mama2alex

I've never heard of this being used as an anti-inflammatory, but our LLMD has prescribed it at various times (he rotates and combines abx). It was the first thing he gave my ds12 and we saw some improvement within 6 weeks. It gave us a scare because his urine turned orange, but this is normal. Did he prescribe it for Lyme? Bartonella?

Does she work for a hospital? This is happening a lot this year. Here's an article on a nurse who was fired from an Indiana hospital after almost 22 years there. Its a travesty, and seems unconstitutional. http://news.yahoo.com/nurses-fired-refusing-flu-shot-224637902--abc-news-health.html

What types of fillings do you ask for? I know there are white ones just don't know enough to know what to ask for. Thanks for any advice. The white fillings are composite or porcelain. I believe composite is more commonly used, but can't remember the differences. You can ask your dentist the pros and cons of each. If you are replacing amalgams its crucial to find a dentist who knows how to remove them safely. Otherwise, you can end up with mercury poisoning just from the process of removing them. You can find these dentists on the IAOMT web site.

Thanks for posting this. If someone feels their child absolutely needs the flu vaccine, this is the only type they should consider. NO child - especially not kids with immune system issues - should be injected with mercury or have amalgam fillings (49% mercury) placed in their teeth. Mercury TRASHES the immune system.

Has Dr. J had you look at mold exposure/toxicity? Many of the symptoms overlap with Lyme, and many Lyme patients find they are also susceptible to mold toxicity. We are dealing with it right now. You can test your home for $300 and there are several blood tests that can be indicators (C4A, MSH, VEGF, and HLA genetic testing). I think there are several others on here/Lyme forum who've dealt with mold toxicity too. Its easy to look at your house and think there couldn't be mold, but you can't tell by looking. Also, many schools have flat roofs that are many years old and are susceptible to water damage/mold.

Glad you're getting him tested. My ds12 just had Mono. He was extremely tired (but not sleepy like yours), minor sore throat, stomach ache and bad headache for weeks. He never had a real fever - just an occasional low-grade fever in the beginning. His IgM was neg, but his IgG, which we just happened to have tested last June, had more than doubled. The doctor called it more of a "chronic" infection because of that. Each child is different. Our neighbor said he was sick for most of 4th grade with mono, and a friend's son was sick for 3 weeks last year, but had a very high fever and his throat was a mess. Make sure you look at/get a copy of the labs, because if the IgG is elevated and IgM isn't, they might just tell you he's negative, when it could be that he was exposed earlier in life, and is now having a reoccurance.

Some other things to consider that might give you clues: Is anyone else in your family sick, even if symptoms are mild? Has everyone been tested for strep? Did she have mild or subclinical symptoms before October and then had a dramatic worsening? Or was she completely "normal"/healthy until that moment? Have you tested your house for mold or done the HLA test on her for susceptibility to mold toxins(also looks at susceptibility to Lyme toxins)? Mold toxicity has very similar symptoms to Lyme, and therefore PANDAS.

I'm glad you mentioned this book! I have it, but have only read certain sections. I need to sit down and read it cover to cover.

Also wondering, if you don't like her doctor, can you switch to Dr. M there?

Sorry she is struggling. Was the 10 day course of Amox to treat strep? Did she first develop PANDAS in November? It wasn't clear from your post. Did Rothman end up doing the Lyme and coinfection testing? I remember you posted about joint/muscle pain a while back and were going to look into that more. My son never waxed and waned - he had a sudden severe onset in 2009 and never got better. We have been slowly but surely working our way out of the pit since we started Lyme treatment in 2010. He still struggles with some anxiety, especially around school, but has lost many of his other symptoms. I'm sorry I can't give you much advice. It would help if you shared her complete story, and then I think you'd get a lot of feedback on what you might try next.

