What should I be seeing and still a bit confused...

[lmkmip67]

We are on day 2 of the antibiotics and steroid. I was feeling a bit overwhelmed at Dr. B's office this last week and I think there are things I should have asked, but didn't. I guess my big question is what should I be seeing or looking for? Should he start improving this month? And after the initial 30 days, if he doesn't improve, then what? Is IVIG automatically next? How soon should I see improvement? Sorry I am so full of questions. If he is diagnosed relatively soon (within say 6 months from onset) does this improve his chances of doing better, faster? I am hoping the antibiotics are all he needs, to be honest. The IVIG makes me nervous and not even sure we could do it. Insurance and funding is a big issue. I am just feeling overwhelmed I think, but all of it.

 

Lisa

[KaraM]

Hi Lisa,

 

Every child responds differently. We never did the steroids. But my dd started responding slowly around day 11 to her first round of a 14 day dose of Omnicef. She was able to do some ERP and get over a few fears. Her rages decreased slightly, too. We went from days that we ranked 4 or 5 (5 being living h###), to days that were around 3 - 3.5s.

 

However, a month later she went on a higher dose of Zithromax and started responding very quickly. I would even say within a matter of hours. I gave her the medicine at 10am at school, she came home, played by herself (hadn't done that in ages) and then fell asleep in my lap. I literally looked up on line after to see if drowsiness was a side effect. Each day she got better and better. Within a few days we were down to 3s and after a couple of weeks down to 2s. Now 5 months later, a 1 is a bad day.

 

I suggest making some sort of list or chart of the symptoms your child has been experiencing and rank how severe they are each day. Then you can really track if there is any improvement. I can email you my excel spreadsheet with the chart if you want - but I admit our ranking system was very subjective. Buster's charting system seemed more objective.

 

Don't get discouraged if you don't see anything right away - or even if things get a little worse before they get better. Try to be hopeful but patient.

 

Kara

[lmkmip67]

Thanks, Kara. I think we are just so tired of feeling like we are yelling at him all the time, tired of feeling like we have to watch him like a two year even though he is 7, tired of the tantrums, etc. We are just tired. and I fear that this is him until he grows up. Which saddens me because I feel we yell so much (I am not a yeller, either. hardly ever yelled at my daughter). But as you know these kids are really difficult on their hard days. I try to remember he can't help it. But it is hard. so I think I am just really desperate to help him and hope he gets better. But i will be patient. I am trying to take it one step at a time. I also am trying not to be disappointed because he had such a hard morning today. One step at a time...

[amyjoy]

HI Lisa

 

I know how each day feels like forever....and, day 2 is not long enough necessarily to see the result for either the antibiotic or the steroid burst. It can take days to weeks potentially, to see a change with the antibiotics, and days for the steroids to kick in depending up the level of inflammation your child is experiencing. But if the steroids are doing to help, you will see it soon. It may start with just a little window of reduced symptoms, that grows over the days, or, a sudden and persistent change that lasts awhile.

 

For my son, it took until day 3 to see a reduction in tics, but then it was only during the day and the nights were bad, but then by like day 6, the tics went practically away for like 2 weeks, and then slowly returned at night again but they were pretty bad, so we did lots of natural anti-inflammatory stuff to help him per his MD and they seem to helping while we are working to raise the money we need for his first IVIG treatment.

 

Anyway, each child is different, and all i can say is, hang in there Lisa. You're a great mom and you're doing everything you know to do. Please update on the progress of your child.

 

Many Blessings

amy

[Healingthedude]

We are on day 2 of the antibiotics and steroid. I was feeling a bit overwhelmed at Dr. B's office this last week and I think there are things I should have asked, but didn't. I guess my big question is what should I be seeing or looking for? Should he start improving this month? And after the initial 30 days, if he doesn't improve, then what? Is IVIG automatically next? How soon should I see improvement? Sorry I am so full of questions. If he is diagnosed relatively soon (within say 6 months from onset) does this improve his chances of doing better, faster? I am hoping the antibiotics are all he needs, to be honest. The IVIG makes me nervous and not even sure we could do it. Insurance and funding is a big issue. I am just feeling overwhelmed I think, but all of it.

 

Lisa

 

It took us 6 to 8 months to diagnose my son in 08.

Initially we did IM Bicillin shots which worked like a charm for 4 months...then he became resistant to the antibioric and it stopped working

Steroids made my son too aggressive and behavioral to really see any benefit.

IVIG has been the best for us.

