I took DS to see his ped on Thurs. This was a follow up after I had him there two months ago when he was at his worst and had just started biaxin, as recommended by Dr T. Now, two months on biaxin later, he's about 90%. She was amazed. Wrote furiously while I was telling her of all the changes. At the end of the appt, I told her I really needed a written script to keep in my purse for an emergency if DS gets sick while we are traveling (and we are going out of state for Christmas). To my amazement, she whipped out her pad. She said "You won't find anyone who will treat him if he gets sick on vacation. I'm giving you 3 refills too." I wasn't even sure she was going to get on board for us. Kbossman- I can hardly respond to this. It just makes you want to bash your head against the wall. It just goes to show intelligence is not correlated to common sense. In fact, I think it might be inversely related. UGH!

Momcap- Thought I'd let you know our pediatrician took the links and told me she was going to listen to them!!!!! Thank you so much. Cindy

I went to add it and its says PicBadge can access your uploaded pics, send you email, etc.... I really don't want them to do more than just put the badge on my profile. Cindy

Thank you, thank you, thank you. Cindy

I am looking for the link to the radio program that had one hr programs where Dr T and Dr L talked plus one other doc, can't remember who. I am taking DS to ped in one hour and wanted to give her the links on the outside chance she's going to want to. Cindy

Here's the address I have Dr Madeleine Cunningham Dept of Microbiology and Immunology Biomedical Research Center Room 217 975 NE 10th Street OKC, OK 73104