sdrew99

This is timely...my daughter (8) has been on zithromax for the past month or so and has been having lots of dizziness and just today fainted while in summer school - she had a full belly and I don't think she was dehydrated. She's already anxious like crazy and now this has just pushed it further over the edge. She was in drama class and standing up practicing her lines...so it could be anxiousness from that, but I'm not sure.

Has anyone's child had a reaction to antibiotics? Before the PANDAS dx, Sydney had strep (no symptoms) and was given Omnicef for 10 days. It took a few days, but we saw a DEFINITE improvement in her behavior (rages went away, etc.) She was good...meaning no rages, no noticeable change in behavior for about a month. The only things that were happening were that she had (what I assumed was Fifth's disease) a rash, achy joints and sore throat during this time that created a "mini" flare. The rash has come and gone over the past month. It honestly looks like strep rash, but she is negative for strep right now (despite high titers) We saw the neuro last Monday (the 30th) and based on her bloodwork, confirmed PITAND or PANDAS. She was given Omnicef 250/5mL - she was to take it once a day for the next 3 months. We gave her her first dose last Monday, and since then, her behavior has completely gone back to what it was before her FIRST round of Omnicef. She's been on it for 10 days now, and she's been having rages, etc. I called the neuro today after I locked myself in my room and she pounded on my door for 20 minutes. I reported that her behavior has gone haywire since starting Omnicef, and also that her rash has come back (not right away after starting Omnicef, but a few days after - it comes and goes). Her blood work showed positive for Epstein-Barr virus, positive for strep titers and positive for Mycoplasma. But her chest x-ray was negative. So....neuro had us stop Omnicef and we are going to try Zithromax for 10 days. What do you all think? I'm confused because last time, the Omnicef totally cleared her up and her behavior change was for the better. This time... her behavior is WORSE (even she said to me 3 times - "mommy, the medicine is making me worse!") she's also complaining of a sore throat the last 3 days and the rash is back. I just don't know what to think. I'm glad we are trying Zithromax, but I'm curious as to what y'all think.

We finally had our follow up with our neurologist today - my 8 year old daughter definitely does have PANDAS. (here's my original post from a month ago: http://www.latitudes.org/forums/index.php?showtopic=16680&st=0&p=133831entry133831) Some notes - tonsils are definitely very enlarged from MRI view. Will be seeing an ENT to discuss removal. - Neurologist put her on 90 days of Omnicef to see what happens. Her M.Pneumoniae IgG Ab was 1:64, which suggests walking pneumonia or mycoplasma infection. Had a chest x-ray done on her today, if that is positive, will add a Z-pack. - She was also positive for Epstein Barr Virus (mono) - normal index is less than 0.9, Sydney's was 2.6. Has anyone's kiddos had mono? How do you deal with PANDAS symptoms when it is a virus? She still has a rash that I thought was Fifth's disease (started 4/1) and the rash has recently come back...I didn't realize that mono had a rash that went with it, so this would make sense. - Strep titers were 517 and the Streptozyme titer was 400, so both positive - IgA level extremely low - we are going to see an immunologist, although my son (the one who has Type 1 diabetes) also has an extremely low IgA level. Do any of your kids have this? I'm not thinking much can be done to help that. Anyway, I am so glad to have all of this quantitative information finally - proof that there is *something* not right that can (hopefully) be fixed. Is there anything else I should be doing or looking at?

My 8 year old daughter was just recently diagnosed with PANDAS, and 2 weeks ago, both of my kids got Fifths disease. And there was DEFINITELY a flare in her behaviors - I actually thought it was strep rash again, despite just having been on abx. Once the virus went away, her behaviors calmed down.

Ok, so she has been symptomatic of strep in the past, but this most recent episode, she has little brother to thank for pointing you in the right direction. I have two girls, one 12 and one 8, both pandas/pans reacting behaviorally to strep and myco-p. When you have a child who doesn't get "regular sick" it can be so tricky to know what is going on. You state your dd is never sick to which I say ditto, but it's really not true. It's just that you will have to train yourself to look for behavioral changes rather than coughs and fevers. Now everybody can have a bad day, but after a couple, you will need to be suspicious and play detective. You are in the wonderful position to know what is going on early and gratefully she is responding to abx in a perfect way. I hope it stays that way! Kudos to you for being so on the ball. It took me YEARS to figure this out with asymptomatic girls. Thanks. It's funny...her brother has always been the "sick" one with all of his issues. And we would always talk about how HEALTHY Sydney was, because she never missed a day of school, never "caught" what the rest of us had and thought she had an iron-clad immune system. LOL! Crazy to me know that I think back on all of it. I am so relieved that we are on the right track with this thing.

