JJMom39
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Posts posted by JJMom39
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S&S--thank you for the cyber support. We are only 4 days into dealing with probable Lyme diagnosis and it's a lonely place to be. After 11 months of dealing with ds's PANDAS diagnosis I was just starting to feel like I had a handle on things. This is a whole new world.
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DS9 recently tested positive IgM for Lyme via Igenex so now I am looking for an LLMD. We are in central Ohio, but I am willing to travel. I have a few names to pursue that I received through ILADS, LDA, Lymenet and a couple of forum members here. If you have any names or leads I would really appreciate them or you can PM me. Thank you for any direction. It seems as though it's like looking for a needle in a haystack.
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We recently rec'd DS9's Igenex results. I have not yet spoken with our PANDAS doc who ordered the tests, but I did speak with his nurse and I have a copy of the results. I have spent a lot of time looking at information online about how to interpret the western blot, but it's all still a bit like a foreign language to me. His results were:
Single + on bands 41 and 31 and IND for band 83-93 for IgM. His IgM was considered positive.
He was IND for band 31, IND for band 39, double ++ for band 41, and single + for band 58 for IgG. His IgG was considered negative.
He was also negative for all co-infections that were tested. They ran numerous co-infection tests--bartonella, babesia, erliciosis, rickettsia.
Can someone explain why band 41 is significant if it's not specific to borrelia? And I read something (see below) about band 31 saying that it can cross react with several viruses so what does that mean?
This is just one of the things I read about band 31 (and 30)--
"IGeneX also now offers a new 30-31kDa Confirmation IgG and IgM test. If results from the initial Western Blot are positive for bands 30 or 31, it is possible that these could be due to cross-reactivity with several different types of viruses. In this confirmatory test, highly specific recombinant antigens are used to validate that the positive result is not due to cross-reaction with viruses."
Thank you for any input, explanation, etc. I'm sure this has all been covered before, but after much reading on the subject I am more confused than before I started!
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My DS9 is taking Augmentin 2000 mg BID and azith 500 mg once per day. For several months last year he took azith as prophylaxis. He took 500 mg twice per week. There is no standard protocol for prophylactic use. I have seen mention here that some kids take it once per week, twice per week or three times per week, and there might be still other approaches. Different doctors have different approaches with dose and frequency.
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I am wondering how those who have kids on daily azithromycin for PANDAS get their insurance companies to pay for a 30-day supply of the medication. Ds9 was taking prophylactic azith (two 250 mg tablets twice per week), and our insurance would only pay for 6 pills at a time. Although it was annoying, it was manageable because we used our allotted 6 pills every 10 days so refills were doable. But now, he will be taking 500 mg per day (one 500 mg tablet). Our insurance will pay for three 500 mg tablets at a time, so that means I will have to order a refill and pick it up every 3 days!! It seems the only way around this is if ds has one of the diagnoses approved by our insurance company for extended use. This includes things like chronic sinusitis, Lyme, babesiosis, cystic fibrosis. He does not have any of these diagnoses. Has anyone else run into this problem, and if so, how did you deal with it? Did you find a way around it, or are you running to the pharmacy every 5 seconds?
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Thanks for all the responses. I called our children's hospital lab and they said they will do outside test kits for a draw fee so I will start there. If we have issues I will move on to LabCorp or Quest. The papers included with the test kit say you can ship the blood Mon, Tues or Weds. This kind of thing causes me extra anxiety! Fortunately ds handles blood draws well, but I think about all the things that could go wrong with the collection or the shipping or the whatever. I've about convinced myself we won't be able to find anyone to do the collection. I have impetigo right now and my OCD/anxiety is through the roof!! It hasn't been good for ds either!
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Getting ready to do Igenex testing for ds9. The holiday really slowed down our receipt of the test kit so I have to have the blood drawn tomorrow if at all possible. For those who have done the testing, where did you have the blood drawn? Did you go to a lab like Lab Corp or Quest? We have done all of our standard blood work through the lab that the children's hospital here runs, but I don't know if they will do this type of draw or not. It's way too late to call tonight so I am trying to come up with a plan for tomorrow. Thanks.
