Suzan

Hi, I don't have a husband but I do know what it's like to second guess yourself as it sounds like his non-belief is making you do. I think this is normal in all of this, the self doubt. But I know you are a great Mom and are doing all you can to help your son. The thing I don't really understand with your dh's attitdue about it is that a tic is not accepted as normal and a child with a tic and anxiety and a therapist is a red flag for sure (I'm not sure if he sees the OCD, does he?). It just goes against my inner nature which is to find the answer to why. Anyway, I'm no help but wanted to say I'm sorry you are going through this and feeling so alone. I totally know what that feels like! Susan

Has anyone had this trouble with side effects from the zithromax? My dd8 has been getting nose bleeds. They are not gushers but I do see them start to drip from her nostril and she will have blood when she blows her nose. It is much more than you would normally see with dry, winter sinus problems. She has never had this issue before. She is having mucus from her cold or allergies but today a really big clump came out which was covered with blood. She is also on valtrex. Both valtrex and zithromax show as unusual bleeding as a side effect. I will be calling the doc tomorrow to see what they suggest. I can stop the valtrex but I would hate to stop the zith unless we were going to try another antibiotic (although I'm scared to make any change). Susan

Both my girls had strep the first time under the age of 2. One at 16 months old and the other was around 12 months old. They don't get typical signs of strep either. I know I believed infants did not get strep but now I know that is not true! SUsan

My daughters symptoms always get worse with any virus or infection, not just strep. Usually she will get more defiant, more facial grimacing and more emotional. Right now she is fighting something and I have seen an increase of symptoms. Is your son on any antibiotics long term? Susan

These may not be too clever (no punch here....YET!) but how about.... Neuropsychiatric Autoimmune Disorder caused by Streptococcus NADS Neuropsychiatric Streptococcal Immunopathy NSI Neuropsychiatric Streptococcal Autoimmune Disorder NSAD Susan

Did you try it last night? If so, did you notice a difference? Susan

We love melatonin at our house. 2.5 mg sublingual peppermint flavor is what we use. I use that dose for all of us, even me so I would think it would be right for your son. Our doc says I can give up to 5 mg if I needed to but I never do. I have taken 5 mg before (I'm 5'4" but weigh quite a bit more than him!). We have never had any negative side effects. It helps them fall asleep but not stay asleep. There is a time released one that I know some people use that I think is helpful for staying asleep. Susan

Hi, this is your NON pandas child you say? He just sounds like my pandas dd with the joint pain and stomach aches and improvement on zith. Have you had him tested for Celiac or gluten intolerance? So glad to hear he is doing better. Is he on the antibotics for a possible but unknown infection? Could his pain be related to the strep? Susan

LOL, yes this sounds like a difficult one! It reminded me I was wanting a strep sniffing dog. Now you need a bed bug sniffing dog Seriously though, I don't know much about bed bugs, but can you encase the mattresses in the allergen casing used for dust mites and treat the carpet and wash the bedding? It seems like it would be that "easy" but who knows!! Please don't let me find out first hand. We are currently dealing with fleas that I can't find anywhere in the house but on the dog. They don't bite us but I know they are in the house because the dog is at times covered in fleas dispite the fact that we treat her monthly so I've been washing, vacuuming and treating the whole house for a month! Susan

I can attest to all you have said, the appt was personal, confidential and accommodating! Thank you Dr. T for all you did for us to get up there to see you. I am very glad to have you as a dr. for my girls. Susan

We had our blood draws today and they went pretty well. DD8 - I gave her 200 mg L-Theanine before we got there and she was pretty calm. I also gave her 2.5 mg melatonin before we went in and she was really relaxed. I kept her really warm and hydrated and her blood flowed. It was the best experience she's had in months. DD7 - She only had the melatonin before and she cried and cried and hollered that she was scared but we got the blood and it all ended up OK. Next time, I plan on trying the L-Theanine. Susan

Will you remind me, has she been tested for strep? It really sounds like my dd's pain. I swear I did not believe her for years that it hurt it was just too crazy. Shoot I can't wait for you to go see Dr. T! Would your local doc do a trial of antibiotics for her even if the strep test came back negative? If not, maybe Dr. T would. From what you have been saying, it seems to me like a trial would benefit you guys. Susan

Interesting, kind of like an aura found with some seizures but he could stop it from happening at times.... Susan

Thanks Susan, I am going to ask Dr. T about my dd when I take my son to see him in a couple of weeks. I have a bad feeling that by time I am done I will be paying for a visit for 2 kids instead of 1. I know you are worried but I am glad you are asking the questions now. I know he can give you some insight into your dd. It was hard for me to realize how often I had ignored and blown off my dd's pain but you just never think that a kid would have pain like that. I hope it turns out to be a phase or growin pains, etc. But I do see why your ears are perking up about this. Susan

