colleendonny

Ok, I feel as if I may drive myself dissecting every one of my child's behaviors. But, lately I have been noticing my 7 month old DD tiliting, somewhat jerking, her head to the left. What are the chnaces of noticing symptoms of PANS in a child so young? If it even is...

My DD 5 used to have a little stutter when she was small, about 2 or 3. It has since seemed to go away. But the past few days I have noticed more of it. Could it be from her antibiotics? She is currently on Augmentin and Zithromax...

My daughter is currently on both right now. We started off in December with a 15 day burst of prednisone along with a 30 dats rx or Augmentin. Our rx for Augmentin ended lat Saturday but when we saw Dr. B with our lab work for our 2nd visit, we went back on Augnmentin and he added Zithromax. She has PANS, no positive ASO or DnaseB, and also has erlichiosis. So we just started with the combo of these two meds on Wednesday.

Hi tpotter. Thanks for your response. I tried to send you a pm. It wouldn't work...

My daughter had her 1st blood tests with Dr. B in December. We got the results back earlier in the week at our 2nd visit. I get so flustered when I see him that I have a hard time comprehending everything. Anyway, out of the visit, I got that her immune system is actively fighting infection. He is calling this PANDAS, her ASO and DnaseB were negative. She was posistive for erlichiosis and her vitMin B12 was high..anyone know what a high b12 could be? I googled.but didn't see things that could relate to her.

Thanks everyone. Dr. B did find out about the erlichiosis. He didn't reccommmend a LLMD yet. He did add azithromycin though... Wonder if that was for the erlichiosis. He said it was IgG. I think. I always get them confused, it was not an active infection. I am sending out an Igenex kit on Tuesday. I figure if she was exposed to erchiliosis, then there is a great chance that she was exposes to something else as well. Question, does Lyme and coinfections cause PANS like symptoms, or does the infections cause PANS. If the Lyme or Lyme coinfections do get cleared will the PANS symptoms come back? Kara, I will email you tonight.

My DD5 sometimes has the desire to scratch objects... Is this some type of OCD? I haven't found anything like this while looking at PANS related symptoms. Wondering if this is going on with anyone else?

We see Dr. Bouboulis in CT. He is great! But there is a website www.PANDASresources.com, I believe is the site, there should be a list of providers.. hope this helps. I know many doctors that treat PANDAS, have a long waiting list, so get right on it and call a few. If I am correct, many don't take insurance either... But Dr. B does take some.

Hi all, My daughter saw Dr.b for the 1st time in December for PANDAS like symptoms that started overnight in October. She mostly has intrusive thoughts, she repeats curse words in her head. She had mouth tics like lip smacking, and rapid side to side jaw movements. Also had a few days of days of germs/hand washing, few days where she had a strong desire to scratch objects, few days of throat clearing, ODD, few nights of separation anxiety, babytalk. Anyway, we saw Dr. B for the 2nd time to review bloodwork. She had a positive IgG for erlichiosis. She is now on augmentin and zithromax. Has anyone ever had any neuropsych symptoms with erlichiosis? I think we will.test through IgeneX for other tick borne illnesses. Thanks.

Dcmom, it makes me very happy to hear you say that when you see a flare up and treat it.immediately, things are better. I'm still relatively new to PANDAS, but we caught it early so I am hoping abx treatment will clear things up each time. Do you see Dr. B?

I'm curious as to how you test for these? Anyone experienced in this area that could fill me in? Also, my dauhter went off her 15 day steriod burst and 30 day Augmentin on Saturday pm. This morning, before starting more Augmentin and now Zithromax, she complained of being itchy in her vaginal area. I used Aquaphor and she was fine after. Related?

Thanks Bill, I hope it is nothing. This whole PANDAS diagnosis, has me dissecting everything. He is sensitive to loud noises and will cover his ears. It is not often, but I do recall a few instances. Anyways, I am bringing him to the eye doctor tomorrow to se if they find anything. He has been complaining of bellyaches lately too. Wonder if maybe he is allergic to something? We see Dr.B again in Feb. and we are bringing along my son as a "new patient", to get some bllod work on him as well.

My son was 7 when we first noticed dilated pupils. With time, his pupils were pretty much dilated all of the time. As I remember reading, many PANDAS kids are sensitive to light - I presume because of the pupil dilation. Not only were my son's pupils not reactive to light, he had zero light sensitivity. None of the doctors knew what to make of that. His pupils are pretty normal now. He's the only one in the family who does not need glasses or have any vision issues. He's close to 14. (Many PANDAS kids are also sensitive to sound. In comparison, the louder the TV, the more my son liked/likes it. His hearing tested fine.) My only thoughts are that it does not sound alarming. Perhaps he/she has some allergies causing light sensitivity? Worth keeping an eye on (no pun intended) though.

