memom

Debbie, I had my daughters tonsils cultured a month after a nonresolving group A strep infection (confirmed by quick test). She was 4+Beta hemoyltic group C strep. Her throat was no longer sore but tonsils still swollen and her quick test was negative. I will never know if it has contributed in any way to her illness. Dr Latimer said no one knows if any other types of Beta Hemoyltic Strep cause any Pandas issues. Ellie

DD17 had her T&A mid August. This summer prior to removal was her worst ever after yet again another strep infection. We did not do antibiotics before or after. Tonsils in bad shape (abscessed and chronically inflamed and pitted). Pandas symptoms started improving day 10 after surgery and gradually improved until hitting a wall 8 weeks after surgery when we started month of steroids, and 1000mg Augmentin daily. We have continued to improve though as the steroid is weaned, I may go to Augmentin 1000mg twice daily to keep the momentum up. Her symptoms are better than they have been in over a year or two. She was able to feel her brain clearing daily. She hated the narcotic meds during the recovery, so went over to motrin 800mg 4 times daily about a week into recovery, and I really think it helped a ton. Because that is such a high dose, I couldn't keep her on it long term but was fairly confident she would do well on the steroids (which she has). It was the one best thing we did that helped to give me confidence that we were really dealing with Pandas after so many years of dead ends. To see her improve before my eyes day to day with something so simple as this surgery was validating (as well as getting Cunningham results at the same time). If I were to do it again (which I would in a heartbeat), I would be on antibiotics and probiotics before the surgery and long term full dose after. Her OCD was severe when she had her surgery, her recovery for the first 10 days was brutal. She is also older and it is more difficult the older you are. Ellie

Buster, I don't know what you mean by IM but I will post them here. DD17 pandas severe OCD on Zoloft 250mg (very high dose, started last December and kept increasing dose as it was not getting her OCD under control to final dose of 250mg daily by June). Cunningham test done mid August. Anti-Dopaimie 1 2 hours 2000 Anti-Dopamine 2 2 hours 16000 Anti-Lysoganglioside 2hours 640 Anti-Tubulin 2hours 2000 CamK 156. Hope this helps What are you thinking? Ellie

Nice to hear of your success. It helps to keep us all optimistic. I hope for you and your family continued smooth waters. Ellie

Judy, I remeber how I felt when my 17yo Pandas daughter's CamK score came back in September. Many of the same feelings you so articulately shared. Once I had concrete numbers to validate what I already felt in my heart, I got angry and motivated. It gave me such focus to find a healing path that focused on the real root of her issues that she has had for years. I want to give you hope about the age thing. At 17, there are few on this board in our place. I want you to know that with removing her tonsils (abscessed, repeated worsening throat infections since 14 yo), starting steroids (week 3 now) and augmentin twice daily, she is getting better. We were at rock bottom throughout her Junior year of High School last year (unable to read and write for the first semester!) and now she is almost keeping up with her classes. The recovery in the beginning is painful and slow with setbacks peppered with gloriously clear days (clearer than I even remember). We are not at 100%, but maybe 50% with just 3 months of aggressive anti pandas treatment (after a full hopeless year of Phych and ERP, she was so bad she couldn't even participate in the ERP, her brain wouldn't allow it). I write to give you hope that your son will recover. You may take a year or more once you get aggressive with your focus. We are pulling everything we can find into our toolkit for treatment because we too have wasted so many years. We will consider PEX if we need to. The bad days are hard to deal with when you start seeing good days. Be patient and hopeful. Know that you are not alone. We are all in this together. Find strength in the wisdom of these amazing people on this board. They are a bright beacon on my path. Here's to recovery post puberty! Ellie

I definately considered calling Dr. Latimer, and would have if it continued. Given the sawtoothed nature of the healing, even on the steroids, I am watching anything weird for a full day and reevaluating it the next day before I jump off a cliff. It seems like we have had 3 or 4 crazy bad days since starting the steroids (now on day 19), without pattern, but the next day has always been better again. She even did her homework yesterday without prodding! I will watch for the pattern you noticed. It is interesting that each time she has had a meltdown it has been on a Saturday (we dropped our dose on Thursday). It seemed to take a few days before we started seeing improvement. Ellie

