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

[TessaKrista]

Thanks Tired Mom...

 

It is hard not to be harsh on myself. Like all parents who care for their children, we only want what is best for my child. Sometimes we make mistakes, thinking that we are doing the right thing.

 

I am hoping that I am doing the right thing with the azithromycin. I don't know when we are really supposed to notice huge changes.

 

Thanks for the prayers...

[TessaKrista]

Thanks for the website. I might have come across it, and I might not have. I don't really know. I have searched and searched so many things, that I am now trying to sort it all out. I appreciate your input.

 

You said that IF it is PANDAS then it will respond to treatment. When should we see changes? What is the typical time frame when changes occur? Do parents typically see a transformation after the first 5 days, two courses of the azithromycin, while the child is on the maintenance dose? One parent said that she saw a change after 15 days, another wrote in that she saw a change after 11 days. Is that the norm, or does it vary?

 

When do we pursue a different penicillin/anitbiotic?

[TessaKrista]

Yes, that person you know is wise.

 

I am also an accomplished and muti-degreed professional. I have learned to take it easy....I am learning to take it easy. I am learning how to enjoy relaxing with my child, instead of running around driving him to various places. I have learned to love all mothers and not judge, because we are all at different places in our lives, have gone through different experiences, and do what is best. Through this experience, I now view mothers with children with disabilities with the deepest deepest love. I love all children. I want what is best for all children. I want parents to be happy.

 

I had my child when I was 36 years old. While I was pregnant, I could not see myself being at home for the one year maternity leave that we get here in Canada. But...when my baby was born...oh my...did I ever fall in love with motherhood! I fell in love with motherhood so much, that I stayed home with him during his formative years. I thoroughly enjoyed being what they call a "work at home mom" (WAHM). I would teach a few college courses here and there, but only the ones that were offered in the evening (3 hours per week), and then as he got older in kindergarten, I taught 2 courses during the day, (6 hours per week), while my husband---who is also a professor--- was with our son.

 

I put a lot of energy into this little boy, as I am sure all of the people who post here have done. I have totally enjoyed being a mother to this little boy. I put even more energy into my son than I did into my career and education, which believe me, was a lot. I only have one child. That's it. I believe that we all do what we believe is best, and then we learn over time what is the best for our child(ren). I want my son to be happy. I want all children to be happy. I want parents of all children to feel proud, not sad. I wish that all children could be healed. I really really do.

 

You said that you "think that we need to be VERY careful with our kids - esspecially the pandas kids - anxiety goes hand in hand with depression." Do you mean that this is a life-long thing that needs to be constantly watched/monitored?

 

Yes...I need to remove stress from my child's life. I don't want him to be anxious.

 

Thanks for writing.

[TessaKrista]

Thanks to everyone who wrote. I am now wondering about the possible side effects of azithromycin and I am wondering if everyone takes probiotics with the azithromycin. I was reading about the possible side effects on the following sites including clostridium difficile-associated diarrhea:

 

 

http://www.ncbi.nlm.nih.gov/pubmed/7594392

http://www.healthgrades.com/drug-ratings/d...rogen%20citrate

 

My 7 year old has been taking the azithromycin for 7 days now, and is complaining that he feels tired, has a huge headache and tummy ache. He hadn't had a bowel movement in a few days, and finally had one today. Any thoughts? When are the side effects serious enough to warrant going to the hospital?

 

Azithromycin side effects...when are they serious?

[TessaKrista]

When did you notice that your 11 year old son was improving? What did improving look like? What did you see differently? Sorry if I already asked you. I have been trying to navigate my way around this forum at different times, and am not always sure who I already sent a message.

[datagirl]

Hi, my nerves were frazzled when I wrote the other night, so I hope I didn't come across as harsh. I can't even imagine doing so many activities, because with three boys and as a single parent for 5 years, I had more than pushed our limits having all 3 of the boys in baseball. The baseball schedules here are rough....nights when we were at the ball field for games until after 9pm on a school night! We had baseball 6 nights/days a week, and often overlapping games and practices in different places. Baseball was rough on my 7yo...in fact he so badly requires ADHD med during the day and that would wear off by practice time or game time. When the medicine wears off, or before it starts working in the morning, my son is almost non-stop verbal (and hyper to go with it), and loud at that. It could be complete nonsense over and over. Since my son has been symptomatic for so many years, I've never been able to seriously consider all the activities I'd like to be able to see them do. I am glad you got to see your son in the play! I decided to not even stress my son out with it this spring - just played hooky for the play, pretty much. It was just too much stress for him and thus the family.

I know that all that dedication you showed to helping your child achieve will be just as useful and well served as dedication in helping him to heal and be the best he can!!

