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New to this forum - Need Advice!


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Hi and sorry this is so long!

 

First of all, what a great forum this is! I have already gotten tons of useful information just from reading some of the posts over the last few days. So, I thought I would post our story and see if anyone here had some advice or feedback for us. Here's our backstory:

 

In January of 2009 my dd, 8 at the time, developed a sudden onset case of OCD. But we did not realize it was OCD at the time. My dd has had a history of anxiety and was treated at one time for a phobia. So, one night she woke up in the middle of night with this overwhelming fear of throwing up. Somehow I managed to get her calmed down and back to sleep. From that moment on her general anxiety level reset to a much higher level than we had ever seen. A few days later she had another episode of being terrified of throwing up that went on for some time, but somehow we managed to get her calmed down. By this point I had called the therapist we had worked with to get over her previous phobia. We thought that she had developed another phobia (about throwing up) and was having panic attacks about it. The previous October she had what we thought was the stomach flu where she threw up for a day and then ran a fever for a couple of days but got better. I did not take her to the doctor for it.

 

What we thought were panic attacks continued and grew more frequent and longer. At first they just happened at home and then it started at school. We were confused and scared because nothing worked to help calm her. The therapist, who dd knew and trusted couldn't figure it out either, DD was not responding to therapy at all. On President's Day weekend my younger dd came down with strep throat (diagnosed via a throat culture) and was treated. From that weekend on my older dd was gone. She was obsessed with the thought that she would throw up, then about choking. She developed this breathing thing where she was gulping air all of the time. She could not stop doing it. We thought she was in a constant panic attack and hyperventilating. By the beginning of March she was not eating and sleeping. She wouldn't leave my side and didn't go to school most days. Our pediatrician got us in to see a child psychiatrist who explained that she didn't have panic disorder. She decided to go with a diagnosis of Generalized Anxiety Disorder. However, she acknowledged that there was a strong OCD component to her anxiety and started her on Zoloft and Klonapin. She had an extreme, adverse reaction to the Klonapin. She was completely out of control and unreachable for about 24 hours. It was the worst 24 hours of our lives.

 

I refused to put her on anything other that the Zoloft after that (psychotropic drugs were being recommended). Gradually she started to get better. She continued seeing the therapist (who specialized in treating anxiety) but, frankly, it didn't seem to do anything. She stopped being obsessed with throwing up, but then got stuck on natural disasters (tornadoes). Somehow, by June she was better, but not back to the normal we had known. By now she was on 75 mg of Zoloft.

 

This continued until January of 2010 when she was diagnosed with a case of strep throat by the clinical signs. It is impossible to get a throat culture on her because she freaks out (she has long standing sensory issues). She was put on amoxicillian for 10 days. Her anxiety level started going up again. By now I knew what PANDAS was and was watching for signs as her first episode was so similar to many I have read about. She did not get completely well and still complained of sore throat. Then the breathing behavior started again, but not all of the time, it seemed to come and go. She started worrying about her health obsessively. I took her back to the doctor and brought up PANDAS. Thankfully she did not think I was crazy (my mother had rhuematic, sp?, fever and there is a history of autoimmune illness in our family). She examined her and said her throat still looked like it had strep (she didn't want to draw blood for an ASO titer for fear for making her anxiety worse) and put her on Ceftin for four weeks. She gradually started to improve but anxiety remained high, especially about natural disasters again. In June her psychiatrist put her on 100mg of Zoloft.

 

