caring mom

Hi Christy, I don't know if you are familiar with EMLA cream. I asked my DAN doctor for a prescription for it when my daughter was going to have a blood draw. You put it on 1/2 hour before you get the blood drawn and it COMPLETELY numbs the area where they stick the needle. I didn't know which arm they were going to use so I put it on both my daughter's arms. She felt absolutely nothing!! It was a breeze and she watched the whole time. I asked her if it hurt and she said she didn't feel anything. It was the best $10.00 I ever spent! Ask for it, it's well worth it! Caring Mom

Hi Melanie, What is Danny on Flagyl for? I noticed you wrote he is doing another IVIG - I think today. Best of luck to both of you. I hope you see great results!

Sorry, I don't know how to work this website yet!

Momaine and Gatito, Thanks for your kind words. I do feel traumatized by this whole experience and the worst part is that I don't know when or if things will ever change. It's so hard to live with this kind of unpredictability all the time. Especially when you are working soooo hard to make life better for your child and you seem to be getting nowhere. Your understanding means a lot to me! Caring Mom

Hi Faith, Yes, it is the vocals that are back. Not as bad as before we started the Flagyl the first time but definitely increased from the 2 weeks when she was on the Flagyl (she was at 90% before and now she's at about 65%). I did stop the s. boulardii but I too am inclined to think that it was backsliding from the Flagyl. It's just so frustrating because I feel like I'm just never going to get a handle on this. I had a miracle for 2 weeks and now the miracle was taken away from me. I started her back on the Flagyl last night - so far she's had 2 doses. I can't tell anything yet. I just don't believe that the 2 weeks she was on the Flagyl was a fluke. She is continuing on the Fluconazole (she's been on it for 3 weeks now)so I don't think it's die-off. I have a phone consultation on Monday with her DAN doctor to discuss all of this. Lyme Mom brought up the possibility of lyme but everything that I've heard about treating lyme (not that I've done extensive research on this by any means)talks about big herxing when you start treatment. We've had the opposite reaction. I guess at this point all I can do is wait and pray that she starts responding again. I'll let you know. I don't blame you for being chicken to continue on the Flagyl with your son. When things are bad you just can't fathom making anything worse. Where are you thinking of going from here? I wonder why he had such a bad response? Are you rethinking Lyme at all? Caring Mom

Trg Girl - she started ticcing more. I also noticed she was a bit more emotional than normal for the 2 days before the ticcing really increased.

Thanks Phasmid, I not going to give the s. boulardii to her anymore.

Faith, I'm so sorry you had this experience. I really had hoped it might help you. I don't blame you for stopping - I would have done the same. I hope things have calmed down some for your son.

Hi Everyone, Well, I just knew it would happen. The minute I open my mouth about how well my daughter is doing she turns on me. To recap, she was diagnosed with PANDAS 1 month ago and Tourettes 1 1/2 years ago. She is currently on Azith 2x/day, Fluconazole 1x/day and we just ended a 2 week run on Flagyl 7 days ago. I have been writing on the forum about what a miracle Flagyl was for her. Her vocal tics went from every 5-10 seconds all day long to 10-15 all day. I have been terrified that since we stopped the Flagyl she would go back to how she was before. She did fine the first 5 days off the Flagyl. I actually thought she may have declined a little when she got off it but it was so slight that it really wasn't worth a thought (maybe 18 tics a day instead of 15). Yesterday I definitely noticed she was doing worse but again it wasn't anything major so I was worried but not hysterical. Well, today she was definitely bad. I knew it the minute she woke up. I called the doctor and got another prescription for Flagyl (another 2 weeks) and am starting her on it tonight. I am terrified that she is not going to get better. I am trying to think of what else could be responsible for her decline. I started her on s. boulardii after she finished the Flagyl. She has had 6 days of it. Could it be a herx reaction? I think Phasmid wrote that her son also declined a week or so after stopping the Flagyl and had to go on it again and had success with it after that. I just want to breathe again and not dread getting up each morning because I don't know what will await me. This roller coaster ride that I have been on for 1 1/2 years is really getting to me - I want to get off the ride! I know that most of you have been through way worse than I have and I feel guilty for even admitting how I feel but I have no one else to talk to who understands. Thanks for listening. Any thoughts for me? Caring Mom

