Iowadawn

Also, have you considered Vistaril instead of Benedryl. Both are old antihistamines. Vistaril needs an Rx, but it has wayyyy better anti-anxiety properties than Benedryl along with the normal antihistamine properties. It doesn't interfere with other meds either. Worth a check.

First, will she TAKE the med. Second, do you know how she will react to the med? I bring these two points up only because we have had paradoxical effects to so many psych meds, and taking meds has been a HUGE issue with an upset child. Anyway you can test it out if it is a new drug? My 2 cents from experience. Dawn

I am glad to see that change. That statement made me shutter when it was originally put up on her website, mainly because I thought it could be used against the PANS/PANDAS cause. This is much more accurate.

We were warned, and it was very true, all h*** broke loose when we started treating the lyme. We started out PANDAS and are still treating lyme. Just added Flagyl back because ds14 is in a safe facilty to do it.

We consulted with Dr.T in September and saw him in person in October and then ran the courtagen tests. We have been rattling him for the report, to which he promises....how do we get him to follow through? He was promising the report well before his mother took her final spiral. My son is in now in residential treatment...his input is important. What have you had to do to get what you need from him. I need ideas, as we have tried. Dawn

Is it nausea or does it include an element of fear of throwing up in public? We struggled with this with our dd15 (at the time) before we knew we were dealing with PANDAS.

Is it nausea or does it include an element of fear of throwing up in public? We struggled with this with our dd15 (at the time) before we knew we were dealing with PANDAS.

Only a bump

I have an email into Dr. T. My son has gone bonkers whenever we have used Flagyl or GSE. Wondering if this complicated the lyme treatment.

Enterobacter cloacae--OK, my PANDAS buddies. Found post T & A culture on ds13. Any experience with this bug? I haven't seen it mentioned. Hmmm. Dawn

Ditto MomwithOCDson.

Thanks! It has been so hard to rattle Dr. T, even though he said to bug him if we didn't have the report within a few days! Will try again tomorrow. Did you results show anything significant? Dawn

Hi all- For those who have had the Courtagen mtDNA test through Dr. T---How long did it take for the results to get to his office? Dawn

Your post gives me hope. We have been around quite a while, too. I remember you. Thank you for posting. Dawn

Good Deal!

I asked his doctor psychologist for a note today---she quick wrote one! Thanks.

Boy--sounds all too familiar. Evan made the first two days and then crashed and was hospitalized. He is going to school now--not full days, but has settled into working most of the time in smaller sped environment. The fear of the classroom--ugh--offering my prayers of support, 'cuz when they refuse it is next to impossible. Dawn

The appt is on Saturday a.m. at 9 a.m. He will be staying in Keyport with friends---idea of the length of time for a drive to Ramsey on a Saturday? He would like to take Evan to see the Statue of Liberty and quick see the ocean at Sandy Hook. Flight is to come in at 2 on Friday. Appt at 9 and fly out at 5 Sat from Newark Airport. Doable for you Easterners. Wade has driven in NY traffic once! Dawn

How is your son??

Thanks for the feedback. I so wish I could go. Since we deal with impulsive/aggressive behavior when he gets anxious we felt it prudent to send my husband with him instead of me. He has never been on a plane. He has meds----. He is getting excited about the flight. I think he will actually enjoy it!! Dawn

Oh boy, for those who have followed our journey, here is some more. Ds13 and husband have a 7 a.m. Flight to NJ on Friday to see Dr. T. We have had an initial phone consult and will be getting results, etc. of blood work he had ordered. We wanted (though affording it is another thing) to say Dr. T physically saw our son to get him on board with his care. We have our own court issues. If you only feel comfortable sharing via PM, can all you Dr. T patients give me an idea about what to expect. Will he give him a good looking over? Our son is a complicated one. Can't wait for the Sat. Appt. Please say a prayer for the plane trip and the days this week leading up to it. PDD traits here. Dawn

He does still have them, but he doesn't ever really get sick either. He is never strep positive. I don't know if I would just yank the out just because, unless I saw him always testing positive or being sick a lot. I am trying to weight treatments and reasons for treatments. It has not been suggested by Dr. B at all. So I don't know that it would be a viable option for us right now. At the IOCDF conf. Dr. L. said she is culturing a lot of antibiotic resistant staph from PANDAS tonsils. Also, both Dr. L. and Dr. T. appear to be in the camp of recommending T/A b4 IVIG is tried. We can't wait to get results of multiple labs drawn for Dr. T. My husband is flying out with ds13 to see him in person net Sat. We had a consult on the phone a month ago. i bet he says T & A as one thing to do. Dawn

It has been a verrry long day. Court, ds13 discharged from hospital, blood draw, settled back home......I haven't read the entire thread. The topic caught my eye. CI here with ds13. responded to vision therapy. One daughter had two eye muscle surgeries as a baby and toddler. strabismus. another daughter has some eye muscle problems, but eye glasses do the trick for her. I happened to notice that one of the identified genes with polymorphisms was a gene connected to eye muscles (something along that line) and/or drooping eye lids. I do not feel like going back to track it down right now. Just thought I would toss that out. I am not sure if there is any connection. Again, maybe I missed it in the thread. Dawn

PM me, too! Dawn