Suzan

I have used it with my girls in the past to help with their sleep patterns. But since I have not tested their neurotransmitters, I get nervous about using it too much and we just use melatonin for sleep. I, on the other hand, have low neurotransmitters and my doc has me loaded down with 5-htp and I LOVE it. It is helping me sleep and feel better. I take it at lunch, dinner and bedtime and if I wake up at night I take more. My neurotransmitters are so low, my doc says at this point I can take as much as I like. Now he is testing me every 4-6 months to see how I am doing. Susan

I have not gotten the results yet. If the test was on Monday but she didn't develop the cough until Thursday do you think it would show up in the test if it was mycoplasma? But she was having that problem with having to move her thumbs and toes, etc. by the day after the myco test. Susan

He said it sounds more like bronchitis than pneumonia. The doc is putting her on augmentin for 10 days. I didn't know what questions to ask. He didn't do any tests to find out exactly what it is. She was tested for mycoplasma but that was on 3/22 so I guess that won't help for what's going on now. She's currently on 500 mg zithromax a day. Susan

I'm completely confused now because before we could get to urgent care she was doing better and her fever went down. I'm watching her tonight to see how she is. Maybe I over reacted? Susan

Cough, sore throat, fever rising (100 degrees right now but she's had some motrin), aches, pains. Sound like strep? I'm thinking more like flu. I think we will be heading to urgent care in a bit. Susan

Maybe that's my dd8's problem today, LOL! I have not noticed that specifically but I did just go look at the moon phases and she was sick for a week during the first 2 new moons of 2010.

Our dd9 gets a lot of bloody noses too -- particularly during exacerbations. We weren't sure if it was dry skin, seasonal allergies turning into congestion turning into blowing nose/bloody nose. Hard to say. Symptoms were correlated with bloody nose -- but so was giving advil :-) So could have been a number of different factors. Bottom line, yes we got them too. Oh, and we live in a pretty humid place so unlikely to be dry air. Buster I have been wondering the past few days if it was the advil and decided to stop for a bit to see if it helps. Susan

Us too. DD8 having lots of them. The doc's say dry air from the heater. Hoping they stop soon. Susan

Do abx affect allergies? Our immunologist let my dd's stay on but had to come off all allergy meds. Susan

Thanks for your concerns! She was fine after going to sleep and did have a good sleep. I left a message with the neurologists office today but did not hear back. She was MUCH better tonight and did not complain much about the sensation. She has a cough now so I am guessing she is fighting something, maybe that was causing the reaction in her hands and feet? As far as your son goes has he been seen by a neurologist? Susan

dd8 - dust mites, cats, dogs, grass, trees, weeds, gluten intolerant possible celiac dd7 - dust mites, gluten intolerant possible celiac Their PANDAS symptoms are triggered by allergies. Susan

The sensation has now moved into her big toes and legs and she spent a good portion of the evening moving her thumbs and toes back and forth. It was very disturbing to us both and she cried to make it stop. She said it is like a force and she can stop it but not for long and she 'has to do it'. It gets worse at night but it was happening at school today. I put her in an epsom salt bath and that got her calmed down enough and she went to sleep soon after. I have a call into both her doctors but they are both out of town. Earlier today I had her put her hands in the air and close her eyes and her fingers do move a little like piano playing (but not a lot) and they twitch. Susan

My dd8 had a severe reaction after having some dental work and allergies do trigger her. Maybe these two combinations are causing trouble? I am sorry this is happening and you are having trouble getting some help!! Susan

Yes, my children were never officially diagnosed on the spectrum but especially my youngest dd had all sorts of issues that made going to a Dan! doctor very useful for us (gluten intolerance, seizures, mitocontrial markers, malabsorption, gut issues, impulsive, I'm sure others that I don't remember). I do think it is a combination of pandas and gluten intolerance (possible celiac). They are now 7 and 8 years old. They had chronic sinus, ear and chest infections and lots of strep. GOOD LUCK with your appt with Dr. K! Susan

My girls had strep infections one at 16 months and the other at 12 months old. I am sure those are the infections that started all their issues. They did not get tics or obvious OCD although in retrospect they did have OCD. They probably had sudden onset too but since they were so young, it was not obvious to us. They were initially diagnosed with sensory processing disorder, then possible ADHD and other issues often found with with autism. susan

I did this for dd8 today and could not feel anything when she gripped my hand. But when I had her hold out her arms/hands until they got tired, her fingers did not start playing the piano, but they did start twitching fast in her thumbs an fingers. I think we have an issue here. Susan

Melanie, I don't have any advice but wanted to give you my sincere HUGS! I am sorry the IVIG is not working and that you are feeling no hope. Can you go to see Dr. K or someone who would give IVIG at a higher dose? Susan

LLM, we were just at the neurologist on Monday but this symptom had not started up at that time. He did do an exam on her and did not mention anything that he observed then. I've looked at the pictures of chorea and so far I don't see anything that looks like what I've ever seen her do. I'll try the milkmaids grip test since she wants to grab and squeeze anway. Susan

I tried that a few weeks ago on my other dd who never stops moving to see how she would respond and she was able to keep her hands still. Dr. T. checked them both for milkmaid grip (although I don't know what that is either) but neither had it. I will try on my dd8 tomorrow. Susan

It seems to get much worse in the evenings which is her worst time and she has been more emotional and reactionary the past two days. Today she started talking about it as soon as she got home from school though which was much sooner than yesterday. She asked me why it was happening and I said "It's PANDAS" and she said "I don't have PANDAS". This is a different response than usual too, normally it comforts her to know that something strange she is going has a reason. I'd say overall it looks like she's headed downhill. Susan

She says it's mostly her thumb and mostly on her right hand. The movement is similar to clicking a ball point pen up and down and up and down. If she's not doing the movement herself, it doesn't keep going involuntarily but she feels like she has to keep doing it and if she's not doing it, she's upset about it. I don't really know what to do. Susan

Does anyone know of anyone who has been helped by lower doses of IVIG? 0.4gm/kg This is what our neurologist wants to start with. I understand this is too low for PANDAS?. He says this is what he always starts with unless a very severe case. Is this just wasting our time? Trying not to stress but I'm not so patient and I won't get to talk to him for a few weeks. Does this just guarantee a second treatment? Does it get us anything? I won't say no to it if that's all I can get. Mom md, can you tell I'm starting to stress? Susan

She is not playing the piano in the air but maybe if she didn't have anything in her hands it might?? I've been confused about the piano playing as well.

For the last 2 days, dd8 says that her hands feel strange. She has to keep them moving. Rolling a small ball between them, clicking the tops of pens on and off, pulling a belt between her hands. She is upset about the sensation but can't describe it well. She says something is wrong with her hands. She says she has to do it. She can't stop, the only thing she says is that she has to move them. They can't just lay still. If she's eating, painting, coloring, writing, she is OK but if she's reading, watching TV, talking, her hands start to bother her. It's bothering her enough that it's starting to bother me too! Susan

IgG means intolerant while IgE means allergic. Depending on who did the test, they may not think the IgG results are significant. I know for us, IgG is very significant. My dd's gluten/wheat IgG was 75 and she is highly gluten intolerant. I would consider your milk result very high. Keep us posed on what the doc says! I am very interested. Did they test total IgA or do a celiac panel? Susan