ptcgirl

The pandas may also be reacting to the Bartonella. There is definitely a link between Lyme and othe tick borne illness and pandas, IMO. Bartonella can also be passes from a scratch from a cat. What antibiotic is she taking for bartonella?

She is a pro at hiding it, according to her teacher. She occasionally drips her hands on papers because she cannot dry them on a towel. anything...and she cannot bring any homework or books home. Luckily she seems to get it all done in school. We are pretty clueless though, without any notes/menus/permission slips/ etc ever finding their way home to us! Her teacher (who is amazing) says school is likely a "safe" place for her to forget about all of this because she believes no one knows, and teacher feigns ignorance and looks the other way when she is late/in bathroom/ washing/ doing homework during class. She is a Godsend. How lucky you are to have a great teacher like that! It is amazing the difference a person like that can make in a Childs life! If my dd11 had a teacher like that we wouldn't be homeschooling. You are blessed!

I recommend Bouboulis in ct. I believe he is worth the travel, we live in GA. He also will run a Lyme test via igenex to rule it out. He accepts most insurance which to us really helps too. In NC we saw Dr Biddle and he is pandas friendly. He is an md, but also treats naturally. His bedside manner is lacking, but I think he's okay. Might be worth it for you since it would be so close. He doesn't take insurance and is quite pricey. If we didn't have dr bouboulis we would see dr biddle, if that means anything.

I also run into the same problem. I guess he is just really busy. I know some moms can actually get through, but I'm not able. I'm thinking the phone consult too. It is frustrating....

Good for her, though, to be able to get up and go everyday. It must be very difficult for her. She is a strong child When she is at school does she have the same behaviors or is it just at home?

Thanks for sharing your experience. This week we were so close to just dropping all of it. We thought it through, however, and decided to continue with the abc, but cut back on a lot of the supplements that we didn't feel were crucial. We also went to a liquid variety of augmentin since those were the pills that made dd11 feel like she was choking. I am glad we stayed the course. Yesterday was a great day for her. Very little symptoms at all. We have an aptt with dr j in July so we are going to do our very best to stay on the abc until then. Otherwise we don't feel like we have given treatment our best effort. Hopefully more days like yesterday will be coming our way!

Interesting that you mention k12. We were going to do that one or connections academy but our state, Georgia, has just found state run charter schools to be unconstitutional. I'm so upset about it. Hopefully they will figure out a way around it. I just don't know what or when.

My girls go to a public school. It is a montessori program however offered by our school district. It has been a very good environment for them and the school has been very good about working with us to help us with any needs they have had. We have a 504 plan in place. I have been very lucky so far that they have been able to be in fairly good shape at school and fall apart at home. But also this school is flexible so they can arrange their day a little more around their needs (for example dd9 can go to a quiet corner of the room when she is overwhelmed and she wore noise reducing headphones for much of the year when the class got too loud). Susan How nice is that! Your family is so lucky!

Are you supplementing anything for the depression? My son had it quite bad, and I decided to try SAMe. Its been around a month or so and I think it has help some. Maybe enough of the edge to not let it overtake him, you know? I give it with acetyl-l-carnitine. Started with 200mg a day. It doesn't hurt that its a fair detoxer as well. We use advil daily in the morning, and Synergy multiple vitamin has coQ10, ALA, resveterol, quercitin, B12, so covers a lot of bases for mood swings. The contamination OCD is what makes her so miserable. She has tried to explain Lyme to her friends, but I think they (and their parents) still judge her/us. My dd won't share any of it with friends at all. They just think she's avoiding them. She has become very angry with me for sharing ANY information with close family and friends. She feels so different and calls herself a freak. I wonder if there is an online support group for our kids?

Are you supplementing anything for the depression? My son had it quite bad, and I decided to try SAMe. Its been around a month or so and I think it has help some. Maybe enough of the edge to not let it overtake him, you know? I give it with acetyl-l-carnitine. Started with 200mg a day. It doesn't hurt that its a fair detoxer as well. She is on 150mg of zoloft right now. It is suppose to help with the OCD and did before we started the antibiotics. Even at that high of a dose, she has OCD and depression.

I'm just wondering what your school experiences are for your kids. When dd11 started this last episode we pulled her to start homeschooling. I can't imagine her being in school right now. Please share your school experiences and whether or not your kids are public, private, have an IEP, etc. I'm wondering what are best choice should be for next school year.

