aidansmom

A couple of years ago I had a problem with my eye - increased floaters, turned red like it was infected, didn't feel right. I was referred to a Retina Specialist who could see what the problem was. He said it was probably Toxoplasma and he could see an infection and he saw scar tissue around the same place as my current infection. The scar tissue showed that I had had probably obtained the infection previously - who knows when - anytime in my life and it laid dormant until it reactivated. He did not run tests on me but said he was pretty sure it was toxoplasma. He prescribed about 5 weeks of antibiotics - wish I could remember which antibiotic. It was before we treated pandas/Lyme for Aidan otherwise I would be familiar with the antibiotic. I wonder if toxo is a player in my son's condition.. We just recently ran a blood test to look for antibodies for toxo in Aidan - awaiting results. A new doctor we saw ordered these tests. He also looked into my eyes with a light and could see the area that had been affected.

I would think twice about going to an infectious disease specialists for Lyme especially if you think that the Lyme has been there for a while and if you there is a PANDAS type reaction. There are 2 standards of care for Lyme. Here some websites that talk about it. http://www.ilads.org/lyme_research/lyme_articles4.html http://www.ldsg.org/index.php?id=71 Most infectious disease doctors beleive in the shorter term treatment of Lyme (what the Infectious Disease Society of America recommends) but most of our kids that may have lyme may benefit from longer term treatment. To investigate Lyme make sure you go to a LLMD (Lyme Literate Medical Dcotor).

Her weight would be a factor here - how much does she weigh? That is important to know when looking at dosage. Aidan is 55 lbs and for that weight I was told that 2 mg is the lowest treatment dose and that the averege treatment dose was from 4 to 6 mg. If your daughter weighs more than Aidan than you are not even at low end of treatment dose, Aidan started on 1 mg, then moved to 2 mg after a week or 2. We saw positive results pretty quickly (even on 1 mg) and life became a lot easier. A couple of months later we him to 3 mg and then he now is on 4 mg. He still is on the low end of average treatment dose. If you think your negative things are happening due to this medication and that the negative outweighs any improvement then perhaps this drug is not the one for your daughter. Also, as someone has mentioned - glucose levels should be checked with abilify.

How much does she weigh? Were there any other changes? It seemed like things were going better a few days ago for you, did this happen after the addition initial of the abilify? or do you think something else caused her to have the good days?

If you noticed that the adhd meds obviously helped with symptoms when you added it in I would think twice before taking him off. Even though it may be the Lyme/bart/pandas that may cause the symptoms if there is a drug that helps with the symptoms while going through treatment it is often worth it. As we know treatments can make lyme symptoms worse so they may need the other drugs to support them through treatment. Tenex did not help Aidan for ADHD - I think a lot of people thought it would but when it had no apparent affect so we took him off with no apparent worsening. Abilify helped him immensely so I will keep that to help him through treatment. The psychotherapist in the link that LLM gave you is a good resource. I spoke to her on the phone and she does phone conferences - perhaps she has recomendations that your ped could follow up on - not sure what she knows about the different medications. I ended up not scheduling a phone conference with her as the abilify pulled us out of the crisis but I know she is there if we get to a low spot again (or if I was having trouble with the school). I was looking for a psychiatrist at the time but thought it would be useless if they were not Lyme literate. I think that would be a dead end. We are blessed to have our neurologist to help with these kind of meds. We don't live near you but I wonder if there is someone like that in your area. She is somewhat knowledgable about PANDAS and accepts the Lyme diagnosis. She is somewhat traditional as far as prescribing meds but she is open minded. She treats a lot on the autism spectrum and has her own practice but does not take insurance as we know some of the best lyme/pandas/ doctors don't. But it sounds like the ped you have is a lot like this willing to help you.

Would nattokinase work for this? Aidan is on it for biofilms but I was thinking that it might help with this also. Worth looking into as it is a supplement.

Lilly - Just to add a bit more. Some of Aidan's sypmtoms were also snaping and lashing out at people like your mention. for him it was often physical aggression and fight or flight kind of behavior. It was often out of the blue. His experienced special ed teacher said that she couldn't find the triggers for his behavior. She said with other students that usually she can figure that out and keep the behavior from happening but could not with Aidan. To me that confirmed his diagnoses as the trigger was inside his body and brain. He was already in a special ed room all day with kids with autism, etc where they may understand and expect a little more behavior like this but I was so afraid that they were going to put him in a school for emotionally disturbed or something- not sure what they were going to do if it continued. Luckily we found the abilify! He still has issue with some of the behaviors but it is much more managable.