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Ds9 has been taking Biaxin 500 mg bid for the last week, and is also on Augmentin XR 1000 mg bid. He has been having mood swings and is and angry and irritable since starting the Biaxin. We do not know if he is herxing or if he is having an adverse response to the Biaxin. We started Ibuprofen last night and it seems to be helping, but I want to add in some charcoal to see if that will help also. I have never used charcoal so I am not sure what is the best dosing schedule when one is also giving abx and probiotics. He takes both antibiotics at breakfast and dinner, and he takes probiotics right before bed. Should I give the charcoal at lunchtime?? Or what would the correct dosing schedule be? I have some charcoal capsules on hand. We are heading out of town soon so I am short on time to search the forum for info! Thanks much. Happy holidays to all.
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Ds9 has been on Biaxin for 5 days. He is taking 500 mg bid. He is also taking Augmentin XR 1000 mg bid. He has been on the Augmentin for over 2 months. Dr. B. added in the Biaxin to see if we could gain further improvement and reduce the number of exposure flares. About 3 days into the Biaxin ds started showing increased defiance and sassiness and some emotional lability. This has not been constant, but rather comes and goes. He was better yesterday, but today these symptoms have increased again and it's not pretty. I can't say for sure if this is related to the Biaxin, but nothing else has changed other than one of his supplements. I took him off of a methyl folate/b12 combo and put him on methyl folate and B6 (not in combo form, but both separate supplements.) I am troubled because we usually only see defiance in a pretty big flare. He is home from school for holiday break so we aren't dealing with exposure. Has anyone else seen an adverse response to Biaxin? Could this be a side effect? I was also wondering about a herxing type reaction, but I don't know if that even makes sense. At this point strep is the only trigger that we know of. He was negative for Lyme and co-infections including myco on standard testing, but we will be doing Igenex testing to make sure. Still waiting on the kit for that though. The only other time he had no response or an adverse response to an abx was when he was first dx'ed with PANDAS this past winter. He took Omnicef for 5 days and it did nothing for him, or perhaps made him worse. He had an active strep infection at that time. Azith turned him around after that. Any thoughts are much appreciated! Nothing like pulling your hair out right before the holidays.
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When we were there he did not have lab services in his office yet so we took the lab orders home with us and had labs drawn here so it was not necessary for all family members to be at the appointment. He told us at our appt that his office would be getting lab services in 2 weeks (that time has passed now) so I am assuming that you will be able to have blood drawn while there. But, that doesn't mean you couldn't have some family members' labs drawn at home. You could call the office and ask how they prefer to do it now just to be safe.
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We went to see Dr. B. for the first time a few weeks ago. We had a wait of 6 weeks. I was expecting a longer wait. I do think he is running longer now because of the holidays. If you think you might want to see him, make an appointment now, and if you change your mind you can cancel later.
Our first appt. was very much about Dr. B. going through my ds's history--onset, symptoms, response to the abx we have tried, other illnesses he has had, his recent flare up's and his response to meds tried, his response to steroids. We also discussed some family history; my other ds and his possible symptoms. He ordered extensive blood work and answered all the questions I had time to ask. Even though we already had a PANDAS diagnosis, he very thoroughly went through everything we have been through in the last 2.75 years. We drove 11 hours each way and it was worth every minute to have the peace of mind that ds is now being treated by someone who really knows PANS and how to treat it. We were fortunate to have good local care, but we wanted to see one of the experts and our ped encouraged us to make the transition. We will be doing phone follow-up's as well. Right now we are waiting on blood work results.
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I too am beyond thankful for this forum and everyone who posts here--those who have been here for some time who help inform and guide those who are new; those who are making their way through diagnoses and treatment options and all that these things bring; and those who are new and looking for answers, information, and support. There is such an amazing range of knowledge, experience, and compassion here. My son would not be where he is now without what I have learned from this forum. And I can't imagine having made it through the last 9 months without the support here.
I am so grateful my son is doing well right now.
I am grateful for the moms who organized the first-ever PANDAS parents meeting!
I am grateful for the physicians and researchers who are tirelessly fighting for our kids. They are making a difference for our kids now and for kids who might be dealing with this illness in the future.
I am grateful for the love and support of friends and family.
Blessings to you all this Thanksgiving.
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Sent you a PM.
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My non-PANDAS Ds had a constant dry cough for weeks and weeks. The ped's office kept telling me that as long as there were no other symptoms to just keep an eye on it and it would go away eventually. At the time they were seeing a lot of coughing going around from various viruses. I continued to check in with the office and they kept telling me to wait. After vomiting at school because he was coughing so hard they finally paid more attention to his cough. It turned out that he was having silent or wheezing asthma that was induced by allergies. That dry cough was his only symptom. Very frustrating that it can be so hard to get ped's to pay attention!
