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Char

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Posts posted by Char

  1. nevergiveup,

    Hi, how long did your child have tics for and what were they? You said the TAMIFLU stopped your child's tics??? Does she have any now? Is she still taking the TAMIFLU? Very Interesting?? I am happy to hear your child's tics stopped? The IVIG did not help your child's tics but helped the OCD? Why do you think the TAMIFLU helped? Char..

  2. Dr.L has still not called my sons doctor yet. Dr.L has emailed me back a couple of days ago and said she would try to call my sons doctor office. But, I didn't here back, if she did or not. So, I called her office and they told me that she did not call yet. Her office said they really don't know why she hasn't called and doesn't know if she will. Dr.L office staff is kind of giving me the run around. Yesterday, I kind of broke down and had a good cry. Well in the mist of this, my husband came home from work. He asked me what was wrong, so I told him about how frustrated I was feeling and how I felt like I was getting know where. So my hubby is going to call my sons doctor today and try to get my sons doctor to call Dr.L office and get things going. However, he can't understand why Dr.L office staff is not willing to call my sons doctors office. He thinks that is part of there job to do things like that. We paid them money so shouldn't the office staff be more helpful? As in, try to set up a time with my sons doctor, to talk to Dr.L?

    My son has been on Azith 250mg a day for almost 5 weeks now. Last night around bed time I noticed that he seems way more focused when I talk to him and his eyes seem brighter. Also his arm tic has got better, he doesn't do it as often now. But last night I thought to myself, it's too good to be true. Every-time in the past when I think he's doing better, he's really not. But this morning when my son woke up, I started to talk to him, his eyes still seemed brighter and tics still decreased and more focus still. I feel like I shouldn't be writing this because it's too good to be true and when my son gets home from school, things will get worse again. But my hope is maybe this is a step in the right direction. But time will tell....

    I don't give Ibuprofen. Should I, how much? My son weighs 63 pounds and is 8 years old. Does giving Ibuprofen help?

    I am scared because I think I am starting to see improvement and I only have a little over a weeks left of the Azith to give to my son. I really doubt my sons doctor will prescribe anymore Azith without talking to Dr.L first. So I am scared the improvements my son is having will be gone, when my son done the Azith. Char...

  3. nojo,

    I am glad that your visit went well with Dr.L. I find Dr.L too be very compassionate and understanding. However, I have found some of her office staff not very friendly and not very helpful. So I think maybe some of her office staff needs to be a little more compassionate and understand that it's there job and We are parents, who maybe are a little more sensitive. Because alot of us are stressed and are desperately trying to find help!!!! Doesn't it make it easier for the parent, when office staff is friendly and helpful? I find that anyways.. But I do think Dr.L is a wonderful doctor and I am thankful she is willing to try to help my son. :lol: Just wish her office staff was a little more friendly and not so stand offish!!!

    I agree with Faith, aren't all doctor offices busy and busy with calls etc., that shouldn't make office staff not friendly to patients....

  4. Thanks everyone for your responses. My sons doctor will not prescribe a months steroids without talking to Dr.L first. My sons doctor wants to ask her a few questions first. Which I think is understandable because he wants to make sure the doses and other things are right. I know Dr.L is busy but, I paid money like her other patients so shouldn't she do, what she said she going to do and what her office said she going to do. I have been dealing with these issues with my son for awhile now. I am very stressed out. My family is really starting to get affected by all this. Is it too much to ask to get the right treatment for my son and try to get him better. I am a Mom, just trying to get the right treatment for my son and I feel very frustrated!! There really is no help in Canada so that is why I am trying to get help from doctors in the USA. I wish there was more help in Canada but there just isn't. I feel like I'm never going to find peace and my son is never going to get the right help. Sorry everyone just needed to vent!!! I really do appreciate everyones advice on this forum. It helps me to stay strong when life seems like it's never going to get any better. Char...

  5. My son has been on Azith 250 mg a day for almost a month now. His focus is a little better but, tics are still there. I had my phone consult with Dr.L last Tuesday. She thinks my son needs to try a month of steroids. She said she can't prescribe prescriptions over the phone. So she said she would call my sons doctor and explain things to him and try to get my sons doctor to prescribe the months steroids and get my son on antibiotics for a year. She felt that the steroids should help my son. I really hope my sons doctor agrees. I am pretty confident that he will.

    However, Dr.L has still not called my sons doctor yet, like she said she would. I have called her office twice and emailed her. She has not emailed back and her office just keeps telling me that they will give her the message to call my sons doctor. But here I sit and still no phone call to my sons doctor. I really wish Dr.L would call and talk to my sons doctor so, I know where I stand and take the next steps. I am very nervous on trying the months steroid for my son but, I have too tried to see if it helps. I feel really discouraged right now, I feel like I am getting no where. Should I see more results from the Azith, my son is on? He still has 2 weeks left of the Azith, Any thoughts?? Thanks Char..