Sorry! Should have linked to my original post a few weeks ago: http://www.latitudes.org/forums/index.php?showtopic=16680&st=0&p=133831entry133831 After reading about PANDAS, her little brother was dx'd with strep that Friday. On Monday (on the suggestion of some members here) I had my daughter swabbed (ZERO symptoms, except for the rage, anxiety, etc.) and she was positive for strep. She started Omnicef for 10 days and she's been doing great for the last week or so.

Just wanted to update - especially since it is good news (so far...crossing fingers!) My daughter was on Omnicef for 10 days, and by the time she was done with the course of abx...SHE WAS HER OLD SELF! We are amazed. AMAZED. When Sydney was diagnosed with strep 3 weeks ago, and I brought up PANDAS to her ped, she thought it was definitely possible and had us make an appt. with a pediatric neurologist. Our appt. was for May 9th, BUT we got in this past Monday on the cancellation list! The neuro is a PANDAS believer, and definitely thinks this is what we could be dealing with. She ordered all the blood work - titers, thyroid, vitamins, iron, etc. and we will be doing an MRI on her brain next Saturday. We'll get the blood work back hopefully sometime next week. But it is truly amazing how much of a change has been made since the abx. I am floored. She's happy, playing outside again, does things when asked, is nice to her brother. Sure, she gets frustrated sometimes, but she handles it like a normal kid - not with rage, throwing, hitting, screaming. I'm actually kind of scared to type this out, because I'm afraid this will all go away. A special thanks to all of you who helped me figure this out and helped me find a great doctor!

Dcmom - thank you for the further explanation! That helps me a TON. We are seeing a child/family therapist on Saturday hoping for some help along these lines, so this great to read. We definitely need a "script" for these issues. Thanks! Stephanie

Thanks for that info! So we are having a similar thing - her anxiety builds and builds and leads to the rage. When you do a "time out" with the 8 year old, do you do it in a specific place, or is it always their room? I am thinking I may need to do this because she can read my face like a book, even when I am silent. In fact, me being calm just enrages her more (she actually told me this during a calm moment!)

I know nothing, since we are starting this journey. But I did want to offer support and hugs. So much of what you have said about your son is just like my daughter and in a way it helps to know we are not alone...even though we feel that way at times. Hugs, Stephanie 8 year old daughter, possible PANDAS

Yes!! This is exactly what she does. We've actually had the locks switched on her room for a few years. She is SO good at convincing me that she will calm down when I try to take her to her room, I think I am absolutely not being consistent. Thank you for that advice!

This may be slightly off-topic, but I thought I'd ask advice from you all. How do you get them to "let you" disengage from a rage? When my daughter starts an "episode" I try with all my might to remain calm, disengage, walk away, etc. The problem is she FOLLOWS me, pulls at me, pulls at my clothes and will NOT let me get away. My husband travels for work, so during the week, I am alone quite a bit. I also have a 5 year old son who is diabetic, so isolating myself in my room isn't really an option if he's off playing somewhere. She refuses to go to her room (separation anxiety) unless we get so desperate that we carry her in there and lock the door. I have read the Explosive Child, but I can't seem to find what to do when they just won't LET you disengage. I suppose I need to work on stopping the explosion before it starts, but I'm still working on that part. Thanks! Stephanie

THANK YOU! I haven't even read it, but I know it is something I need to read. Thank you so much for sharing. Stephanie

She will have been on antibiotics 10 days on Wednesday. I was planning on taking her Thursday for the re-check...should I wait a bit longer? We live in the Phoenix area.

