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Help... Azithromycin for PANDAS.... Dosage etc....


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Hi,

 

I have been sending messages to some of you out there. Thank you for responding. I have a 7 year old son who had strep many months ago and it got treated with amoxil, and then he had a fever and sore throat 2 few months later, and not realizing how serious strep can be, I didn't go to the doctor, and treated his sore throat myself with warm baths and garlic. Mistake. Actually, his pediatrician told me that he would show positive for strep no matter what, because he had it recently, so it didn't make sense to try to treat it. She told me to look out for red spots. I honestly didn't really know what that was supposed to look like, since I had just gotten used to looking for the white spots as a sign for strep.

 

Well, that whole time just before he got sick was a very stressful time for him. I had put a lot of pressure on him to do a lot of stuff. It is just that a lot of things seemed to have come with that time, such as piano composition, piano recital, speech contest, many difficult liturgy readings in front of the school, spelling tests, and pressuring him to go as far as he could with reading so that he could move to the highest level possible. Now looking back, I feel so sad that I expected so much from him. He was also involved in so many extra curricular activities that demanded a lot of his time, and demanded that he practiced a lot and performed in front of audiences. Plus...he had been going to bed late, so his immune system was down for sure. I have all of this on video tape. I have him doing his speech, his drama and choir performances, his piano performances, his chess competition, and most of all.. all of the practicng that we did at home for his readings that would be done in front of the school. He would often tell me to stop making him practice, but I wanted him to do it all perfectly. It is so sad for me to think about the pressure that I put him through to do his best at the time. Well...he got sick, and then he started turning his head to one side. It was just so odd. He was on top of the world, winning awards and all that stuff, and then...suddenly, he turned his head. I noticed that he would do it when he felt stressed. Well...believe it or not, he just kept getting sick, and I kept requesting homework to do with him at school. He should just have been resting. I would send him to school even though he wasn't 100% because he would have a spelling test or because he had to do a demanding/hard reading passage in front of the school. I should not have done that. So, of course, he would be sick again, and stay home again. This went on the whole month. The turning of the head would only happen when he was reading, or studying for spelling. Plus, I also noticed that he was grimacing his face and moving his eyes up in the air at night when I read to him from the mystery book series that he used to love so much. I totally noticed a difference because he used to be so excited about putting together the clues, and figuring out who did it etc. Then..with his change, he started moving his mouth, rolling his eyes, and turning his head whenever some part was remotely scary when I was reading to him just before bedtime. Whenever I asked him to read a line or two, he would do all this even more! My child had totally changed.

 

Then just under two months later...his whole world changed. He was shrugging his shoulder every 6 seconds, turning his head, touching one ear and then the other, and still doing those things at night in bed when I read to him. The shoulder shrugging was very obvious. The turning of the head was really obvious one day when we went to see a live play, and that's all he did the whole time. My heart sank.... I was devastated. I went to see his pediatrician after 30 days of this intense behaviour, mostly because she was on vacation. My son was suddenly afraid to go on the elevator that took us up to her office. This was different. He also did not want me to leave from his programs, like..he wanted me to be outside waiting for him, which I always do. However, suddenly he wanted to make sure that I would not leave. Different. This I didn't mind. The shrugging, the huhhh sounds that he makes with his mouth closed, the turning of the head, the mouth grimacing, the eyes rolling up, all that... I mind. I want my child back! I want every child to be OK! I only wish good things on every child.

 

I have been in a nightmare for a while now. I feel so lost. My friends don't really understand what I am going through, probably because all of my mommy friends also put a lot of pressure on their high achieving kids, so they just didn't believe what I was telling them. I suddenly felt embarrassed. I cried every day. I couldn't function to the point where my husband actually said "where is my wife" and I told him that I was totally depressed over what has happened to our normal child. He said that we just had to accept him and let it go. Maybe I was devestated because I kept reading up about things, and felt frightened about it all. Maybe I am just closer or more connected to my son, and feel the impact more. Maybe I am extra sensitive. Maybe I feel devestated because I only have one child and cannot have any more. Maybe I feel guilty. I just kept wishing that I could go back in time. I just wanted God to wake me up from this horrible nightmare.