I'm sorry. My daughter's symptoms are gone now. A full day of very painful legs impacting on mobility. I find it interesting that the day of the leg cramps, OCD setback, next day, pain gone, OCD better. This back and forth in healing is weird. How is your daughter today? Ellie

Thanks for the response. Her OCD is really bad today also. I will have to wait and see what happens. I am wondering if it is because she is tapering down. We had a great 1-2 weeks. I wonder how tomorrow will be. Ellie

My dd is in her 3rd week of steroids (now down to 10mg am and 10mg pm day 3) and woke this morning with pretty severe leg pain bilaterally. It was unclear if it was knee joint pain or muscle pain or a combination of both. It is equal in both legs and is spasmotic like muscle cramps and is affecting both legs from the knees down. It was brining her to tears earlier, now seems to have calmed down to a dull roar though is still there. She say's her muscles are also twitching in her calves. She has normal patellar reflexes, no swelling of her knees or ankles. She is limiting her walking, has taken a bath and even advil. Is this at all familiar to anyone? The only new mix for her is the steroids, Augmentin, and methyl-mate (vitamin B-12 drops). Thanks in advance. Ellie

Though I have considered it, have never tried it. Also felt like going for the biggest bang treatments first until we get close to normal made sense. I bet it would help with some of the emotional stuff (someone on this board mentioned osteopathic manipulative therapy helped their child be more calm for the day or two around the treatment). Let us know if you try it. Couldn't hurt. Ellie

Is there a correlation between allergy pills and sleep? I would prefer not having them on this pills, but the sleep sure is nice. Thanks in advance for any advice!!! Elizabeth Elizabeth, Zyrtec makes me sleepy like benedryl and my husband and daughter. I have to say that it may not be a bad thing if taken before bedtime. My daughter's Pandas symptoms are much worse if she is over tired by not enough sleep. Because we haven't had the frequent urination issue I am no expert, but I have heard of other kids on this forum have this as one of their symptoms. Alex's son especially had it as on of the first symptom they noticed. Boy's in particular don't often get UTI's (great anatomy as compared to girls), and if you have had him checked during a previous episode and was negative, I would blame it on Pandas. If you have a nagging worry, get him tested, easy to do. Ellie

DeAnn, Welcome. I wanted you to know my daughter is even older than your son (17) and though her presentation may not be quite as frightening, she has gone undiagnosed for much longer. I haven't yet done IVIG but have had dramatic improvement with ridding her system of strep (it was her tonsils that we took out that were abscessed), and now antibiotics and steroids. We aren't yet to 100%, but know with all my heart we are on the right track with responses we never saw with CBT/ERP and SSRI's. Once you start seeing his personality changing as the OCD abates, it will fill your heart with hope. Expect 2 steps forward, 1.5 steps back in the recovery. The setback days are difficult to ride through if you don't have the hope and belief you are on the right track for true treatment. I know others will say this, please consider starting full strength. long term antibiotics before IVIG and after to make sure he has no hidden strep that would lessen the long term benefits of the IVIG. Please keep us updated, we all hang on the journey of others while our kids are sick. Ellie

In theory, yes. Both bacterial and viral, one of the reasons you don't stay on for long periods of time. In short bursts, less so.

My daughter has an echo scheduled next month per Dr Latimer's suggestion. She is 17 with Pandas and my uncle died at 16yo of rheumatic heart (preantibiotic times). I'm thinking because of the family hx she thought we should cover our bases.

Glad to hear you are all well and past it. We are still agonizing over whether or not to get the shot for dd. I am pretty certain my 20yo son had it about 3 weeks ago. He's in college and all his friends had flu-like symptoms. He had classic symptoms but no one else in the household got it (he quarenteened himself in his room).