So, he got in for 3 hours today (the full time we'd planned on) and felt very proud of himself! Nancy, We're at a small private school and they are willing to do almost anything for us. We have a "go to" person who knows the entire story and situation, and I check in with her fairly often. We talked today about having him go first to his homeroom/English teacher, who has dealt with anxiety herself and is just fabulous. She's almost always in her classroom, so she's his best bet if he needs help. Then, second choice if she's not around is assistant vice principal, who is the "go to" person I mentioned. She's thinking about who should be his third back-up. Smarty, I'll take a look at anxietybc.com. Thanks for the tip! We are deciding together how/when he will get to school, but I am not giving him the option of sitting with me in the daycare room anymore. Its either get in or go home. I don't have the stamina to sit at school with him for hours a day anymore, and it was starting to feel like a counter-productive bad habit. PankaKid11, I'm not sure where you are in your treatment process, but its taken us 3 1/2 years since PANDAS/PANS onset to get to the point where I feel like I can push him to get to class every day. He got sick at the end of 2nd grade and missed a lot of 3rd, including the last 6 weeks of 3rd when he just refused to go anymore. We left that school and at the small private school he now attends, I set up lots of support for him and on days when he was too scared to get in to class I would try to just get him on campus. Often we would sit in a room they use for after-school care and he would read or do homework or sometimes cry and beg to go home. Sometimes he would settle down and then get up to class, and that was always the goal. However, there were many, many days we couldn't even get in the front door, but we always tried. It has been a very long process and I've probably made a ton of mistakes. He has reached the point in his recovery where many of the original symptoms are gone, and although he still has a fair amount of anxiety, I think he's ready to push over this hump. I really think we're at the point where this is, in part, just a bad habit, and also at a point where he can be helped by ERP (if we can just find a good therapist). If your son is still very ill and symptomatic, I wouldn't expect him to be able to do much yet. I'm sure if you start a thread and ask for ideas, all these smart ladies will chime in with fantastic suggestions. Its also very important to be at a school that supports him and your family. Another option is to homeschool for a time while he is treated, and then try to get him back to school when he's more stable.

I did ask USF/Storch for local recommendations, but the only one they gave me was 1 1/2 hours from our house. The psychiatrist has recommended a therapist who originally did not return my phone call, but the psych says this woman "gets it done." So I put in another call to her today. She's 15 minutes from the school, so doable. He didn't get in again today, so I'm feeling very helpless. Thanks again for any/all suggestions. I am listening, but just too tired and down to write much right now.

Glad to hear you figured it out! That's huge. Some kids are just sensitive to some things. My son can't take fish oil because it causes him to chew on his clothes. I would try to up the Culturelle if she's tolerating it, because one capsule of that contains fewer organisms than the Custom Probiotics.

I appreciate all input and suggestions, even if it is harsh. That's ok. There's no way around it. School started again this morning, and it was a huge flop. We got into the school and to his locker, but he freaked out, started crying, said that losing Xbox was too much pressure, he couldn't do it, he was going to have a terrible life, etc. When he started saying he wanted to die and threatening to hit me, I cut him off and said it was time to either go in to class or leave. We left. He only needed to get in for 3 hours - and once he started freaking out I said I would pick him up after 2 - but he couldn't do it. Afterward, he said he actually felt relieved because now he didn't have the loss of the Xbox priveleges "hanging over him" now. Weird. His current fear of going to school is that he will do something wrong (like hit someone) or say something wrong (swear, yell at someone). That's all he's told me, but there is likely more. I don't know how to do ERP on something like this, and haven't yet found a local therapist to guide us through it. Last year he was afraid of his teacher and getting in trouble, as well as one boy who he said was picking on him (that boy left the school and so did the teacher). The year before, it seemed to be more separation anxiety. It just keeps morphing, and I really feel that if we can get him in consistently, even if its just partial days, that will be the exposure we need. I think its the missed days that are hurting us. So I'm going to continue to push, and take away priveleges (one a week, max). I know it sounds mean, but I really think its the right thing for him right now, and I'm not positioning it as punishment or doing it in a harsh way, just very matter-of-fact - "If you can't go in every day in a given week, you lose a privelege. It's my job to push you, and I do it because I love you." He gets it - after he calmed down today, he used the phrase "tough love," and I said "exactly." Also, if he loses all his computer, tv, xbox, etc priveleges and still won't go, that tells me something. And it will probably motivate him to participate in his own recovery - like actually telling us everything that's bothering him, or actually talking to a therapist instead of burying his head in my lap. In the meantime, we are talking about saying "I can do it" instead of yelling "I can't!" He really likes the show "Biggest Loser" and I am watching with him and making comparisons between their situation and his. How hard they have to work and how the woman who just quit the show repeatedly said "I can't." We're talking about focusing on just right now, or just today, instead of getting overwhelmed by the thought of going to school every day for the next 100 some days. I can see that we will most likely need USF to get through this, but I just can't travel right now - I'm in too much pain and too tired. I'm going to set it up for summer and hope that I'm well enough by then. We are also going to have to move out of our house due to mold toxicity. Things are looking a little daunting right now. Thank you all for your suggestions, comments and for sharing your experiences. Your support is getting me through this.

