aidansmom

We see him = first visit Jan. 7th and second on Feb. 18th. I'll PM you - curious if anyone else on here sees him.

My cousin did respond today and said that it was not his area of expertise but he did email another attorney in his office and has not heard back. I will let you know if he comes up with anything. A patient advocate like Wendy mentioned sounded like a good idea to me. Wendy - how is this different than an attorney? any suggestions about how to find one. It is stressful enough to go through this illness but to have to deal with financial burden on top of it makes it tough. We have to fight on so many levels. I will keep you and all on the board in my prayers. Elizabeth

I again emailed my cousin who is an attorney and lives in Liberty to see if he knows of anyone that could help you. When I emailed him a few weeks ago - I had emailed both him and his wife. Back then, his wife did respond with a very nice email but said she would leave the legal stuff to Jami to respond to and I never heard from him. I just sent him another brief email requesting that he let me know if he any ideas or not. I will let you know what he thinks. Elizabeth

We just got a call from our LLMD's office saying that based on my son's lab results, specifically his prolactin and ACTH levels (not sure if they are high or low), that he should see a pediatric endocrinologist and have an MRI of his brain and pituitary gland. So now I need to find yet another Lyme friendly MD! Just wondering if anyone has had issues like this or if anyone knows about this and it's relationship to Lyme, if any. We travel to our LLMD on Friday so we should find out more then. Elizabeth

Our most pronounced symptoms in our 8 year old are behavioral/cognitive perhaps because these are the most distressing to me as far as him functioning in the world. I guess I can't be sure that they all can be attributed to Lyme but I am hoping and that they can be resolved with treatment which we ar just starting. We have ADHD, aggressiveness, ODD, can't follow instructions, sensory issues, anxiety and he is way below age level academically but we think he may be actually really smart. He has had issues like this since an Early age so we are thinking congenital Lyme. He also has had frequent infections including strep, high strep titers and his behavior that waxes and wanes (although baseline isn't so great either but way better then when he is not feeling well) and improvement with the gluten free, casein free, soy free diet (which out LLMD says is very common in Lyme patients), Elizabeth

I was wondering if anyone out there knows when augmentin might be prescribed versus amoxicillan. I know augmentin is amox. combined with clavulanate potassium - what makes this different than amox. alone? or in what situations is one prescribed over the other? Augmentin seems to be the preferred antibiotic for PANDAS so I thought someone here might know why. I also am asking the same question on my thread about Aidan's ear infection on the Lyme board. Thanks, Elizabeth

Thanks Wendy. So, I am trying to decide if I should give the amox. that the urgent care doc. prescribed or if I should return to the augmentin that Dr. B. had prescribed (still have refills). We stopped the augmentin almost 2 weeks ago before this all started. I know I am not supposed to look for medical advice on this board but I was wondering if anyone knew in general when a doctor prescribes augmentin over amoxicillan. I have sent emails to both Dr. B and and Dr. J and are awaiting their advice particularly Dr. J but being a Monday it might be a while before they get back to me. Our appointment with Dr. J is Feb. 18th. Elizabeth

There are some similarities what happened to us on Saturday night. My son who is 8 (verbal communication abilities much younger) came to my room at 1:00 am and seemed really agitated. He kept wanting to get up and go "down" (which meant get up and go downstairs - I think) He often wakes at night but usually goes right back to sleep. But he seemed really anxious and he did not seem that he would settle back down for sleep for anything. I think he kept pointing at what he thought was a dog in the room and then he seemed to think there was a kitty in the bed which made him panic (he is afraid of cats). He finally settled down after a snack and some motrin. The next day we saw ear drainage and he has an ear infection with a burst eardrum. I was ready to attribute all of this behavior (including hallucinations) to PANDAS and/or Lyme but now I am wondering if it was just the pain. I didn't expect an ear infection as he is on azithromycin. Elizabeth

Aidan was first PANDAS and now we are venturing into the Lyme world (IGG positive by Igenex criteria). We started seeing Dr. B. (one time) but then went to see a LLMD (Dr. Jemsek) but have only done an initial exam and lab tests - have not started treatment. Aidan has been on zithro since Dr. B. changed to it from Augmentin almost 2 weeks ago based on the Igenex test. When we made the change I first got all kinds of behavioral symptoms (aggressiveness, loud vocalizations, standing on tables, etc). Then, a few days later he got sick, first raspy throat, then huge amounts of thick nasal drainage. Yesterday we noticed ear drainage so we ended up in the urgent care during the super bowl! (At least it was not busy at that time - got right in.) Doctor saw pus in ear and thought the ear drum had ruptured although he could not see it due to the pus. He prescribed amox. It seems amazing that he got an infection while on zithro. Also, in hindsight I think he had a sinus infection also. Wonder if this is strep. So, now I am wondering if amoxicillan is the best choice since I doubt that the urgent care doctor is versed on PANDAS or Lyme. Does anyone know the difference between augmentin and amoxicillan? I know augmentin has amox plus clavulanate potassium, but when do you prescribe it over amox. alone? The urgent care doctor also prescribed ears drops which have steroids in them. I know that it is a good idea to avoid oral steroids with Lyme but what about in something localized such as the ears? Elizabeth

