matis_mom

Yes, PANDAS and RF go hand in hand for some of us. Good news is no one seems to have reported any permanent heart damage. My son had tics, swollen joints, and developed a heart murmur about four years ago. We did not realize all this were strep related. Fast foward to 2009, he developed OCD, and the joint swelling came back. So yes, they are very much part of the same autoimmune problem. FYI, psoriasis is also an autoimmune response to strep. I had no idea until I saw a post in this forum... you might want to look it up.

You were so lucky the ER doctor thought of PANDAS! I think you probably need to find a neurologist that "believes" in PANDAS. Not all PANDAS kids present the sudden onset. My son had an eye-blinking tic off and on, and now I realize it was probably brought on by exposure/infection with strep. So I don't understand how the neurologist could dismiss it because of that. About checking for Rheumatic Fever, you could do that, but it is hard to get a diagnosis. My son presented swollen joints and tics, plus a newly developed heart murmur, and no one caught it. But if you could get an appointment with a rheumatologist, it may help. Just to put your mind at ease, I have yet to hear of a PANDAS child with heart complications. We did do a full cardio evaluation on my son and he is perfectly fine in that sense. So, if I were you I would try to get him back on the strongest antibiotics you can get, and then get an appointment with a PANDAS specialist. It is very important to document everything as much as you can, so try to keep a journal of what is happening and how your son is reacting. Next thing to do would be to check all family members for strep. Hope this helps! Isabel

Oh yes, we must be very careful with dogs... Did you know they give dogs only one shot at a time, so if there is an adverse reaction they can tell what the dog reacted to? Very smart, these vets are... I wonder why pediatricians haven't thought of this... I guess children are not as precious??? MAKES ME SO MAD!!!

Well, I googled it and guess what the treatment is? Plasmapheresis or IVIG!!! Ring a bell?

Well, your friends are going to great lenghts to make this visit a go. I think you are right to go. Everyone is doing their best, you are all aware. So, I would just add to all the cleaning and treating people, etc, just bring along something to gargle with (either colloidal silver or chlorexidine or even just salt water), and gargle a couple of times a day just to be extra safe. And of course... PRAY, PRAY, PRAY! Have a great weekend!

Oh, that's always such a tough decision! We have two families that we've been meaning to get together with and we've had to postpone over and over because of strep. I'm starting to feel like we'll loose all our friends over this! But, then I think, it's not going to be forever. One day will look back at this and see it's only just a brief period of our lives. And, if your friends are kind enough to let you know, then they will totally understand. I think going and staying outside is probably a good alternative. But the problem is that there may be other family members carrying it/incubating it. If your friends have only the one child, I would not be too worried. If they have a whole bunch, I would probably not go, since it's hard to keep kids from close contact with each other.

I was looking it up and besides some pretty serious potential side effects, I found this warning... WARNING Metronidazole has been shown to be carcinogenic in mice and rats So please talk to your doctors! I will definitely bring this up to see if something worth trying.

Here is to turning this thing around, one physician at a time! Cheers!

I've been homeschooling my kids from the beginning, and I think it was a good thing for my PANDAS ds, since at times his brain was simply not responding and I was able to allow for that, and then catch up later. So it has worked very well for us. Not so much in avoiding catching strep, because my kids do a lot of activities with other kids, so we have caught strep 4 different times, but at least when my son goes into exacerbation, I can take it easy on him, I can understand what he is going through. I don't know what it would have been like if he had been at school, he probably would not have been able to keep a steady pace. At home, we can slow down during exacerbation and accelarate when he is well to catch up. He has finished 6th grade without trouble! Another good thing is that we did not have to worry about missing school because of drs. appointments, bad days, etc. But I would also suggest that you wait a bit to make your decision. Your daughter might do great once you start treating her for PANDAS, and then you can re-evaluate. My son got to a point where he would not do a lot of stuff (pet the dog, go outside, etc) for fear of contamination. Now (after nearly a year on antibiotics!) he still has a bit of OCD left, but he is able to lead a normal life for the most part. Every child is different and not knowing your daugther it's hard to tell, but a lot of the special services she needs right now, even whatever the psychiatrist saw that lead him to believe she might be autistic, all of that could be PANDAS related. So it's a hard decision that you'll have to make, but I would encourage you to see how she reacts to treatment and then take it from there. It seems at least for now, since she is happiest staying at home, it might be best to keep her at home, especially since she is so young. But is also a fine line to walk between helping helping them out and making them feel secure, and giving in or even feeding the OCD. I don't know how far you are in your journey, but many on this forum have found it extremely useful to learn more about OCD and how to cope with it. I recommend a book "What to do when your child has OCD" It really helps you understand what the child is going through and what you can do to make it better. Even with treatment, most of our kids still have some OCD left and it's best to give them the skills to manage it so it doesn't take over their life. If you have any more specific questions about homeschooling, I'd be happy to help out. There are a lot of resouces out there, even ones that are geared to special needs kids. Isabel

Always worth charting to see if there is any relation... I have to get back to charting symptoms, and I'll add a "moon" column!

