trggirl

Glad you are back.

I missed this the first time around. I am praying for a speedy recovery for Lauren.

Faith, thank you for updating and glad to hear the surgery went well. I am really looking forward to hearing updates on whether this helps. Oh, my daughter has the laugh too. She just started it a couple of months ago. It is a very exaggerated laugh. I really didn't think anything of it except that it was annoying until I read your post. Again, I just wrote it off as an age thing. Interesting.

In the OCD dog thread, Dr. T posted a theory on OCD and whats going on with Calmodulin and CamKinase II, but I wonder how that relates to tics since strep induced tics are also produced in PANDAS along with high CAMKinase II results???? Any thoughts??

We do private school and it is a double edge sword. On the one hand, it is great to have small classes. Also, I know the teachers and students very well, and I am very involved and on top of things. On the other hand, this particular school goes at a fast pace. I think it makes things harder because my daughter, who needs extra time, holds them back. And because it is a small school, everyone knows it. It can work both ways. I think before I entered the private school, I would make completely sure that EVERYONE was aware of the situation and on board with it. I would not change without that assurance.

Onset of action is quick Faith.

I would just add to what Faith said, Omega's of any kind make my daughter tic. I put her on fish oil and she went from mild tics to very noticable tics. I finally figured it out and quit the fish oil, but I have noticed I can't buy anything at all with Omega's added. I have accidently bought eggs, cookies, and a few other items with the added omegas in fine print and she reacted. I really have to be careful because they put it in everything these days. It is quite possible that if you get rid of the omegas, you won't even have to consider clonidine.

Suzan, did your daughter have tics?

I didn't know that Melanie. Thanks for that information. I will check into it immediately.

If we end up in public school, I will definitely get the IEP or 504. The problem is we are in private and they don't have special accomodations. I am really, really scared to move from our school. At this school, she has a class from 9-14 students with 14 being max. I am heavily involved and know the teachers, parents, and students very well. They teach classically which is a lot of memory work so that plays to her strengths. While she does struggle socially (because her mind is going so fast and she can't stop to listen), there is a no tolerance policy for meanness. And the classes are so small that the teachers are on top of the kids and nothing goes unnoticed. We recently had some meaness and it was dealt with strongly and I have noticed some of the girls making extra efforts to be kind. I am so afraid if she goes to public, she will be lost in the big classes and ridiculed because she is different. So a big part of my dilemma is : 1. move her to public school where she will get accomodations, but she might get ridiculed 2. give her meds (which even thinking about it makes me hurt) but know she will have the small class that she needs and will not get made fun of. 3. homeschooling, but depending on the day, my daughter battles me on doing the work and I don't think that would be a good situation. I do think OCD is involved with this because she has told me with tears in her eyes that she won't sit down and do the work because she might get something wrong. This is not the typical scenario though. Usually she just gets distracted by whatever is around her and I have to tell her over and over to do her work. And if I turn my back, she is up and gone to follow through on whatever thought came into her brain. I have tried fish oil and it caused horrific tics. I think Pycnogenol works in a similar matter, but I will look into that. I will also look up the Omegabrites and Intuniv. Did any of these cause tics for your children? Did your child tic before or did they have OCD. Please keep the suggestions coming.

Hi, I am so sad today. We go to a private school and my daughter's teacher told me she could not send her on to third grade unless something changed with her focus. It is not an academic problem, it is strictly focus. She cannot perform in class and she is holding the others back because she takes so much time to get her work done. I do understand because I have the same problems at home with homework. What should take 1 hour, takes us 4 hours. Could y'all share with me if your children takes anything and if it works well and side effects you experience. My daughter has a tendency towards tics so I don't want to do anything to aggravate that aspect.

Thanks, I will try the other email!

Hi, I called Dr. Cunningham last week and left a message telling them I was interested in participating in the study. I have not heard back yet. Does anyone remember how long it takes for her to get back to you? I hate to call and bother her again, but I don't want my message to slip through the cracks either. I am so anxious to get all this testing done to see if it reveals anything.

Yes, that sounds EXACTLY like my daughter. We did neurotransmittor testing on my daughter and her Norepinephrine came back very high. I am assuming that is why she has a good memory.

It helps tremendously!!! I want to make sure I know what I am talking about as we go forth!! Thank you to all the replies!!

So if steroid burst would affect the scores, would Ibuprofen?

If you get the Cam Kinase test when you are not going through an exacerbation, will you get negative results?

DCmom and SF mom and EAmom, Thank you for the information. So, it looks like I am stuck on the blood draw until after the holidays. A question though, if the ASO titers are negative and the Cam Kinase is negative, will the out-of-state specialist doctors give a trial of antibiotics just based on symptoms????? And keep in mind they are milder symptoms. The tics have pretty much stopped.

Oops, sorry. I was trying to figure out how to quote and somehow I re-posted instead. Now I can't figure out how to delete.

If the ADHD is from PANDAS you should be able to treat the underlying cause (autoimmune dz, strep infection) and avoid ADHD drugs. ADHD is a symptom of PANDAS, just like tics, ocd, anxiety, irritability That is what I am hoping EAMom. We will definitely use the cream on the blood draw. My daugher had a strep infection with a postive rapid test a week or two before Thanksgiving. She was put on Augmentin. I had her swabbed the day after Thanksgiving and she was negative . She started a new motor tic (after having gone for quite some time without motor tics) that weekend, but it has subsided now. She is being very oppositional though and has complained about headaches and stomachaches. I have tried Advil and it is not clear whether it helps or not.