Hi Mom2ck, I just thought I would give you my experience with NAET as we tried it for my daughter for almost a year. My daughter was diagnosed originally with Tourettes 1 1/2 years ago and most recently with PANDAS (1 month ago). When we first got the Tourettes diagnosis we started her off right away on NAET. I have a neighbor who has a daughter whom is mildly autistic. She has been taking her daughter for NAET since she was 4 months old and her daughter is now showing no signs of autism. Anyway, she highly recommended it. We went to Devi Nambudripad's office in Buena Park, CA (Devi is the woman who started NAET). We were told right off the bat that they don't have a good track record for people with tics or tourettes. However, we decided to see what would happen as I had heard so many good things about it. We went through all the basic treatments (I think these are the fist 12) and many others. My daughter had a negative reaction to each and every one (her tics would increase and stay like that for the next 3 days). I got tired of waiting for things to get better because they never did. The people in Devi's office did not know why my daughter was reacting the way she was. NAET did not help us at all unfortunately. Also, some of the things she was "cleared" for in NAET showed up as allergies on a recent allergy test. We also saw a very reputable chiropractic neurologist for 6 months who did muscle testing. Things did not work out with him either. He muscle tested my daughter for many things including egg which he said was fine for her to eat. Well her latest allergy test shows that she has a strong allergy to egg (both yolk and egg whites). He also tested her for dairy and casein which he said she should not eat and her allergy report said she had no allergies to dairy. Very confusing. I hope I'm not upsetting you with this posting. Keep in mind that we were ultimately diagnosed with PANDAS (although I'm not 100% convinced of it). So that might be why nothing worked for us. I know there are other people on these boards who have had good success using NAET and chiropractors. I just wanted to give you our experience since we tried both of these avenues. Good luck - I hope you find something that helps your child! Caring Mom

That's good news Melanie - good luck and keep us posted!

Phasmid, I'm starting to think that my daughter's clostridium levels were causing her vocal tics. Her blood work revealed elevated anti-DNase strep antibodies but not elevated ASO levels. Dr. Lin started her out on 2 weeks of Azith at 200mg 5ml 1x/day before we got any blood or urine results. After 2 weeks I saw absolutely no change in tics. When her blood and urine tests came back Dr. Lin doubled her Azith to 5ml 2x/day and then added Fluconazole and Flagyl. We didn't get the Fluconazole right away but I started on the Azith and Flagyl on the same day. Two or three days into using the Flagyl and Azith I started to see changes in how often she was ticcing. It decreased each day a little more. It was either the Azith being doubled (which I don't think because I don't think it would work so quickly with such drastic results)or it was the Flagyl targeting her clostridium. I can't help but think it was the Flagyl. The report I got back from Great Plains Lab said high clostridium markers are associated with behavioral, gastrointestinal and/or neuropsychiatric effects. Glad to hear things are going well for your son!

Thanks for the info Phasmid! Do you think it would be unreasonable for me to ask Dr. Lin for another round of Flagyl just to make sure it's all gone? We stopped cold turkey too and I'm so afraid of losing the awesome gains we've made. I haven't seen my daughter get worse yet but Dr. Lin said her clostidium levels were among some of the highest he's ever seen. I'm just not sure 2 weeks was enough to kill off everything. I put my daughter on s. boulardii for now but I don't know how helpful that really will be for the clostridium. What's your opinion on all this? Caring Mom

Hi Melanie, My daughter just got off of it after a 2 week run with it. We have also had wonderful results with it. Her vocal tics went from once every 5-10 seconds down to 10-15 tics all day long! What is your child taking it for? Phasmid - when you followed up with the Vancomycin was it because your son still had residual tics going on? I would LOVE to get another 2 weeks of Flagyl or Vanco just because my daughter's clostridium levels were so high I can't imagine 2 weeks of Flagyl took care of it all. Can this turn into a scenario of too much of a good thing? Could taking more Flagyl or trying Vanco make things worse? Caring Mom

