Dedee

So my daughter started to really go down hill several months ago when we switched her antibiotics to septra and amoxicillin (treating lyme and mycoplasma). I assumed it was herxing as she has done this before when we just jumped in there with full strength dosing straight off. So I consulted with the LLMD and we agreed to cut back on the dose of both and bring her up slowly to cut back on the herx reaction. We worked on this plan for a few months but nothing really improved. She continued to flair with horrible mood swings, defiance, depression, raging, etc. Finally, I decided I didnt think that it was a herx because it was lasting way too long. So I talked to the LLMD again about the possibility that my daughter can't tolerate Septra since she had never taken it before and we know she has methylation issues. So we stopped the Septra (continued the Amoxicillin)two weeks ago. Well, immediately her mood starts to improve. There was less defiance, less crying and raging. Just better over all. She still has her OCD and anxiety but the horrible mood swings etc had stopped. So just when I thought I had it all figued out, the other shoe drops. The LLMD told me to give her a week or two on just the amoxicillin....going gradually up on the dose till we are at the optimal dosing then call back and we will talk about what we are going to add to it. So the last couple weeks she starts complaining with lots of physical things. Constant daily complainig with stomach ache. Going to the nurses office at school every day. Also, says she has a terrible headache everyday. Problems with her eyes, seeing floaters, blurry vision. She is saying when she tries to practice soccer that she gets short of breath and her heart is racing. I feel her heart and it isn't going that fast. Just feels like it to her . Yesterday she complained so much that she thought she was going to throw up that I let her stay home from school. Sometimes she says she feels the throw up in her throat. Thinking it may be reflux, I got some over the counter pepsid yesterday and gave it to her, but it didn't seem to help any. I just don't know what to do......I'm not sure if the antibiotics are making her stomach hurt or if her stomach hurts because of the lyme. When she was little she ALWAYS complained her stomach hurt. Once we started treatment on a regular basis, she didn't complain nearly as much (maybe once a week). Now it's constantly, all day long. She even asked me to take her to the doctor. Her poop is normal. Not currently constipated, though that is frequently a problem for her. I called her LLMD yesterday and left a message but they haven't returned my call and are closed on Friday's. Please, does anyone have any idea what I can do to help this child? Dedee (Sorry it got long)

Glad to hear you have a plan. Hope you see some resolution soon. Keep us updated. Congrats on getting there and back with your sanity intact. Dedee

Oh, I am so sorry to hear that. Lyme is an insidious bug. I know that must be very discouraging. Hopefully you can get things back on course and look forward to brighter days. Sounds like you really have your finger on the pulse of things. It's great the you can identify issues in your daughhter so quickly. Keep fighting the good fight. Dedee

How did your appointment with the LLMD go?

I would love to know this also. We are close to ending our first year of oral treatment. We have had some improvement but not anywhere near where we should be. The only positive is that the Myco p titers have come down to the normal range in IgM but not for IgG. My daughter is still very symptomatic neurologically so I don't think we are making much progress with the lyme or bartonella. She also still has lots of physical symptoms that affect her at school and in sports. I'm sure we will wait a few more months before bringing it up but I too wonder when the IV thing comes into play. Dedee

Give us an update on your appointment once you're safely home. Best of luck. Dedee

Well if they have not been responsive to PANS, I would go ahead and start looking for another doctor. What you want to know is what the IgG and IgM levels are. The IgM shows active infection and the IgG indicates past infection. However, you can still have active infection if only IgG is elevated if you continue to see it rising and not falling. If they are saying it is positive then most likely your son has both elevated IgG and IgM. That most definately causes PANS symptoms. Myco is a stealth pathogen that has the ability to hide dormant in different areas of the body so he doesn't necessarily have to have respiratory symptoms to be carrying the infection. It is also very hard to get rid of. Your doctor will most likely want to give you one treatment dose of Zitromax and that's it. Problem is that it takes anywhere from 3 months to 2 years to clear chronic myco. Most doctors are not up to date on how to treat Myco p. You should find an LLMD. They know how to treat myco. My daughter showed some improvement on Biaxin but it wasn't until an LLMD started her on combination antibiotics that she really started to improve. Do your research. There is much out there by Garth Nicholson. He is considered the expert on Myco p. Don't fool around with a regular doctor. You won't get what you need. JMHO. Dedee

