lmkmip67

Laura, I will be there at 11! We will very likely see you. It is also our third appointment. And yep, the wine comes out often after he goes to sleep. Only a glass, lol. But it helps to calm the nerves. And much coffee in the morning! Do you have a long drive? We are coming from MA, 2 1/2 hours.

I don't post alot, but read a couple of times a week. Ian was diagnosed in Sept when we went to see Dr. B. We are head to see him again tomorrow. He has had some improvement. But my basic question right now is how do you parent through the OCD requests? He is 7 1/2. Bed time is horrible. He has to have certain things said a certain way. And if they are not, he needs to start over until it is right. He has to be covered up a certain way. Again, if not done right, it has to be redone. We can only do it so much. We try to cut the number of times we say what he ask and all of that. But if we don't, the crying and tantrums set it. He freaks. He isn't violent. But he can not settle himself down. Before I knew what this was I would bargain, threaten, yell, etc. it is still hard to not lose my temper at times. It is almost 10 p.m. and he is still up there screaming because "daddy didn't cover him up right" for the 5th time. I don't know what to do. Do we give in until it is right? Do we refuse? If he screams, do we try to calm him or just ignore or punish? I have no clue what to do. Right now at this point I would say he is about 50% on a good day. His tics are all gone, but the OCD remains. He argues a lot and all of that. But the saying things over and over, like he needs us to say, "good night" then he says it, then we have to follow with "I love you" after he says it. And if it isn't right, we have to do it again, and again, and again. he gets very agitated when we don't. I can't keep doing it though, so I am not sure what the right thing to do is. Lisa

Hmm, no answer from email. Could anyone confirm his email address? I can tell you what i have as I am not sure I should post here on the public board. Thanks! I won't want to call and be a pest if they are just busy.

Thanks! I called and they gave me the email address so I should hear back tomorrow. In the mean time I am going to give him some Benadryl (he is having sleep issues) and some Motrin every 6 hours for a couple of days, or at least until I hear back from Dr. B. It has been a really tough day, at least tough as far Ian goes.I know some are worse off. But his arguing and tantrums are SO exhausting. He was in tears in the hockey locker room before practice and ticing away after. sigh...

I know that strep has been going around the school. Ian is fine, illness wise. But he has been backsliding. He seems to have developed a new vocal tic that sounds like a bird call (why do those break my heart the worst?). And his mood has not been as good, defiant, rages and tantrums again. I am charting and it clearly could be due to the strep at school. But he is on Augmenten and Ominifec (?) right now. I am not sure what else to do. Should I call Dr. B and ask? he was on a steroid burst a month ago and it was wonderful! But I know he can't take that all the time. He is on the normal child dose for illness for the antibiotics for his weight (don't have them in front of me). I don't want to rip his stomach up to much with Motrin along with antibiotics, though I am giving probiotics, too. I was so hopeful with the progress, but to see us going backwards makes me very sad indeed. He is not sick at all. Just the OCD and tics, behavioral issues. Lisa

I sent him and he is just the same today. I think your right and he is was likely exposed at school all last week. He did have a bit of a tougher few days but that was before the party. He is a bit better today and no worse since yesterday. I will keep my eye on things, but I am glad I sent him.

He hasn't really reacted to exposure yet since we have been diagnosed. So I have no idea. It is in his classroom as well, I found out. So he has been exposed, so I decided to send him to the party. If he wasn't on medication or already exposed in the class, I would not. So far he hasn't reacted any differently this week since being exposed in school. he still has some issues since starting antibiotics, but he isn't any worse this week. So I don't see it doing any more harm. If I am wrong and see him slide, I will learn a very valuable lesson going forward.

I am paranoid too, that is why I am asking. I am leaning against it. I didn't know if I was being too paranoid. If it was 3 or 4 days I think my answer would be different. But just one day I say perhaps it is best to pass. Hubby says he should be fine since he is on meds too. I don't know.

My son is invited to a birthday party tomorrow with his best friend. His friend was starting to feel yucky yesterday and was taken in this morning with strep. He is on antibiotics and won't be contagious by the time of the party. Ian, my son, is on two antibiotics and is doing quite well. He has seen his friend at school, so likely exposed a bit already. The mom may reschedule as she wanted to give everyone that option. But if everyone is fine with their kids going, I am wondering if it would be ok to still send Ian. They are 7 and 8, so not wiping noses on hands and such. Thoughts? I try not to put my kind in a bubble and freak out over everything and let him be a kid, but Dr. B is closed today so i can't call and ask him.

That is great to hear. It is so stressful to want to help your child so much, yet fear the expense. Such a blessing to not have to worry about that. I can't even explain the load it takes off my shoulders.

I'm looking into the same thing, except we don't have United Healthcare. Did you call and ask Dr. B office if that particular insurance covered the IVIG? Yep, I called the office and ask to talk to someone about insurance. The lady I spoke to told me the insurance plans they have the best luck with.

They are having open enrollment at my husband's company so I am looking into plans instead of our HMO, which is NOT Dr. B friendly. lol I found out we can get United Healthcare, with a deductible, but Dr. B and IVIG are all covered under this plan. We would have to pay a $1000 deductible toward the IVIG, but that is nothing compared to out of pocket costs. I talked to his office and they confirmed I would need no referral and that it was very IVIG friendly, should we have to go down that road. That is such a HUGE relief to me, I can not tell you. And it doesn't cost us any more monthly than our HMO would next year. I knew we had to figure this out now since open enrollment is over next week, and we would be stuck for a year. So big sigh of relief. It takes such a load of worry off my shoulders.