Such timing for this post, I just had a tearful conversation with my dd11 about this very same thing. She feels like she wants life to end and doesn't see any future. She doesn't want to be around any friends (only has a few left) because they will think she is a freak due to OCD. She believes that she may be going insane. I'm not sure what to do. I'm strongly considering taking her off of everything for a while. I just feel horrible for her. So much negativity. She has been on treatment since early March. We have appt with dr j in ct again in July. I just don't know how much more she can take. She is so depressed. Any advice appreciated.

We didn't have them checked afterwards because she was completely symptom free. For my dd is was immediate and lasted 9 months.

Thanks for posting! Very interesting.

Just my two cents here, when my dd had "just"pandas we had her toncills and adenoids removed. She was 100%back for nine months. No more OCD or tics. No meds. Just normal. Then it all came back when the Lyme and other tbi came into play. For us those nine months were really a wonderful luxury. Dd had pandas for two and a half years prior to the t and a. Her symptoms disappeared immediately. Dr j thinks she had strep in them that couldn't otherwise be eradicated. I'm so hopeful that we can get back to symptom free. At least the nine months gives me hope. I'm really sorry for what you are going through. Our situation is so similar in regards to OCD. My parents came this weekend and dd wouldn't get any where near them. Right now I'm the only one that doesn't seem to contaminate her. I'm fearful that may change too. She acts like she hates everyone else but it is really the OCD. I wish my extended family really understood and didn't take it personally.

My dd has been on it since early march and it has stayed orange for the entirety.

Thank you for sharing this info. Gives me hope for my dd!

Is anyone else's kid on enula? My dd11 is taking it for babesia duncani (dr j is our llmd). I just bought it again from a different company but am wondering if others take this.

My dd11 had the stretch marks rash. Have you checked out the photos on www.drjoneskids.org? There are a lot of pictures. Good luck!

I would say yes, at this point. My dd11 just yesterday told me that she feels better than she has in a long time, even though she herxed for a month. That being said, ironically, last night OCD crept back in on her and she had a rough evening. I still think we are doing the right thing.

I ordered Enula off of Amazon.com last month and received it sealed but from an obvious personal seller (wasn't a business). I'm a little concerned about authenticity of the product. Does anyone have experience purchasing Enula or know where I should (or SHOULDN'T) buy from? The price was much better via amazon than from nutramedix.com, but I'm feeling like I should only order from nutramedix next time. Please give me your opinion and insight. Thanks!

Atarax seems to help my dd sleep better than benadryl. It is a cheap script antihistamine. Night time is always the worse time for her. Hope tonight is good for you!

No, she really didn't have ANY pain before the tindamax, rifampin, and enula. While herxing she had very significant pain in the chest cavity, ankles, legs, head, throat, and wrists. It was weird to me since she is a child with a high threshold fornpain and only cries when she breaks a bone. This herxingpain was far worse than any other pain she's ever experienced, even her tonsillectomy. Again, I am happy that we did it. She is MUCH better right now. Thank God!!

I can relate so much to your situation. In February we were faced with the same thing. We had good reason to believe that our pandas child had Lyme but hadn't visited dr j yet for formal diagnosis. I was so afraid that things would get worse due to herxing. We kept putting off treatment and our appt for this reason. Pandas is bad enough. Didn't think we could handle anything more. But in early March we decided to bite the bullet and see dr j. Dd11 has Lyme with babeisa and bartonella very clearly. Was put on tindamax, enula, and rifampin in addition to augmentin and zithromax which she was already taking. Our worst fears were realized. She herxed and herxed. It made a mild situation back into a living nightmare in the beginning. She was bed ridden, in a lot of pain, tremendous OCD, brain fogged, etc. We persisted and things are better now. OCD is manageable and pain much lessened. It took about a month to start seeing improvement. Those first few weeks were truly awful and I hope that you don't experience it. We didn't detox. Didn't know about it then. I wish we had. The only thing we did was ibuprofen for pain and otherwise she pretty much stayed in bed for a month. We homeschool so at least we didn't have to worry about getting her to school each day. That would have been impossible for her. All of this being said, I'm glad we did it. She IS getting better. I'm hopeful that we can see lasting improvement and get all of this crud out of her body. As a parent it so hard to see our children hurt, but I'm holding on to the possibility that she can regain her childhood and be happy again. Good luck!

My dd11 has taken zoloft for the better part of 4 years. I do believe that it is helpful for her OCD symptoms and anxiety. It seems to make the symptoms worse for the first couple of weeks and then symptoms start getting better. It is worth her taking it at this point IMO. She is on 150mg and weighs 100lbs which is quite a lot. She started out much lower, but wound up on this dose. Her depression has really kicked in. Not if it is a side effect. Wish she didn't have to take anything.