Oh Stephanie! I know, it's hard. But take consolation in the fact that you can hang out with your SIL! So many here struggle with relatives who don't understand. It seems like she is listening to you, and trying to keep a good relationship between the cousins, in spite of this PANDAS nightmare. Let your brother's children be an inspiration to keep fighting, a reminder of what is inside your kids too, just waiting for this PANDAS thing to go away.

Yes, absolutely! At our house, full-moon is definitely "lunatic" time I am glad you posted this becuase PANDAS ds seems a little "flary" after having just settled down from the last exposure... so now seeing your post I'm more at ease blaming it on the darn moon I'm sorry, all part of God's beautiful creation, I'm sure there is a good reason for it affecting us so.

Thank you so much for sending that link! Awesome website. It makes the GF thing seem a lot less intimidating

I guess we could have a new version of "don't judge a book by its cover" In our PANDAS world, "don't judge tonsils by their size" My son's too were removed and the biopsy report said they had deep crypts "consistent with recurrent acute tonsillitys" He only had 1 strep throat that I know of!

How awesome! Enjoy every minute of having your baby back! Isabel

Dr. L recommended to just do it all in the morning. I guess people space them out so it's not so hard on your stomach? Ds has taken up to four at breakfast without any problems.

I would be a little worried to give her so much at night, as it may make her hyper, but if the doctor said today, I would just do it all. What's up with her hearing? My son is 80lbs and the first week of the taper we do all 40mg in the am, just in case it alters his moods, but luckily it never does. Isabel

I agree the progress is not always a straight line... But if you saw some improvement and suddenly see him regressing, I would highly suspect he has been exposed to strep. For our family, the biggest battle has been keeping everyone else strep-free, and we are still fighting that one! So if I were you I would test the whole family (rapid and culture), and if you can, run titers too. Isabel

Awesome! It's amazing how much those little triumphs mean to a PANDAS mom! Best wishes for continued progress!

You can ask the records person to fax you a copy. They are your son's results and you have every right to see them right away, even if the doc is not available to discuss.

I don't know what to say, other than sending you a ciber hug! Here are some awesome thoughts for you to dwell on tonight... 1) You know it's PANDAS! Score! You know it's not you, it's not your fault, and it's something that can be treated. 2) It looks like you are getting good treatment, and are working on diet, supplements and everything that helps 3) Your mom has been with you on this long road... and she'll be there for you still (maybe she was just having a bad day today!) As a PANDAS mom I can tell you some days I just want it all to go away, I sometimes feel like I don't want to do this anymore, but here I am You sound like a someone with great inner strenght and that will see you through this. Have faith and be patient, things will get better. Isabel

So what do I do when my brother-in-law comes to visit? He is a psychiatrist AND a neurologist! He currently works at Harvard... Supposedly he talked to a PANDAS expert (I'd like to know who) that told him that psych meds are the way to go! It kills me, because I know he is treating the son of some friend of theirs who has PANDAS with meds and not abxs, not even trying to work on the root cause! They are coming to visit us for a couple of weeks, it's going to be a very interesting couple of weeks! Any time I talk to my sis she says her husband says we should have put him on meds a long time ago, and I say if I have to choose between psychotropic drugs and antibiotics, I choose antibiotics! Last time she went on about abxs resistance, etc, etc. I said we are trying to get at the root cause, and doing psych drugs is not going to do anything to solve the root problem here, to which she replies, "maybe it'll just go away" Well, it's been a year since diagnosis, and in aint' going away, so we are headed for plasmapheresis (hopefully?). I do hope one day my brother-in-law gets to talk with a REAL PANDAS EXPERT and "sees the light"

Lynn, I would say you may need to give it more time... It took a few months of antibiotics, tonsillectomy, and a 4-week steroid burst for our ds to see results. I am sorry I don't remember your particulars, but has your child had a tonsillectomy yet? I think consulting an ENT and doing the stool test are good ideas, and you probably want find the source of the strep before you proceed with IVIG anyway. Also, have you tested all family members? It could be that there is someone in the house who keeps messing with your son's immune system! Anyway, how long is your steroid prescription? We did not see full results until the end of the fourth week, so hang in there, and while you wait, go makes those appointments! Isabel

I'm no doctor but Clindamycin is what they prescribed for my 14yo who cultured positive without symptoms, I do hope it works! How did it work for your wife? Isabel

Oh Brandy! I know what he's talking about... My ds also has the "fears" and intrusive thoughts. It is great that your son is talking to you about it. So much goes on in their little heads, and you feel like there is no way to help them. Hopefully he will be able to talk about it and release some of the anxiety. My son could not actually "talk" about it, though he wanted to, but was able to write it down for me and that gave him great relief. So hang in there, I know it's hard, and whenever I see things coming back up I try to go into denial, but there is no point. We just have to open our eyes and see what is going on and do whatever we can to help.