Thanks. yes, my son is not loving the liquid. I also won't keep him on two antibiotics for too long. I will try it for the two months and see. But I don't think it is good for his stomach, and everything in moderation. I wish he could swallow pills, but it is still hard for him. I might start trying with Motrin or something else before getting antibiotics in pill form or I will be stuck crushing them all the time. lol I also was curious about the OLE, and even bought some about a month ago before we started the antibiotics in case we couldn't get in anywhere very soon. But I am waiting on that now. I just want to put the least amount of STUFF into his body that I need to for improvement. IVIG is a big thing to us and we will not jump on it unless I feel it is necessary. Right now we couldn't pay for it anyway. What a long road this is.

Thanks for the replies. I guess we just need to see how he does. I am hoping he has more improvement on the two antibiotics. I would like to avoid IVIG. But if it is what has to happen, then I will do it. It just seems so many really bad cases did well on antibiotics alone, Saving Sammy didn't do IVIG.

We saw Dr. B today for our second appointment. He said it was positive that Ian did well on the steroid. He wants to keep him on antibiotics for a few months and added in Omnicef. I know after that, he said if he wasn't do a lot better we would consider IVIG. So I am curious about the different way doctors approach treatment and which is the preferred method of treatment? It seems like a lot of kids go on antibiotics for years. But Dr. B said no, he doesn't believe in years. It sounds like he treats for a few months and then IVIG is just the next course of action if not enough improvement is seen. I have heard many different stories on here, so what is the best? IVIG makes me nervous and there is no way we could afford it. Our insurance is said to not be IVIG friendly. I am still feeling a bit overwhelmed by everything. Lisa

You can call and make an appointment with Dr. B. His office will send you an order for all the blood tests you need. then you should be able to go to your local lab where your insurance is accepted and get them done. that is what we did. They will send the results to Dr. B. I know how frustrating, scary, uncertain this is. I am feeling the exact same way. I am trying to so hard to not let it all get me down. But it is hard. I think when it is new it can be overwhelming. I know it is for me. Keep putting one foot in front of the other, try to focus on one day at a time and we will all make it through this together. Lisa

No, I got my blood work done. Dr. B wants to test everyone in the house. My titers are 800+. I am wondering what this means for ME. I am not sick, I feel fine. No flu like symptoms, sore throats or anything. I am suppose to call my doctor and go on Augementin for 15 days. Just wondering what such high titer numbers can mean health wise. It kind of freaked me out.

Bumping in case anyone has any input on such high titers. Thanks!

I got a call from Dr. B's office telling me my bloodwork was back and my strep titers are over 800! I am not sick, never am. And I never get strep throat. Everyone else in the house has low titers, even Ian (PANDAS kid). It just seems very high to me. Is this anything to be worried about personally? I am to call my doctor and be put on Augmentin. But other than that, does a high number mean anything?

Dr. B did his battery of tests so I am sure he will tell us if there is anything as I think his tests are pretty thorough. The last couple of days he seems a bit better, so maybe it is just adjustment off the steroids. He also caught a cold from his sister, so that couple play a part, I suppose. The tics are still gone as far as I can tell.

Maybe. I don't know. I kind of assumed since we were seeing one of the top docs in this that he would pick the right antibiotic from the get go as it sounds like he treats all his patients with Zithromax. But I am still learning and nothing is cut and dried with this disorder it seems. I am charting and taking notes of such things so maybe he can give us some answers next week. I am kind of heartbroken that he got worse again. It was SO nice and he was so much happier. But you can't take steroids forever either.

Well, I would doubt infection coming on stronger since he is on the antibiotic for 30 days, still has more doses until we go back to see Dr. B. Unless the antibiotics don't help. This disorder is so frustrating too because it seems there is no "norm." Nothing to really count on and no set rules on how kids react and such. I just wish I knew what to expect.

We just finished up out steroid burst, 16 days I think it was, from Dr. B. Ian is still on the Zith. too, of course. But the moods have worsened and we have had more tantrums and rages again after the steroid was stopped. Is this normal? I was so hopeful for a while but have been nervous having seen this backslide. Is it temporary? I need some hope.. Lisa

Those that travel for it, is insurance covering it? I don't think mine would since it is out of state for us.

Yep, we were there Thursday. Yep, 7 year old boy. We are not doing the Cunningham test right now. We are all getting tested and Ian is having a few more blood tests too. I will see what those say and go from there. We may do the test if we don't see much improvement this month. I am doing this all out of pocket so am trying to spread it out a bit if I can. His initial titers were not high, so obviously not telling of anything. But again I keep hearing that doesn't mean anything. We are just taking it one day at a time and I am reading, trying to understand everything. We must have just missed eachother. Are you doing the Cunningham test? We are all getting tested to see if we are carriers, but her titre #s are definitive, all very black and white apparently, so not sure why we need the Cunningham test...frankly the blood draw is a huge issue, so not sure I want to mess with that with her right now. We are tracking too...I just love having this kissing hugging smart kid back in my house ) Praying for that and yours too...7 year old boy, is that right?