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Feeling a little discouraged!


Char
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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..

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Char- I am sorry- that is so frustrating.

 

Dr L is really compassionate- I am sure she will follow through. (I would continue to be a pest, though). I think she is really busy with pandas these days....

 

Where are you located- is there a possibility of a local doc- did you email Beth Mahoney?

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dcmom,

Hi, I know Dr.L is very compassionate, I found her to be very compassionate and helpful when I had a phone consult with her. I just wish she would call my sons doctor. I live in Canada so, there is not alot of help here for children who have Pandas. I guess I feel discouraged because I want to get my son the right treatment.

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We're not working with Dr. Latimer, and our experiences have been different, but I can definitely sympathize with how you feel. Ever since this started for us in June I've felt like I'm swimming upstream. I'm working as hard and as fast as I can to help my son, but the progress has felt so SLOW. There is always some delay, and I feel like I'm always waiting for something (or someone). It's frustrating.

 

I'm sure she will get back to you soon, but if I were you I'd continue to be a "squeaky wheel."

 

In the meantime, have you tried to have a conversation of your own with your doctor? Maybe you can tell him/her that Dr. Latimer is planning to call soon, but is very busy and here is what she is going to tell you. Can we just move forward and Dr. Latimer will call soon to confirm what I'm saying.

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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...

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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!!

 

It seems like a reasonable request to me.

My doctor called Dr. Latimer without my ever having seen her or having consulted her...she returned his call the same day. Would your doctor be willing to call her? I don't know if that would work better, but seems like its worth a shot.

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Tics took the longest to go away when we first disocvered Azith in June 08. Mood started to improve at 5 days. OCD/anorexia took 10-14 days to improve significantly. Tics took 6-8 weeks.

 

The good thing for us is that tics were really the least of our problems (OCD/mood/anorexia was)...so the fact that they lingered was interesting but didn't concern us greatly.

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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...

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Our dd gets 200mg ibuprofen (54 pounds) so you could at least do that. You can give it every 6-8 hours for a few days, to see if you notice a difference. (This is the same dose you'd give if your kid was sick with the flu etc.) Long term, you might want to give it less frequently. Make sure you give it with food.

 

If you end up doing steroids, you should stop the Ibuprofen due to possible stomach issues.

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Could there be some odd reason she cannot consult a doctor in a different country? It's just bizzare. She consulted with you on the phone, agreed, then this. Have you emailed Dr K? I'm sorry but if she cannot follow through on the phone call, she should refund your money.

 

As for Ibruprofen, some (including myself) find that it brings down enough inflamation down on the basal ganglia to see some improvement in symptoms. As for dosing, I would suggest calling your dr or myabe someone else on here can advise you. The bottle I have says one thing, but the dr said the bottles are conservative and I can give my son an extra 1/2 tsp than what the bottle.says. My son only weights 43 pounds. He takes 2 tsp.

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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!!!

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