lmkmip67

Thanks, Vicky. we are telling him to touch his own arm instead, and will keep reminding him. Hopefully that will help. It is so hard to explain to other people. I feel like I have to explain to others at birthday parties and such that he is dealing with some OCD issues and has a touching compulsion right now. Not sure how else to handle it with people.

Thanks. I will give that a try. With enough reminding he might be able to do that. So hard when you know they can't help, really.

his latest compulsion is having to rub arms, heads, etc. He isn't doing anything really inappropriate. But he will run his hand from shoulder to hand, and rub heads with his hand, etc. He is 7, almost 8. I can explain most tics and issues to people. But this one really bothers me. I am trying to talk to him about personal space and not touching friends and such, like that. But trying not to focus on it so much he hyper focuses on it, too. As we all know if we keep talking about something, these OCD kids grab onto it. He is about 2 weeks post IVIG now. It was present before, to an extent. But has ramped up. It is embarrassing, but it also worries me. I have talked to his teacher to let her know, and she has noticed it too. In today's society it just worries me, you know? He knows he does it, but can not seem to help it. I don't believe he even thinks about it. I am not sure what to do about it....do I just explain to other parents at birthday parties and such? This is so hard. Lisa

That is interesting to hear the different outcomes. Dr. B seemed to think we would see some improvement before 10 weeks, as we already have a 2nd treatment scheduled in 8 weeks. Ian's OCD sure is worse right now. So I am hoping that is the turning back the page syndrome. And not the new normal. I will keep updating, though, as it may be helpful to someone else.

It has been a week for Ian, and he has been grumpier, a bit more OCD, a few tics popping out. Nothing horrible, though. The strange thing this morning is he is sitting playing with legos, with a concentration he never has, ever. Complete with sound effects. he was never that kind of kid and never had real imaginative play, he was more a sport kids. I am sure I am reading too much into things, but I just noted it. It just made me wonder what the first signs you may have noticed when you realized IVIG was doing SOMETHING?

Wow, we only gave Motrin and Benadryl for one day after. I haven't been watching how much he is drinking now (it has been 5 days now) and he has been perfectly fine. Grumpy, but no headache or nausea. I wonder if the IVIG isn't working then.....

Sure. He took 1 tsp of prednisone a day. He is about 52 pounds. Motrin and Benadryl were given every 6 hours, but not during the night. I got three doses a day in, morning, noon and bed time. He took whatever the dose is for his weight, he had chewable tablets, two of Motrin I think and 1 1/2 of Benadryl. Forgive me for not knowing the actual measurement.

This is what we did and I followed it to a T. So far, 4 days later and he is perfectly fine, has been the whole time. We started steroids two days before, during and two after. We hydrated before, during and after. We did Benadryl and Motrin starting that morning and did it every day until Saturday (he finished is IVIG Thursday). He had a little headache on Friday. But he went to school. I had planned on keeping him home, but he was perfectly fine and has remained so. I am not sure if he was just lucky, or if all we did helped.

Thanks! Does anyone else know how long Dr. B likes kids on antibiotics even after IVIG? Is this something they are on until they are an adult?

My son, Ian, was a trooper. Not afraid of it at all. His largest concern was having to sit still for so long. lol He did great. He did get really grumpy. But we had let him watch the Bruins game the night before, plus we had to get up at 5 to drive to the Dr. Plus all the Bendadryl he was very tired. so far no side effects at all except the grumpies. I am keeping up on motrin and benadryl tonight. Dr. B said he could go to school tomorrow if he wanted to, so I will send him if he is feeling ok. No headache yet or nausea. But I will keep an eye on him. The nurses there were wonderful, and Dr. B is as well. I forgot to ask, does anyone know how long Dr. B recommends they keep taking antibiotics even after IVIG? I know we may go back for another treatment, or so, depending on how he does. Does he want them on preventative antibiotics for years? I think that was the only thing I forgot to ask, and felt if someone here knew maybe I didn't need to bother them with one question. All in all though, it was a lot easier than I thought it would be. Ian swam in the pool for 4 straight hours last night. So it went well. Now to see how he does..... Thanks for all the support and advice! Lisa

Was it for PANDAS or for Immune Deficiency in your case? Our company just switched to UHC, and I remember from previous posts that they were one of the better ones at getting it covered. We're not there yet...but it's a constant discussion with my husband! Thanks To be honest, I am not sure. I didn't ask. They just told me at Dr. B's office that it was covered. But they did say that UHC is one of the easy ones to work with.

United Healthcare here, too. Easy peasy.