 

One thing for sure...I have become more humble. I now see mothers, and I see the world differently. I used to want my child to do the best, and know a lot, so of course, I hooked up with mothers who also felt the same, or had the same philosphy. So...bottom line, we over-programmed our kids. I have friends who made even more demands on their children than I did on my son believe it or not, by forcing them to do competitive stuff. Anyways... So when I see children who have some kind of disability, I now cry inside for the children and for the mothers. I say a prayer for each child, hoping that they get better. I am crying as I am writing this.

 

Anyways...So I read the many posts about pandas, and it appears that I missed the boat really. It seems that we are supposed to put our kids on antibiotics within the first month of them getting all of these things related to pandas. It seems that azithromycin, augmentin, and amoxicillan are popular ones given. I had a hard time trying to get azithromycin for my child....a really really really hard time. Unbelievable. I finally FINALLY got his doctor to write a script for 5 days of azithromycin at 7.5 mg. My son weighs approximately 50 pounds. After looking at the board, it looks like the kids are supposed to be on azithromycin for many days, not just 5. One mom said that she saw changes in her son after 15 days. I am not sure if they stay on the same dose for many weeks, or if after the first 5 days they go on the prophelactic (sp?) dose after that. That is question number one. I was able to get another doctor to prescribe another 5 days of the same stuff at the same dosage. I am wondering if this is how it all works? Do they stay on the same dosage for one month or so, or do they only do a higher dose the first 5 days, and then receive a prophelactic or reduced dose after that?

 

Please help....

I will be in contact with the Dr. K from the States about pandas, but until then, I am hoping for some direction here. Dr. K has requested blood test results.

 

My child's pediatrican is away. This is a holiday in Canada, and she will not be around until Monday. Today is Thursday. She gave him 5 days on Friday until Tuesday. I had some left over so I gave him the same dose on Wed. I got a script for another 5 days, so Wed to Sunday, until he sees his pediatrician on Monday. Any direction on how this works and what I should ask of his pediatrician would be really helpful/

 

I prayed and pray every day.

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Don't be so harsh on yourself. Strep made your child sick not you. Many of us have not found the help we needed till years later. You seem to be on the right track very early. With the right treatment plan you will have your child back. Praying with you..

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I have to admit, I was shocked when I read how much you pushed your seven-year old son to achieve. Really bewildered! BUT you must NOT let yourself get overwhelmed with guilt - you must be strong to care for your son. You must not shrug it off and accept that as your son. You must be the fighter and disregard what other people might say or think. Mothers know their kids. Mothers know when they change and mothers (dads, too!) fight to restore their kids health, happiness and well-being. I think that almost everyone with a PANDAS kid can find a reason to feel guilty. I myself should have persisted against the doctors before, or had time/diligence to find a DAN doctor before now. I went over 5 years knowing "something" happened when my son was about 18 months, but just got the PANDAS diagnosis about a week ago. I look back through my son's medical history and lament over numerous things. But I spend much more time looking/searching for ways to help him!

 

I think our doctor is much more reserved with the azithro dose that most that I see on here, which I am concerned about. She first prescribed 5mg/kg body weight, which I think is not enough. The zithro insert itself doesn't reference 5mg/kg dosing for kids in our age and range - the recommended dosages start at 10mg/kg. I also read that a double dose is used the first day and then regular dose subsequent days, but all of those are 3-5 days usage only. Our doctor prescribed 2 full weeks of zithro of daily doses, then weekly for 3 months.

 

I, too, would like to hear more from others as to what dosing amount and schedule that have found effective, as well as what has not been effective.

Interestingly, I also read in the azithro insert that pH affects the performance of the antibiotic. Anyone on the board here testing their child's pH levels? I know I run acidic normally, but my son has fortunately been on the alkaline side when I've checked him lately.

 

Good luck, I have a 7 yr old son as well!