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I too want to extend my immense gratitude to Vickie, Tammy and Sarah for all of their hard work putting the P's Parents Meeting together. The time and energy spent organizing the event was obvious on every front! Thank you for giving us a venue to make connections, share information and gather inspiration. And a big thank you to the presenters and sponsors, and all the parents who attended. It was so helpful to meet other families facing the same challenges and to gather wisdom and encouragement from all who attended. It was very beneficial for my husband to meet other dads as well. In the past he has struggled to accept the diagnosis and wrap his head around what it all means. The meeting gave him the opportunity to feel part of a community rather than isolated in the struggles of this illness. By extension my son felt part of that community too. He asked me how the meeting was and when I told him that I had met other families with kids who have P's also, he smiled and I just knew that helped him feel connected too. Thank you, thank you, thank you.
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Our ped neurologist initially suggested 500 mg of azith one time per week as a prophylactic dose, but our ped didn't think that sounded like quite enough so we are on 500 mg two times per week (Mon and Thurs). If ds has a known exposure or there is a lot of strep floating around the school we go to 5 days, giving 500 mg the first day and 250 mg for the next 4 days. Ds weighs 80 lbs.
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Bees, I am so happy for your son's continued progress. Sending good thoughts for continued health and healing!!
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Sending you a PM
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Ok, its not the same as a blistering agent. The blistering agent causes the wart and skin around the wart to blister. This causes the body to send its agents to the area to attack it and get rid of it. Left no scar. It did not hurt DS. The freezing did. He was not quite 5 at the time and just gritted his teeth and took it. Two months later, ear infection and PANDAS. Our lives have never been the same.
I have to ask something that may sound odd. I am fairly new to this all.....are you saying that PANDAS did not start until after the blistering treatment at the Derms office? Is there a connection there? Curious because my ds had the same thing done (blistering agent) in Dec and January the PANDAS stuff started for the 1st time just out of the blue it seemes, not that we knew at the time what was going on though.
I am curious about this also. Nicklemama you said your ds had an ear infection and then PANDAS, a couple of months after the blistering agent treatment. Do you think there is any connection, or do you think the PANDAS was a result of the ear infection?
And MaggieMoons, did your ds have any illness that could have a connection with his PANDAS symptoms? I don't know why there would be a relationship to the blistering agent, but it does seem curious...
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Thank you all again for the many thoughts and ideas. I am feeling much more positive that we can get rid of ds's warts without the squaric acid or the other more invasive procedures. We had been using duct tape since the beginning of the summer and it had helped some, but ds will not keep it on all the time. It gets in his way when he is writing, and he will also remove the tape so that he can pick his finger! That is why we abandoned that method. Last night I decided to try apple cider vinegar since we had it on hand and I wanted to start something since his warts are getting big again. I had read that a.c.v. might cause pain and throbbing because the acid interferes with the capillaries that feed the warts, but this didn't sound like it would be a major issue. Well, less than 2 hours after I wrapped his finger with the vinegar-soaked gauze, ds was sobbing in pain. He said his finger felt like it was going to explode it was throbbing so badly. I gave him some motrin in hopes that it would help him get through the worst of the pain, but he could not tolerate it. We had to unwrap his finger and now there is no chance he will try the a.c.v again. Has anyone else experienced pain with this method??? It's a shame because today the warts are much smaller and have already started to turn black. I believe they would go pretty quickly if we were able to keep with it. But now we will move on to one of the other suggested remedies. I will let you know how it all turns out!
mk8898--I think the squaric acid our dr. recommended must be something different from what was used on your son's warts. Squaric acid is a topical agent so it's not injected. I wonder what was used for your son? If you find out I would be interested to know. thanks!
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Thanks for the input, everyone! My ds has been taking Olive Leaf for several months, not for the warts but as part of his general supplement regimen. I have not noticed any change in the warts since he started taking it. I am going to look into Zymaderm and/or thuja.I don't know if he will be able to tolerate the 5-6 freezing treatments the dr said it would take if we go that route, and the idea of the squaric acid is not sitting well me with.
