colleendonny

DD5 has been doing really well lately. I'd say just about 95%. We saw our LLMD on Wednesday, and she even told him that all her bad thoughts and bad words were gone. Then Thursday night, she said it felt like she had to vomit. She never did. Friday morning, she was a bit moody. She said she didn't feel well and had a temp of 101.5. It went up as high as 104.2 late Friday night, along with nausea and vomit one occasion. Saturday day, she had a low temp, but felt well after a nap. Then her brother vomited on Saturday night. Then felt OK. DD5 PANDAS, played soccer on Sunday because she was feeling better. My almost 1 year old was having those weird seizure like episodes on Sunday. And she woke up with a fever and ear tugging on Monday. Brought her to the pedi and she has an ear infection.Then my son threw up on the ride home. So, Monday and today, DD5 has just been moody, irritable, emotional and defiant. Then tonight at dinner she was crying and told me her bad thoughts and words have come back. Also, another form of OCD has come back, which I haven't seen in quite a while. She is currently on Augmentin 600mg 2X per day, and 1 drop A-bart 1X per day. I'm wondering if I should reintroduce Azithromycin too see if it helps? Try to ride it out? I was hoping to try and wean her off abx soon... I notice her teeth are looking a little yellowish, and I think it's from the Augmentin. So, what do you all do on your path to baseline from an exacerbation? Thank

We got herbal A- bart from our LLMD, for suspected bartonella. It has many natural ingredients in it that serve as antibiotics and antivirals. It actually stopped my DD's intrusive thoughts and her "bad words". This was pretty much her only remaining symptom even after being on Augmentin and azithromycin.

Lisa, we are going to the OCD rally in Boston on Thursday at 11:30 if you want to join. So far there are 4 of us.

Hi Kara, I will not be able to come. But, I will see you Thursday

Ok, so its probably not pancreatitis..Her fever went up to 104 tonight. She is a little pale and she is just saying that she feels like she has to vomit. But she had oatmeal for dinner and a popsicle, and never threw up. So we are doing Advil and tylenol for the inbetween when it gets high. I guess we will ride it out tonight and see if we need to head to the pediatrician tomorrow. She is sad she is missing her last day of gymnastics tomorrow

I'll check for that, thanks. It is going on here too. We actually saw a little girl today at the park with it today. Kayleigh was 2 feet from her.

DD5 has had nausea since last night. And she developed a fever of 101.2 today which was brought down with Advil. She has little energy and looks a bit pale. She is on Augmentin 600mg and A-bart, which I didn't give her today. Maybe its just a virus passing. There are no PANDAS symptoms right now. If it were something serious like pancreatitis, she would be in lots of pain, right?

Hi, I am also in your area. We live in South Shore MA, but we travel to CT to see our specialist and we also see an integrative doc in CT as well. There may be someone in the area who can start you off. Pm me and I can give you a contact if you are interested.

Thanks, I will give it a try!

Was wondering if it is a good brand? It is so much less expensive than Florastor.. Does anyone here use it?

Tiffani, sounds good. I will PM you my number.

Happy things seem to be going well for you!!

I think I will have my mother watch my older 2 and bring the baby. And DD has school that day as well. Would you ladies want to meet at the podium right before 11:30? I will PM you ladies to get your numbers.

She did have a shot of rocephin a few weeks back when the NP thought she had a resistant ear infection. I felt awful for her Her rapid was negative, still waiting on the culture. Her separation anxiety has improved a bit today. Just not sure what, if anything PANDAS related, is going on. I just took her temp amd it was 100.0, so I just gave her some Advil.

Great! I feel like a tourist in Boston, so I am not.sure of a meeting place. Laura, will you have your kids?

I brought her in today. Her ears looked perfect. Rapid strep test was negative. We are waiting on a culture. Her separation anxiety is through the roof!! It could be her age, but I'm not sure. She hasn't been doing the head shaking. Or if she does, it's rare, not like when the infection is present. But she is still tugging, and poking.

Her rapid was negative. Ears were clear. We are waiting on a culture.

So, the other day I got a phone call from the school nurse. She was looking at my DD's emergency card from kindergarten registration. She knew what ehrlichiosis was but had never heard of PANDAS. So, I had about a 10 minute conversatoin with her about PANDAS and what the symptoms are and what Kayleigh's symptoms were. She had never heard of it and said that she would love more information about it. I sent her an e-mail of me explaining it and a link to a bunch or sites and articles and asked her to pass it on to anyone and everyone! This was on Thursday or Friday. Today, I get an e-mail from a woman I have never received an e-mail from with the subject as PANDAS. She goes on to tell me that she talked to the school nurse about her son, who has mild autism, about PANDAS because he had a sudden onset a few days ago! They live in the same town as us. And MASS moms, you'll love this: She went to Children's hospital and was there Thursday night until Friday. They thought he was reacting to a new medicine that he was on. But he had a bad belly ache in the middle of the night and had vomited the previous night. The nurse in the middle of the night decided to give him a strep test and it was positive. The team there said they may be dealing with PANDAS. I about lost it when I read that! But they wrote on her discharge papers that it was Acute toxicity. I couldn't believe Children's even spoke of PANDAS. Just thought I would share how ironic it was that I just informed the nurse of this last week, and it's already helping! I hope word gets out even more on PANDAS and helps all of our children.

I was wondering if you could all share lists of tests that you have gotten for your kids. My kids have had the labs from Dr. B, which include Lyme and Co and their immune panels and mycoplasma. We haven't yet received the results of the MTHFR. We see our LLMD next week and I am going to ask of he can draw blood on DS2 and send to igenex. He came back positive on band 41, so I think it would be a good idea to test through them. My kids are currently doing well, and which is the reason why I want lots of testing. I want to keep them that way and want to make sure I am missing nothing. Thanks.

I tried explaining PANDAS to the anesthesiologist. I told her we had the results but haven't spoke to the doc, but they resembled DD5 who has PANDAS. She says, " So you self diagnosed?" I brushed he off and said, " Well, yes." Wishing your DD luck tomorrow! Is the work at the dentist or hospital?

Oh, no. Sounds related. I would definitely ask your vet. If they say no, I would have to get rid of the dog. Easier for me to say, as we don't own any pets. I know it would be hard, but what else could you do?? Hope this is just a mild flare up for DS.

Updating. DS had his dental work done a few hours ago. He is doing great and back to his wild self trying to climb up the wrong side of our banister Thanks everyone for your help amd tips.

I'm so sorry to hear of your sons friend. What a tragedy. This is something I needed to read. I was having a really bad day yesterday. I just kept thinking why us? Why my kids? I think about how I will make it through tomorrow, then I think of what may happen in 5/ 10 years, and it scares me. But reading what you posted is such an eye opener.

Thanks Hope. I do notice the head shaking mostly with ear infections and teething. It just worries me most that she has had episodes that look seizure like, but had a normal EEG. And now the crazy separation anxiety!! But that could also he normal in a child her age. And of course with PANDAS on my radar, I suspect it. Thanks for sharing your story

I am thinking of bringing my 11 month old in for a sick visit tomorrow. She has been super clingy, refuses to nap, unless we are in the car, and my gut is just saying PANDAS, because of this and other behaviors. And well, as we all know, it just runs in families. My older two are more like PANS, no documented strep, so I am not even even sure if her culture will come back positive. And I just read that sometimes kids with stretch can pull and tug their ears. She has been doing that and I have brought her in twice since her last infection, but no ear infection. So, if it does come back positive, should I request Augmentin, or azithromycin? Is she too young for such strong antibiotics?