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Hang in there and keep reading--It sounds like you are on the right course of action --

Have you seen the website:

 

www.pandasnetwork.org

 

It is a wealth of information on what parents have found to be helpful in treating PANDAS. You have only done what you thought was the right thing to so, that is all we can do--hold steady now and continue to pursue wholeness for your child.

 

IF it is PANDAS it will respond to the treatments I believe--

MANY of us have our children back from the "horrors" of PANDAS thanks to the sharing of "what works".

 

All the best, you have been through alot, I am sure it is scary--hold steady.

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We live in the heart of silicon valley - where the worlds top engineers and entrepenuers come to compete. There has been an epidemic of teen (and even pre-teen) suicides in several communities in our area. I was lucky enough to see a screening of "Race to Nowhere" which is suppossed to be shown in September on Oprah's new network. Don't miss it. Every parent should see this documentary. Check out the trailer and a little info on the movie at:

 

http://www.racetonowhere.com/

 

A teacher of ds took an interest in my son before he was diagnosed. In her former life she was a highly accomplished multi-degreed professional. She left that world to become a fourth grade teacher. She is older than me and has two children, early 20s, one of whom had anxiety, OCD, depression from middle school - college years. She still struggels, but is much better. This teacher is a very smart lady and has worked with hundreds of kids and families, and sucessfully raised two very different children.

 

She says I should be greatful for this pandas experience - that it will make me grow as a parent and a person. Not greatful that my son is sick obviously- but greatful that I now know better than to judge another parent, and have empathy that could not possibly have without this experience. Perspecitve. If I had two kids like my older one, I'd never have that. She is very wise.

 

I think we need to be VERY careful with our kids - esspecially the pandas kids - anxiety goes hand in hand with depression. Our society and academic system puts so much stress on them, they don't need any more from us. I'm a very competitve person. So I have to keep myself in check. My kids have their own styles, I respect and support them. And try to keep it all in perspective. You are lucky you got this wake up call when he was 7.

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Sweet cheeks mom-

 

The first and immediate thing you need to do, is GIVE YOURSELF A BREAK.

 

You did not cause pandas- you could not have prevented it. Pushing your child does not cause pandas. I have/had a high achiever (and a not so high achiever), and they both got pandas. I pushed my high achiever because she thrived on it. Performing with a prof ballet company, class representative, homework, piano, etc (she is 10 now). She loved and thrived on the attention and accomplishment. Then she got sick (with pandas) and her whole world changed. My priorities changed, appropriately. New priorites were happiness, eating, sleeping, etc. Homework, school and ballet went out the window. BUT, it is not forever. You need to channel your drive into aggressively treating pandas, and your son will be well again. He will achieve what he did in the past, and more. You will be mellower. My daughter is now doing really well. She is healthy, and starting to embrace life and challenges again. I am slowly and gently pushing her back into the world, and she is thriving.

 

 

Her sister was actually the first one diagnosed. She was overnight, changed, in crisis (ocd). When I finally learned of pandas- I sat up all night reading this forum. Then I spent every night for a week crying myself to sleep. My dh didn't get it. He also wanted me to move on, and not be so upset. I think many families go through this. But, in the end, he eventually "got" pandas, and we are on the same page. My little one is also doing well now.

 

It was a rough year dealing with both kids getting pandas- but we got through- and will get through in the future. My kids ( and yours) will be okay. You can do this, you will get your baby back, it will take some time. Dr K will help you.

 

Your post really hit me hard- you are an awesome mom- you will adjust your expectations for now. You will be there for your son. You will get through to your dh. Take a breath, line up one or two friends or family for support- lean on them, lean on the forum.

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Wow, that is quite a post! So we have a little girl, now about to be 9. I used to worry a lot because she suffered for so long, undiagnosed and untreated. But she is doing really well right now, and we are enjoying the now, and hoping that we can deal with whatever else might come our way. I went to counseling for myself, when my daughter was diagnosed with Agoraphobia, Panic Disorder and OCD at age 6. I went back again when I was exploring PANDAS when she was 7. I needed a lot of support myself, and I needed someone to remind me to trust myself - especially when I was challenging what most doctors were telling me I needed to accept. I had more than one doctor suggest that I had a "control issue". Well, I did - I wanted to find a cause of her illness, not just treat the symptoms! You may want to think about getting someone to talk to yourself. Many parents with children that have disabilities or illnesses find that it is helpful to care for themselves both physically and mentally.