I've posted a few times in the last week or so and want to thank you all for all of your information! I finally feel like I am NOT crazy (although at times I feel like I am losing it still) While she hasn't been officially dx'd with PANDAS yet (will see the ped neuro in May) we are on our first dose of Omnicef due to a strep infection (totally asymptomatic, aside from typical PANDAS behaviors (rage, OCD, sep anxiety). We have seen **some** improvement. On day 4 or 5, we noticed glimpses of our "old Sydney" back. We were on vacation this past week, and when she laughed, my husband and I couldn't remember the last time she'd actually LAUGHED as sad as that sounds. Still, there are issues that flare up, like this morning, I could tell she was going to blow, but she was the one that reminded me, "Mom, you didn't give me my antibiotics or ibuprofen yet." Her ped wants her throat swabbed again this Thursday - do you all think she will still be positive? I'm half-scared that she WON'T be positive, because while our ped thinks we are on the right track with the PANDAS, I'm not sure she will continue to prescribe abx if she's not positive. And frankly, I am living in fear of dealing with her for the next 2 months if she is not on them. Her backstory is that when she was 5 (almost 6) she was in the hospital for a strep/staph infection that had her in the ICU for 4 days, hospital for 7 days total. The staph caused a rare disorder called scaled skin syndrome and frankly - she's never been the same since. I feel like I am going to lose it dealing with her separation anxiety behaviors, rage issues, etc. My husband travels every week for his job, and I dread being alone with her because once she says, "I'm bored..." I know she's going to blow. Or if I even try to discipline her or say "NO" or she has something in her head and it doesn't go her way. On top of that, her 5 year old brother has type 1 diabetes, and that is a 24 hour a day job in itself, which also drains me. I'm just so unhappy and sad all the time and I'm praying that there is an answer for her behavior. Sorry for venting...but I feel like this is the only safe place I can do that.

I just cannot believe it (well, I can, but I felt like I was making things up in my mind) I took your advice, and took her to the ped this morning (the same one that diagnosed my 5 year old with strep on Friday) She tested positive! Zero symptoms, aside from dark circles under her eyes and, of course, the rages this weekend. Her throat wasn't even pink. I actually cried because I was so relieved that I might finally have an answer after 2 years. She put her on Omnicef for 10 days. She wants her to come back and get re-swabbed then. If she's still positive, we'll go from there. Thanks to the wonderful people on this forum, we have an appointment with a PANDAS-believing pediatric neuro on May 9th (and we are on the cancellation list). Thank you all so much. Stephanie

Hi, I posted earlier and have gotten some great advice regarding which direction to go to find out if my daughter has PANDAS/PITAND. I didn't quite believe it until this past week, when her rages, anxiety and OCD have been out of control. On Friday afternoon, I found out my son has strep...which after reading, makes total sense why she has been losing it this week. So - I will be calling to make an appt. with a pediatric neurologist on Monday that believes in PANDAS, but I believe there is a 2-3 month wait. What can I do to help her in the meantime? Advil? I read that sometimes ibuprofen helps, and this morning after I saw that she was going off into a potential rage, I managed to calm her down and gave her 200mg of ibuprofen - 1 hour later, she was fine, and has been well all day. Is there anything else that I can buy over the counter to help her while we wait for the doctor visit? Thanks so much! Stephanie 8 year old daughter with potential PANDAS

Hello. I just found this site last night, and after reading all night about PANDAS, I feel fairly convinced that this could be what my 8 year old daughter is dealing with. A bit of background: When she was 6, I took her to the doctor for strep, and a funny sore she had on her ear (impetigo). She was put on abx, sent home. Over the next day, she developed a red rash and fluid-filled blisters appeared all over her body. She was rushed to the hospital and put in ICU for 4 days, diagnosed with a Staph infection called Scalded Skin Syndrome http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002328/ . She was in the hospital for a week, received heavy-duty antibiotics and was fine after that. While in the hospital she had some sudden behavior changes (which I attributed to the situation) She was incredibly angry, said she hated us and that she "knew" we didn't love her. Over the next few months, she developed some serious fears involving bedtime, unable to sleep, major anxiety, etc. It got so bad that we brought her to a therapist, which wasn't much help. The next doctor was a nurse practitioner who put her on zoloft, and if that didn't work (didn't) she wanted to move to anti-psychotics. We quickly took her off everything and moved to a homeopathic doctor to try and treat the anxiety with homeopathy. We had some success with that, but the past few months, the anger and rage and separation anxiety has been unbearable. In researching bipolar, it lead me to PANDAS. Some things that make me think PANDAS: - we have a strong autoimmune link - her little brother has type 1 diabetes and has extremely low levels of IgA. - the staph infection from the hospital, and the symptoms appearing after that, she has has also had strep & scarlet fever - the fact that she never gets sick! But her symptoms are always worse when one of us is sick. - she has a huge, huge, huge fear of throwing up. it's like a tic almost, where she won't sit anywhere in the house where she has thrown up before, or someone else has. I guess my question is - what do I do from here? Do I call up her pediatrician and say, "I think she has this....can you do some tests?" Do you see an immunologist? An endocrinologist? We have access to an endo, because of my son - I wonder if he'd do the blood tests for me. Thank you in advance for any advice or direction. We are in Arizona, not sure if there are any doctors here that are familiar with PANDAS.