We did AB and Steroids until we got IVIG approved by insurance-

took about 4 months to line up everything.

I have heard that for some people who catch it early 1-3 months antibiotics may be enough.

 

Wishing you much healing

 

C

[lmkmip67]

We are on day 2 of the antibiotics and steroid. I was feeling a bit overwhelmed at Dr. B's office this last week and I think there are things I should have asked, but didn't. I guess my big question is what should I be seeing or looking for? Should he start improving this month? And after the initial 30 days, if he doesn't improve, then what? Is IVIG automatically next? How soon should I see improvement? Sorry I am so full of questions. If he is diagnosed relatively soon (within say 6 months from onset) does this improve his chances of doing better, faster? I am hoping the antibiotics are all he needs, to be honest. The IVIG makes me nervous and not even sure we could do it. Insurance and funding is a big issue. I am just feeling overwhelmed I think, but all of it.

 

Lisa

 

It took us 6 to 8 months to diagnose my son in 08.

Initially we did IM Bicillin shots which worked like a charm for 4 months...then he became resistant to the antibioric and it stopped working

Steroids made my son too aggressive and behavioral to really see any benefit.

IVIG has been the best for us.

We did AB and Steroids until we got IVIG approved by insurance-

took about 4 months to line up everything.

I have heard that for some people who catch it early 1-3 months antibiotics may be enough.

 

Wishing you much healing

 

C

 

Thank you! I would say it was about 6 months for my son. I guess time will tell. Yes, I agree that the steroids can make them aggressive and grumpy. I know they do me when I need to take them for my asthma. So no surprise there.

[momaine]

I know one little girl that was diagnosed within the first month and after a month of antibiotics she was pretty much back to herself.

 

With my dd, who had PANDAS for 3+ years before diagnosis, within two days we saw improvements on antibiotics, but the prednisone took longer to see the benefits, though they were greater than with the antibiotics alone. The quickest was a week before we saw improvements and the longest was 13 days before we saw improvements. The improvements really only lasted until maybe a week after we stopped the prednisone then it was back to where we started.

 

With the the first IVIG, the improvements lasted the full 8 weeks with one blip of worsening around 5.5 weeks post. She had a second one but got sick a week later and worsened before slowly beginning to improve. So, we're seeing improvements after IVIG #2, but very slowly. (with a bad day now and then)

[momaine]

oh, and I wanted to second the suggestions to make a chart. List each bahavior that is troublesome then give it a number from like 1-9 each day. I did 1-3 noticable to me, but not interupting life. 4-6 interferes with daily life, but not debilitating. 7-9 debilitating. It made it easier to see a pattern. I'd add the numbers for the day adn could see when the good days were with a glance. I used Excel.

[lmkmip67]

Great idea on the chart, thanks! I will do that. Three days in and he seems a little more agreeable. I stress LITTLE, though. lol Charting seems like the way to go.

[airial95]

Ditto on the chart suggestion!!! It made my life much easier, and it was easy to report to the doctor how things were going. I also asked the teacher at school to "rate" him every day so I could see what was happening there (most of his issues were at school - so that was important for us.) I've set up one in excel that I've shared with other mothers - if you'd like it, just send me a PM with your email address, I'd be happy to send it along.

 

We got a dx about 6-7 months after the strep infection that started things and we started having issues. In our case, since our son was so young, it took us that long for things to get bad enough that we realized we were dealing with something more than just the "terrible two's". I wish we had that conversation with the dr sooner!! He immediatly recognized it as PANDAS and started us on azith. He gave us 30 days at first - and within about 10 days we saw real improvement, with a significant jump after about 14 days. I know 2 weeks seems like an eternity - but it really was drastic for us - probably about a 50% improvement.

 

We've been on abx consistently since January now (just switched in Sept from Azith to Omnicef though) and I'd like to think that we're about 80% of the way there. Some days are worse than others, but having the excel charts really helps us notice how much "better" our bad days are now - from where we were 6 months ago.

 

Hang in there!!!

[lmkmip67]

Thanks! yes, I will PM you. That helps save a bit of work, thank you. I am hanging in there. It is hard to wait, but I will be patient. Ian has been a tad less argumentative last night and today. lol So I can hope. I wish I would have explored this sooner as well. It was mentioned to me right after he had strep and the vocal tic. And I did take him in for a throat culture, but it was negative so I thought nothing more of it, assuming it would eventually go away. It didn't and things got worse. My son isn't as extreme as many things I read here. But he fits with everything I read as well.