Last fall was actually pretty good. It was the longest time we had gone with the least amount of anxiety. We started to relax a little. Fast forward to this January (again!!). She comes down with a sore throat and fever. I take her to doctor twice over a three day period. This time the same doctor refuses to put her on antibiotics because her throat doesn't look enough like strep throat (still no way we are getting a throat culture although one nurse is ready to strap her down and get it, I said no to that). She is convinced it is viral infection. She gets better enough to go back to school for a week. Then I pick her up a week ago Friday and she is clearly very sick. Her temp is 103 and she throat is sore with swollen glands. I immediately start dosing her with Motrin. She then wakes up in the middle of the night with a full blown freak out about throwing up and is doing the breathing thing again. I does her with Motrin and she eventually calms down enough to go back to sleep but she is very jumpy. In the morning we went to the doctor and once again no throat culture and throat still doesn't look like classic strep. I suggest an ASO titer. Instead they do a finger prick to run a CBC. They decide her blood work indicates another viral infection. Now I am mad, getting scared, but wondering if I am crazy just imagining that there is a strep connection to her worsening anxiety. We go home and she basically stays on Motrin around the clock for fever. She is very sick and kind of detached, but no other anxiety episodes happen. By Tuesday she is still just as sick and we go back to the doctor. This time the doc is like "oh yeah, we are running an ASO titer". They also do another in house CBC. She comes back and says she still thinks it is viral but will let me know about the titer. We go home and stick with the motrin (with some tylenol, but mostly motrin as it seems to control the fever better). The next morning the doc calls and her ASO TITER IS 2000!!!! I asked her to repeat it, yes it was 2000. They start her on amoxicillian. By Friday afternoon she is still not feeling better, still has a fever, so I call the doc and demand something else (because now i am really, really upset). She then prescribes Omnicef, 300mg, 2x per day for 10 days. Within 24 hours she starts getting better.

 

So, now I do not know what to do. She is still not herself, but no OCD about sickness. She was not sleeping well, complaining about nightmares and very clingy wanting to sleep in bed with me, but five days into the antibiotics that has gotten better. I haven't seen the breathing behavior. I am wondering if the round the clock motrin helped the OCD symptoms until we got on antibiotics. Or maybe not? We are on a wait and see with the antibiotics to see if her symptoms start up again after she finished the 10 day course.

 

Our doc is open to the idea of PANDAS but loathe to prescribe antibiotics because she is afraid of dd developing a resistant strain of strep. DD also sees a psychologist (different from the original therapist who had referred her on) and a psychiatrist whose attitudes when I bring up PANDAS is "well, that's interesting, keep an eye on it". I mentioned to her doc about monitoring the ASO titers, but she said she wants to wait and see.

 

Does anyone have any advice or feedback on our situation? I really would like to talk to a professional who knows and understands PANDAS and either rule it in or out. I should also mention that, in addition to long standing anxiety issues, dd has learning disabilities and ADHD. In addition to Zoloft, 100mg per day, she takes Ritalin LA, 30 mg, per day. It is so hard to sort out what is what. I have come to think about the situation in terms of her having to two types of anxiety, the regular stuff (lots of anxiety about school because of the LD and ADHD) and the "OCD anxiety", which I swear only happens around a strep episode. Additionally, she has tons of allergies and has had her tonsils and adnoids (sp?) removed already (for reasons not related to strep, this all started AFTER that).

 

Thanks for reading this and thanks in advance for any feedback or advice!

 

Jennifer

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Jennifer---I am not a doctor, and I dont' want to say "everything is pandas" but your case sounds about as Pandas-like as it gets, AND you have the ASO that so many doubters want to see. So, as a mom who didn't look hard enough, I would suggest you find a doctor who will treat her. Pandas-specialist, or any doc who will treat. Do not pass GO, do not collect $200. Do not stop....jump on this!

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Jennifer---I am not a doctor, and I dont' want to say "everything is pandas" but your case sounds about as Pandas-like as it gets, AND you have the ASO that so many doubters want to see. So, as a mom who didn't look hard enough, I would suggest you find a doctor who will treat her. Pandas-specialist, or any doc who will treat. Do not pass GO, do not collect $200. Do not stop....jump on this!

 

Thanks eljomom for your feedback. I didn't even get into the fact that my extended family has a long history of problems with strep in my ridiculously long post (with a ton of typos - sorry!). When I try to look at it objectively, it seems so obvious, But so far, non of the highly trained medical and mental health professionals in our life have been supportive or had anything to add. We have tried to do everything we can think of to help our daughter, and we have had to private pay for almost all of it (psychologist, psychiatrist, OT, dyslexia tutors, private school...). Now I am wondering if we have put all of our eggs in the wrong basket. I guess the question now is which doctor and where? Needless to say. out finances are stretched pretty thin. But somehow I have made all of this work and I guess I will keep figuring it out.