Wow. How hard. Thanks for sharing such difficult experiences. It sounds like in addition to being heartbreaking and stressful for you (as well as dangerous), but must be no picnic for her either. I hope these keep getting better with the IVIG you did. My thoughts are with you. Makes even my worst day seem like a walk in the park.

Erica, In our case, absolutely. Mild symptoms not interfering with functioning (quirky behaviors) that we thought she'd outgrow for years. Those behaviors in hindsight were mainly OCD behaviors (but she kept their existance basically to herself). Starting 2-3 years ago with a series of repeated strep infections (treated with Antibiotics for 10 days each time), her baseline dysfunction was rising, with extreme symptoms interfering with her ability to learn, read, write, cognitive reasoning etc (Junior year in High School). She essentially lost last year. If I were to know then what I know now (had no idea it was Pandas or what Pandas was for that matter), I would have aggressively treated to get her back to a normal baseline in hopes of maximizing her learning ability and brain function. We have lost many years of her high school with decreased cognitive functioning.

She says her brain wont let her stop and "mommy, PLEASE make this go away!!!!!!!"-- How heartbreaking. My daughter is 17 and can relate to that statement. We are almost done with week 2 of a 5.5 week taper dose. She to has Pandas, OCD (severe) with chorea (mild) being her primary symptoms. She is also on Augmentin 1000mg daily. The combination has helped already. No side effects yet. There have been some other side benefits. Her sinuses are clear as a bell (first time in a long time!) her breathing great, and her eczema is gone! Her thinking is clearer, focus better, OCD not gone but minimal repetitions and able to start using the tools she has learned with CBT over the past year. The shear volume of the OCD thoughts is much diminished. I haven't seen her this good in more years than I can count (probably 5 or 6). I am almost scared to start the taper as we have just started seeing the benefits (first 4-6 days seemed worse in some ways). My daughter shared as she has been getting better that when she is in a bad Pandas time, she can't not do what her brain is telling her, no matter how crazy it seems. Sammy on saving sammy mentioned the same thing on the Matt Lauer interview. Let her know that it is because her brain is swollen and you are trying to fix it. That may help her to understand. My daughter at 120lbs is on 50mg a day for 14d (30AM, 20PM), then will go to 20daily, then 10daily then 10 every other day. 5mg a day seems low to me to despite the size of your daughter. Good luck. Hang in there. Ellie

Hey Alex, Morgan has also fit that picture. Pale with dark circles worse with Pandas worse, but also with allergies. Much improvement this month with improving symptoms. She no longer has to wear foundation to cover the dark circles before going out the door to school. The more fatigued she was with Pandas, the worse her OCD, the more distant she looked, poor eye contact, distracted, unable to concentrate and use her brain effectively, fatigued, dark circles and pale. I am so sorry you guys are still struggling. Maybe time for full strength antibiotics daily, long term, not profylactic doses. Ellie

Thanks Stephanie. He and his sister have appointments next week with someone who does this work. If nothing else, it should help with asthma, allergies, chronic sinusitis. That in and of itself should be a good thing. I am both excited and frightened about what will need to change in my kitchen......

That was great. Thanks.

I can hear your distress loud and clear. One of the things I have noticed with all of us on this board is the frustration, disappointment and despiration to help our kids get well. I also can imagine the sense of loss and frustration you must feel when you have someone you trust who has helped you along your path, leave(almost a sense of abandonment). Take a deep breath. Stay with what you know today. You have a script for abx till June, why fret about the what if's of possible resistance. You are not alone.

We spoke with the Psychologist he has seen in the past today and will ask him to evaluate him for possible ADD.

Not yet. He also has bad environmental allergies, asthma and has been diagnosed with exercise induced anaphylaxis (not exercise induced asthma, had 2 full blown anapylactic reactions to vigerous competative running events landing him in the ER. Has to premedicate for vigerous exercise). His sister has an appointment for next week to address the food connection, I think I will address having him tested as well).

I think I should Cunningham him too. I will email Kathy for the kit. I have not cultured him but could do that myself. I think I will consider skipping the ASO and Antidnase as those are such poor indicators.