Nickelmamma, you asked if the squaric acid is a blistering agent. I'm not certain--in the information I read it's called a "contact sensitizer." When it is applied to the skin it sensitizes the immune system to react and go to work on the virus and the warts. I'm not sure if that is the same thing as a blistering agent or not.
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My ds9 is a compulsive skin picker. He picks the skin around one of his fingernails, and this has resulted in some nasty warts. We went to the dermatologist today to have them frozen off, but the dr. recommended that we consider another form of treatment. Because the warts are right next to the fingernail he said freezing would not be as effective because there is no way to get into the skin fold. Most of the warts will be affected, but they could return because of the areas not exposed to the freezing. Instead he recommended using a substance called squaric acid. This is method of removing warts is considered "immunotherapy." Squaric acid provokes an allergic reaction and triggers the immune system to destroy the virus causing the wart. It takes several applications over several weeks and each application requires a higher concentration of the squaric acid. After the initial application the immune system goes to work to remove the warts and the virus that causes them. Hearing the dr. say "immune system" was a red flag for me. I am not thrilled with anything that will stimulate the immune system. I told him ds has PANDAS and he said he had heard of it but wasn't really familiar with it but that he would look it up and let me know what he thinks. This dr. happens to be married to our ped, and he said he would discuss it with her also. She has been great in helping us treat ds, but ds is her first PANDAS patient so she is not an expert by any means. I called ds's neurologist to get her take, and her response was not at all helpful. She said she is not familiar with this method, but if it is what the derm is recommending as the best route then that is what we should do; and if there are consequences "we will just have to deal with the consequences." Then she said he is being treated for PANDAS and on prophylactic abx, so he should be okay. That makes no sense to me--I don't see what the prophylaxis has to do with his immune system being stimulated to remove warts! And I'm not willing to deal with any potential consequences, especially since she probably doesn't have a plan for what that would look like. When I looked up squaric acid online there are things that discuss potential downsides of the treatment. The potential downside is that after the use of squaric acid "the immune system may trigger a serious allergic reaction." And, "it is not to be used by pregnant women as the allergic reaction that is provoked by the immune system may harm the fetus." None of that sounds good to me! I think we would be safer going with the freezing method or laser method, even if there is a chance they will come back. Am I overreacting?? I'm just not sure if the immune stimulation will be a bad thing or not. Any thoughts would be greatly appreciated.
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That's great!! It's wonderful that PANDAS is getting more local and national press these days. I am in central OH, and the health reporter for one of the stations here is in the midst of putting together a story on PANDAS. The reporter is my neighbor. We are not being interviewed because it's a conflict of interest for her, but through a local dr to whom I referred her she found two families whom she will be interviewing for the story. She also interviewed the dr. It looks like this story will run at the beginning of Nov also. She became interested in PANDAS when the sister station in Indianapolis did a story, and through a post on this forum I found out she was planning the story here. Before that she did not know that my ds has PANDAS because we haven't lived in our neighborhood for long and he was just diagnosed earlier this year. It was a happy coincidence to find out she was the reporter working on the story! I will also post a link once it airs and give advance notice so anyone in the area can check it out.
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Thanks for the input, Nancy! We decided to keep ds home for the week. He is on a prophylactic dose of azith, but I bumped him up to treatment dose, which is the plan we have in place when there has been an exposure. But even with that we decided to err on the side of caution and keep him home. His school is very understanding of the situation so we are working from home and trying to stay caught up. There were a few other kids in his class out sick yesterday but we don't know why at this point. His teacher sent an email to all the parents asking that they watch for strep symptoms and have them checked out. Any idea what the incubation period is for strep?
Need LLMD!
in PANS / PANDAS (Lyme included)
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I posted this on the Lyme forum also, but since many here see LLMD's in addition to PANDAS docs I thought I should post here too.
We are looking for an LLMD. We are in OH, and there are only 2 in the state, one of whom is not taking new pediatric patients. I am open to traveling, so any names of docs in surrounding states (IN, MI, PA, KY) AND beyond are appreciated. I would like to keep travel to 12 hours or less if possible. That would include the mid-west, some of the north east (NY, CT, NJ), south through the Carolinas and Georgia. I am aware of Dr. L in Indiana and Dr. T in Michigan. Even if you think it might be too far go ahead anyway and give me a name. There are just so few who treat kids. You can PM if you would rather. Thank you.