 

We have just started on the zithro, so I am still in the "waiting for results" stage!! Boy, I hope he gets some relief soon! I also took him to a chiropractor yesterday. I keep digging for root causes. His immune system seems to have been dysfunctioning from birth basically, with prevalence of ear/sinus/eye related infections and issues from month one. Well his neck was really out of alignment, which can affect the CNS, so is is going to get adjustments several times a weekly to try to correct that and rebuild his neck muscles.

 

We have been on the zithro for only 3 days - I will let you know when/if I start seeing results. The doctor didn't indicate a change in dosage for the maintenance, just a change in frequency to once weekly. I'm not sure if this is the recommended or best maintenance routine, though.

 

I am concerned about the potential for C. difficile. Did you know that CDAD (clostridium difficile associated diarrhea) can present up to two months after taking zithro? Better to be safe than sorry if you suspect issues, because then I think you will need to get another type of prescription for that. Personally, I would absolutely recommend a high-quality probiotic along with any antibiotic routine. My doc prescribed 20 billion CFU, but I know others recommend more. I personally avoided a probiotic with streptococcus haemophilus in it.

 

Also, personally, I think activated charcoal pills are one of THE BEST things I've ever discovered! It is great at binding nasty things to it for elimination from the body. I have taken it when a stomach illness has started to hit, and when I thought I was going to be violently sick for days, I was able to nip it within hours, for the most part. Must be careful though because it will absorb the good stuff to, so probably best to take at night well after any/all meds/supplements. My DSO also took it when he was very sick with what he thought was food poisoning and got better that day.

 

As far as checking pH levels, I purchased strips at a Health Foods store. I don't know how valid the urine pH test is though, and haven't heard anyone else mention it. Vaxa makes a Buffer pH product that I sometimes take...and I notice I feel less achy in the morning when i have been taking it and my pH is less acidic.

 

Let me know when you start noticing improvements! We've been on zithro a few less days than you are, and I am anxious for results! I hope your little guy feels better!

[TessaKrista]

DC Mom, thanks for your note. Although pushing our children doesn't cause pandas, I suspect that some children are more likely to get pandas than others for whatever reason, likely some genetic or environmental thing that predisposes them initially, and if we add stress which can cause some level of anxiety for them, and lack of sleep to the equation, then it could just be the thing that pushes them over. I don't know. I see what you are saying though, looking at your two daughters, who both got it, and only one was really challenged because you knew that she thrived on it. My son also thrived on the attention, but the energy that it took to get them to the performance state, was obviously a lot. I am still trying to understand it all, as I am sure everyone on this board is as well. Even the doctors are trying to sort things out.

 

I wonder if this thing could be prevented. I mean, when kids get sick, perhaps we should revert to the protocol from the olden days, which is to give antibiotics...just in case. Yes, there are problems with antibiotics. I know. I think that we need to warn people about the severity of strep. My son's teacher told me that another teacher died from flesh eating disease which is somehow connected to her having strep. My sister in law told me that all of my son's older cousins had issues with their throats, and one cousin continually went on antibiotics for 6 months at a time because he was always sick. Then he finally got his tonsils out, and things were good. She also told me that her friend's daughter got these odd movements after a strep infection when she was quite young (don't know the age), was treated with some kind of penicillin on a maintenance dose for one year, and many many years later (she's now 19) is doing fine.

 

You said that your daughter got sick with pandas and her whole world changed, and your priorities changed. I am hearing that a lot from others. You new priorities sound like my new priorities: happiness, eating, sleeping, etc. All of the old things also don't matter to me. You said that it is not forever. What do you mean? It doesn't seem that it resolves itself for all children, but for some.

 

You said that your daughter is now doing really well. Do you mean that she is back to the way she was, or that she has improved considerably? What protocol did you follow? What seemed to help? How long did you see any changes after starting her treatment?

 

You are a real super mom. You had two children go through this around the same time. It sounds like you feel so much stronger, wiser and calmer after this whole incident. I am still in anxious and depressed mode, but less so than before. I am moving into action mode.

 

Thank you so much for writing.

[EAMom]

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?

 

Hi Sweet Cheeks,

 

We've started on the 250mg pills (yes, she learned to swallow pills at age 7.5 years when she had her big pandas explosion!) dose and stayed there for the past 2 years. However, her dose/pound has gone down slightly just b/c she's gotten bigger (from 42 to 62 pounds). The couple of times (in the past) when we've tried to decrease the dose, we've noticed an increase in symptoms, so we're not in a rush to change things right now.

 

It sounds like your son is getting 300mg/day (if he is on 7.5ml of 200mg/5ml).

 

Have you tried adding in Advil (aka Ibuprofen or Motrin)? You could do 200mg 2-3 x daily for a few days to see if there is any improvement. Our dd is on 200mg once a day long term (the immunologist thought this would be a safe long term dose).

[EAMom]

For us tics took the longest to go away, but they were a minor symptom for us. Dd's big problem was OCD/anorexia/mood issues. Mood started to improve (barely) after 5 days (we noticed she was yelling at us less). OCD/eating improved after 14 days ("decided she wanted to get better" and started eating again.) Tics took about 6 weeks to go away.