 

If anyone knows a good PANDAS doctor is Austin, TX area, I would love to hear about it.

 

Thanks!

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Your dd sounds alot like my son with prior diagnosis of sensory issues, ADHD, allergies, anxiety. In my view, these are the kids more likely to develop PANDAS due to over active immune systems or immune system dysfunction. I too can tell the difference in my ds's regular level of anxiety and the "psychotic" OCD and anxiety outbursts with PANDAS episodes. My ds is now about 100% better after 4 months of full dose antibiotics and now on maintenance dose of 3 times a week prophylaxis. If I were you I would find a PANDAS Dr in your area ASAP (check threads here or pandasnetwork.org). I talked myself out of it with my ds's 1st episode, then 6 months later BAM - worse than the 1st episode, I just new this was not normal anxiety, a mother just knows, checked the titers - elevated, got PANDAS Dr, and like I said, in full recovery now and I'm alot more knowledgable also. Keep going, you're on the right track!

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The air gulping/air hunger symptom is very specific to Babesia. It is also obvious that she has a strep problem due to high titers. She could possibly have both infections plus some additional. I highly recommend locating an LLMD that can help you specifically test for multiple chronic infections.

 

Symptoms of Babesia.... You do not need to have all symptoms listed to have infection and symptoms can be cyclical in nature.

 

night sweats

flushing pressure-like headaches

violent nightmares, vivid dreams

shortness of breath, air hunger

dry cough

neck pain

fatigue

dizziness

trouble thinking

fevers

memory loss

chills

sense of imbalance

encephalopathy

Edited by SF Mom
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I think it is wise to pursue this beyond your local pediatrician. Although the battle to fight this will continue, life for the parents becomes far easier once you add a knowledgeable, supportive doctor to your team. You will still need to be the case manager but you won't need an act of congress to get help at every step of the way. There are Pandas specialists in Florida, Chicago, DC, Northern CA and CT. You can check the "useful threads" at the top of the forum for a list of other doctors who've been helpful. You can also contact ilads.org to get some referrals for LLMDs - lyme-literate MDs - who may be more willing to help you look for infections and use antibiotics and supplements to help you. But most likely, some amount of travel will be involved.

 

I want to mention - some of the things you consider "separate" from Pandas - the learning disabilities, the general anxiety - may be largely or entirely - part of a chronic disease. For years I struggled with trying to accept my son's apparent LDs - only to watch them shed like peeling skin when he started on the right treatment (in our case a combo of Pandas and Bartonella). It's not a straight path to healing - plenty of bumps in the road - but an upward trend that brings your child closer to health than you once let yourself hope for.

 

As you work toward finding the right team of doctors, you may also want to introduce your daughter to Cognitive Behavior therapy (CBT) and Exposure/Response Prevention (ERP) to bring the anxiety and OCD down a notch - at least when she's not at the peak of an episode. You can find many threads on this and lists of books that can be very helpful.

 

Welcome to the forum and keep us posted...

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I agree it sounds a lot like PANDAS, but it definitely is worth talking to a PANDAS expert to say yes or no. Anyone who says, "wait and see" is not someone I would want to be caring for my child. Those Dr.'s mad me wait for over 18 months while she slowly got worse and worse until she couldn't even read anymore. Waiting is NEVER a good idea unless you have an expert telling you to do so and actively watching to see what is happening. Like Dr. K (he treats my DD) has me check in every 4 weeks because we were waiting a few months after she caught Strep again after IVIG. Next step is another IVIG before the summertime and not having her come back into school just to catch it again.

 

 

Don't wait, with all those medications things could get much worse instead of better.

 

Here's a Dr. in your area, a couple hours drive is the closest most anyone can get, I had to go across many states to find a Dr.. So it's pretty lucky this one is so close to you!

Dr. William Zinser

Pediatric Neurologist (ABX, Steroids, IVIG--best w/recent onset, treated a few cases, spinal tap etc done)

Children's Medical Center Dallas TX

 

I don't have his number but just google him I'm sure you can find it.

 

Hang in there!

 

Kristy

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