You two can marry if you like but PLEASE don't have kids. No sense mixing those genes. I'm right behind you with the genetic testing. My daughter's results should be back in about a month. I too believe it is the missing link. I think we absolutely must get rid of the bacterial load AND treat methylation but as you said, it's going to be different for each child depending on their particular SNP's. Can't wait to see dd's results. Dedee

We used cefdiner with minocin and it worked very well. After several months on it our llmd switched us to another combo because my dd had been on minocin for a long time and she wanted to try the septra / amoxicillin combo. Whew was that a bust. Come to find out my daughter doesn't do well with septra and after a couple months of total h*** I finally stopped the septra. Now we are just on the amoxicillin. Trying to get dose titrated up slowly to avoid too much herx then when she is where she needs to be with that the llmd is going to add in a second antibiotic. Not sure yet what it will be. I really wish we could just go back to the cefdiner / minocin combo. That was my favorite so far. But then, we haven't tried it all yet. Good luck. Let us know how it works out. Always interested to hear others experiences. Dedee

I would check with the school system. If there is a medical reason for her to be out of school, she should be able to be out without any problem. My son had to have tonsils out one year and we had no repercussins. Really, lots of children are out of school for several weeks. Your child has a physical condition. Your daughter needs to understand this as well. This is her body reacting to an infectious process. Once the infection is eliminated she will feel better. She is old enough to understand the simple explanation. In kindergarten my son understood that when he had strep that the chemicals in his brain weren't in the right amounts and it made his brain think strange thoughts, but when the strep went away his chemicals would go back to normal and his thinking would get better. Sometimes he liked to tell that to his friends and they thought it strange but at least he understood it. Anyway, my point is that you should really try to talk with the school officials about taking the stress off of you and your daughter. This is a terrible position for your family to be in. I am sorry for what you are having to go through. Dedee

Oh my gosh! You poor thing......and your poor little girl. That sounds absolutely horrible. I don't know how you keep from just turning around and going back home every day. When everything started for us my daughte had horrible seperation anxiety and terrible anxiety about school. We had many days where she couldn't go to school and many days we had to force her to go to school. Finally we got a letter from her pediatrician and filled out the papers for home bound schooling. This is different from home schooling. This says your child has a physical condition preventing them from attending school and the school is responsible for sending out a teacher to the home to work with the student. In our case my daughters teacher was going to come to the house 3 days a week for 3 hours after school was over. Turned out my daughter only missed a week of school so we didn't end up utilizing it but it was great to know we had it if we needed. Honestly, I wouldn't worry so much about school right now. It really is not so significant in the grand scheme of things. It's kindergarten, there is no reason why she shouldn't graduate. She should be able to miss a couple of weeks with you working with her at home and still do just fine. Your doctor should be able to give you a note. For goodness sakes, this poor girl is suffering. Once my pediatrician saw how my daughter was acting out in the office one day, she would write me a note for anything. You are working in survival mode right now. You just need to get through this acute episode and when things are better you can pick up where she left off. I really hope things are better for you soon. Keep us updated. Dedee

My daughter also had constant stomach complaints. For as long as I can remember, she complained that there was "throw up in my throat". We tried all types of stuff. She had a scope and they found nothing. She has also been constipated for as long as I can remember. Since treatment, she no longer complains of feeling like there is throw up in her throat. She is still constipated and she does still sometimes complain of a tummy ache but not nearly as much. I think a lot of the GI distress is lyme related. Of course sometimes it is related to antibiotics on an empty stomach. We have to be careful of that as well. Overall though, she is much better than she was two years ago when we started all this treatment. I think once you get this Myco under control you will see some resolution of the GI symptoms. Dedee