I'm fairly new to this as well, but it definitely seemd like it could be PANDAS. Where do you live?

My non PANDAS, I hope, has had light sensitivity issues for a while now. And since I have been "looking" for it, I have noticed dilated pupils here and there... They will always get smaller when I ask him to look at the light. They are mainly sensitive when I change his diaper and he is laying flat, or when we are in the car and it is sunny. Any thoughts for me?

Is anyone allowed to go to this meeting? I live in the area and would love to attend.

Thanks for all the info LLM. It's going to take a lot of studying for me to "get it". And thanks ladies.for your thoughts on the vaccinations. I will be very careful in what I choose to do from now on.... How do you get your children in school with skipping some of their vaccinations, or delaying?

Hello everyone. My DD5 saw Dr.B for the 1st time in December. She did a 15 day prednisone burst along with a 30 rx of Augmentin. Her Augmentin ended yesterday pm. Tonight for the 1st time in a while she asked me to sleep with her... But she also complained of a headache... Is this common after stopping antibiotics? I didn't give her anything but wonder if I should give her some ibprofun if she wakes up.

I'm sorry for what your son is going through. I do not have an answer to your question, but am wondering an answer as well. We see Dr. B. We actually have our 2nd appointment with him on Tuesday. Do you see him as well, or did you say you are going in July? P.S. We are in the Boston area too and find it frusterating that our CHB wanted to prescribe SSRI's. We haven't done so, we tried the abx route, which hasn't quite worked for us yet either... I'd like to find a pedi here in the area that will treat or acknowledge PANDAS. Where abouts are you guys? You can PM me if you like.

OK, so I have been reading many posts on here and I am still confused on a few things. I try to research but there is so much information that I feel overwhelmed. So, I'm wondering if people can help explain a few things in laymen's terms I'm having trouble understanding these things: Methylation? MTHFR? And I do notice dilated pupils every so often in my questionable PITAND daughter. But now I also notice them in my 2 1/ year old son. Do dilated pupils only show during symptoms? Is there any other causes for dilated pupils? PS, my son is a "typical" 2 year old, from what I thought, but after researching PANDAS and such, I'm finding things to worry about. He is also sensitive to light. Could it be early stages? Can a PANDAS kid have dilated pupils not during a flare up? And as far as vaccinating. I plan on not doing so for a while with my DD. Should I plan on not doing so for my other children, age 2 and 6 months, in terms of my DD having a reaction from them. Because i read up of a lot of PANDAS kids who have a sibling with it, it makes me scared that one of them could have a reaction.... And if you don't vaccinate, how do you get them into school if they are able to do so? Thanks for the help We go back to see Dr. B next week so I want to make sure I go there knowing what I'm talking about.

When I click this, it closes down my browser. Is there another link?

Thanks LLM. You always have great advice Interesting, I didn't know about the tick born illnesses having cycles of a few days each. Sounds like it could fit my DD. And she did have a rash in May that looked a little like a bullseye rash. But when I explained the rash the the pedi's nurse, she said it wasn't. And now I know I definitely should have investigated a bit further.

Hi everyone, My DD started with some PANDAS like symptoms in Ocetober when she was 4. She turned 5 2 weeks ago. We saw Dr. B for the 1st time in December.Her primary symptoms were OCD words and Intrusive thoughts,mouth tics, scratching objects, few days of hair pulling, few days of fear of germs, few days of urinary frequency, separation anxiety at bedtime, hyperactivity and baby talk. It seemd like she was getting better before we saw Dr. B. The only things I noticed before seeing him were still the OCD thoughts and words. So we still started her on Prednisone 15 day burst and 30 days of Augmentin. She still says the "bad words" in her head and still says she has the intrusive thoughts. I'm not even sure the medicine is helping. We go back to see Dr. B on the 10th, so I will bring these things up. I'm starting to wonder if it could be Lyme or a co-infection... At our 1st appointment, I came down with a sore throat the night before. I don't know my excat numbers, but the office called back to say my strep test was positive. So I need to get retested after 90 days, probably to see if I am a carrier. So I guess my questions are, have you ever noticed improvement in your PANDAS kids without treatment, like my DD? I mean, she was already getting better before treatment. I know her case may be mild and could get worse, but I wold think the OCD thoughts and words would have gone away after some abx? Also, I have a son who is 2 1/2. The past few weeks, I have noticed dilated pupils on him. Not all the time, and not always during tempertantrums. He also has sensitivity to light. But he is very smart and a typical 2 year old boy. Loves to play, is polite and loves to have fum. He has been giving us a tough time at bedtime. He never used to. Now he keeps calling us back into his room. And he'll cry in the middle of the night for us. I'm wondering if something is up with him. But I also feel like if I never had any problems with my 5 year old, I would just think it is typical 2 year old behavior. I may have Dr. B Just send orders for some lab work on him.

Great, thanks. We will be doing that.