cfamily

Hi All, We have not been on the forum this summer, but have aggressively been treating lyme with antibiotic rotation. I have been wondering what to do about my daughters hair that has gotten thin, chapped lips, dark circles. This sounds like something for us to look into. We are also stalled in our progress 9 mos into lyme treatment, we still have lingering ocd and rage. Where can I order the tests or do I have to have our llmd/ped do them. Thanks for your help.

Hi I wanted to send you a picture but your mail is full. Lots of weird goings on! I can't get my picture to load on here. Sharon in Philly

We started our journey in 07 at CHOP in the ER. We got referred to the behavorial department and worked with a Dr. C who said she didn't think it was Pandas. Fast Forward to November 2010 back at the CHOP ER...The Ped on call said that we were chasing misleading information from people who just wanted to take our money. (Dr. K, Dr. B, etc) I had printed all the internet material I could find. The Resident on call rolled his eyes, wouldn't make eye contact and was impatient as I begged them to test our dd10 for co infections (lyme, myco p, etc). Since then she has been diagnosed positive for lyme since January. Sat there for 7 hours and they did nothing. They did call in social servies to see if we were crazy and had us talk to the psych on call Dr. Lamb. who works with Elia. Long story short, we have seen Elia several times and the final options were to send our dd to a psych hospital Rogers in Wisconsin for extensive exposure therapy or Plasma exch or IVIG. Neither the hospital or the behavorial health department is equipped to effectively deal with PANDAS and all the other co-infections that may come along with it for whatever reason. They don't believe it, understand it.. whatever..we were offended and didn't get help. I would encourage you to save your time and money and see a PANDAS doc, or Alternative MD who is versed in treating multiple infections. Send me a PM if you would like more info.

I will RAMBLE so please pardon me! We saw DR. B in stevensville, md and he indicated that there was strong evidence of lyme on top of PANDAS. (CD57, Band implications). So we have been busy with the super abx protocol along with alinia, fluconozole, probiotics, vit d, omegas, and a gluten, dairy, sugar, yeast free diet. I would say that we are dealing with mainly OCD now, intrusive thoughts about getting sick at school, rage if we discipline or try to correct, and the bad night time habits that require someone to help her fall asleep. We are homebound with a 504 in PA and have had a couple scattered interactions with friends from the neighborhood at the park. We still see the pshychologist 2 times a week and just today our PA in Edison called to say that our DD10's Camkinase part 2 results are in...... Her first score was 181 which cunningham felt was in the high range for pandas Her other scores were capped out 1600 and the last which my HUSBAND did not write down was at the top of the range. I have read that lyme can elevate the cam kinase does any one know of reading I can do? Our PA is really pushing for the IVIG because of the high scores, but I feel like we are just starting our lyme journey and need to address parasites, inflammatory diet, and the co infections. Any input would be greatly appreciated. Be it small, I have noticed improvements with the high dose abx, parasite, diet protocol. What do you guys think. Sorry for not posting often, but I so appreciate the input from the group. Best, Sharon in Philly

Sorry guys, found it.

I just switched my company to uhc due to the possible necessity of ivig. My insurance agent vf'd that for me.

Looking for the drug interaction links that someone so kindly posted. Thanks

We too are at a place where one of our docs wants us to do an IVIG. We are holding off until we take every other problem off the table. (Lyme, co infections) A couple of wonderful parents on this forum referred me to an LLMD in Stevensville, MD. He has given us the most hope at this point. Mainly because he has taken the time, to uncover the whole picture, heavy metal hair testing, bloodwork, all sorts of things. We have discovered that in addition to PANDAS her CaM Kinase test came in at 181 (which is pretty high), our dd10 has: Low CD57 41 and the only reason that is low is if you have hiv or lyme (I'm not by any means an authority but this is what we have learned from internet research and the lyme forums) Low vit D 20 High levels Magnesium Other abnornal things in the bloodwork We have to meet with him next week to talk about all the results. Here is my current approach: Find the infection that is preventing dd from healing and get rid of it, stay on an anti-inflammatory diet no gluten,dairy or sugar. See where we are with pandas symptoms after we get this current problem under control. My husband and I just got our blood drawn to check our ASO Strep titers to make absolutely sure we are not carriers. Our Pediatrician just doesn't have the knowledge but is able to do rapid strep tests and order titer tests for us. We see a psychologist to help manage the anxiety, ocd, panic, (food contamination, getting sick) We are homebound We see a Psychiatrist at chop (only for insurance reasons to get them to add the psychologist to our in network insurance plan) She wanted to send our dd to Rogers inpatient hospital in wisconsin for round the clock exposure therapy!!!!!!!!!!!!!!!!! Yeah, that will really solve our problem.......... We see a Physicians assistant in Edison, NJ that works for a DAN Doctor who has two sons with PANDAS and Autism (Did CaM Kinase tests and other bloodwork to look for immune deficiencies) Most Recently, the LLMD in Stevensville, MD (full range of tests, hair, heavy metals, lyme, etc) We wouldn't be anywhere with out this forum and all the wonderful parents. I had an internet conversation with DR K in Chicago but I have felt that the PA in Edison, was following basically the same protocol that all the big PANDAS docs were. We live in the philadelphia suburbs and there were big waiting lists for DR. B, DR. L at the time we called was not taking new patients and we felt like we needed to act right away. I don't know what other doctors we will wind up seeing but this is our journey so far. Hope this helps and like you I am not as good at replying to posts mainly because I just don't feel like I really know what I'm talking about. PM me if you want any info.

