lmkmip67

One thing I struggle with the most is the day to day survival having a PANDAS child. This can be from the sadness of seeing how it affects their life, to the sheer annoyance of the tics, to how to discipline. This isn't a post about my vent or just for me. I thought it would be really helpful to have a thread of tips on daily survival with a PANDAS child. It could be anything that has helped you, with any aspect of this. From a glass of wine to discipline techniques to how you explain this to others. Anything. I know I would find it very helpful and I am betting a lot of others would too. So share away! Lisa

I don't think so. He has no symptoms of anything. Nothing at all, except the OCD, moods and tics. he is on a treatment dose of abx already so can't really increase. I am wondering if he was exposed to strep and I just don't know it. He is out of camp and we are home all next week so we are going to focus on rest and calming him down a bit. School starts in two weeks and we have a treatment next week. I will focus on detoxing as well, then see where we stand. The antibiotics have never seemed to make a different in his symptoms either. And we have tried three kinds and combinations even. I do feel we are trying what we can if it is just PANDAS. It might be telling if he doesn't improve after this 3rd, so then I will look at other infections. THough I think Dr. B really does look at co-infections, at least he seemed to order a lot of tests. I will research it further, however. Thank you!!

Ahhh, that is you! I know, I feel the same way. I never know if I should say hi to someone or respect their space. Your are right about the bathroom. I am going to arm us with hand sanitizer next time as well. I do, but don't always chase him with it, i will more next time. I have been journaling by the week, your right, that is very helpful. that is how I also know he is worse, and getting worse, than last IVIG. thank you for your input!

I heard back from the nurses. They stay to stay on course and talk when we come in. And that he could have been exposed to strep that I was not aware of. The issue I have is if he was exposed after these treatments, then they obviously aren't doing much. But time well tell.

I had no idea about the door shutting! OMGosh. My son does that too and it is driving me batty. He just started it maybe a month ago. I am trying to stop him from doing it and it involves a major meltdown when he can't shut all the doors. I didn't mean to hijack, but this is also have two IVIGs. Anyway, my husband didn't understand at first either. I would suggest some family counseling that involves everyone. It might help your husband understand that this isn't about him and it is about how your son is feeling. Yes it affects everyone, but the counseling could help you all deal. If it is having in impact on your family, no matter how mild your DS is, it is worth it. GL!

That is a good idea. I will drop them a quick note. Couldn't hurt. He is on Augmentin twice a day. I forget what dosage that is, but it is treatment dosage as if he had strep. Thanks!

I will try to keep that in mind and see if I can get some milk thistle. He doesn't display any allergies to rag weed as of yet. I will see if I can find one of the other things as well. can't hurt. Thanks!

Got it, thank you! that is very helpful. I just like to have an idea, you know?

Can anyone tell me what is the ballpark for an investment in these appointments and treatment? How many appointments do you need?

I am sorry, I just need to vent. We are 1 1/2 weeks from IVIG #3. I realize healing can take time, so I don't expect huge strides overnight. But I also don't expect him to get so much worse. This week his OCD is at an all time high. He is focusing on the weather 24/7 (fear of thunderstorms) back to long wiping, arguing and meltdowns galore, tics. His vocal tic isn't too bad, but he has started snapping his fingers. Last time things started to get better around 6 weeks post IVIG. This time they are getting worse. No one that I know of is sick around him, not here at home or at camp. Nothing has changed, we just got back from vacation last week. we only went an hour away to the beach. I can't keep trying to figure out WHY or I will go batty. I will be talking to Dr. B about lyme some more. But after fighting with him for 45 minutes over 20 minutes of reading, him losing tv and having a crying fit in his room for 20 minutes, I have to admit, he is not improving. Sorry to vent, just has to get it out. Lisa

This is very interesting to me. We are heading into our 3rd IVIG in a 1 1/2 weeks and we are having worsening and worsening symptoms this week. He is suppose to be doing better, not so. I would love to learn more what kind of homeopath to see. We live near Boston so I would assume, should have a good supply of individuals to try. I am trying to remain positive about IVIG, but As he gets worse, I am losing hope. It has been in the back of my mind but as time goes on and we don't see the improvement, I am thinking more and more about this route.... Lisa

That does help, thank you! I expected a couple more treatments anyway, at least. I just hoped to see something, you know? But one treatment at a time, I keep journaling and trying to stay positive. He isn't TERRIBLE. He is a normal little boy with a lot of OCD issues (mostly fears and separation, wiping isn't to bad anymore, and he doesn't get too into germs and that type of thing, more repeating and rituals), the occasional vocal tic, and defiance. I could almost handle most everything else if he just wasn't so darn argumentative all the time. lol

It has been 8 weeks between IVIG's. So almost 14 weeks since the first one. We are going back in two weeks. So about 6 weeks since the 2nd and 14 weeks since the 1st.

Ian is 5 weeks post 2nd IVIG. We saw some improvement after the first, about 6 weeks out. The second one did cause some symptoms to flare, like Dr. B said. But he said it would be less and not as long. 5 weeks out we are still getting occasional tics this time (they disappeared last time) OCD symptoms, fears and defiance, tantrums, etc. We were on vacation last week and he got a bad case of poison ivy. He is on a 7 days dose of steroids to control that. So not sure if some of it now is roid rage, or what. The occasional tic is still there, though not constant. I thought we might see more improvement sooner this time, but 5 weeks out and still about the same as the previous 3 or 4 weeks. And really not a lot better than he was before the 1st one. We did testing for Lyme and all of that as Dr. B suggested. All was negative (he even looked the results over again last time we were there). Kind of just feeling a little let down at this point. I hoped to see MORE improvement, I guess... but we are going back for IVIG 3 in 3 weeks. Lisa

I can only echo the same. No one in this area was found to be very helpful, so we travel to see Dr. B in CT. I am in Metrowest MA. Our pediatrician just kind of shrugs her shoulders about it.

