Char
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Posts posted by Char
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I am thinking about upping my son Azith. He is on 250mg a day. His doctor said I can up the Azith to 350mg a day. My son is 8 years old and weighs 67 pounds. I took him to the doctor today and his lungs sound fine. I got them checked because Dr.L wanted me too. Dr.L said my son has not been on the steroids long enough to impact his immune system. So she wants me to continue on with the months steroids. My son stills has the snorting tic amd bad cough. So that is why I am considering upping the Azith. How much can I up it to see if it helps. Thanks for any suggestions. My stomach is still in knots. Does this ever get any easier?? Char..
Char, My son is 12 and 95lbs. We were on 250mg a day for over 2 months and I saw improvement, not enough. I decided to go to 375mg a day which I have been giving to him at 750mg every other day. I decided to do the every other day to give his gut an extra day of probiotics. Over the summer we had a relapse that followed diarrhea. So far this has worked. Keeping my fingers crossed. The last two weeks of the higher dose seems to make a difference. We are also on a strict diet because I saw sugar and additives effect the tics as well. Kathy
Lismom,
Glad to hear upping the Azith is working!! What differences have you seen? Thanks Char..
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How do they test for Lyme, a blood test?
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I am thinking about upping my son Azith. He is on 250mg a day. His doctor said I can up the Azith to 350mg a day. My son is 8 years old and weighs 67 pounds. I took him to the doctor today and his lungs sound fine. I got them checked because Dr.L wanted me too. Dr.L said my son has not been on the steroids long enough to impact his immune system. So she wants me to continue on with the months steroids. My son stills has the snorting tic amd bad cough. So that is why I am considering upping the Azith. How much can I up it to see if it helps. Thanks for any suggestions. My stomach is still in knots. Does this ever get any easier?? Char..
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Char,
hang in there, I know how you are feeling but hopefully you can get him in tomorrow. I would call Dr. Latimer in the am and ask about the steroids. Did you state in your email to her if you could just stop them?? what day are you on?
Deanna
I asked in the email if my son could stop the steroids but she didn't say if he could or not. My son is on day 6, so far.
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Will you be able to get into the reg dr tomorrow morning? If they determine he has the flu and that's what is causing the cough, she will probably pull him off steroids. I'm guessing she's waiting to see what the ped says.
I have to wait until tomorrow morning to see if I can get in to see my sons doctor. I wish we could see him today. I haven't felt this hopeless in along time.
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Dr.L emailed me back and said she wants my son to get checked by a regular doctor and get his lungs checked. I will do that but she did not answer my question about the steroid, if I can stop it or not. Now I don't know what to do??? Char..
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Hi Char:
We also did the 5 day steroid bust and my son got very sick. We were doing the steroid burst as a test for IVIG instead of as a treatment plan in the way that Dr. L recommends. It was not as successful for us because I believe the sickness elevated the PANDAS symptoms. Hopefully, Dr. Latimer will email you back.
Even though the steroid burst was not as successful for us, IVIG has been extremely successful. Have you tried working with any immunologists in your area? I ask because they are one of the few types of doctors who can offer IVIG locally.
Elizabeth
I have not tried working with an immunologists in my area yet but I am definitely going to look into it. Thanks for the suggestion. I am really hoping Dr.L gets back to me soon because at this point I think I want to stop the steroids. My son is so pale too and keeps snorting away. I am so stressed right now
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I am wondering if I can stop the steroids at this point? I know some of you did a steroid burst as prescribe by Dr.K, does he think it's okay to stop after 5 days at a large dose? I emailed Dr.L but I probably won't get an email back for awhile because she is so busy. Will it hurt my son or give him side effects to stop the steroids? I know that my sons doctor said it's safer to taper down but why does Dr.K not taper down? I wonder if my son will get better faster without being on the steroids? He has never had a snorting tic before. His cough is really bad. I wonder if the steroids are making so he can't fight of the cold cough and making him worse? For those of you who did the 5 day steroid burst did you stop the steroids after that? Char..
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Thanks everyone for the responses. My son woke up this morning still doing the snort sounds. He had 5 days of the steroids so far. We are trying it because he had a Cam Kinase score of 137. Also tics focus problems. He has never had this tic before. H1N1 is going around his school. I didn't think he had it because he had no fever with it. But maybe that because of the steroids? I am going to email Dr.Latimer and see what she thinks and hopefully she will email me back. I might try and give him Dye-free Benedryl. Can you give that with the steroids?
My son really has never had vocals before other than a humming noise 3 years ago that lasted 2 weeks then stopped. So this is very unlike my sons symptoms that he usually haves. Char..
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Judy,
Thanks for the kind words, it helps to know other people get what I am going through. This is so hard and stressful for me and my son. I am going to ask my sons doctor to up the Azith and see if that will help. I am glad to hear that your son is doing better. Char..
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Thanks, I wonder if my son having a cold and then taking the steroids is making him worse?? I am just at a loss right now? Char...
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Hi,
I my heart is breaking right now and my stomach is in knots. I am sitting here in tears. My son has a bad cold and cough. He keeps snorting every couple of minutes. I am not sure wether it is a tic or not. My hubby thinks he is doing it because he has a cold. Maybe but, I am scared it's a snorting tic. He is on day 5 of the steriods and 250mg Azith a day. Right now he is doing every couple of minutes. He does not seem to have snot in his nose to blow. He has never been this bad before. I am so stressed right now. I keep thinking what if he continues to do this everyday. How could he be in school like this. My nerves are shot as it is, I don't think I can handle much more. Any advice anyone?? I could really use it right now. Char..