If the ADHD is from PANDAS you should be able to treat the underlying cause (autoimmune dz, strep infection) and avoid ADHD drugs. ADHD is a symptom of PANDAS, just like tics, ocd, anxiety, irritability That is what I am hoping EAMom. We will definitely use the cream on the blood draw. My daugher had a strep infection with a postive rapid test a week or two before Thanksgiving. She was put on Augmentin. I had her swabbed the day after Thanksgiving and she was negative . She started a new motor tic (after having gone for quite some time without motor tics) that weekend, but it has subsided now. She is being very oppositional though and has complained about headaches and stomachaches. I have tried Advil and it is not clear whether it helps or not.

If the ADHD is from PANDAS you should be able to treat the underlying cause (autoimmune dz, strep infection) and avoid ADHD drugs. ADHD is a symptom of PANDAS, just like tics, ocd, anxiety, irritability That is what I am hoping EAMom. We will definitely use the cream on the blood draw. My daugher had a strep infection with a postive rapid test a week or two before Thanksgiving. She was put on Augmentin. I had her swabbed the day after Thanksgiving and she was negative . She started a new motor tic (after having gone for quite some time without motor tics) that weekend, but it has subsided now. She is being very oppositional though and has complained about headaches and stomachaches. I have tried Advil and it is not clear whether it helps or not.

DC Mom, thank you for sharing your thoughts! I am in Houston and have been trying to find a doctor that would even talk to me about PANDAS without looking at me like I am crazy. This doctor is the first one that is listening and acknowledging that she thinks PANDAS exists. She just does not know a lot about it but she really seems willing to learn. With that said though, I can tell that she is not going to go out on a limb. If the titers are positive, it would be an easy answer for her. I think she would write the prescription with no problems. If the titers come back negative, I don't think she will give antibiotics easily but I am hoping as I present more literature and findings to her, and her talking to docs that are in the know, she will get comfortable with it. Again, I think it is just an issue of her being in new territory and not wanting to do something that could cause harm. What makes this hard is I don't think my daughter is one of the extreme cases. Yet, IT IS causing a lot of problems. She has always had her very, very strong oppositional moments with me, but I wrote it off to being an age thing. She has always done little things like repeating her words over and over, simple talk over and over, etc, etc, and again, I just worked around it and wrote it off as her having some quirks. Homework has always been a nightmare, but because she seems to learn it quickly, I just wrote it off as her being difficult with me. Her talking is extremely excessive. I don't think she even hears what she is saying half the time. So many other LITTLE things. What made me finally look at PANDAS is that she had a strep episode last year and three weeks later she developed tics. They were very clear shoulder shrugging, eye-rolling, saying yes, yes over and over again, tics. I suspect that if she does have PANDAS, she has had it since she was about 3. The tics just happened to be the first crystal clear symptom. Wendy, thank you for answering. I think I am going to copy and paste your post and give it to my pediatrician. Lots of good information there. Thank you.

She is a pediatrician but she is one that was recommended on this site.

Hi, after switching doctors, I finally have one that wants to do the ASO titers. Blood for us is a huge thing so while doing it, I would like to get the Cam Kinase. The problem is that I can't get hold of Dr. Cunningham (probably due to the holidays). Does anyone know of any other way I can get this done? I would love to do it while my daughter is out of school. Also, can you think of anything else I should request that might be needed? We did all the basic blood work a couple of months ago. And now another issue that I need opinions on. This doctor wants us to see a psychiatrist to be evaluated for ADHD because my daughter's focusing problems are becoming such a huge issue. I have very strong opinions on this and most of the doctors I have talked to do not agree with me at all. Please let me know what you think. Here is the issue.......I had my daughters urine neurotransmittors checked. I know the controversy is that the neurotransmittors change on an hourly basis so the urine test I take now might be completely different an hour from now. My thinking is that it should be looked at like you would look at the blood of a diabetic. Specifically, if you take the blood of a diabetic and you get a 400 reading, it is so far out of line that you know the patient is going to be diabetic. Now that reading may change in the next hour and be completely normal, but you caught that 400 reading and you know you have a diabetic. I feel that it is probaby similar with the neurotransmittors. If you do the test and one neurotransmittor is way out of range, I don't think you can just discount that. My daughter had a very high Norepinephrine level according to her urine test. Most ADHD drugs increase Dopamine and therefore, Norepinephrine. My gut feeling is that she would have terrible reactions on the typical ADHD meds because it would make her Norepinephrine go even higher. This new doctor, while being great about looking at titers, does not use urinary neurotransmittor readings. Would blood neurotransmittor testing be more acceptable to a doctor??? Again, IMO I just don't think you can discount neurotransmittor levels. Just to be clear on my feelings, if someone could show me that my daughter had a low level of a specific neurotransmittor and that was causing the focus issue, I would treat her in a heartbeat. I just don't like tossing drugs at children haphazardly hoping for good results but in a lot of cases getting some bad results. And also, in the back of my mind, I keep thinking that if she is PANDAS (she is not diagnosed yet), and we treat with antibiotics, would that clear up the focusing issues and we would not even have to look at ADHD meds????? Just so much to weigh and I am confused and overwhelmed and want to do the right thing for my daughter. And my daughter is to the point where I have got to get her some help. I just don't want it to be the wrong help.