Out of desperation, I tried Motrin/Advil (same thing) for my DS a long time ago, but it didn't do anything for his PANDAS/PANS symptoms. IMHO, Ibuprofen or NSAIDS in general are not a good idea for these kids, as they contribute to leaky gut. But I do understand that for those who see a big improvement, it can be helpful as a short-term fix. I hope no one is relying on this as a long-term treatment, as it has the potential to do more harm than good.

I would test for Lyme, Bartonella and Babesia through Igenex. Also, nasal staph infection - this was a big one for us that only the LLMD caught.

Thanks to all of you for your well-thought-out and detailed responses! I am going to have to read through them a couple more times as I have brain fog at the moment - just one more challenge to make this all even more fun. I actually had already decided - and communicated to ds - that after the break, he will have to get in every day or start to lose "things." Mostly this will consist of the things he's most into right now - Xbox, tv, computer, etc. I told him that I know he can do it and its my job to push him. My instincts were telling me it was time to push him hard, as gentle prodding, rewards and nice therapists have failed us miserably. Also, after he was home for 7 weeks with Epstein Barr, he got back to school for 2 or 3 hours a day for two weeks straight. He had one day when he panicked, but he got in later in the day. So I was already thinking along the lines of starting out with 2 or 3 hours per day and working up, and our assistant vice principal had actually suggested this as well. There are a number of things in your posts that I will use as we try this. I am definitely going to switch to "You can handle it." That's brilliant. And he has someone he can go to when things get rough at school, but she's often not at her desk, so we need backups. The school is incredibly supportive, so we'll be able to get whatever support we need. I think I'm going to print out all your responses and keep them with me. One wrinkle that's occurred in the last few days is that the LLMD started him on different abx and he's obviously herxing. He didn't want to leave the house this morning and said he feels out of control. He actually hit a friend the day before yesterday, and pushed someone in anger today, which is out of character. Because of this, I may start with even less time at school, but I'm not sure yet. Any additional thoughts on this balance are welcome. Thanks again for all your support!

We've been through two therapists so far and neither helped with his school refusal/anxiety. So many here have reported such great results from therapy, so maybe I'm picking the wrong therapists. Lately he's been saying that he's afraid he'll doing something wrong at school, like hit someone or swear (and be suspended for it), and that's why he sometimes can't get in - so I believe the root cause is OCD. What exactly should the therapist be doing to help him get back there consistently? I have the name of someone local who's supposed to be very good, but I want to know what to look for so we don't waste more time and money on this. I was considering USF Rothman Center, but I am now too ill to travel, so I'd like to try one more local therapist. If anyone can give me specifics on how it works, I'd appreciate it. The last person we saw said she had worked with school refusal and would do ERP, but then she did things like fill out forms, play a board game about feelings with us and ask DS what we do when he's not in school and whether he's allowed to watch tv or see friends. It felt like a waste of time so we only went 5 times.

