New Here, Hello!

[DeterminedMomVA]

Hi,

 

I'm glad to find this community and I've been avidly reading old posts. I have a 10yo ds, E, who has been having lots of psychological problems (mainly emotional lability, anxiety, school refusal and rages/irritability) for a few months now. He had no problems before that, except for a one-month period in january 2011 (which I recently discovered started 10 days after a strep throat infection). He began seeing a pyschologist in September and a psychiatrist in October, who diagnosed him with a mood disorder, probably bipolar....he was goeing into 'mission mode' sometimes and can't be dissuaded from whatever his obsession of the moment is, although the obsession usually switches after a day or two. The psychologist says that he thinks that is the manic part of bipolar. We tried Zoloft for a month, but he started having tics a month after starting Zoloft. We then tried Abilify, but the tics increased, so the Psych stopped all psych meds. The meds helped some, but not as much as one might expect. After being referred to a neurologist for the tics I requested his medical records and discovered an association between strep infections and the symptoms. When I showed the neurologist the medical records, he went and got Singer's book and started waving it book around, saying Singer can't verify that PANDAS exists (funnily enough, I hadn't even mentioned the word PANDAS at that point.)

We have an appt. with Dr. L in April. Based on a request by Dr. L's appointment scheduler, I had dug up samples of E's handwriting, and the deterioration in fine motor skills in January 2011 is really striking. I made a spur-of-the moment phone call to Dr. B after the neurologist pissed me off, who had had a cancellation and got us in with only a week's wait. He diagnosed E with PANDAS and a sinus infection, and started him on Augmentin and 25 mg of predinosone, tapering off over 3 weeks. We're 12 days into the treatment, and the difference in E is simply amazing. He is finally happy again, tics are way down, 'mission mode' is completely gone, and he's less irritable and better able to control his temper when he gets angry. I'm dreading ending the prednisone, and hoping that the Augmentin is also contributing to his striking improvement.

We're lucky that we seem to have a supportive psychiatrist. When we showed him the medical records last week, he said "we all believe in PANDAS, we just don't know what to do about it". He said that PANDAS was a definite possibility, and is keeping E off all psych medications while we see how effective the Augmentin/prednisone treatment is. He also urged us to get in to see Swedo, but I don't think we'll be able to do that. E clearly doesn't qualify for the clinical trial due to medications and because his symptoms aren't severe enough. After showing the psychologist the records and the handwriting samples, he's also on board with the possibility that this is PANDAS.

 

Anyway, we're in the DC Metro area (Northern Va) and would love to communicate with others in this area who are dealing with this same disease. This forum has been really great in helping me gather information, so thank you all, and now we begin the journey to try to help my son. I feel as though I've been watching a tragedy unfold in front of me, and now I finally have hope that we may be able to find a deal with this terrible disease, which has been making E and all of us absolutely miserable.

[dcmom]

Welcome Virginia mom. Sorry you are here

 

While my name is DC Mom, I moved from DC to NJ last year- so am no longer in your area, but I can tell you there are lots of wonderful, supportive moms in the DC metro area- I urge you to join their support group.

 

I also urge you to keep your appt with Dr Latimer, if possible. She saw us through some really hard times. She is not perfect- but she is extremely compassionate, and will be by your side until your son is well. We found it VERY easy to work with her, especially living in her area. Until my kids were stable, we saw her monthly- which was wonderful.

 

Sounds like you are on the right path!

[patric]

Welcome! It sounds like you are on the right track and that is good news that the abx and steroids are working. I can relate to your post. Aside from the tics, mild OCD, separation anxiety and rage, with my son, the thing that bothered me the most was that he lost his sunny disposition and sweet good nature. However , one year later after treatment, he is back!! He is almost 90 percent symptom free! And really he only shows mild symptoms after an illness. So there is lots of hope! Hang in there.

[nicklemama]

Welcome! Looks like you are well on your way w/ PANDAS. Gotta love the bipolar dx. Nothing like a child w/ sudden bipolar. I can laugh now, but I wasn't laughing when I was told that was part of my DS's problem. That and sudden Aspergers. The good news is you've seen one of the best and the treatment has begun.

[DeterminedMomVA]

Thanks for the welcome and the PM's. Just wanted to update. E took his last prednisone on Saturday (5 mg). He was doing very well...a few rages, but generally less irritable, less hyper-focused, and feeling happier, and the tics were 90% gone.

 

Unfortunately the improvement we saw on prednisone is starting to wane, even though he's still on Augmentin. More irritable, less able to accept 'no' for an answer, more anxious about everything, nightmares, more manic/silly behaviors again, and the tics are increasing in frequency and severity. I guess it's yet more confirmation that he has PANDAS, but it's still a bummer, although it was nice to have a few improved weeks.

 

We have our first appt. with Dr. L on April 10, then one with Dr. B on April 22 (our second with him). E sees the psychiatrist at the end of March. I'm not sure whether to let him put E on an SSRI or not. Zoloft took 2-3 weeks to kick in back in October, and reduced the depression/anxiety a little bit, but may have started or exacerbated the tics. Any advice on where to go from here? Should we just hold tight until we see Dr. L or Dr. B, or try to be more aggressive than that? Thanks for any words of wisdom you can all share.

[rowingmom]

Please check out these posts on the Lyme forum about reactions or lack thereof to steroid treatment:

 

http://www.latitudes.org/forums/index.php?showtopic=16393

 

My DD10 had all of your son's symptoms, was Dx with PANDAS/Aspergers, had high levels of rage and frustration, had the typical decline in handwriting ability (she even forgot how to hold a pencil - I had to go to Youtube to find a video describing pencil grasp before we could relearn it.) I never did follow up on the PANDAS Dx as it is not treated in Ontario, and headed south of the border to an LLMD. DD10 tested positive for bartonella and indeterminate for lyme. She is being treated for both, and we have seen great improvements.

Edited March 15, 2012 by rowingmom

[fightingmom]

Hi Determined, I have yet to post my own formal introduction, yet, I felt compelled to respond to you. We too have just seen Dr. B and started steroids and antibiotics. We also had been almost 2 years deep into a sea of psychologists, psychiatrists, social workers, even a stay in the children's psych hospital. Been through the ringer and back. Our children seem to share a lot of the same symptoms. Literally, you could have been writing about my son -- even down to the obsessions for just a few days -- that just diminish as quickly as they appear. We have had a different opinion from every doctor we have encountered. Bipolar, generalized anxiety disorder, ODD, ADHD -- you name it. We even tried Abilify and Celexa without success (actually Celexa made my son psychotic and led to his hospitalization).

 

I wish we lived closer to another to offer some support during this - we seem to be starting the journey to correct diagnosis and treatment at the exact same time. We are 2 days on steroids and 4 days on abx (as my son was already prescribed abx by local doc for 2nd time in 4 weeks for sinus infections dx by xray). I'm astounded by the progress he's made in just 4 days. This isn't my thread, so I'll talk about this somewhere else, but I just wanted to say -- I think we are on the same road, at the exact same moment, and even with the same doc.

 

I'm so thankful to have found this forum. Seems to be a truly amazing and determined group of folks.