Update on our situation - I wrote this last message on Monday evening and on Tuesday morning he started having a hhuge amount of thick nasal drainage all day and a fever of about 100 primarily in the morning. This is his 4th day of these symptoms. So, I am left in wondering if this is cold or flu virus, a herx, a bacteria that the augmentin was holding at bay but the azith is not getting to or a combo. Not sure whether to wait it out or to take action. Elizabeth

Yes we have him on it still and things seem to be a lot better than when I wrote this. I'm holding my breath as I type that... He definitely got worst immediately when starting it. It's so hard to know what to do. It seems no case is just like the other. We go back to our doctor in two weeks and it seems like forever from now. I'm thinking about finding an LLMD as everyone seems to benefit from that type of doctor. Praying for a miracle for us all, Cindi Cindi -I am glad to hear that he is doing better. It sounds like you have a great doctor. This morning I am actually thinking my son may have a really bad cold or the flu as he is really stuffed up now and his brother's voice is a little hoarse now. So, at this moment I will wait it out. No school today anyway with ice and snow!

I am not sure whether to piggyback on this thread or to start my own topic but it seems similar to Cindi's situation so I thought I would just post here. Cindi - I was curious if you have kept your child on the azith or did you discontinue. How is he doing?. I do plan on trying to get in touch with the doctors tomorrow regarding this but I almost feel as if I am between doctors right now. We met with Dr. B. in Conn. for PANDAS in Dec. and he prescribed augmentin for Aidan. Right after thet appointment we found out that Aidan son had a positive Lyme test. A couple of weeks ago we had an intial consultation with a LLMD but we have not started treatment - I was given a list of supplements to try (which I am dragging my feet on.) and blood tests to run (which should be in by now) and we are going back in a couple of weeks during which I believe that we should start treatment. Since I can not travel to both doctors I changed my follow up with Dr. B.last week to a phone consult. Dr. B. changed Aidan's antibiotic from the augmentin to the azith. since azith works better on Lyme. We started the azith last Tuesday and since we have changed we are seeing worsening behaviors at home and school - more aggression, whinniness, loud vocalization, standing on chairs. We have also noticed that his throat is really raspy and he somtimes has a raspy cough. So, I am trying to figure out if this is a herx or if it is a reaction to the azith. I guess there is a third option that he has some type of virus/illness that is causing the raspy throat and exacerbation. He did seem a little off right before the change in antibiotics but the behavior got bad they day after we made the change and we noticed the raspy throat came on day 5 of the azith. His behavior today is still extreme today which is day 7. I have not tried anything to help herxing but I picked up some benedry tonight. Any input on this? Elizabeth

So nice!

My PANDAS/Lyme son seems to have joint pain that gets worse at times. He is speech delayed so it is based on my interpretation of what I think he is trying to tell me. I think the location varies for him but in the knee the most and he has seemed worse when he was in a exacerbation. I also have a question about joint pain for my other 2 kids. Since we have been looking into PANDAS and even more now that we have been looking into Lyme there are things about the other 2 kids that I wonder about - whether they might have Lyme too. If they do they are not nearly as severly affected as Aidan is. My daughter who just turned 12 is an Irish dancer. A year ago she had hip pain in one hip - went through PT and it went away when she strengthened her core. In June she was diagnosed with Severs disease - when her heel hurt - this very common at this age when they are growing so much and she was doing track and dance at the time so this made sense also. She also complained of a lot of symptoms at this time - racing heart, anxiety, tight chest, stomach issues etc which I chalked up to anxiety (now i WONDER!) The heel and other symptoms got better at the end of the summer. Now she has hip pain again in both hips but only when she is dancing hard. So logically it seems as if this pain is due to excercise/overuse and growing. But, I keep wondering if the pain could be Lyme related also. Now the other sibling = 9 year old boy is complaining of ankle pain and sometimes knee pain after basketball practice. I also noticed that he was sweating alot in his sleep the other night. The also both tested IGM positive for Mycoplasma and got 10 days of Azith for that and 9 year old has high ASO and Antidnase. So far, we have resoned that it is normal to have pain based on the activity that they are doing. Does anyone thing that these aches could be due to Lyme? Can sports and Lyme together cause joint pain or is it more logical that it is just the sports? would the joint pain in Lyme just come independently of what activity the person is doing? I will probably end up bringing everybody in the family to a LLMD but I am starting with the most problematic! Elizabeth

