memom

Nancy, My heart goes out to you and your daughter. I think the most difficult part is that if you are alone in this struggle it makes it that much harder. It is so hard anyway to understand and manage the day to day care when they are in an exacerbation, but to not have someone else to run things past, or to take the load off makes it that much harder. Here's hoping you have good help in your journey, and that we can be an understanding group of support. I'm glad you have Dr. Latimer on your side. Ellie

Hi, If the testing is through Great Northern Labs you could go to the website to read requirements for testing. My daughter did these this winter and what I remember is no mention about menses (just certain foods, antibiotics and steroids and advil). Ellie

My first thought is that it is not a significant difference. If IGM is in the normal range, and IGG elevated, it suggests an old infection. Once IGG elevated, it stays elevated though may ebb and flow. I don't think I would read anything into it but would be interested in hearing if one of the physicians has a different read. Ellie

He has been out of town for a couple of weeks. I imagine he is backed up on getting answers to his emails. It took about 2-3 weeks for me to get an answer recently. He is back in town now. Ellie

Judy, I know you are on your way to the ER. What I really want you to know is that though I have no answers, my thoughts are with you. I can hear your defeat and exaustion. You are still in the thick of worry. Please keep us updated. Ellie

OK, that's a little weird. I couldn't read it all, but what I read does not speak to me. I think working in Ct. within stones throw from NYC, may influence practice. I just want a down to earth physician that is brilliant and compassionate and keeps his/her eyes on the goal. Healing. Ellie

I'm jealous. I have a sneaking thought we may get denied. No immune deficiency. Not an extreme case anymore. Just not at 100%. I would say we are at about 70%normal since tonsils out, steroids for 2 months since November, and antibiotics (have done 4 different prescriptions). I just know that she will never get to normal unless we try IVIG. We have also done a full year of weekly CBT, and SSRI's (very high doses). She is barely going to be graduating from High School, no chances for College given such bad grades since her major flare 2 years ago. I am not sure how she will ever be able to live independently. Ellie

Igg 1-3 normal IGG 4 elevated IGE very elevated No CRP done Immunoglobulin A normal Immunoglobulin M normal Ellie

I wish you well today and for the next several months. Keep us posted. Ellie

Not yet but will do so. Do you mind telling me what insurance you have? Ellie

Sorry you are here. My daughter also got worse after puberty but I am not certain that puberty was the real issue or repetative strep infections. It just was not a magic cure of milder symptoms nor kept her from worsening. Good luck, Ellie

Thank you for sharing your story. Sure sounds like Pandas. What I have come to learn is that this may be a remission and return of symptoms may happen with any significant illness and especially strep. I hope for continued wellbeing. Ellie

I know I am probably being impatient but......what has been the range of time other's have noticed from the time the physician's office (Dr. B. in particular) tries to get precertification for IVIG and the go ahead? I have been waiting for what seems like ages (3+ weeks now) and as each day passes, I am preparing myself for rejection. Any thoughts? Ellie

Nice update. We too are waiting for IVIG with Dr. B. We are in the insurance dance waiting for approval (already has been 3 weeks!). Here's to continued improvement. Ellie memom

Hi Lynn, Love the website. I especially appreciate that other physicians can access it to get good information and help in treating Pandas. I immediately called the psychiatrist that first uttered the word Pandas to us about 1.5 years ago and left a message on her machine about the website. She does not know how to treat Pandas and since my daughters case, has been interested in learning more (I am the only parent in her caseload that had pursued aggressive Pandas treatment, I have been sharing our journey with her so she can help others). I can totally see the additions others on this website have contributed. I can hear their voices in the words I see on the screen. Well done. Ellie memom

Hi Stephanie, My daughter saw improvement with one dose this last time. The first burst, it took several days. Ellie

[i suspect the steroids headed it off with closing the BBB. Just my theory given my dd17 history. I think why my dd17 had such a different case of onset was because she also has asthma and has had steroid bursts throughout her life for the asthma. It had been years since she had one, then a series of strep again with explosion of symptoms at 15yo. I suspect she has been pandas for many year previously but steroid inhalers, steroid bursts occassionally and antibiotics when respiratory viruses showed up. Ellie

I just read this update. I am so glad she was willing to try the burst and hope it gives you a few days of relief. May take up to a week to see the improvement. I hope Dr. T. will get her biaxin restarted again as well. The rages are so hard. We have seen those with DS20. Much better recently. You are both in my thoughts. The setbacks are the most difficult. Ellie

I would have to agree with Buster. Our experience with both my kids was good. DD17 has had two steroid trials, both showed amazing improvement (though temporary) of symptoms. She does not have tics. I think my daughters situation was different in that she was placed on a full month of steroids at very high doses (at her peak, taking 60mg a day) for a taper course of a month. This happened twice, once in October, the second in January. Both times similar results. No long term negatives. Once the meds stopped, any side effects gone. DS20 placed on a 5 day trial by Dr. K., similar results as Buster and EAmom. 5 day course very easy with improvement but not as magic as my daughter on the longer course. I see it as one more tool in helping to establish if the symptoms are autoimmune in nature. Half the the Pandas battle is having confidence in the diagnosis since there is no real test that categorically points to Pandas. I know that it was helpful for me to see with my own eyes that we got improvement in symptoms when everything else we had tried with traditional approaches did not help (NIH guidelines to work through treatment with mental health approaches, failed for a full year). We are waiting for IVIG currently and when her symptoms are flaring she tells me she needs to go back on the steroids. She feels so much better on steroids than she does off. Good luck. Ellie memom

That is very close. Now, need to get insurance companies to go the next step and provide treatment when needed for that code with IVIG. The real problem is coding correctly. It has become a fulltime job in medical offices and to get it right is tough. Coding manuals are 3 inches thick. Imaging seeing patients every 10 minutes, the amount of time it takes to get the coding correct is longer than diagnosing the problem. Crazy. Ellie

Another Pandas parent and I went to her first talk back in September in her hometown library in Kennebunkport Me. Enjoy. She really has the antibiotics only focus though. Hey, it worked for her son. No steroids, no pex, no ivig needed. I wish it had been that easy for most of us. Ellie

Boy do I agree. I have seen this in both my kids. Ellie

Your story sounds like a cross between my 17yo and 20yo. I would in a heartbeat treat this as possible Pandas and move forward trying to treat it as such. If you are right, you will likely start seeing improvement with high doses antibiotics and maybe a steroid burst. I hope you are getting the Cunningham blood work done now as it takes some time to return. In theory you don't need the strep titers if you have documented strep infections in past with onset or exacerbations in symptoms after. I hope you have a local physician who is willing to help you out for prescriptions. Where do you live? Ellie

My dd17 talks about her brain feels swollen. She had never mentioned this until she started getting better. Her eyes cleared, and she said "my brain feels less swollen". When I think about it, her behavior also correlated with this. Her thinking gets muttled, distant look in her eyes, black circles. The swollen feeling is when things are bad. Ellie