Hi Trg girl, My dd is 6 and really her only main issue is her vocal tic. She is a little immature for her age in my opinion - meaning she sometimes has tantrums over stupid things that aren't really age appropriate (like if her brother takes a toy that's hers but this only happens once or twice a week). She has a mild sensory issue with clothing. Sometimes things don't feel tight enough to her (like her underwear, sock and shoes) but again this happens maybe once or twice a week. At school (she just finished Kindergarten) her teacher said she seems completely normal like the other kids. She did very well in kindergarten and was at the top of her class. The teacher did say that she can be a bit impulsive. The example she gave me was that my daughter finished her work and despite there being a line of children waiting for the teacher to check their work she went up to the front of the line and told the teacher she was done and she should check her work. However, the teacher mentioned as well that there are many others in the class with the same problem. We thought she might have adhd when she was younger (around 2-3 years old). She was unable to sit still and was extremely impulsive (she jumped into a swimming pool by herself on a cruise ship to get to me when she saw me walking into the pool area - my husband had to jump in after her). However, when she turned 4 all that craziness and hyperness went away. We thought she was finally maturing and calming down. One year later came the tics. Let me know if you need more info. Hope this helps you out. Caring Mom

Oh Faith, I hope so much this works for you!! The s. boulardii might not have been able to touch the clostridium because I don't think it is nearly as strong as the Flagyl (I could be wrong though). My daughter had no signs of clostridia - no diarrhea or complaints of stomachaches. I was shcoked to see her levels were almost 6x the normal amount. My dr said there should be no die-off effect with the Flagyl and we didn't see any so hopefully the worst that can happen is that you don't see any results from it (I sure hope that's not the case). There is a stronger medicine called Vancomycin the my DAN doc said we could use if we don't see any results with the Flagyl. Good luck and keep us posted - I'll be thinking of you!! Caring Mom

Faith, When my dd(6) had her sinus infections at age 5 we were just given a regular 5-7 day course of antibiotics to get rid of the infection each time. The last time we were given Biaxin. We had no idea it was strep. It wasn't until I took her to a DAN dr 1 month ago that we ran blood tests and found out that her anti dnase strep antibodies were elevated (her results were 1:480 - she should have been < 1:170). This is the first time we are on long term antibiotics (azith 2x/day 200mg liquid). It's so hard to say what is really doing it for us but my gut is telling me it is the Flagyl. We started out on azith 200mg 1x/day for 2 weeks and saw NO improvement. The dr then added the Flagyl (her lab results came in after we started the azith) and doubled her Azith because we weren't seeing any results. We started both meds (Flagyl and higher azith dosage) on the same day. I started to notice a slight improvement in her in about 2-3 days. I don't think the Azith would work that quickly after showing nothing for 2 weeks at the lower dosage. Her vocals went from hearing her every 5-10 seconds to hearing her about 10-15 times A DAY. Faith, I could be wrong but I really think it was the Flagyl. The dr diagnosed her with PANDAS but I'm having a really hard time believing it because she just doesn't seem to fit the Pandas profile at all (she was originally diagnosed with Tourettes 1 1/2 years ago). I'll be happy to answer any more questions you might have.

Hi Faith, My understanding is that there are several different strands of clostridium including c. diff. My dd's DAN doctor tested her through Great Plains Lab. You can do a stool test but he said it's kind of expensive. We did the MOAT test (Microbial Organic Acids Test urine test) - he said that is a cheaper way to test for clostridium (it tests for clostridium markers along with yeast and several other things). Yes, I think she is tolerating the Fluconazole now because we added the azith, however, my gut is telling me the Flagyl was our miracle medicine. I'm terrified of writing this because I have jinxed myself so many times in the past but her vocal tic (which is basically our only problem) has improved to where I can count the number of sounds she makes each day on 2 maybe 3 hands (so basically 10-15 times A DAY!!) Before the Flagyl, Azith and Fluconazole she was doing it every 5-10 seconds all day long. We were in that state for so long I started to not want to leave the house with her - it was horrible. She was on the Flagyl for 2 weeks - we stopped 5 days ago. Her dr said it affects the liver so you can't be on it longer than 2 weeks at a time. She's on s. boulardii now because it was recommended to me to help with clostridium. After we started the Flagyl it took about 5 days before we started seeing really noticable results. Flagyl was the first medicine my dd tried that didn't increase her tics or cause any die-off. I hope this helps. Caring Mom