I have a cousin who is an attorney and lives in Liberty. I will try to email him to see if he can do it (not sure his specialty)or suggest someone to go to and let you know what he says. It may be a couple of days before I can get back to you. Just curious what Lyme doctor you go to. I lived north of KC for 10 years, have a brother currently living in KC north and my Dad is in Columbia. I am in Northeast Ohio now. Perhaps I should PM you also. Elizabeth

Where are you at in Missouri?

Thanks for the suggestion. It does not seem like reflux to me but that doesn't mean that it isn't so that is something to keep in mind. My reasoning - It does not seem worse after a heavy meal (for example it was not worse after I ate my 5-way of skyline chili last night and pop)or when I lie down. It is when I just eat a bite of just about any type of food including crackers that I will notice it at anytime of day. It seems like I had soap on my hands and that I accidentally got it in my mouth. It may be there all along but just tasting any kind of food will make it more noticeable. I also read that fluoride poisoning can cause a soapy taste but unless there is too much fluoride in my water... Elizabeth

My son tested positive for Lyme and I think it might be congenital so I am starting to notice symptoms I am having and wondering about them. I have been having a funny taste my mouth the last couple of days. Kind of a soapy taste and I especially notice when i eat something. I am not on any meds at this point. Just curious if anybody has had this symptom. Elizabeth

very interesting. Does anyone know of this Dr. Crist? He is in my Dad's home town.

I just got my son's anti-neuronal antibody titers from Cunningham's Lab. All of his are in the normal range and even on the low side of normal. Do the kids with PANDAS normally have high values on these? What about Lyme? We had got our CamK result at our appointment with Dr. B. last month and that number was 159. (I think I am remembering right.) Does it matter if the child was in a exacerbation when the blood was taken? Thanks Elizabeth

I believe that I have seen joint pain on a list of PANDAS symptoms somewhere in the past but I think is more commonly seen in Lyme. I believe that my son has had knee pain but I also think he has also had pains in ankles, toes, elbows but not as often as the knee. I have a hard time knowing for sure because my son is extremely speech delayed and can't fully express things like this but my observation is that is trying to tell me about things like this. Interesting enough - I think the knee pain was one of the major symptoms the last time he had a major "PANDAS" exacerbation and then it resolved somewhat since. He just tested IGG positive for Lyme but I noticed the pain before I even thought of Lyme. I think Lyme can cause constant pain in one place such as the knees or it can migrate. It can vary from person to person and vary within a person from over a period of time.

Any suggestions for a Lyme doctor would be welcome - from SF Mom or anyone else. I am in the Akron/Cleveland area, so a doctor in the midwest, lower New England or mid-atlantic areas might be a day's drive away. (It took us 7 hours to drive to Dr. B's office in Conn.) If we find a doctor who is the right fit for us and our son we will find a way to get him there.

I have been on the PANDAS board (reading more than posting). We just went to see Dr. B. to consult with him about PANDAS this past Monday. Despite my efforts I was not able to get IGeneX results to Dr. B. or myself before our appointment. Our other lab results showed that my son was immune deficient (slightly low total IGG and 10 of 14 Streptococcus pneumoniae Antibodies serotypes were low) and he had high ASO and antidnase titers. Dr. B. thought Aidan had strep that he was having trouble getting rid of and he had sent us home prescribing Augmentin and steroids to clear the infection. Wouldn't you know it but the IGeneX result were in my mailbox when I arrived home in Ohio on Monday night. Our results: IGeneX IGM results negative 23-25 IND 39 IND 41+ IGeneX IGG results Positive CDC results negative 30 + 41++ 58+ 83-93+ Any comments on these results? Of course I have faxed these results to Dr. B yesterday and I am trying to find out what he recommends as far as treatment (is the treatment he proposed still valid?) and I hadn't heard from him yet. I will call his office again as soon as I post. Just wondered if you experienced Mom's have recommendations. Thanks! Elizabeth

Thanks - Interesting article. The case study and info in this article makes me think so much of my son - frequent infections (ear, sinus, etc) at a young age, the sudden biting and other aggressiveness, improvement with GFCF diet but not full improvement and more. This almost seems like it brings up more questions than answers for treatment for us! But I guess I just keep plugging away at it and trying to get the questions answered!

What is the kissing tic like that you and surfcity mention?