Suzan

Interesting, my dd9 had to stop augmentin after 1-2 days because she had trouble breathing and became so confused she could hardly get out of bed. She would look at me blankly and just say "I can't breathe". I'll be sure to bring up with the lyme doc whenever we finally get there. Slowly working our way towards it. Susan

Wow, I will watch for his improvement with much interest! We are slowly working our way towards our lyme evaulation for dd9. Igenex blood draw next week and then preparing all the paperwork our ilads doc will need. I sincerely hope this will help your son's pain! Susan

After almost 1 week with increase of abx from 250 mgs of zith 3 times a week to daily, no more talk of black widows or snakes or of being fat. But she is overly concerned about whether I spend any money and will avoid even grocery shopping if she can talk me out of it so we don't spend anything. She has birthday money and she's crying that she's waiting for the perfect thing (she'll probably not spend it for a long time). Tonight, both girls have tummyaches and sore throats and don't feel well in ways that are not the usual. There are stories of kids throwing up at school. I'm worried about what the weekend holds. I'm worried about the winter months. Susan

Hi, I just found out our chiropractor can order labs. He's going to sign our Igenex lab work and then we go to labcorp to get the draw. He said we could go to him for any other testing requests. He's very worried about dd9 and wishes he could help more. Susan

I don't know, that is an interesting thought! I hope so!

Looks like the paperwork says it requires authorization by a doctor. Is that true? I didn't know that and don't know if our local docs will sign. If I just ask them do you think they will just because? I wonder if our chiropractor can do it. I know he would if it's OK. Susan

I just thought I would let you all know I tested my girls for IgG reactions to foods. I got the results back today. I already knew they had high IgG reaction to wheat and wheat gluten. In addition, dd9 - High on Flax and every kind of dairy including casein except Moderate on Goats Cheese. Also Moderate on Wheat and Wheat Gluten and Yeast (I assume that is Moderate since she's not eating much of it). dd7 - High on most dairy including casein. Also high on Cashews & Flax. Moderate on Lemon, Goats Milk Cheese, Whey and Pistachios. So Dairy is going to be out again. We did it before so I know we can do it again but I hate being gluten and casein free. dd7 loves cashews and pistachios. They are the only nuts she will eat right now. They took it pretty well at this point. We'll see once we get all the dairy out of the house. My goal in this testing was to try to remove as many immune triggers as I could. I am moving forward with lyme testing for dd9. Hopefully will get Igenex test and to see our closest ilad doc within a month. Susan

I think this is great because we went to OT for 2 years and if our OT had known about PANDAS she may have recognizied it. I would love OT's to have questions about strep or other illnesses in their initial evaluation questionaire. I will PM you to see if any of our stories may help. Susan

I've never heard of that either. She can get her thumb pretty close to her arm but can't touch it and also she seems very inflexible in most other ways. I'm making a list though to discuss with our doctors so I appreciate any thoughts! susan

No RF that I am aware of. I have had her evaluated for it though twice but so far they say no.

Crap. My dd7 has been doing so well but it's back. Tonight, out of the blue, she said "Can black widows live inside the house? And do you think snakes can get inside?" She always talks about black widows and snakes when her pandas starts up. Earlier today she asked me if I thought she was fat because she thought she was. She's super skinny and her OCD usually presents in food restriction and food hoarding. She's been worried that she's spoiled and worrying about what I eat. I'm increasing her zithromax today. Calling the ped. neuro on Monday. I don't know what he will decide to do. Her sister is getting IVIG's. Doc's just been watching dd7 so far. The only good sign today is that she ate my homemade soup. Normally she won't eat soup since the food is all mixed up together and includes veggies. Susan

Thanks everyone, I think I have some direction now so I really appreciate your thoughts. Meg's Mom, you reminded me that we have had her ANA level tested which did come back normal. Worried Dad, your son's symptoms really do sound similar to my dd's but my dd has been checked for RF and they say she does not have it. I was worried about RF a lot but I keep hearing NO. Reactive Arthritis, I have not heard of this, I can google it but anything you can tell me? Also, both my girls have documented gluten intolerance and possible, but non-confirmed celiac. I am searching to see if this can be caused by celiac as well. We are gluten free but maybe there is enough hidden gluten to be causing issues if celiac is an issue. I can't put them back on gluten to try to get positvie tests so I don't know what to do there. I'll look at Reactivfe Arthritis more, check the celiac symptoms and talk to our doctors more about this and try to be more careful about any hidden gluten and look into lyme. I feel like we are strep free by now but who knows if any is lurking. Susan

