Doctor's Appointment

[emma1]

Dedee, Thanks so much for all of the fabulous information. I really value your opinions, information, etc. on tics and antibiotics. We noticed major improvement on the amoxicillin -- but there are still some there. I am probably the only one noticing, however, as they are minor. (I am working on trying to be more relaxed with all this, but I find I am constantly watching her like a hawk! I know this is not good, as she is a pretty smart cookie, and she does notice me watching!!) However, I did keep wondering whether, if she were on the "right" antibiotic, all symptoms would subside. I really appreciate you telling me that might be too much to ask for.

 

I notice that my goals continue to change as she improves. First, I just wanted the tics to not be so disruptive. Then, not so frequent. Now that they are neither disruptive or frequent, I just want them gone!

 

She is still doing pretty well, even though we have been off antibiotics for a week. (I think I finally started breathing again yesterday -- very cautiously, though.)

[kim]

Michele,

 

yet to have all the blood work explained. I am trying to get insurance to cover the DAN Dr. based on nutritional and metabolic problems. The Carbon Dioxide total was low, the HDL cholestol was borderline high, the iron saturation was low, the anti-mylin titers were negative. His pyrolaria test was positive. Like I said I am not sure what all this means. I am not sure if ASO titers wee cheked. Strep was negative. He rarely gets the strep anymore. He did have Anti MAG antibodies suggesting active demylination in a peripheral neuropath suggesting Igm paraproteinemia.. I have no idea what that means! I will have a phone conference next week to discuss where we go from here.

 

I was wondering if any of your tests were done through Great Plains? If so, there is a girl there named Pam. You are entitled to a phone consult (no charge), with the Great Plains tests, at least the more comprehensive ones....just call and ask, if this applies to your test. It can be very helpful in understanding test results and recommendations. I know you said you were going to do a phone consult, with DAN dr. too. Did you have it yet, or still waiting on insurance info?

 

Michele, you made a couple of remarks on another thread, that I would like to respond to on the "explode" thread. I know I must seem like I'm off on a one tract tangant here, but I just feel it's so truly important.

[heveritt1]

Thanks for your suggestions Kim. you mentioned maybe having the baby looked at again so we had blood work on him to check his immune system, he is slightly sick all the time. He handles it pretty well, so I think it is what he is use to. We got the doc to give us Clindimsun (that is spelled very wrong). Appearnatly it is being percribed for Pandas lately. My doctor is working with a specialist at UNC. It started to work, then the tic came back, so I am wondering if it is yeast or something of that nature. The doctor sent us to a naurologist,so I think he is done treating my son for now. I also made an appt with an immunologist to have IGG and other test done. He is having such a tough time at school, we are even moving him to a small private school. He simply can not handle too much activity.

 

Anyway, thanks for the suggestion. These post are so helpful. PS. Please excuse my spelling, long day

 

 

I love this conversation. I've had it with myself many times.

 

Wouldn't surprise me, if many cases of unusual movements were reclassified as metabolic syndrome, or immune system dysregulation, in the future.

 

This was the subject of one of my all night investigations once. Basically, what I came up with, was TS is most useful as a "clinical diagnosis." It allows researchers to classify cases according to symptoms (both motor and vocal tics although not necessarily occuring at the same time, for a period of 1 year). It describes symptoms, it says nothing about cause.

 

Heveritt, something just occured to me, you said your son showed symptoms both times the baby had impetigo. Impetigo can be caused by strep or staph.

I wonder if staph is causing the relapse of symptoms. Strep titers would not be high, if staph was the culprit, I wouldn't think. Anyone else have any thoughts on that?

[michele]

I do have a phone conference with Dr. Demio next week on Wed. at 3PM. Yes I did have most tests done at Great Plains and it would be interesting to know what they would say in a phone consult as to the test results. My girl friend is a labtech at the childrens hospital but she doesn't seem too interested in discussing his results. Maybe she just draws the blood and enters it into the system so has limited knowledge on interpretation.

 

I am like Emma wondering about all these supplements and there overall affectiveness. I dislike giving him long term antibiotics. What if a strain of pnemonia comes along like Kim shared in the article and no antibiotic will be affective in treating it? I do see improvements but is it because of waxing and waning or is it from the antibiotic or supplements? He still cracks his knuckels just not as often. He is not as compulsive but he still shows fixed interests. He is not as moody but he still has tantrums. It is baffling to me. My eleven year old said mom just stop all the meds for a few weeks and see what happens. The diet is going well and he hardly puts up a fight over it.

 

His school says he is doing well. They can not give him OT now because his delay is not impeading his education at this time. They will continue to watch. They said an OT, IEP can not stand alone. He would need a diagnosis like LD to go with it. Although his syndrome might qualify but it seems too soon in the year. Other kids may be having handwriting problems right now too because it is new. I went ahead and booked an appointment for outpatient OT. I am sure our insurance will cover it. I wish like so many other PANDAS and TS parents there was a clear path to follow but it seems like a jagged road. I guess we just want to take the least risky route and use products that are safest. Thanks to all of you who share your trials and programs with us. Your information and experiences help us so much. I truely appreciate your help. I feel like nobody else really understands what we go through. Nobody else knows the constant way it weighs on your mind. God bless you all.

Michele

 

Michele,

 

yet to have all the blood work explained. I am trying to get insurance to cover the DAN Dr. based on nutritional and metabolic problems. The Carbon Dioxide total was low, the HDL cholestol was borderline high, the iron saturation was low, the anti-mylin titers were negative. His pyrolaria test was positive. Like I said I am not sure what all this means. I am not sure if ASO titers wee cheked. Strep was negative. He rarely gets the strep anymore. He did have Anti MAG antibodies suggesting active demylination in a peripheral neuropath suggesting Igm paraproteinemia.. I have no idea what that means! I will have a phone conference next week to discuss where we go from here.

 

I was wondering if any of your tests were done through Great Plains? If so, there is a girl there named Pam. You are entitled to a phone consult (no charge), with the Great Plains tests, at least the more comprehensive ones....just call and ask, if this applies to your test. It can be very helpful in understanding test results and recommendations. I know you said you were going to do a phone consult, with DAN dr. too. Did you have it yet, or still waiting on insurance info?

 

Michele, you made a couple of remarks on another thread, that I would like to respond to on the "explode" thread. I know I must seem like I'm off on a one tract tangant here, but I just feel it's so truly important.