[TessaKrista]

Thanks kimballot for the post. You said that it is a good idea to keep a chart/notes on the behaviours that I see and scale them. Thanks for the suggestion. Do you find that helpful for your own notes and for the doctor? Do you mean, we include when our children's behaviour improves during what activities and when they get worse with other activities and food products that they eat? Will doctors respond to this information, or is it more useful for us to keep track of for our own benefit?

 

I don't have a pandas doctor here, but I did send Dr. K an e-mail and he asked me to send him the blood work. My 7 year old son's pediatrician initially did blood work when I told her that he was going through something and I wondered whether it could be pandas. She said that pandas is a fad, and it is controversial. I will get a copy of the blood work and learn all about the different types of results and blood work-ups that exist. I know that she said that his blood work showed that he was eating healthy, and that his titers were high, but he tested negative for strep. This was a few months after his illness. I don't know what type of blood test she ran, but I will find out next week. Dr. K was very specific about what he needed. Since I live in Canada, it looks like I will have to go visit him or consult with him in some other way.

[EAMom]

I don't know if anyone has had serious side effects on Azith. on this forum. One mom did have a problem with hearing loss (scary I know) but her child was also on Naproxen (aleve), which was the more likely culprit.

 

Most kids on this forum are on probiotics.

 

I understand C. difficile can happen with any antibiotic, but Azith. isn't the most common cause (and most of these cases are in nursing homes, etc.)

 

Another popular antibiotic on this forum is Augmentin XR.

 

Sometimes Clindamycin is used in tough strep cases, but I think that rx has more problems with C. difficile (?? not sure) and the liquid form (at least in the US) tastes REALLY NASTY and has to be given 3x daily.

 

You should mention your son's symptoms to your doc just to be safe.

[TessaKrista]

He weighs 52 pounds or 25 kilograms.

 

How did you figure that out? Yes, 200mg/5ml dry form, and 7.5 ml/day.

[EAMom]

Thanks kimballot for the post. You said that it is a good idea to keep a chart/notes on the behaviours that I see and scale them. Thanks for the suggestion. Do you find that helpful for your own notes and for the doctor? Do you mean, we include when our children's behaviour improves during what activities and when they get worse with other activities and food products that they eat? Will doctors respond to this information, or is it more useful for us to keep track of for our own benefit?

 

I would also strongly rec VIDEOTAPING behaviors/tics/movements since they might not be present when you actually go in to see a doc (or they might go away).

[EAMom]

I should add that our immunologist felt that 250mg/day was a safe dose for our dd to be on for YEARS and that most peds are unnecessarily fearful of antibiotics.

[kimballot]

Hi - Great question -

 

Many of the folks on the forum (if not most) seem to use probiotics. The type / brand / dosage seems to vary considerably. If you type "Probiotics" into the search you will find some interesting discussions on the use of probiotics.

 

It seems that some kids do well with high -doses of probiotics while others need lower doses. It seems to be trial and error for the most part.

 

Most people recommend separating probiotics from the antibiotics, as ABX can reduce the impact of the probiotics (so, for example -take one in the morning and one in the afternoon).

 

The problem is that antibiotics kill the "good" bacteria as well as the "bad bacteria". This leaves room on internal surfaces (like the gut and sinuses) for fungus/ yeast to multiply in the absence of good bacteria. Probiotics replace the good bacteria, so it helps to keep things in check.

 

Some people also take antifungals to counteract the effects of fungus / yeast (like diflucan, which is strong, and nystatin, which is less strong)

 

Also, most antibiotics only kill "aerobic" bacteria. In addition to aerobic bacteria and fungus, there is anaerobic bacteria in your gut. This is normally kept in check by the aerobic bacteria and fungus... but (of course) once we start removing aerobic bacteria and fungus, there is lots of room for the anaerobic bacteria to overpopulate (especially if we are not using probiotics). Overpopulation of anaerobic bacteria results in C difficial - which is generally seen with diarrhea. Stool stamples are usually done when kids on antibiotics have continued diarrhea (not just soft stools - real diarrhea), to test for C dif.

 

Some people take anaerobic antibiotics like flagyl for C dif. Here's a good website for that : http://www.cdiffsupport.com/aboutcdiff.html

 

Some kids are put on flagyl or other anaerobic antibiotics even if they don't have C Dif - like some kids with persistent sinus infections or kids with parasytic infections.

 

So - I would say that if your child is on antibiotics it is good to use probiotics, it is good to let the doc know if there are signs of a yeast infection (there's lots of info in this forum about that if you search it), and it is good to let the doc know if there is diarrhea that lasts a long time.

 

 

Also, if your child is having problems with constipation, be sure to increase fluids and fiber.

 

Hope that is helpful and not confusing or too much info!