New & going to doc appt Tuesday, help please

[taffeelion]

My basic questions are, what should I ask & tell my doctor on Tuesday? When should I see the maximum effect from antibiotics? and, am I overreacting?

 

Here's my story so far:

10 days ago I noticed my 2 year old daughter touching her shoulder to her ear and thought maybe her ear is itching.

9 days ago I realized this was a tic as she was doing it over and over a few times a minute, also she was making some noises (clearing nose, humms, small grunts). I panicked and cried and looked up everything online.

8 days ago I took her to an unscheduled appointment, her pediatrician was not available so I saw another doctor there. The doc actually mentioned a strep test before I could (I'm sure he guessed I would request one after I told him I'd been online). Basically my thoughts were that nobody in our family has tics, these seem to come on overnight and they were 'complex' involving motor and vocal tics. I was going to beg for an antibiotic if needed, he did not seem like the flexible type. But - no need! She was positive for strep with the quick test. Since she had no strep symptoms he pretty much hinted that she might just be a carrier. He gave her a 10-day ceph script and a neurology referral for October.

7 days ago her tics looked worse to me. She was tired and watching TV and was tic'ing away. I cried again (crying has been a theme).

5 days ago her motor tics decreased, vocal ones are about the same. She also had lots of trouble going to sleep. I had to rock her to sleep at midnight.

4 days ago was her birthday & and a big birthday party. She did well, no-one noticed anything, but I still did. Had to rock her to sleep again around midnight.

 

Since then the tics are about the same and pretty mild, the sleep is better. I thought since she seemed better, the tics would go away, but they have not. I am obsessively worried. My husband and parents are not, I think they are more worried about me! I have serious anxiety if I see or hear her tic - I get knots in my stomach and have trouble sleeping myself. I feel I haven't taken a relaxed breath since 10 days ago!

 

Her 3 year old well-check pediatrician appointment is Tuesday and I want to go prepared. I've read that it may be a good idea to do more than a 10-day round of antibiotics. I'm going to ask for a new script for Azith. In this case, I think better safe than sorry, right?

 

Are there any other suggestions of what I should say to my doc or what I should ask for? A rheumatologist referral? This doctor is her usual ped, not the one she saw last week, so I have no idea what he thinks of PANDAS.

 

A note that I have not noticed any OCD or other major negative behaviors - no separation anxiety, but she is so young and I still can't fully understand her speech. Also note that I had Graves disease (autoimmune thyroid) at a pretty early age.

 

Thank you for this forum! Maybe I can go to sleep now instead of search Youtube for more PANDAS stories...

[Chemar]

Hi there and welcome

 

I am bumping your post up for answers

[tpotter]

Since then the tics are about the same and pretty mild, the sleep is better. I thought since she seemed better, the tics would go away, but they have not. I am obsessively worried. My husband and parents are not, I think they are more worried about me! I have serious anxiety if I see or hear her tic - I get knots in my stomach and have trouble sleeping myself. I feel I haven't taken a relaxed breath since 10 days ago!

 

I am so sorry to hear about your daughter, but WOW...you got on this very fast. That is absolutely the best thing you could have done (many of us, including myself, did not have answers for our children for years.) So, here's what I think:

 

1) To say that your child was asymptomatic is totally inaccurate...she was ticcing, at the least, and it sounds like also having difficulty sleeping (both are symptoms of PANS). Pediatricians need to learn that neuropsych symptoms are symptoms of strep (I don't know who ever came up with the "fact" that strep only had to produce physical symptoms.

 

2) Go to the NIMH website http://intramural.nimh.nih.gov/pdn/web.htm and print it out for your doc. Also, pull up Dr. Swedo's email and phone number for him to "consult" with if necessary. You may also want to get the Columbia University rat study that was done in 2010, where they produced tics and OCD in rats by putting strep antibodies into their brains. Another good study to pull up is the one in 2012 that was done at Tel Aviv University, where they produced symptoms, could see where in the brain it was affecting (the basal ganglia) and what medications were helping (both studies are easily available to find on pandasnetwork.org)

 

3) If it was me (after all that we went through trying to even get a dx...4 years worth just to get the dx, and now we're on year 8), I would not bother with the regular neurologist. S/he probably does not know enough about PANS, and may blow you off. Totally not worth wasting your time or money. If you PM me, I will send you some docs names.

 

4) I would also test for Lyme, but keep in mind that the standard western blot is only about 50% - %60 accurate at best, and the elisa (which they usually do first) is even less accurate than that. So, even if it's negative (and it's pretty much impossible to be false positive by the CDC standards), that doesn't mean she doesn't have it. Incidentally, given the fact that you have Grave's Disease, I would also test yourself. If it turns out that you have lyme, you may have passed it on congenitally, and the test results on your dd would be even less accurate. Luckily, lyme is a clinical dx, so a good LLMD (Lyme Literate MD) is the way to go with that (I can also give you some names of LLMD's you might want to check if you PM me). Many of us have found that there is more than just strep at play here, because being an autoimmune disorder, the immune system is involved, and if messed up, your dd is susceptable to reacting to a whole lot of different things. Incidentally, there may also be other issues, such as problems with the body processing vitamins, zinc, etc (LLM can explain methylation really well if you want more info.)