Faith, My daughter was on Nystatin last year for yeast and her body could not tolerate it (we tried for about 4 weeks). We stopped and restarted several times to no avail. Even at the lowest dose her vocal tics would be off the charts. I asked our new DAN doctor about it recently (she was just diagnosed with PANDAS) and he said that if your body has strep in it (which hers did but we didn't know it at the time) and you take anti-yeast medicine (like Nystatin or Diflucan) killing the yeast does something to the strep and it can cause your symptoms to become worse. Sorry I can't be more specific but I can't remember exactly what he said it does. Something about making more room for the strep? I just wanted to throw this info out there for you in case it might help you out at all. She's now on Diflucan, Azith and was on Flagyl for clostridium. The result has been like a miracle. No bad reactions at all. Have you checked clostridium levels in your son at all? I wrote about it in another posting but I really feel that more than anything else, my daughter's high clostridium levels were what was causing her vocals to keep escalating. We have seen a DRAMATIC change since treating her clostridium. I'm so sorry for what you are going through!! Caring Mom

In another week and a half I have a phone conference with her dr again. I'm going to ask about the EBV again and I'll let you know if he says anything that might be of interest. Hang in there!

Philamom, I think they essentially do the same thing. I looked it up and basically read you can substitute one for the other. Hope you find something to help!

Philamom, Our doctor recommended giving activated charcoal for any die off/stomach related issues that my daughter might have. You can buy it at any health food store. I give 1 capsule a day and it has worked great - no stomach issues at all. Twice I tried skipping just to see what would happen and sure enough my daughter complained of a stomachache both times. The only issue with it is that I was told to space it out about 3 hours from any other medicines. It can lower the effectiveness of the other medicines if taken too close together. Just a suggestion.

Hi Gatito, Thanks for responding. She was tested for myco p and came out negative. I don't know what cmv is - looked for it on her blood results but didn't see it so I'm assuming she wasn't. I haven't tested her for lyme because she when I researched it she didn't fit the symptoms. I guess I'll do some more research. Is it expensive?

Marilina, Please excuse my ignorance, I am new to PANDAS and just trying to figure it all out. My daughter's blood work showed a positive result for EBV. It was actually rather high in my opinion (214 with the high norm being 18). When she turned about 3 1/2 she had a dramatic decrease in her energy level. She constantly complained of being tired. We had to pull her out of her gymnastics class as she was too tired to do it (and at 3 1/2 the class is not designed to exhaust the kids). She still has very low energy levels and tires out way more quickly than other kids her age. I was hoping that it was due to PANDAS and with the treatment plan she's on we would see her energy levels increase as time goes on. However, after reading that your daughter is being treated for EBV I'm wondering if I should be pursuing this as well. Her doctor said many kids her age test positive for EBV and not to worry about it. I don't understand what you mean when you say that your daughter can't react to the viralDNA of EBV. Can you please explain this to me? Thanks! Caring Mom

Philamom, The doctor actually gave me a kit. In the box was a container for her to pee in and it included a form from Great Plains Lab that he filled out ahead of time making which test he wanted her to have. I was to have her pee in the cup and then send it via Fed Ex to Great Plains Lab. The Fed Ex envelope was included and it was for an overnight delivery - I payed for nothing. Here is the telephone number for Great Plains Lab (913)341-6207. I'm sure they can give you instructions on how to get the kit. Sorry I can't be of more help. Caring Mom