Yes, as others have said, this is OCD. My son still has some intrusive thoughts too, although he is much better than when PANS first hit. He used to have repetitive thoughts, but these are gone now. Her vitamin D is VERY low. Is she taking 3,000 or 10,000 IUs of D? What's her weight? My DS was a 24 originally, and the LLMD said his number needs to be between 60-70 to fight these infections (Lyme, Bartonella, Babesia, Staph, EBV). We have never gotten there, and he's now on 5,000 IUs per day as of two months ago. He is 75 lbs. You should be checking her Vit. D number regularly to see if the supplementation is helping. We are now taking a liquid Vit. D that our LLMD said is more easily absorbed. Its called D-Mulsion 1000. Did she have the racing/intrusive/repetitive thoughts prior to taking Lamictal? Antibiotics? If you can remember, these answers might give you clues as to what's causing this. If she's had them all along, its probably just a product of the infections.

My son used to do these - I don't think there are any risks. We used about a cup and the doctor said to have him stay in at least 15-20 minutes.

Thanks for posting T. Mom. This was the most alarming post so far. Your daughter is the same height and 7 pounds heavier than my son and the doctor is recommending admitting her for inpatient treatment? What exactly is refeeding? Alex ate more today. The recommendation of leaving a tray of food out and not asking him what he wants to eat was helpful, and we had his favorite take-out for dinner. Our pediatrician, who works with lots of autistic, pans and other special needs kids, is recommending a smoothie with whey protein powder once a day for the additional calories, protein and glutamine. We also talked about the fact that some of the weight loss is probably muscle loss from laying around at home for 6 weeks. She is also rechecking his WBC, which was low 6 weeks ago, and iron and zinc levels. She said she doesn't want him to lose any more weight, and wants to work on putting on the weight as he recovers from epstein barr. We'll see how it goes. I don't think I'm seeing signs of anorexia, but I'm aware I'm no expert, so I am going to monitor this closely.

Thanks LLM. What is the L-Lysine supposed to do for EBV? I'm hesitant to give him anything that would increase anxiety, as that's our biggest problem right now (other than the EBV). Regarding the zinc, are you saying you take a chewable supplement and can't taste it? How much does your son take per day? This might be worth a try to help his appetite and immune system.

Thank you so much for your feedback. Right now, I don't think the weight loss is due to PANDAS/OCD, but thanks to your comments, I'm aware now that it could change quickly. In his first year after sudden onset, he did have some restrictive eating due to aversions/phobias - he wouldn't eat lunch at his old school because of the bees by the lunch tables and he wouldn't eat if he could see a sticker - so I'm aware its a danger for us. Looking at your comments, I notice that he doesn't get upset when I try to get him to eat, he's just indifferent. Yesterday I found myself feeding him a piece of peanut butter toast that he was ignoring, but every time I held it to his mouth he took a bite. I'm not hearing different excuses for not eating, except that he's full. I loved the idea of putting out a tray of snacks - it will make him more likely to eat and will be a visual reminder for me to keep the food going in if he's not doing it himself. I'm still unclear how serious his current weight is in physical terms, but I calculated his pounds per inch of height and it was 1.18. I figured out that if my weight was 1.18 pounds per inch, at 5'5" I would weigh around 76 pounds - that really alarmed me. Also, when he changed for bed last night I could see bones sticking out everywhere, almost skeletal looking. So I think I will call his pediatrician and just check in with her about the weight loss. In the meantime, I will keep my eye out for any signs of this turning into full-blown food restriction on his part.

My 12 1/2 yo ds has been home sick with Epstein Barr for the last 6 weeks. He hasn't had a good appetite since he got sick and now I'm getting a little concerned. He was thin to begin with - 76 lbs at 5 ft tall. But he's lost 5 lbs in the last 6 weeks and isn't showing any sign of a plateau. I do not think he is restricting his eating purposely - I think he just doesn't have much of an appetite and has been dealing with an upset stomach. Should I be worried about this? I've been focused on so many other things, and have not been well myself, but now I'm afraid I've let this go. Please, if anyone has experience with this, let me know what you think. Am I worrying needlessly, or should I be on the phone to the doctor? How thin is too thin?

I promise you, if you are interested in what the government is doing/not doing about autism, this is not boring! http://www.c-span.org/Events/Lawmakers-Look-into-Federal-Response-to-Rising-Rates-of-Autism/10737436113-1/