I am so sorry. I know how you feel. I am so proud of you for not caving under this pressure. This is a terrible situation to be in. Not many people understand a raging child on a plane (except PANS parents). You are doing the right thing by making a plan. I agree with the previous poster.....I say just do whatever it takes to get through the situation. Block out everyone else and concentrate only on your family. Don't worry about what she wears. It won't kill her. The most important thing at this point is getting her to the doctor. Even if it's in her PJ's. You are doing a great job in this very difficult situation. Keep up the good work. Let us know how it goes. Keeping you in my thoughts and prayers. Best of luck. Dedee

Now I am no expert but I THINK I am understanding that you want to upregulate. I am very interested to know the real answer though if you get it from an expert or if you figure it out differently. I am sure that my son has issues with neurotransmitters and I would love to understand this better. Still waiting for our results. Dedee

It took two years of treating my daughter for Myco P before we saw a decrease in her IgM titers. Her IgG is still elevated but down from what it was originally. There was never a change when she was on a single antibiotic. It took combo antibiotic therapy before she started getting better. An LLMD is the best for treating Myco. This is a very stubborn pathogen and can hide in different areas of the body. You really need someone who has experience treating it. My daughter also had IVIG and she did improve but it seemed to only last a short time so we did a second IVIG which seemed to give gains but it was very gradual. I think it was the underlying infection that prevented the optimal result. We are still fighting lyme but she is doing better. Be aggressive with the Myco treatment and you should see improvement. Dedee

As a mother of one child who is strictly a strep responder and two others who are lymies I can see both sides of this issue. Regardless of which way this goes, I think it is important that we stay respectful of everyone's views. I love this forum. It saved my oldest son's life many years ago and I shudder to think of where we would be without the knowledge, guidance, and support I have recieved here. You guys are the best! Dedee

Well, you are doing great to get him on antibiotics. My only question would be why is the doctor only trying those two antibiotics? Many kids do great with Zithromax, clindamycin, or Biaxin. I think trying a different antibiotic would be your next step. Usually a 30 day trial, but if you don't see improvement within 2 weeks on the new antibiotic, then consider a different one. Also, you need to get an appointment with one of the PANDAS / PANS specialist. It will take about 2-3 months on the waiting list, so get your appointment now. There is no substitute for someone who REALLY knows this illness. You need a true specialist to lead you with this issue. Best of luck. Dedee

Yes, I agree you need to dump the current physician. When my daughter first started this journey we tried a couple of bicillin injections when we thought this was just strep(before we got the myco p results in). It always helped for about a week or two, then everything went back to ****. I could'nt figure it out until we got the myco p results back and then it was more clear. The bicillin didn't work for that. We ended up using some topical antibiotics for a while till I was able to teach her to take capsules because she was so set against liquids. Finding the right combination of antibiotics is key. I think you are most likely dealing with lyme / myco / strep. Once you get in to see your LLMD things will get on track. In the mean time, you need to start looking for someone locally who will support your diagnosis. You are doing a great job handeling this. Keep fighting the good fight. Don't back down. Dedee

How often is she taking the Zith? What is the dose? Sounds like she could have gotten another infection. My daughter got strep while on Zith and had no symptoms. Anytime a PANS child starts to flare again, I think infection. It could just be from the viral infection. That can certainly cause problems too.