Abilify worked wonders for us. Both our neurologist and LLMD recommended it and we started it when we were at a really low point of behavioral stuff. We think this bahavior was due to herxing with Lyme and Bart treatment. We started out low and we saw results pretty quickly. This is the first behavioral type drug that has done anything for us. Of course every kid is different on what will work for them so it may not work for you. Aidan is 50-55 lbs. IN the spring we started with 1 mg and moved up to 2 mg (minimum treatment dose for his weight) in a week or two. I saw results on the 1 mg and pretty quickly (a couple of days). I guess the average dose for Aidan's weight is 4-6 mg and we started seeing some behaviors again a month ago, so we moved him up to 3 mg and again saw results but it took more like a week. We are about to go on to 4 mg (actually 3.75 mg to save money - see below). I think it would be typical to take a week to see results but ask your doctor. It has helped with impulsive behavior, adhd, concentration, etc, He seems to be performing better at school and able to communicate better sinc being on it, It is very expensive. (It is not generic yet and I had heard next year but when I search when online I think it won't be until 2015.) A while back I saw on the abilify website that they had a program where they would help you with your copay for 18 months so you might want to research that. It is for new prescriber so since Aidan had been on it for a few months we were not eligible for it. I save some money by getting it mail order through our prescription mail order and by buying larger size tablets and spliting them. Also I think it is important to check glucose levels when on it, hopefully your prescribing doctor would be up on this.

We go there I will PM both of you today or tomorrow. Elizabeth

Nystatin will kill Sach Boulardi so if you give both they need to be seperated. Our LLMD actually took Aidan off of Nystatin and put him on Sach Boulardi. But is should be OK to take Nystatin with antibiotcs or with probiotics that consists of good bacteris (but not yeast like Sach Boulardi).

Here is another article about panic attacks. Different article, same author? http://www.rodale.com/lyme-disease-panic-attacks?page=0,1

Found some quotes from our LLMD regarding LDN in LLMD's clinic notes from visits/phone consults: from appt in Dec. "Brief discussion today regarding LDN and how it can boost natural endorphins and has benefit for pain control as well as boosting imminologic funtioning." ohone consult in mid-March: " "clinic is supportive fo a trial of LDN as this has beneficial effects on immunilogical functioning." Finally tried it in mid-march as state in my post above. I think as in most therapies for these diseases it will have obvious benefits for some and not for others.

Our neurologist suggested it more for behavioral stuff. She works with a lor of kids in the autism world where I think it is also used and she said it also is used for people with issues like PANDAS/Lyme. (Aidan has developmental delays and some people assume he is autistic) I may be wrong but I thought there was an Anti-inflammatory property to it. I know it also it somtimes used for people with Chrohns and MS (but isn't some of this possibly misdagnosed Lyme?) When I asked our LLMD about using it she was all for it because benifit to the immune system. We decided that we would try it. Our neuro prescribed 4 mg capsules (Aidan is 50 lbs) and the Dr did not specify when to take them. After I researched it I decided to give at bedtime and I decided to start low and move up so i split the capsule first into four parts for a few days and then into 2 parts for a few days and then gave the full capsule. We did not have a huge problem with sleep but they say that is the main side effect but it usually goes away after a few days. We had just started supplementing with GABA at bedtime a week or two before that which I think had helped with his sleep so I think that we were lucky with the timing of that! Anyway, we started LDN about 2 months ago when we were at a low point behaviorally - I think due to herxing. He was aggressive at school and constantly agitated - hyper, throwing things, running off at school etc etc. Adding LDN did seem to help with these behaviors and they toned things done a lot making things managable. As a side note we went on to introduce low dose abilify and we started with only 1 mg which isn't even treatment dose and we have seen further improvement. Will go up to 2 mg today and stay there for a month. The LDN seems like a more natural solution with less side effects but did not go far enough for us. (I am a little afraid of the abilify but hopefully it will get us through the treatment for this disease)

We also haved had some seizure like experience with Aidan - a couple of different kinds. The first ones that we noticed was when he was 1.5 years old but were more movement related - now a couple different types that seem like true seizures. Nothing that shows on EEG. Perhaps there was more going on when he was younger also but we just weren't watching. It is common for Lyme patients to have non-epileptic seizure activitiy per our LLMD and I would think that it also could be a symptom of PANDAS. We think that Aidan has congenital Lyme and Bartonella (but also had issues with strep through the years.) I don't really like to bring Lyme up on this board so much because it causes waves but doesn't your other PANDAS child have some evidence of Lyme? Could it be congenital for both? Symptoms are far more important in Lyme than testing so I would consider getting her to a LLMD as soon as you can. I sure wish we had discovered either PANDAS or Lyme when Aidan was littler - perhaps he would have had more of a chance to develop normally. But we will not give up.