I thought about a tutor this summer for Ian so he could keep up on his math and reading knowledge. But decided against it because I think it would be wasted when he is struggling with getting his brain to recall math facts and such. A tutor won't help his brain process things faster. So I am letting him do math facts on the iPad, some worksheets, on the computer, doing reading comprehension worksheets (free to print from internet), and reading 20 minutes a day. He can earn more screen time by reading equal time. When he is good and closer to baseline, he recalls things very easily. So I don't think a tutor is the answer.....plus we travel to do IVIG, so I am spending the money there and keeping up his skills on my own. He 8 and that is what is working for us right now.

Not sure what to attribute it to, but Ian has been sleeping past 7 a.m. for the past 3 days. I wish I knew this because I would not be up now! ha! He is always up at 6, or earlier. 5 days post IVIG #2. Maybe just coming down off the steroids he took for 6 days? Growth spurt? already seeing impact from IVIG #2? I keep expecting him to come down not feeling well. So far he has felt fine though.....I wonder how long it will last....

I also wonder how do you determine if a child with autism has PANDAS? I know autistic kids can have their own set of issues, and some are very close to PANDAS. I have seen quite a few kids that are said to be autistic in the infusion center when we have been there and they are so low functioning I wonder how can you tell PANDAS in these children? It is interesting trying to separate all this issues.

We are about 2 days out from our second IVIG with Dr. B. My son also gets very agitated during the treatment. But it could be due to roid rage, or the Benadryl (feeling tired also gets him going), or the treatment. I really have no clue. He doesn't need to be sedated. But he did get pretty grumpy this past time to where I was wondering if we should turn it down a bit. he came out of it though and now we are 2 days out. He had a headache that started last night and still has one today, but not as bad. It isn't slowing him down. I gave motrin and that seems to help. No nausea for him. he just keeps on keeping on. He skated in 3 hours of hockey camp yesterday and did great. I think it is different with everyone, but the nurses did tell us that a child will usually react about the same each time as far as how they feel. Dr. B also told us that we will see some turning back of the symptoms again but we should see less of it and it shouldn't last as long. We did see improvement starting right around week 6 after the first. he got a cold about 5 days before IVIG but did not develop vocal tics from the cold like he has in the past. Right now he is hyper, happy and hungry, because of the steroids. lol We are on a scheduled plan of ever 2 months right now. We wait and see how he does after each treatment. We were also told that if they react to illness they should react less and less as time goes on, and success is when he is 100% all time, even when he gets sick he should not react with PANDAS symptoms. I would expect to see some improvement again at about 4 to 6 weeks here with Ian. I am learning it is a wait and see kind of deal. You do have to be patient. IT does seem like most struggle with some worsening of symptoms at first, so prepare yourself and just accept that it may be a bit rough. It helps. But it does get better.

I complained at first about the drive to see a PANDAS specialist for mys on, but the 2 1/2 drive is really nothing now. We live near Boston and drive almost to NY to see Dr. B in CT. It is worth it to go to someone that knows about PANDAS and can treat it from experience. I would drive 5 hours if I had to. I would do what I needed to do, but I think if you have a few hours drive to get to someone who treats it on a regular basis, it is worth it.

I lucked out with Hotwire and got a Holiday Inn with a pool.

We are going for IVIG this coming week. I found out the pool will be closed at the Doubletree. My son is very excited to swim and it makes this whole experience easier for him. So I need a hotel with a pool without spending $200 a night. Does anyone have a decent hotel recommendation with an indoor pool? Thanks! Lisa

I can tell you I was so nervous and scared at first. Wasn't sure what I was doing to my son, etc. It was no big deal at all. We are heading into our second IVIG this coming week. We did it with Dr. B so steroids 2 days before, during and after. Motrin and Benadryl during and after. My son wasn't bad with the needle at all. He even wanted it out so he could swim at the pool. lol He swam for 4 hours and collapsed in bed that night. He had it put in again the next day. He had a slight headache the day after. but ever so slight. He ended up going to school, playing all his weekend sports and everything. He didn't have one second of down time. I was prepared to stay in the weekend, etc. Even thought I would get a lot done, but no. lol Now I know we have to do another one, so I am even looking forward to the time to just sit and not have to do anything since we have been so busy lately. Not that I want him to have this, but he has to. So we might as well see the positive. Good luck! It really will be ok!!

We saw the worsening of symptoms...and stayed there....for most of the time. Vocal tics we had not seen since last August came back. About 5 days ago they all stopped, totally. The OCD is still there. The wiping issue seems less. I don't recall it being an issue for a week or so. This week his mood is a bit better. OCD is still there, repeating phrases. Today he had a great day. He lost a classmate in his 2nd grade class this week. I was worried. He is handling it beautifully. Even compassionate. He was HAPPY today. He seems excited about things always. But today it seemed like he was just happy. without the extra jumping and all. He has swimmers ear and laid still to let the drops sit for the recommended time. He had a tough time with that last year, same issue, before he was diagnosed. Not reading anything into it. The last few days have been almost slightly pleasant.....We have the second IVIG scheduled for next week. I am looking forward to it.

Thanks, everyone. I will take some of these tips tomorrow when I talk to him.