New patient, abx but no change

[dasu]

My daughter is 4 and we visited Dr L who diagnosed her with Pandas based on her history only. She has been on Rifampin for four days now. She hasnt changed as expected, she is maybe a little worse. The only change is that her appetite has returned. She still has some OCD, is anxious, clingy, hyper, cant sleep, and very volatile.

 

Should we really see a change so soon? And if not does that mean she doesnt have Pandas? Im uncertain when there is no real test yet for Pandas.

Edited April 15, 2013 by dasu

[LNN]

Dr L do not hand out a Pandas dx lightly. So it seems likely this is a valid diagnosis - however, strp may not be the only trigger. Regardless, 4 days is far too soon IMO, to start to worry. You have seen improvement in appetite, which is nothing to sneeze at. It can take weeks to see overall improvements and even then, it you haven't hit the right and/or all triggers, you can backslide. But that doesn't mean it isn't PANS/Pandas. It just means more digging. There is no test for OCD, depression, tourette's - but it doesn't mean these conditions aren't real.

[nicklemama]

Way too soon for improvements. At the end of the week of abx, you may see some small improvements. The better test is in 30 days.

[dcmom]

It took my daughter between 30 and 45 days to see improvement on abx, at initial onset. Then the improvement almost happened overnight.

 

Since, we have seen that she typically needs steroids to get real sustained improvement. Dr L will most likely try your child on abx for a while, and then consider trying steroids.

 

Unfortunately you have to be patient. AND- look for improvement week over week, not daily, because healing can come in a sawtoothed pattern.

[dasu]

Thanks guys. Dr L stated that we would likely see some improvement "in a few days". (I really wish I could have spent more time at her office asking questions etc, the traffic was awful in NoVa and she was late and running behind. ) I am impatient. And more than that I am worried that its something other than Pandas, perhaps bipolar, or oppositional defiant etc. While my daughters initial symptoms were very Pandas-like, she has more of the hyperactivity and volatility now than the OCD, Tourettes, so that makes me question things. Plus I never get much sleep with the constant wakings and request to sleep with her.

 

Again thanks for the information and advice!

Edited April 15, 2013 by dasu

[Dedee]

What is the infectious trigger that you are trying to treat with the rifampin alone? Do you have lab work that shows elevated strep titers or is she thinking lyme? If it looks like lyme then you most likely will need more than just the rifampin. Most lyme patients are on combo antibiotics before they see an improvement. I would not be quick to put your daughter in the bipolar, ODD, ADHD categories. It is unlikely she has been afflicted with this multitude of issues......more likely she has an infectious trigger which can cause symptoms which mimic all of these and more. Dr. L is great, but you might consider an LLMD if there is a possibility of lyme or one of the co-infections like mycoplasma. Best of luck.

 

Dedee

[dasu]

at this point there is no lab work. when my daughter was first sick we couldnt even do a culture or bloodwork as she reacted so violently. she has settled down a lot, so we are hoping we can do something. the rest of the family tested positive to strep though, all with similar symptoms - minus the pandas stuff.

 

im looking for an LLMD in central virginia but for my dad who has a lot of neurological symptoms following lyme. so ill keep that in mind.

 

dedee checked out your sig, you must have quite a life.

[Dedee]

Lol....Yep, quite a life indeed. Fortunately, my older kids are doing fairly well right now. My daughter is the one struggling and we can't seem to keep her settled down for any length of time. Over the last 2 yrs and 4 months we have gotten 3 months here and there that are peaceful and we think wow we are really getting somewhere and then something happens and stirs everything up again. Definitely 2 steps forward and one step back. I can absolutely understand what you mean about the lab work thing. For a while we had to sedate my daughter just to draw labs but I think when it comes to this illness it is imperative to have lab work to know what you are dealing with from an infectious stand point and a immune system perspective. When we did my daughter's IVIG, she had to be sedated the entire time because she was so freaked out about having the IV in. It was a horrible time. Even now (she is 9 yrs old), it still takes both me and my husband to hold her down to draw labs. I would encourage you to insist on having labs done. I know you dread it. But there is no way to come up with an educated treatment plan without them. I have been where you are. I have cried while myself and three other people held down my daughter (even when sedated) to draw her labs. I just kept telling her that I was doing this because I loved her and it was my job to make sure she got better and was completely healthy. It isn't quite as bad now. She walks in by herself now. Her Father and I just have to hold her right before they do the stick because she sort of freaks at the last minute. Just get everything you need the first time. You will be glad you did. Best of luck.

 

Dedee

[Hopeny]

I am not a doctor but from what I understand rifampin should not be used on its own to avoid drug resistance. We are using rifampin and zith combo. We did see some almost overnight improvements with other antibiotics, but with rifampin/zith treating bartonella we saw a worsening (herx) for several weeks. One option is to lower dose. You may want to ask Dr L In regards to the combo/drug resistance question.

[nicklemama]

My son had more of the volatility and hyperactivity also. He had OCD we did not recognize for the first year. Tics slowly crept in too. He went a yr suffering without a proper diagnosis so we managed to just about see every symptom of PANDAS. We thought bipolar or something else too, but we were wrong.

[dasu]

dedee, what sedative did you use? my daughters psych was supposed to check what would be advisable for a 4 year old but he hasnt replied yet. the whats-best-for-you sounds familiar. :|

 

hope, interesting observation, today has been a *bad* day for my daughter. was crazy at the store and then too scared to have mom leave her alone at gymnastics. twirling hair constantly. anyways i read up on bartonella and there are a lot of over-lapping symptoms. sounds like a good test to do.

 

nicklemama, thanks for the feedback on your son. the range of symptoms is breattaking.

[Dedee]

They gave her liquid versed before drawing her labs. It was very difficult because she doesn't take medicine well at all and especially liquids. Somehow we convinced her to take it and at least it gave her some relief.

[Mayzoo]

They gave her liquid versed before drawing her labs. It was very difficult because she doesn't take medicine well at all and especially liquids. Somehow we convinced her to take it and at least it gave her some relief.

 

My daughter was given liquid versed at the age of 18 mo. for a surgery she needed to have and again recently for her T & A. It was helpful both times.

 

Dasu, liquid versed should be an option for a four year old unless she has other medical conditions or allergies. Maybe you will get a faster answer from the psych if you ask them if liquid versed is acceptable instead of them needing to research several meds. Then they can check on one med instead of several.

[Missmom]

I don't know if this would help you, but there is a numbing cream that you can put on the arm about 30 mins prior to blood draw and they won't feel a thing. Won't know when the needle goes in or comes out. I have drawn a blank on the name of the cream right now because we don't have to use it. My son is completely fine with needles ( fortunately) but my neighbor is an ob/gyn nurse practitioner. She uses this cream when they do circumcisions. She also has written a prescription for several girls in our neighborhood when they got their ears pierced. They said they never felt it. It must be pretty good stuff. I plan to ask her for it before my daughter gets her ears pierced. So anyway, sorry I don't remember the name of it, but maybe you could ask your doctor ahead of time to write you a prescription and put it on 30 mins prior to lab work.

 

Maybe others will chime in if they have used it.

[rowingmom]

EMLA