We are going next Wednesday and my son is 7. I am not going to tell him until maybe Monday. I am just going to tell him that we are going down to see Dr. B, and the nurses at Dr. B's office are going to give him some medicine that hopefully help his OCD (that is the part that bugs him the most). I will tell him it will be given through a needle, kind of like when he gets blood work done (he is fine with that now, so will be ok with that explanation), but that there is a little tube attached to it that delivers the medicine to his body. I won't tell him about any side effects or anything like that. Just that we get to watch movies and play games all day while at the Dr. I also told him we will bring some favorite snacks and that daddy gets to come this time and we can stay overnight in a hotel. He loves hotels, so that should sound fun. I didn't order the bear as he is not a stuffed animal fan, and may be a little old for it. Once he understands something, he is usually ok, so I don't think he will have to many issues.

We are heading down and will be there over Wednesday and Thursday of next week. Would love to meet anyone else going to be there. Hopefully it all goes smoothly! One tip I just figured out is if you have a laptop or iPad and subscribe to Netflix, there are lots of movies and shows your child can stream with the wireless there. Nervous, but excited that it will be a positive thing for Ian. Lisa

Thanks everyone! Kim, I did read your story, but it wasn't the what made me nervous. I really hope this is helpful for your son!! I guess we just wonder if what we are doing is best for our child. Hearing some hopeful stories is very helpful. Thanks again!

We are going to Dr. B.

I am not OCD, but I can't help but get very nervous about the difficult times I hear some people talking about after IVIG. I don't expect it to just fix everything over night. It seems so many struggle after for a few weeks. I am often exhausted daily with all the defiance and arguing. I am not honestly sure how I will handle it if it gets worse, even for a few weeks after IVIG. We go in two weeks for our first one. My son is 7. I realize that most are on here because they are still dealing with it. But I need to hear some good news, some positive stories. Are the after effects really that bad? My husband is more nervous about it than I am. I know it is obviously the next step. But it still makes me nervous. I worry about something else happening as a result of IVIG that we can't fix. I may not really understand how IVIG works, or maybe I am just really distrusting, not sure. I hear it is safe. But it still makes me really nervous. Can anyone reassure me that this is the right thing to do?

Oh wow, my son does the hand touching and then smelling thing. I thought that it was odd. I am getting confused on what is a tic and what is an OCD ritual. lol

I am really happy to read this. It gives me some hope. We are going to try the IVIG route, but I know that I won't subject Ian to tons of IVIG treatments, either. I will, of course, see how he does. but I don't think honestly more than 3 will be doable. After that number if things are not better, I don't think they will be. So I am happy to hear some have had victories with homeopathy. it may be a route we look into down the road. I wish you continued success with your child's treatment!

Thank you, ladies! That is more helpful than you know! Confirms my gut feelings. We will be canceling and going for IVIG in a couple of weeks.

A part of me wants to just cancel. We are seeing Dr. B in CT for months now and it took this long, since Sept. to get in with Dr. F. We have IVIG scheduled in two weeks already. I don't know. Hubby wants to have a second opinion and I understand that, but I am not sure what Dr. F will do, if anything. I can't get our blood work for a week (takes them that long to send it out) so I won't have anything to take. I should have thought of it before, but the appointment came up on me quickly. Has anyone see him? What should I expect? Lisa

Good to know on the Double Tree. Does it have a pool? That will be the big thing for Ian. He loves to swim and I think if he knows he can, that will help get through the first day. even if he isn't up for it, the option is a positive. lol. $83 isn't too bad. And yep, he also has a milk allergy, so a trip to Whole Foods will be a nice distraction for a bit.

Ok, that is helpful. We are going in on a Wed and Thursday, so I will likely keep him home through the weekend then.

We got a date, April 27th and 28th. Thank you so much for all the info! That is exactly what I needed to know! I am now a little nervous. I am sure it will be fine, but the side effects and the aftermath do make me a bit nervous. But I know it is necessary and am just going to take it one step at at time. How long did your children have to stay out of school?

Well, we are just waiting to schedule the IVIG with Dr. B in CT. We just got insurance approval. We have been on antibiotics since Sept. with not enough improvement, so are going this route. My main concern right now is kind of what to expect? Dr. B told us a little about the day, and that type of thing. I am more curious about side effects and that kind of thing. My son is 7, 50 pounds. Dr. B said he will be doing a 2 day treatment. can anyone share their experience with IVIG and Dr. B? How long during the day does it take? What kind of side effects might we say, and for how long? How might we avoid the side effects? Thanks! Lisa