 

It is hard to be a PANDAS mom - you'll learn to trust yourself, and to FORGIVE yourself - because you did NOT cause this disorder. You will make mistakes, that is normal - but after PANDAS, your priorities do change -what you are feeling is something that all of us experience to some degree. You do realize what is really important in life is joy. That's it - pretty simple. When our children have joy in their lives, then they can do anything. We don't have to pressure them - they will choose well. And that is wonderful for both the parent & the child! We have all been where you are, to some degree or another. I remember the night that I said to myself "I am the parent of a child with special needs. How did that happen?" I cried for hours. I felt so blindsided. It's hard to deal with on your own.

 

Our child likes to do a lot as well. When she has PANDAS, that all goes out the window. But right now, we can't stop her again - she wants to do it all. It gives her joy, so that is good. To be frank, I was a pretty relaxed mom in terms of pushing her even before PANDAS. And yet, my child has PANDAS. I was proud of my parenting - and yet, my child suddenly began having PANIC attacks and was afraid to leave the home. She had trouble eating and seemed depressed. She had severe OCD. Every therapist that we went to seemed to be looking for "what was going on at home". I was at a loss as to how this could have happened. It is very humbling. Whether you push your child, or baby your child, PANDAS can come into your life. Your son, when he is better, will have the opportunity to choose what to go back to and what to give up - he'll have the chance to find the things that he loves.

 

You are on a great path with Dr. K, and there is not a magic window for treatment. If you have abx for now, that is great. Do try to keep him on abx if it is helping, for as long as you can. Someone here will suggest a dose for you, but you may not be able to get your pediatrician to agree. That is a real bummer short term, but since you are already hooked up with Dr. K, relief is in sight. We love azithromyacin! For now, that is the miracle for us - we have no promises for the future, but we are glad it is working now.

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ooops almost forgot to answer azith question. Our ds is 11 years, 95 lbs. 500mg azith 1/day for two weeks, followed by 250 mg maintenance dose- prophylactically. I plan to keep him on that until he is 18, if I can!

 

I'm glad you found out what was going on - and highly encourage you to confer with pandas expert. I am finally going that route after 9 months of doing it on my own (we at least had a doctor giving us antibiotics and a steroid burst)...but we've met with gastroenterologist, psychiatrist, integrated medicine doc, neurologist, immunologist...and of course or pediatrician, who is just starting to get it. This is 9 months with a diagnosis - before that we had several months not knowing what to do. All of them had lots of blood work, except neurologist - he was a complete waste of time and $. Just did cunningham tests to - that is another thing I wish I did earlier.

 

I'll probably have to do more blood work after the consult with Dr K. Hope not, ds is NOT fond of going to the lab! I think the 11 vials that were taken first time went was not the way to start off...I think I could have avoided a lot of frustration and pain for my son by going directly to DR K.

 

Good luck

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Sweet Cheeks Mom -

First off - I am sorry that you are going through this and I am sorry for what you have lost. Your child has changed, and you never expected to be dealing with this. Even those of us who have been dealing with this from infancy never planned to deal with PANDAS. It is a terrible shame.

 

You clearly are a Mom who is good at setting goals and organizing and structuring her child's time to help him to reach those goals. These will be very good skills for you over the next weeks and months.

 

You should find a PANDAS specialist to help you through this. You can use list of "doctors who have helped" in the pinned threads at the top of the forum. You can ask people about their experiences with different doctors and folks can send you a PM about different docs. A PANDAS doc will know the right questions to ask and will know how far to push with antibiotics.

 

You should continue to read the forum daily. I learn so much from the brilliant people on this forum. It has truly been a blessing for us.