  6. Vita10,

    My son has intolerances to eggs and dairy. I have found some good recipes and food ideas from being a Feingold member. If you joined, I know you would get some great ideas on different things to feed your child. Just a thought :mellow: Did your child show to have an intolerance to chicken, is that why you are not giving your child chicken? Char...

  7. I was just thinking to myself yesterday, that I wished my hubby would be more understanding and helpful when it comes to our son. I feel so frustrated sometimes because it seems he doesn't even want to hear what I have to say about our son issues. So it turns into a fight. I find dealing with all of this really puts a stress on my marriage. Just wanted to let you know that, I too find all of this puts stress on marriages! I do find however, that my hubby being more relaxed about our son in away, helps me to be a little less stressed at times. I have found that to be a good thing when my life seems so stressful. So I guess maybe my hubby is actually helping me. But yes, all of this is very stressful!!! Char..

  8. Hi,

    So I took my son back to his doctor. I showed him Cunninghams Study and showed what my sons Cam-Kinase II score was. He agreed to give my son a trial

    Of Azith 250mg a day, for 6 weeks. My son has taken it for 2 days now, today will be his third day. So far I haven't seen again good or bad of a difference, so far. My sons doctor wants my son to see a Ped.Pysc.. He said that the Ped-Pysc., sees some Pandas kids. However, my sons doctor said as far as he knows, all that Ped-Pysc, does, is uses antibiotics and some other meds, that I am not willing to use for my son!!! In Canada they cannot do more then that for treatments because of strict laws. So I don't know if I should even see the Ped-Psyc or not??

     

    I have emailed Dr.Latimer and she said to set up a phone consult with her. So I did and it is set for Oct/06. I wish it was sooner but, I guess I have to be patient. Does Dr.Latimer prescribe meds over the phone or does she work with a doctor in your area? Thanks Char...

  9. Hi,

    My son was never officially diagnosed with TS but the doctors said he had tics and would grow out of having tics. He started having tics, temper issues, light sensitivity, leg pains, hated crowds at 3 and a half. I took him to the doctors and they said he had tics and to ignore them. At that appointment the doctor said his glands in his neck were swollen but never checked him for strep :( That makes me so mad!! So my son is 8 now. Over the years he gets strep 1 to 2 times a year. I didn't know what Pandas was until I joined this forum. So I have been going back and forth between Pandas and TS. I could never get any doctor where I live to Prescribe a trial of longer antibiotics. So that is why I decided to do the Cunningham's research study for Pandas.

    His Cam-Kinase II score was 137 in the Pandas range. So now I finally have some proof . I am taking my son back to the doctor today to try to get a trial of longer antibiotics. I really hope he agrees. I am also bringing the study to show my sons doctor. I plan to see Dr.L soon. I just wish I knew about Pandas before now. :) Char....

  10. PKM,

    Hi, I got the Cunninghams test sent to me through Fedex. When I got the test, I thought I could go to my family doctor and get my sons blood drawn. But apparently in Canada doctors can't do that. They have to get permission to get blood drawn for research studies. And that can take along time to get permission, to do that. So I thought maybe I could go to a different lab and pay to get it done but no luck :wacko: I started to get very discouraged!! Then I remembered that I had seen a ND doctor for my son awhile ago and she had drawn my sons blood for another test. So, I decided to ask her if she would draw my sons blood for the study. She agreed, I was so happy! I got my sons blood drawn and spun. I sent it back through Fedex and did not have a problem sending it across threw customs, to the USA. Have you found any doctors in Canada who treat Pandas yet and believe it really exits? Char...

  11. Hi, from what I hear Dr.Latimer sounds like a great Doctor. Does she consider Cunninghams research Study a good test to see if a child has Pandas or not? I read somewhere on here I can't remember were but someone saying she says to get the test done. Right?? So my question is, will she treat for Pandas after she sees your child is in the Pandas range on the research study test? I know she also goes on symptoms too. I am trying to research my options for my son. I am from Canada so, I have been searching too see if there are doctors in Canada who treat Pandas and it seems they do but, the treatment is limited to antibiotics and that is where it stops. They do not offer other treatments :wacko: Any feedback would be appreciated Thanks Char...

  12. SF Mom,

    Thanks for the responding! My mind is running in circles right now! My son has had systoms for awhile now. I just keep thinking only if I knew before now :angry: I am going to take my son to get long term antibiotics right away. I hope my sons doctor will prescribe them! What is IVIG treatment for Pandas? Does Dr.L take patients from Canada? I just feel really overwhelmed right now!!