 

5) I know this sounds overwhelming, but honestly, you sound like you are so on top of things from the start, that I think your dd is going to do great (Dr. Swedo from the NIMH said that the best chance of a positive outcome to all this is getting the child treated quickly. You were on it from about Day 2) Wow. You are truly very special, and your dd is very lucky she has you for a mom!

[dcmom]

Taffee-

 

I can identify with the crying.

 

I have two daughter diagnosed with pandas a little over three years ago. The good news is: they are doing great! They are happy, blossoming, etc.

 

The tough news is- there are a handful of docs in the country that will treat pandas appropriately, and IMHO until you see one of them, you are wasting your time, and enduring more heartache. Pandas is (relatively) new, and was not taught in med school. You need to see a doc that has lots of experience.

 

Tell us what state you live in- and we can all make suggestions.

 

IMHO the appropriate course of treatment is something like: decent panel of tests, minimum of 60 days of full strength antibiotic, if no resolution of symptoms looking toward steroids, IVIG and/or plasma pheresis.

 

THis is TOTALLY treatable, and the sooner you get a doc on your team, the better.

[Dedee]

Ok, now take a deep breath. You have done a great job so far and you are on your way to getting this under control. You are right to be concerned and you have an appropriate sense of urgency. I do want you to remember that as upsetting as tics are to us parents (and believe me, I have been where you are), your child is probably not as bothered by them at this point as you are. So let's just take a step back and evaluate. She is having difficulty sleeping....that is probably a real issue for her. I imagine she is having anxiety that she can't articulate at her young age. Is she having problems seperating from you? Those are all signs of PANDAS (along with the tics of course). Your priority right now is to get her on long term antibiotics and get an appointment with a PANDAS specialist. You have caught this early.....that's awesome. Your daughter is very lucky to you for a Mother. As the other's have said, most doctor's won't know how to treat this. You are going to have to step outside your comfort zone and start your own fight to get your daughter better. If you go with a PANDAS specialist to begin with you avoid all that. You may have to travel a bit, but believe me it is so worth it.

 

I truly believe your daughter is going to get much better. She is young and you have caught this early. I know it breaks your heart to see her ticing like that. It wasn't in your plan for her life right? It's ok. She is still going to be a wonderful, beautiful person when she is grown. You will see to that. I'm not trying to de-value your feelings. I just want to help you get an appropriate perspective. When my son first got PANDAS he would tic terribly. I used to cry all the time also. Several years later, after all that had cleared, I asked him if he remembered it....He said "yea, I remember it but it wasn't any big deal. I think it just bothered you Mom." So I try to remember that when any of my kids have a flare. I think for the kids, the OCD and anxiety is harder to deal with.

 

Continue to read and learn all you can. You are on the right track. Stick around here and you will gets lots of support and great information. Keep us all updated on your progress. Best wishes.

 

Dedee

Edited August 23, 2012 by Dedee

[taffeelion]

 

Tell us what state you live in- and we can all make suggestions.

 

 

I'm in Durham, NC near Raleigh & Chapel Hill. I would love suggestions of good docs! I'm anticipating that getting longer/different antibiotics is going to be a tough sell to her regular ped.

[dcmom]

There are several moms her from NC, I believe. Hopefully they will chime in. My suggestion would be, if you have the means, make an appt with Dr Latimer in Bethesda. She books out a few months- so I would call now, you could always cancel later. She got my kids through our roughest times.

[taffeelion]

Update,

 

After I wrote this, DD had lots of trouble sleeping. I called the doc and he gave a Clonidine script. I finally used it because she just wouldn't go to sleep! She then got very hyperactive with more tics. I took her to the ER that Sunday because she was walking weird. She said she was 'sad' (never said this before) and her personality turned to a mean, hyper little girl. I was so scared. She walked much better at the ER and they said she was fine - they told us to schedule a neuro appt noting 'personality change' (I guess neuro will see her quicker if this is mentioned). The rest of the day she was hyper, no nap again, but...

 

Sunday night she actually went to sleep with no Clonidine and slept for 11 hours! Monday morning (day 10 of antibiotics) she was 90% back to normal! Minimal tics and acted like herself! I was extatic, but still worried about whether this would happen again and when. I took her to her 3 year doc appt on Tues and had a great appt with her Ped. He kept her on Abx for 6 weeks. So far, so good! She's 95-99% back to normal now. While I continue to be worried about this happening again when she comes off Abx, at least the doc & I know what we will do. Hopefully this won't happen again, or if it does, it won't be worse. Thank you all for helping me out through this.

[taffeelion]

1 year update

 

We're about 1 year off Abx and she's doing great. She still has some very minor vocal & motor tics and there are times when she gets hyper and agitated with new tics, but it's completely manageable! Nothing like what happened last year when overnight she wouldn't sleep, acted manic, and had multiple tics (at 3 years old). It's like I have my baby back and even if it's 95-99% instead of 100%, I'm grateful!

 

Does she have PANDAS?

I don't think I can ever be fully sure, but she was positive for Strep with no other symptoms at the time of the Incident. She started Abx within 10 days and stayed on for 6 -8 weeks. It's possible she has Tourettes and Strep was a coincidence, but the connections and timeline lead me to PANDAS. This is getting so much more research and publicity. Hopefully soon families won't have to suffer so much with the unknowns.

 

I really thank this forum for being a support for me.