Us Too!!!! We have just moved from having 3-4 screaming like someone is killing her episodes throughout the day and her wanting to die as well, to maybe one per night usually at bedtime when the intrusive thought of getting sick panics her. After about 3-4 weeks of the screaming she started to calm a little and then two weeks ago we started high dose augmentin combined with Azithro and we are seeing escalation of the screaming at night again and more episodes during the day. The new abx regimen was started after we saw an LLMD. Could be herxing. We just got the CD57 result in which was 41, and we are waiting for a couple more tests to confirm lyme. Prayers and Hugs to your family, the screaming and hearing your child say I want someone to help me is just too much to bear some days. You are not alone and hope this phase will pass. Sharon

Thanks for the input. Our current med schedule since january 11th, is: She did also have a bycillan (sp?) shot in Dr. B's (Stevensville) office. 1000 aug 250 azith 125 3x per day vancocin fluconozole pearl probiotics I also forgot to post that dd has low D 20 (25 hydroxy) She has high MCH 30.7 MCHC 35.4 Can someone correct my thinking? Get strep and body overproduces abnormal antibodies abnormal antibodies attack basil ganglia exposure to other viruses can cause same reaction If she has lyme or other co infection how will the ivig reset her immune system? Also, if someone could point me to a post where one of our super smart folks explains about the leading hypothesis of mimmicry, etc. I want to REREAD AGAIN! I feel like i need a diagram of the body and need to learn what to do to get each part healthy (brain, gut, intestines, immune system) to really understand what is going wrong. Our PA said that having low D can cause neurological responses anxiety, etc. Recently an internet trail led me to an article about super antigens and about how they have discover 40 (+-) strep family superantigens. How can we ever get our kids healthy! Sorry for rambling.

Hi Group, We finally got our CaM Kinase 181. Lyme Igg/Igm was .33 now .41 CD 57 is 41 Our dd10 is currently unable to attend school because the ocd is severe (panic). One doc thinks hd ivig as soon as possible...the lyme doc thinks that it is not necessary and we need to give it time. We are worried about what kind of a success rate we will have if she is fighting lyme. We are also worried about what kind of funky thing we'll see in 20 years from the ivig. Again, we are confused about what steps to take next. Looking for input and opinions please. Sharon

Hi group, I'm a newbe who is about 8wks into an acute exacerbation with PANDAS. I usually post on the PANDAS forum dd10has been on 8 weeks of abx, cbt, trying exposure therapy all to have her back to crisis mode at 8wks. We are waiting for lyme results for co-infections but is this OCD with the food poison, issue, getting sick or is it a phobia? She has been getting to a level 10 at school and hurting herself so we are now looking at being homebound. We are so exhausted! Any and all experience, strength and hope are appreciated. Sharon

Hi there, Just thought I would chime in and share what our dd10 use to do which was line up dominoes perfectly and become enraged if they were uneven, then she lined up her dinosaurs same thing if they were not completely even and would throw a complete fit if she colored a picture the wrong color. This started when she was 3 or 4. We use to think that she was just "particular" but now with our PANDAS diagnosis, we rethink all of these earlier behaviors. I love it when people go into details of their experiences and even just their thoughts. Have a great day. Sharon

Our dd10 has tolerated school and even summer camp since the first occurance in 07. This latest Acute Relaspe has been totally different. The panics attacks just got progressively worse and now the school has implemented a 504 so she is able to do what she can (which is about nil for the last two weeks. Prior to this, we did not have her on prof abx and really got complacent. A few sniffles and worried thoughts followed by a throat culture and short course of abx kept EVERYTHING at bay since 07. So I don't know what the heck happened but we use to just have symptoms at home, no problems at school, but not now.