Has the LLMD seen all these test results? I think Aidan's vitamin D is around the same level as your DD and our LLMD is having us give vitamin D3 drops to supplement. You can buy these over the counter. Just recently Aidan had low T3 and T4 was low end of normal. Not exactly your situation but our LLMD said that this is common in Lyme patients- wondered if that applied to any thyroid inbalance such as your high TSH level. I also wonder if this was equally common in PANDAS. Our LLMD suggested low dose armour thyroid which is a prescription.

We suspect Aidan has congenital Lyme. I tested IGenex positive on both IGM and IGG about a year ago but have chosen not to treat. It is hard to determine if I actually have symptoms worth treating and we are so consumed with the cost and effort to treat Aidan who who has huge issues that cost doesn't seem worth it for the rest of us. But, a symptom I have worried about is that my hands get tingly when I sleep. It is not consistent. Lately it has been happening a lot and there was a more than a year ago when it happened a lot but every once in a while in between. I think it is normal for it to happen every once in a while - like if you sleep on hand funny but not every night. I also think that this was activated somewhat by stress. Early this morning (before wake up time) my other son (11) also came into our room and said that his hand got tingly and was numb. He said that he slept on it funny. He got in bed with me and snuggled up and when he went back to sleep I noticed that he had little muscle twitches (wouldn't notice if i wasn't snuggled up with him) throughout his body that kept going on for a while. Noticed Aidan was doing this one night when he came in the early morning hours to sleep with me. I was wondering if this was normal for kids to have these little twitches while they sleep and if so if it was normal for it to go on for some time.

Dr.Demio is well known in the autism comminity of NE Ohio as well as nationally. I believe he has a son with autism also. There is one person in PANDAS ohio group that I knows takes her children to him for both PANDAS and autism but I don't think she frequents this board. We have not been to him but have thought about it. I think he does look at the immune system quite a bit and will order a lot of testing. I also see that know he treats Lyme disease also which I think is relatively new for him - I was suprised when I saw this. I don't believe he is covered by insurance and can be expensive but I think he will try to order testing that is covered by insurance when possible. Perhaps you can PM me a email address and I can send it via email to the people I know who have visited him to see if they want to give feedback about Dr DeMio. I also have a friend who takes her autistic son to him but not for PANDAS.

agree with Bulldog and orion. It is just not that clear cut to discuss certain infections (even Lyme)only on Lyme board. It really is not black and white for many of us. Many on the PANDAS board find out later that they may have Lyme or other coinfections. Many like my son have had issue with strep. Also, there is a major overlap in symptoms between the two. On this topic, it is simple enough for someone who thinks that it does not apply to their situation to just stop reading the topic. Babesia is something that has been in the news lately and has even been spread through blood transfusions. http://www.nytimes.com/2011/06/21/health/21ticks.html?_r=1&ref=health No tomatoes though.

Here is a link to Dr. Phil and his staff after the show discussing how the show went http://drphil.com/uncut/page/uncensored/

Link to clip from the show http://lymedisease.org/news/lyme_disease_views/dr-phil-lyme-preview.html

Can you guys tell me more about clostridia? Is it the same as C-diff? It sounds as if it can causes violent behavior. What are the main symptoms? (besides the behavior?) My son tends toward constipation - not diarrhea. Could this still be a problem for him? Dawn - I just read your post. I guess I had skipped over it. Praying for you and S&S and families.

I also can relate to much of what you are saying. I also have been a sobbing mess a lot lately - especially because Aidan doesn't discriminate between doing his crazy behavior at home vs school or even in public. We can be in public and he can grab a the wrist of another child that may or may not know (usually a smaller female child) and not let go (and you can't always predict when it is going to happen.) It is hard to admit but I have thoughts lately of just giving up and then putting him a psych place but I no I can not do it at this time. Being isolated in this with the people around me not understanding Aidan or what we are trying to do makes it tough also. Just like Momcap, I was wondering about the relationship between when you took her off of the antibiotics and the behavior. You may have some clues in all of this that will help you in the long run that will help pinpoint what is going on. I wonder about Bartonella, I thought I had read somewhere that it can relapse quicly after taken off antibiotics. I have the impression that it is worse in the behavioral issues than Lyme. Does the LLMD think she has it? Also, are you being treated for a TBI also? It is so hard to determine what causes what - is it the infection (and if is - which one?), herxing, autoimmine, yeast, etc. And it is so different from one child to the next. For your child it does not seem like the steroids/IVIG have worked. You are so brave, smart and a good Mom. It is so hard when it feels like you have to be super human just to parent this special child. You will get through this and figure it out. Hang in there!!!!