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mom md,
I am so happy for you and your son. That is awesome to hear your sons Cam Kinase score was back in the normal range. Thanks for sharing your good news with us!!
Char.. -
My local doctor agreed to prescribe the months steroids. My son has been on the steroids for 4 days now. He seems more focused when talking to him. What I mean by that is, he answers questions faster without taking a long time to answer. His eye tics are about 30% better. He is not doing the eye tics as much. So those are small improvements but, I know I have to be patient. Because it can take time for the brain to heal. Also my son has a bad cold and cough. So that is not helping him to heal any faster right now.
Char... -
Hi, Just wanted to add that my son had low titers too. A few doctors told me, that since my son had low titers, he did not have Pandas. WOW, I wish I could tell those doctors now, You are wrong!! But I guess now, I am just focused on getting my son better. Maybe in the future I will have to inform those doctors
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mylittleangel,
Hi, sorry to hear your sons tics have increased. I had the Cunningham test done for my son. I was really shocked when my sons Cam Kinase score came back as 137 and puts him in the Pandas range. I am glad now I know and now I can start the right treatments for my son. I had mixed feelings about the results. I was glad to finally know but mad that my son was dismissed by doctors who said, my son just has tics and focus problems. But don't worry they said, he should grow out of them. That makes me so MAD!!! You should get the Cunningham test done maybe, it will give you some answers too.
The Cunningham research team is awesome!! They are all kind and helpful.
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Michele,
Hi, my sons Cam Kinase score was 137. I had a phone consult with Dr.L and she said that she would like my son to try the months steroids first and if we still weren't seeing the results that we want to see, then we can consider IVIG or PEX? Dr.L said sometimes if a child has had Pandas for awhile steroids may not be enough and that's when you should consider trying IVIG or PEX? Did she not give you that suggestion?
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So I decided after an email from Dr.L to start with 30mg a day of the Prednisone. I gave it to my son tonight and he said he feels hot inside and as he puts it, burning up inside feeling. Is this a side effect of the Prednisone? Also did anyones child who used the Prednisone, have trouble sleeping at night? Char...
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Thanks Vickie, I will keep everyone updated.
Faith, Dr.Latimer suggestion in the email was for the months steroids and antibiotics. She explained that the steroids would help the inflammation. I had to explain it in a little more detail to my sons doctor. I am just happy he agreed to it!!
I noticed that he wants my son to start at 60mg once a day for the first week. That seems high compared to others who started on 30 mg a day for the first week. Doesn't that seem like to high of a dose? Should I just start at 30mg and not at the 60mg a day? My son is 8 and weighs 63 pounds?
I am really concerned 60 mg once a day is too much. Does anyone have advice for me? Char...
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Thanks for the replies!! I couldn't see my son doctor on Friday but, I just got back from seeing him today. Before the appointment I email Dr.L about possibly giving me her suggestions for my sons treatment in an email and I would give it to my sons doctor. I was so happy Dr.L emailed me back with her suggestions. I took the email with me to the appointment. My sons doctor agreed to the months Prednisone and 3 more months of the Azith 250mg a day. He said he'll think about giving me more Azith after the 3 months and see where we are at. I am happy but so nervous right now. This will be my sons first steroid burst and I don't know how he'll respond. Are there any side effects I should be looking for with the Prednisone?? For others who have used it, did you see any side effects? I really hope this helps my son!!!! Any suggestions would be great:) Thanks
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Hi, Dr.Latimer still has not called my sons doctor yet? I think I might go try to see my sons doctor today, to see if possibly he will prescribe the months Prednisone. I am going to try anyways. It might be a waste of time but I feel like I have to try. My son is 8 years old and weighs 63 pounds? Anyone have any suggestions for dosing? I am sure that my sons doctor might know but, I just would like to know what the dosing is like for a months time?, Thanks Char...
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Dr.L office said she does not work on Mondays and Wednesdays. So I don't know if she'll call you. I am still waiting for her to call my sons doctor
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I asked Dr.L office if there was some reason if Dr.L could not work with my sons doctor because where in a different country. Her office said no, there's not a problem. So I asked what's the hold up, I got again from her office , I don't know. My sons doctor tried calling Dr.L but she hasn't called him back. This is taking WAY to Long!! I am thinking if she does not talk to my sons doctor by this week, I am asking for my money back and I'm calling to set up a phone consult with Dr.K. My son needs the right treatment, waiting around is getting us nowhere!!!
OOps, I meant to say, we were getting nowhere as in getting the months steroid and more antibiotics. So far, the Azith has helped my son focus better, arm tic decreased, eye rolling is a bit better, sit still a bit better. But he still has a hard time making decisions and gets frustrated about things easy. I am scared that once the Azith is stopped, my son will backslide. I doubt that my sons doctor will prescribe more antibiotics without talking to Dr.L first. So here I sit waiting and being frustrated!! Char..
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I asked Dr.L office if there was some reason if Dr.L could not work with my sons doctor because where in a different country. Her office said no, there's not a problem. So I asked what's the hold up, I got again from her office , I don't know. My sons doctor tried calling Dr.L but she hasn't called him back. This is taking WAY to Long!! I am thinking if she does not talk to my sons doctor by this week, I am asking for my money back and I'm calling to set up a phone consult with Dr.K. My son needs the right treatment, waiting around is getting us nowhere!!!
Char..
7 years old boy has TS, Mom is heart broken
in Tourette Syndrome and Tics
Posted
Just wanted to let you know your not alone. I am going through a similar situation right now. If you want to chat PM me. Char..