My kids always did better at school or other peoples houses but they would fall apart at home. This was always hard to understand. My dd8 had lots of pain. She had what I called growing pains, joint pain, unexplained pain. The scene you describe is VERY similar to what I've seen here over and over. Sometimes the pain is quick to leave and there have been other times where she could not walk for a week. I never believed her until probably a year ago. I thought she was being overly dramatic. Now I know it's her PANDAS. She has leg pain, ankle and foot pain, stomach ache, headache, hand and finger pain, back pain, over all feeling bad and not well. It has almost all gone away with antiboitic treatment. Now, when her pain comes back, I can see it in her eyes too. Her pupils will get real big while she is in pain and then the pain passes and her eyes go back to normal. I can see how her behavior changing when DH is not around would be very confusing. I am single so I don't have anything to compare that to except that she was always better when other people were around than when she was with just me. Dr. T just told me about how strep can cause pain and it is the explination of her episodes of when she could not walk, even though we don't believe she has rheumatic fever. Susan

The trouble we have is that dd's blood stops flowing in the middle of the draw so it ends up being a huge ordeal. So far, I've found nothing that helps with that. They say stay super hydrated and warm. Regarding the panic, yelling, kicking.... I bribe them with ice cream. It helps a little but not a lot. I have dd7 go first since dd8's draw is the worst. When we get out of there, we go get ice cream no matter how bad the draw was. I don't say be calm or no ice cream. It's basically keep the prize in mind and let's get through this as calmly as possible. Hugs and good luck. Susan

I am glad Dr. T was good for you guys. I hope the new abx help. I am sorry you are having such a hard time right now. Susan

They look big to me and very similar to my kids. It's hard to say in a picture not knowing how bright or dark the room is, but if they are always big like that, I'd say it's related. I know you will be checking out everyone's eyes from now on. I know I do! And yes, his eyes are beautiful!! Susan

LOL! This is my dd8!! You will be talking to her and she falls out of her chair! She prefers to eat standing up or walking around (or sitting on the floor in front of the TV). Susan

When my kids were younger, like 2-4, I reacted to all their behavor issues as sensory issues and stopped any time outs or regular parental reactions and started with redirection or sensory activities. It worked wonders! If there was a tantrum, I had them jumping around or exercising or wrapping them uptight or doing art projects. Now that they are older (7 and 8), they look at me like I'm a nut if I say "OK, everybody start marching! Now Jump 5 times!". Boy I long for those days. I guess I need to get smarter and figure out what the 3rd grade equalivant woiuld be. We co-slept for years too so I could get some sleep, otherwise we were up all night for one reason or another. Never NT but anxiety, bedwetting, etc. Regular dicipline does not work when they are not well. I have no good answers for you on that one. In a way you are lucky you have a place to go where he won't follow you. I have had to sit with my back against my door blocking their enterance into my room just to have a moment to myself but there they are on the other side crying and begging me to come out. But I don't have a Dh to help out either. Regarding your coping skills, you can only do what you can do. If smoking was not so far behind me, I'd be right there with you. Instead I grab the bottle of wine, if I have any in the house. I find I can't keep it around all the time or otherwise, as soon as the kids are in bed, I'm running for a few glasses to even me out! Big Hugs! Susan

I agree about the reaction, even with the flash and the allergy look. Have you had allergy testing or using allergy meds at this point? You have me obsessed (OK, I should not use that word for myself!) tonight with my dd's eyes but I can't get a good example of the two of them. But, dd8 was not feeling well tonight. She was angry and moody and irritated and her eyes were dialiated more than dd7. I took this picture with no flash. The thing that amazes me is that they can change within minutes when she switches out of the mood, her eyes go back to normal. I know this picture does not show a comparison but I don't have a good picture of her sister at the same time. http://images1f.snapfish.com/232323232%7Ff...3B6653338nu0mrj

I hate to say it but it does sound suspect to me, especially since you have another child with PANDAS. Can you get him on a longer term round of antibiotics? Can you take him to the doc who is treating your dd? Where do you live? Susan

Hello and welcome. I know you will find what you need with Dr. K for your son. I would not consider us healed, however we are at a very good place right now. My girls (ages 7 and 8) both have pandas and after trial and error they have much improved on their antibiotic doses. So far the key for us was to find the right dose. I hope to keep them strep free and on antibiotics and hopefully we can make it through until they get older and hopefully manage to work through it all. Susan

LOL, oh yeah the "he/she got one more jelly bean than me" syndrome! We got that here too! Yes, my children are hyper! Before I knew about PANDAS, I considered ADHD and just assumed they were very active kids. I have allowed balance beam activity on the back of our couch because it kept them entertained and active! I never thought I would be that kind of mom! Susan

I can't see it at work, I'll log in when I get home......