Thanks LLM! I think we are OK with yeast but am not sure. His bottom was really deep red after we started riftabutin in Feb - not strep, maybe yeast but LLMD thought it might be irritation from herxing. We did go to 2 a day on the probiotic and added more Saccharomyces boulardii and did a few days of Nystatin cream and the redness faded away after a while. Do you do a garlic supplement? Is that good for yeast? LLMD said that riftabutin goes after biofilms and may be stirring things up - hence the behavior might be herxing. Also when he started back on azith in at the beginning of this year it seemed to iritate him then adding the riftabutin was added on top of that tipped the boat even more. He is in a contained multiple disabilities room, is very delayed - nowhere near grade level (although we really thing there he knows way more than he can demonstrate and what he does demonstrate seems to vary from day to day). So he is definetly on an IEP. The scheduled IEP meeting is tomorrow but we will also start dealing with the behavioral stuff too and I think it is unlikley that we sign off tomorrow. My husband and our support person from the county seem to think that it is not important to bring up the Lyme but I think it and treatment is a huge factor in why his behavior (and learning) varies from day to day and why they can not identify the triggers. Actually I am not all that worried about him educationally but I don't want him to be at home all day and isolated from others and I know I can not be a good care giver to him if I am with him 24/7. I wish I felt like I would be good at home schooling. But.. I really want to push through with the Lyme treatment so that perhaps he will be able to make some gains educationally. It just seems that if his illness was something recognized like cancer than we would be talking about hs specific illness and how it affects all aspects of his life including behavior. LLM - I also may be PMing you on some of his blood tests that come back deficient in some minerals (if I can get to the point where I can address that) - I have noticed that you seem to be knowledgeable about that stuff!

Aidan is really having trouble lately with things like grabbing other kids and pulling them down, running off, throwing things, can’t stay in seat etc. This happens at home and school. We believe that Aidan has congenital Lyme and possibly bartonella. He is developmentally delayed and is in a special needs classroom and has never been able to be mainstreamed due to his behavior. His speech is delayed making communication difficult. This behavior is not new but has been especially problematic lately and he has gotten quite physical. With treatment we have seen increased speech and cognitive ability, increased eye contact and have had some calmness along the way but a lot of downs too. We have seen patterns of herxing in the past. Our doctor pulses antibiotics and that often has enabled to see on and off herxing based on the treatment days. Right now though things seem pretty constant and reminds me of behavior from a couple of years ago before we started the first intervention that appeared to even helped with Aidan which was GFCF diet (before PANDAS then Lyme) LLMD thinks it is herxing, especially with some recent changes in his antibiotics but I am not sure what to do about school. His teacher is really not knowing what to do about the behavior and has actually suggested that we go off all meds (translation – antibiotics) since “It can’t be any worse”. (I am tempted to do it and just see if it gets worse!!! It has been this bad in the past and possibly worse) I don’t think that she buys the Lyme diagnosis and she doesn’t understand herxing. However, she is an experienced special ed teacher and I think she really means well. When I asked her if she has had anybody else like Aidan she said that there are other kids with behavioral issues but she can usually find the triggers and control the situation and that this is something that she specializes in. She said With Aidan there doesn’t seem to be a trigger and even things such as what he likes to do, etc. change from day to day. Actually I believe this information supports the Lyme diagnosis. The reason things are so variable – the trigger is the bacteria inside and the toxins from herxing throw in some GI symptoms and muscle/joint pain in there too. So… 1. How much should the school be involved in the medical aspect of Aidan’s condition? It is so frustrating to feel so isolated in trying to manage this alone without anyone in my area to help with this. I wish I could work with a team of people that can help me through this but there is no one in my circle who gets what this is like. This also makes me feel like I am in some kind of fairy tale world by treating Lyme and start doubting myself and what we are doing. I have been so strong with this for a year or so but am feeling so weak right now. I don’t want to be defensive and try to educate them to just have it fall on deaf ear but to me it seems like important info for whoever is educating him. If this was a doctor instead of a teacher, I would be moving on. 2. I agree with them that Aidan should not be hurting people at school but what are my alternatives? We also can have a problem with this in our daily live. We can be out some where and he is acting fine and all or a sudden he will grab someone’s wrist and not let go –w e don’t even need to know the person. Do I pull him out do school all together? I could not handle having 24/7care of Aidan – I don’t think I can handle all his meds, etc. with him being with me 24/7. Is there something that I can make the school district do? Home Bound? Special School? I know if he wasn't in special ed he would have been suspended by now. 3. Any Lyme/educational advocates out there that can help me with this situation?

I posted this on the Lyme board but I thought I would try over here also. Just wonder if anyone has used Low dose naltrexone? Did it help? What dose?