I have so been in your shoes. When my daughter was at her worst, she had a HUGE fear of medicine of any kind. Especially liquids. She was only seven and couldn't take pills yet so she needed liquids and she needed antibiotics desperately. We tried everything....we tried hiding things in drinks, food, smoothies, milkshakes. Nothing worked. She was very paranoid and if she even thought something tasted funny she would make herself throw up. When we tried to force it down her she would throw up. I cried constantly. Her Mycoplasma P titers (both IgG and IgM) titers were through the roof and her strep titers were elevated too (though not extremely high). Dr. Murphy was insistant that she needed antibiotics. I couldn't find anyone in our home town willing to put in a line and do IV antibiotics. Finally, we saw a neurologist who used a pharmacy that did a lot of compounding medications for autistic children. He got us some Zithromax cream. We used the higher dose (500mg) since it was a cream and he thought it might not be absorbed as well, and we were able to use it on her. We used it at night after her bath (pores are open and it absorbes better). They give you very specific directions. In fact when my daughter had her first IVIG, she still was not taking medications by mouth and we had to get motrin (for headache)and phenergan (for vomiting) in a cream as well from the same pharmacy. I'm telling you it saved us. We used all of these for about 3 weeks before my daughter started getting well enough that I could start teaching her to take pills. There was no way she was EVER going to take a liquid. She has major taste issues, so I knew that getting her to do it the "big girl way" was my best bet. We started with mini m&m's, then moved up to skittles. When she could do that I let her start taking Vit D3 because it is very small. Within just a few days she was taking her Zithromax by mouth. I'm not really sure how much of the Zithromax cream gets absorbed, but it was enough to start making a little difference. You just need to start with some baby steps and work up till you can get her taking pills. There are several on this forum who have had to get there young kids on pills because of the whole taste and texture issue. I am convinced I never would have been successful if it hadn't been for working on the infection to begin with. My daughter was so paranoid about medications in general. She is some better now although she still struggles with taking her meds when she is in a regression. I hope things work out for you. I know how difficult this time can be. Best of luck. Dedee

I am so happy for you! Don't worry about the no-nos, we all do plenty of those while searching for that magic answer. Desperate times call for desperate measures. Most Mothers would cringe at some of the things I have done. You are definitely on the right track. Zithromax never helped my daughter much, but Biaxin and Augmentin did. If you are not planning on continuing with the injections you may want to think about switching the antibiotics. Since she reacted well to the bicillin, she would probally do well with Augmentin. Many PANDAS kids do. Unless you really are dealing with lyme or myco p in which case you will need to add in another antibiotic. So glad you are seeing an llmd. That will get you where you need to be with the infection. Great to hear your update. Thanks for sharing your good news. Have a great weekend with your sweet daughter. Dedee

Thank you SO MUCH for posting this. My daughter is constipated constantly and nothing really seems to work very well. I will order right now. Thank you again. Dedee

Hey, I was just reading about the CBS gene yesterday. Can't believe you are posting about it now. This is so cool. While reading about several of the ones you mention, I have some big suspicions about my daughter. I'm not bold enough to say them out loud yet though. Just have to wait my 8 weeks. Keep me updated on the rest of the stuff about your daughter. Thanks! Dedee

I know you do. Big hugs to you. I know this must be so hard. Wish I could fast forward for you. Take it one day at a time. Be good to yourself and try to take some time away if at all possible. Keep your expectations realistic. This won't last forever. Remember, this is only temporary. Things are going to get better. Hang in there. Dedee

I'm sure it's a lot to take in. Try to look at it as being on the road to recovery. Which I am sure you are! My daughter is on combo antibiotics and she takes both nystatin and diflucan. The nystatin is 3 times a day and the diflucan is 1-2 times per week. We also use grapefuit seed extract or garlic capsules to help with yeast also. When you get on the high dose of combo antibiotics, yeast can be a problem. We use high dose probiotics too. It's been a while since we tested for yeast but I suspect we go back and forth with it. I can sometimes tell with her behavior and I will get more aggressive with diflucan and supplements and then she seems to calm down. I would stay on top of the yeast treatment. Sounds like you have a good combination with the antibiotics. Make sure you do some good detoxing. Best of luck. Dedee