dd9 is my dd who gets roving pain, burning pain, bodyaches and has had 2 instances where she could not walk for a week and then gets mysteriously better. Day before yesterday she was taking out a rubber band from her doll's hair and said it felt like something moved or popped in her forearm and it started hurting badly. We put ice on it and the next morning it hurt badly and was swollen. It's still swollen and hurting although doing better at various times of the day. I imagine a trip to the doctor is needed if it's not getting better by tomorrow but I don't see our regular doctor doing anything more than ice and rest. I'm interested in hearing if anyone has any thoughts about this that aren't lyme related. I already know I need to get dd9 evaluated for lyme but I want to have all the info I can about what else might be causing this since our local doc won't do anything about the lyme. She's had her RA markers done and the tests for inflammation (ESR, CRP) in the past, all normal. HHV6 was the only thing that has come back elevated and she was on antivirals for that for 6 months. Has anyone heard of anything like this happening with your pandas kids or any kid that rings a bell? Her movement was not anything that would hurt a normal 9 yr old. It is about 2 inches above her wrist on the inner side like in a line up from her thumb. Overall her pain has been much better. What else should I test for? Could it all be just from PANDAS? Is Lyme the only other possibility for us to persue? Even our chiropractor is worried now because stuff like this just happens too often. Susan

Ours started today! Mine, 2nd and 4th grades. They had a great day. dd7 was OCD about what she wore today, asked me over and over what she should wear (they wear uniforms) and changed her clothes 3 times but finally decided on something. They both hopped on the bus with no trouble even though it was 20 min late and my car was broken down and would not run at the bus stop, LOL, talk about chaos! dd9 was sick to her stomach but she did it. Except for dd7 getting in trouble for talking (she can't control her mouth at school), they both had a really good day. dd9 has injured her arm, some sort of tendonitis inflammatory thing I'm sure is pandas or autoimmune related so I'm worried about tomorrow. But so far, so good! dd9's new teacher has a quiet place where you can go when you are overwhelmed during the day and take your shoes off and lie down. How cool is that?! She is very excited about that. Thanks for asking! How was your first day? Susan

I have not seen an improvement yet. I hear it can take a year before you notice anything and it's been about 4-5 months for us I think. So I am just hoping we can get through this year with allergy shots and notice an improvement in the spring which will be almost a year. An unknown, maybe she'd be doing better after her IVIG's if we weren't doing allergy shots? I don't know but I don't see any negative effects that I can attribute to the shots. I do believe that each child is different so it will be an unknown whether they can do them without increasing symptoms. She tends to be a low responder to immune testing so maybe it's different for her than those who have overactive immune systems? My dd does get much worse in the spring too. That has always been when she is at her worst. Susan

I will be interested in hearing what Dr. B says about it. I have been giving my dd allergy shots since June and she has been managing them fine so far. She still has pandas flairs but I have not seen the allergy shots making things worse. Susan

We've tested for lots of things but I don't think that. I just read up a little on immune complexes but I don't quite get it. Do you have anything for me to read up on that is pretty easy to understand that shows what that is all about? I'm guessing a trip back to our immunologist may be in order but our neurologist is doing a lot of immune testing and is geting ready to concentrate on PANDAS/PITANDS cases. Maybe this is something he would be interested in looking into. Susan

I'm sorry, I may have missed your other posts about your son's limping. Can you tell me about it? My dd9 has had a lot of trouble with leg pain and has had times where she could not walk for 1+ weeks. All testing by orthopedic doc's said nothing was wrong. Dr. T. said he has seen this type of thing before as a result of strep. Since she's been on daily antiboitics, it's only happened again 1 time, but she still has frequent pain. I have not tested her for lyme yet with Igenex (regular lab testing came back negative). I don't feel like it is lyme but still want to check out igenex just in case. No Mycoplasma but she did have positive HHV6 herpies titers. Treatment with antivirals seemed to help a little. With her IVIG's, she will have leg pain after for a few days and then it gets better. But in the evenings when she's at her worst, her pain will resurface. HUGS! Susan