 

I also recommend that you start charting your son's behaviors. Jot down some notes everyday of the behaviors you saw and rate them on a scale of 1-5. Buster has a neat charting system that you may find as you make your way through the forum (I never can find it when I recommend it!). Journaling on the behaviors can help you to see patterns over time.

 

Best of luck as you make your way through this. Let the folks here know if / how we can help.

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Hi!

 

Don't beat yourself up. In a way PANDAS is a blessing in disguise in that it makes you really appreciate the little things. I was never a hard driving mom to start with ....but having your kid ill and unable to function really puts things in perspective. That is a good thing!

 

Have you already seen this on IVIG for PANDAS in Canada? http://www.latitudes.org/forums/index.php?...5&hl=canada

 

Our dd started Azith. just over 2 years ago. She was about 43 pounds/almost 8 years old and got 250mg/day. It took about 2 weeks at this dose (given with 200mg Advil daily) to see a change in OCD, although mood improved a bit after 5 days. Now she's 62 pounds/almost 10 years and still on 250mg/day, although a few mo. ago we did bump her up to 500mg/day temporarily for about 30 days.

 

She's had 2 rounds of IVIG (2gm/kg each time). The first time was Aug.2009, and again May 2010. We plan to keep her on some type of antibiotics until at least age 18.

Edited by EAMom
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Hi,

 

Thanks for responding.

 

Is your daughter on that liquid type of azithromycin or pills? You said that she is on 250 mg/day. My son is on the liquid azithromycin that is initially in powder form and then the pharmacy adds water to it in order to change its consistency to a liquid form. The box states that there are 200 mg/5 ml. He is on 7.5 ml. Does anyone know if that is about the same amount?

 

You said that the ocd symptoms subsided. When did you start seeing results with the tics? What type of results did you see re: tics? How long after taking a regular dose did you see results with respect to tics as well, or did your daughter not present with tics? How long after starting the azithromycin did you switch to the maintenance dose?

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Hi,

 

Thanks for writing. Did your 11 year old son who weighs 95 lbs start off on 500 azith for 1 day for two weeks, and then did the prophylactic/maintenance dose daily thereafter? How long has he been on the maintenance dose? When did you start to see changes? What types of changes did you see? What type of things was he initially presenting with that led you to explore help for him?

 

I live in Canada, and just consulted with Dr. K on e-mail. He wants to see my son's blood work. Initially no pediatrician would give me any penicillan. I don't know if his ped will continue when I see her on Monday. We shall see.

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Thanks for writing back. I am also surprised at how much I pushed my seven year old son to achieve. I will now be more relaxed about things. My standards differ now. The school put on a play recently, and the principal was expecting him to play a significant part in the play since he had won first place when he competed against older kids in speech contests, and had been the first in grade one in several things. Well...my perspective now is that my son does not need the extra stress. When I told him about the play, I asked him if he wanted to memorize the lines for the audiiton. He only wanted to do the first line. So, that was it. He did end up getting a part in the play, but a small one where a number of children performed together as a group. Although I knew that in the past I would have wanted him to have done one of the main parts, I now really want him to be normal and not stressed out. He was happy that he was performing a little part with his friends, and he was designated the lead person in that group part, which made him happy. He likes to perform, but I can see that all of the prep work can be quite stressful. I watched the school play, and he was certainly a dynamic kid among his peer group, doing all of these actions while singing. Sadly, I saw that my son was trying to conceal the fact that he likes to shrug his shoulders. That made me sad. He would look at the stage in order to get that shrug in here and there. I believe that he is aware that other people notice it.

 

Like I said, I just want my normal child again. No, I will not put him into many things. I will do those things with him, and enjoy spending time with him 1:1. We did a lot of that before, but I also added the extra programs. I guess that I need to have a new friendship group too, who also is more relaxed.

 

You said that your doctor prescribed 2 full weeks of azithromycin and then weekly for 3 months. I take it that the weekly dose for three months was considerably reduced. Is that correct? When did you notice changes? How long did it take? What kinds of changes did you notice?

 

I didn't know about the ph level affects the performance of the antibiotic. How do we check their ph levels?

 

Wishing your 7 year old all the best too!

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