  13. Deanna,

    Hi, I am so confused as well!! I just got back my sons Cam-Kinase II levels and it was 137. I just ran the test too see if my son has Pandas because I have always had that in the back of my mind. Now I have the proof!! This is so hard to wrap my mind around. I just keep thinking all this time my son has not been getting the treatment that he has needed!!! :angry: I feel sick to my stomche right now!! Can anyone tell me what my next step should be?? I am very confused Char... :blink:

  14. Krista,

    Hi, welcome to the forum.^_^ Sorry I haven't posted yet but, I have been busy with my kids starting school. I live in Canada as well. I have not found alot of doctors or ND doctors where I live so, I am so thankful for this forum and the help others on here have given me. You could start out by giving some magnesium to your child. It seems to help tics with some children. Also you might want to see a DAN doctor to help you run some tests and help guide you to help your child. There is a good DAN doctor in Vancouver BC,(DR.Anita Bratt). She seems to know what she is doing and her staff it great! My son is on the TS-Plus and it has helped him. Not as much as I would like but, it has helped him and when I don't give him the ts-plus his tics increase. You can email anytime, even if it's just to vent.. Char...

  15. Hi Char

    my son did not show high arsenic so that was not treated

     

    he did show high mercury, most likely from my many mercury containing dental fillings when I was pregnant and nursing

     

    we treated and yes, his levels went down dramatically

     

    arsenic levels can show high in kids exposed to it in woodwork, especially wooden playgrounds that may have been treated with it.

     

    just google high arsenic from wood and you will see the dangers

     

    I am not a doctor and so I cant say what is high or low levels of arsenic and at what point they should be treated, but honestly if I got a result showing high arsenic and my doctor simply brushed it off I would ask many questions based on all the warnings about high arsenic and kids

     

    did you watch that youtube video I posted on mercury....seeing what happens to the neurons really drives the point home

     

    Cheri,

    Thanks, and I will google high arsenic from wood. I have a wooden play swing set in my back yard. I'll have to do some checking!! All of this can be so confusing, Char...

  16. Cheri,

    So your saying that I should be very worried and find another ND and do a detox? Should Arsenic even show up on a hair analysis test? I really think I need to find a new ND for my son. However there few to select from where I live. I am so frustrated! :( After your son did a detox, did you retest? IF so, were his levels very low or gone? Any suggestions would be very helpful to me. Thanks Char...

  17. Cheri,

    Hi, my son had a hair analysis done a few months back. We got the results and went and seen my sons ND. I was concerned about the results because on the results it showed that my son levels for Arsenic were at 67% and Mercury was at 67%. Uranium was at 94%. The first 2 were green lines and in the middle of the graph and Uranium was a ride line almost at the end. I asked my sons ND about it and she said not to worry about it. But I have been reading a bit on the austium boards and parent say that mercury levels should be really low. So I do not know what to think about it :mellow: I feel like maybe I should be worried and do some detox but my sons ND said she is not really experienced in detoxing children. Are these levels high enough that I should do a detox? What you do think? Should Arsenic even show up on a hair analysis test? Any thoughts on what to do? Thanks Char..

     

    abbe, have you ever had a hair analysis done to see about mercury before?

  18. Faith,

    There are going to be slips ups here and there. But I feel the same way when my son has something he is not supposed to have. His tics increase and I feel horrible. I feel like Oh no what have I done. Now I have to wait this out and hope and pray the tics decrease. So I just want to tell you that you are not alone when feeling this way. I find it so hard to keep his diet clean when all his friends and relatives are eating what he can not have. I find it also hard when relatives think I am just nuts for keeping him on the diet. But they do not fully understand things, it frustrates me!!! :D Anyways, have you tried to give more vitamin b6? Do you give your son Vitamin B6? I can't remember if you do or not. I find that if I give my son 100mg of vitamin B6 for a couple of days it seems to help a bit. Hope your sons tics calm down soon!!! Char..

  19. Hi All,

    Has anyone ever heard or have know about some trying placenta stem cell treatments for tics? There is a doctor from Mexico who has treated over 3000 patients for various things. He has been doing it for 18 years now. There are no side effects from getting the stem cells. He seems to have helped alot of people. Does anyone know if someone with tics has been treated with stem cells? It would be interesting to know! :blink: Thanks Char...

  20. Hi,

    we saw Dr. Latimer today and were very pleased with the visit. She would like us to get the Cunningham blood test and if that comes back in the positive range for PANDAS she wants to put him on steroids . She wants us to continue the Pen V-K 250mg twice a day. She does not sound like she thinks stronger antibiotics such has Zithromax of Clindamycin are indicated. Anthony meets all the criteria for PANDAS but would like the Cunningham test done to validate. He does chorea like movements that I always thought was him just not sitting still. His titers drawn in March when he tested positive for strept were very high which she said indicative of an ongoing infection. She asked us if we had a dog. Well we did up until the 3rd week of May but had to put her down because she was almost 17 and not doing well,, she said dogs are huge carriers of strept. We just got home it was a long day. I would love to answer any questions. She also said she would like us to keep him on Topamax she is using it and has seen very good results.

     

    Deanna

     

    Deanna,

    Hi, How are things going with your son? When you said your son does chorea like movements and you always thought it was him just not sitting still, what do the movements look like? Or is it more like just not being able to sit still in a chair? Char...

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