I think it is worth it, for us anyway it's been great. If you think of the staples you can still eat, provided he's not allergic to any of them, it may not sound so daunting. Rice, Potatoes, corn, meat, dairy, veggies, fruit, plus lots of other grains. Find a GF cereal (most chex is GF now), see if he likes Annies GF Mac and Cheese, for chips be sure ot check the ingredients, some of the flavored ones have gluten/wheat. It's not as easy to just pick up quick snacks and you often have to bring your own food or snacks along just in case. I make Betty Crocker cake or cookies for them for each birthday party they go to and send snacks to school to keep for when they have food brought in for parties, etc. I buy too many GF wheat substitute products but I know you can cut those out and do it for much more cheaply. And mainstream brands are getting GF stuff that is cheaper (Hamburger Helper has one now with hashbrowns instead of pasta). Not sure how much you cook. I don't cook as much as I would like to and get a lot of easy stuff. I'd like to do more but it's not happening right now. Susan

A little update, she's still having me check the weather, but she's much more calm about the rain and thunderstorms! She told me today she's starting to feel better and is not as freaked. Maybe her IVIG is kicking in? Maybe working through her fears and going to camp anyway instead of staying home helped her to see that she can do it and be OK. Maybe a combination of both. I hope so. I guess I just wait and see how it goes. Susan

She went! She found out that the canoeing would happen in the morning and the afternoon she'd be in the skating rink. I had given her advil and L-Theanine and I think that helped calm her. I am so proud of her, and so happy that it was not a bad situation. I don't know what would have happened if it had been a stormy morning. I better keep working with her on that since it's bound to happen. Susan

Thanks Meg! We do have WTDIYBGS, have not gotten all the way through it but I had sort of forgotten about it. She really liked getting those skills but rarely puts them into play. I need to work with her more on it. I talked to her about it this morning, got her to laugh a little at OCD, told her about Meg so she'd know she's not alone. Luckily the weather is not looking as bad as yesterday said it would be. She's still asking if hse has to go but I think she will go, but it will be tough this morning. I'm resistant to go to a specialist since the one I did see didn't think he could help us. But her OCD at that time was not bad and he was overwhelmed by just learning about pandas from me I think. Anyway, right now we are overwhelmed with my physical therapy appts, allergy shot appts, school starting, crazy work, I don't have enough time in the day to schedule everything. I will seriously consider it though once all my appts die down. Susan

You said a lot of good things, thank you, although this quote struck a cord since this came upon me suddenly, I agree, it seems like too much. I've known about her fear of weather for a while now but it has not been to this extreme so I feel unprepared. I hope this is part of her healing process with the IVIG but I guess it's hard ot know. I will talk with the leader tomorrow to see if there is another option. My hope, oddly enough, is that it is raining so badly that they have to stay at the center. I know she will be OK if they can't go anywhere. I think anyway, they had a tornado scare a few weeks ago, that is probably what is fueling this and they had to go into the bathrooms for safety. It is common talk between my girls lately about where the ditches are as we are driving around town where we would run to if a tornado were to come our way. laurenjohnsonsmom, it is comforting to know we are not alone with the weather fears. With it being so unpredictable, it is hard to set expectations. She likes routine so I'm sure this is why it is so difficult for her. She gets very angry at the poor weather man when weather is predicted incorrectly. Susan

That is so awesome! I am getting teary eye'd just imagining him talking about how he will never forget this day! Thanks for sharing this good news. We need it! Susan

So I've been pretty lucky so far in that I have not had any instance where I could not get my kids out of the house and to where we need to go. Tomorrow may be another story. dd9 is terrified of weather right now and tomorrow there will be 50% chance of scattered thunderstorms. She wants to rush home if the sun goes behind a cloud or if it's a little dark outside. She's in trip camp so they have a field trip every day. Tomorrow they are scheduled to go canoeing. They say they won't go if it's dark and scheduled to rain and they will find something else to do. dd9 is saying, "what if there is a tornado? what if, what if we are stuck somewhere and can't get to shelter, what if.....". I don't have answers for her becuase stuff like that happens. The camp is dedicated to ensuring they are safe. I've gone over all this with her but she's working herself up into hysteria. She says she refuses to go tomorrow. She's all PANDAS'Y and crying and hurting and is showing all her pandas body language. I am hoping that she will feel better in the morning, but what if she refuses to go? I work and can't leave her home alone (not that she would agree to that anyway). Not sure what I should do here. I am not positive they will treat her like I want her to be treated if she becomes out of control with fear over the weather. But I don't want to start a precidence of keeping her with me if she's scared and I can't really do that with work anyway. For those who have had trouble with anything like this, do you have any thoughts? We are 4 days post IVIG today. I am seeing improvement but this weather fear has gotten worse. Susan