We did a short burst and had very very bad panic with our dd10 screaming like someone was killing her and hurting herself, thrashing. Then we did a 3 week taper and after the steriods, the really violent episodes seemed to subside. We think the steriods made her worse. Sharon

Thank you everyone! I will try to go with our gut feeling and think about the time she needs to heal. Sharon

Dear Lisa, I'm sorry you are having a rough night. I felt like I was reading about my life! I have two businesses and I get home from work at 10:30 pm on 3 nights out of the week. Then I have to talk my stay at home hubby down from the ledge for an hour and then I do my business paperwork and then I have to do pandas research and read the forums. This is also why I'm posting at 12:30am! We all are worn out, beaten down and have to show remarkable patience, strength and grace when we are living a nightmare that won't end. There is nothing but understanding for you here! I loved the earlier posts about I have a dream. On another note, I will say that my dd10 had bad reactions to both benedryl and melatonin. In her case I believe that maybe she felt a little different and woozy so that just sent the ocd about getting sick over the edge and we had screaming, scratching herself from panic. I have tried to ad more physical activity during the day and we do an epsom salt bath at night and then we do a little neck massage and read/play majoong (sp?) So that has been helpful as we move through our latest 8 week acute relapse with the worst symptoms we never ever could have imagined. We also cut out sugar, caffeine. I'm sorry if you already know all these things, but I'm fairly new to the forum and we would be nowwhere with out the parents sharing their day in day out experiences. After being on Aug, Cefdinir, Azyth 250mg for about a month and a half with no improvement, along other meds for yeast, inflammation, probiotics, we have been doing all the tests for co infections before we visit the ivig or plasma therapies. We saw a wonderful llmd in stevensville, md who did a bicilin (sp?) shot in office and has her on Amox 500 2x per day plus Azyth once a day. All the best to you and hang in there. Sharon

Hi Group, Our dd10 is about 8 weeks into this latest episode we are testing for any underlying infections before we move to the ivig. We are having a ___ of a time with the school situation. Her OCD/anxiety is all wrapped up with getting sick at school, obsessions with kids at school that she knows have gotten sick. She can go from 0-10 at school in about a second. They have implemented a 504 plan where my husband goes in to school in the afternoon and they stay or not as long as she can handle it. Sometimes she can't even go in the classroom and she sits in a conference room with my husband. Are we torturing her? Should we just throw in the towel and let a teacher come to the house? The psychologist and the psychiatrist have made us feel bad in that we are giving into the OCD and making the problem potentially worse. The school can't handle her when she is having a full blown episode. We are so depressed and confused. What thoughts or experience do you guys have about pulling our children out of school? Thanks for your input.

Are these low? high? Haven't been able to talk to the doc yet. The lab just sent over the results.

We just got test results for: NEOPTERIN 194 BIOPTERIN oxidized 175 % total 66% TetraHydro BIOPTERIN 86 % total 33% creatinin 1 412 uric acid 806 urate/ crea ratio 0.57 What is the purpose for these tests? Thanks in advance group. cfamily

Hi Group, No improvement, now starting to bite during her exacerbations in the evening. The Psychiatrist says if she's not better she wants to do the plasma procedure and our NJ PA wants to do the ivig. Should we wait and get results from mycopl infection, and a complete medical workup (immunology)? We do have history of tick bites on me when I was pregnant and dd 2 years ago. We are fighting everyday to get the doctors to move. Its hard to think that at the end of her last year she was being tested for the gifted program in school and now we can barely keep her in school for a few hours. It kills us that she knows whats happening to her and she can't control it, she thinks her friends don't like her, and she's embarrassed yet she is going to try to go to school tomorrow. She is so brave. We miss our dd. What do you guys think about these procedures before we've ruled out other things? Buster?

They are on the inner thigh and she has three on one leg and about 6-8 on the other. They have a little dimple in the middle of the bump. Two are red at the moment. We saw S. Smith in Edison, who looked at them and said they were molluscum because of the dimple. He also felt that she was a little old for them and that could be a sign of an immune problem. Thanks for responding.

We are about 6 weeks into our current recurrence. Our dd had a molluscum tag get infected (bad) they thought it may be a staff infection and treated with abx about 6 months ago. She still has them and they off and on get red and irritated if she scratches them. I'm wondering if these could be part of the culprit for this latest recurrance and since this one is the worst ever, whether she is not getting better with the Abx because she her body is dealing with the molluscum virus? Any input would be helpful. Also, just to complicate things, she had a deer tick bite 2 years ago and I got bit when I was pregnant with her. We are just trying to figure out how to get these symptoms to subside and treat the appropriate thing. Sooooooo Confused.

Our dd10 has extreme panic, intrusive thoughts, wanting to hurt herself, die, at night. She has intrusive thoughts and worries all day and has panic attacks at school which have gotten progressively worse over the last 3 weeks. She is a supersmart social child and now she doesn't want to see friends or anyone because she's afraid she will get sick.

The Step down is gradually reducing the dosage over the course of 15 days.