shannon aka mommy

Sending hugs your way. I have a 15 year old son too and he is in really bad shape right now. I know exactly what you mean about "hard to watch". We are seriously thinking about trying IVIG in the near future. Please let us know how things progress. Shannon

My understanding is that it takes a LOT longer on antibiotics than two weeks. Some of the kids are on them for months and then given a dose weekly for a year. Dr Murphy -- a very well known PANDAS doc -- gave us a full 30 days of antibiotic. Turns out DS is a Myco P kid and so we changed antibiotics, but again we were given 30 days. We have a follow -up with her at the end of the 30 days. We are only two weeks into the new med so I am no expert:) But I would definitely pursue the long term antibiotics before IVIG. Just make sure DD is taking some high quality probiotics too. I'm sure the other parents with strep kids will provide better feedback for you.

Found the link:) This is the only thing we have found linking seizures to PANDAS. Let us know if you find anything. Our neurologist thinks we are full of #$@%! -- she said it in a much nicer way... http://www.noropsikiyatriarsivi.com/sayilar/402/buyuk/85-87.pdf

We have found one case study that related seizures to PANDAS. I'll have my hubby give me the link tonight. My DS 16 started having seizures in August 2011 and 6 months later DS 14 started having tics and has been diagnosed with PITAND. So, we are wondering the same thing. Waiting on Myco P, strep and West Nile Virus test results on DS 16 now. Will let you know how those come out. Does anyone else know if seizures can be related to PANS?

The thing that jumps out at me is the TSH. Some labs still use that old range, but the new range is .3 -3. Personnally, at 4.61 I felt like death. In a funny sort of way thyroid problems are like PANDAS -- I mean some docs say 4.2 is not high enough and other would definitely treat. I would request a full thyroid panel which includes TSH, T3 and T4 tests. My TSH was "subclinical" according to my regular doc, but when I found a "thyroid" doc and he ran the full panel we found out that my T3 was almost nonexistant -- T3 gives you energy. No wonder I felt so awful:) You can google symptoms -- I reccomend Mary Shomon's site. Mary's site also has a list of "thyroid" docs -- that's how I found mine.

Sent you a PM. We are moving to CO and I would love any info you can provide on Docs in the area.

I'm kindof wondering the same thing. My son is positive for Myco P and Mono. He's a ticcer (motor and vocal), OCD, anxiety and sensory sensitivity to noise and light. Been on Zithro for a week. How long does it take before we see if it is helping? DS asks me everyday and I just don't know what to tell him. My understanding is that it could be months...is that true? I'm reading that some of you had success with the Zithro, but how long did it take?

Dr Murphy has prescribed zithro for DS. I was concerned that she wouldn't treat because he was negative for IGM Myco P. Anyway, I don't think there is a better doctor in FL for you to see for PANDAS/PITAND symptoms -- although her area of research is PANDAS. You may want to give her office a call if your current doc doesn't work out. Her office is booking out two months, but we got in a month early by being on the cancellation list. Going to wait and see how things go on the zithro before we persue lyme testing.

My son tested low in folic acid. I ordered a complex with folic acid, but I would be interested in knowing what you use. Why did you use 400 mg? Was that the recommended dose of the doc? The complex I ordered has 400 mg, but my son is almost 6 feet tall and 150 lbs. I've been thinking about bumping the dose a little. Thank you so much for posting this.

My son has tested positive for IGG Myco P. and recent EBV even though he had mono 7 years ago. I'm wanting to have him checked for Lyme. Can anyone PM me a name of a LLMD in the south with a good reputation? He has tics that have gotten worse on Augmentin because we thought he was PANDAS until the tests came back. We are trying to get him on the correct abx for Myco P, but have not had any luck with the Doc so far. He has many obsessions, few complusions, lots of anxiety and vocal and motor tics. He also has extreme allergy to dust. Does any of this fit with Lyme?

No experience with Dr Lawrence. We have seen Dr Murphy at the Rothman Center in St Pete. I can not tell you right now how she treats Myco P because we just got a negative strep but positive Myco P -- waiting to hear back from her office. We have positive IGG >5 with a reference of positive being >=1.10. We have a negative IGM. So, I'm not sure what to expect. We requested a different abx because he has been on Augentin which doesn't work for MycoP. I'm not sure if she will treat because he tested negative on the IGM. I'll let you know how it turns out. My son is also 14. Also tested pos for recent Mono and extremely high allergy to dust -- like off the chart high. Shannon

We just heard from a nurse in Dr Murphys office that DS is positive for recent Myco P and EBV. So.... what does this mean? We don't have a follow-up for 5 weeks! They spoke to my husband and he didn't think to ask --"What now?" DH didn't sleep well last night it's not like him to miss an important question and now the office is closed. DS is currently on 4000mg Augmentin a day (He is 15 year old, 5'11" and 150 lbs). This is the wrong abx now right? If it is a "recent" infection and not a current infection what the heck does that mean? If it is not a current infection does that mean he doesn't need antibiotics? The nurse also mentioned that Dr Murphy thinks his allergies are a major problem...huh? We actually have an appointment with an immunologist this Friday in St Pete so maybe she can tell us what is going on? Sorry, I have so little information. I'm feeling a little -- no, A LOT -- frustrated. Can anyone give me an idea of what is going on?

Miss Mom -- Yes, you sound just like me too...why else would I be up Easter morning reading the PANDAS forum:) My DS is turning 15 in just a couple of weeks. He has tics, anxiety and OCD. He never leaves the house... Just last year he was in a play and performing music in a talent show... I agree with the Saving Sammy book reccommendation. I also read it and found it comforting. His mom was going through all of this before anyone had ever heard of it. At least a few doctors know about it now. She was strong and determined and that is what we have to be for our kids. Personally, I find the more I know about PANDAS the better I feel. So if it is helping you ...read, read, read...Now that I know more I don't cry as much. My husband is reading too. Maybe you could give your husband a couple of things to read so you can talk about them together. We did just recently get into see Dr Murphy in Tampa, FL and that has helped a great deal. At least I feel like we are on the right track. Are you able to see a PANDAS doc? You are in my thoughts and prayers this morning.

Hello Dawn, We just returned home from an appointment with Dr Murphy Wednesday. We were very impressed and pleased...in spite of the very short appointment notice and only 4 hours of sleep on the way there. We'd gladly do it again. Our original appointment date was May 23rd so it is possible to get in sooner, but they are booking 2 months out. We live six hours from the office and they gave us about 17 hours notice of a cancellation. After working with local pediatricians that know little or nothing about PANDAS, it was a breath of fresh air to have an entire staff of doctors and support team members that understand PANDAS thoroughly. We were in appointments of various types from 9 am - 5 pm with a short lunch break. In the end it was hard to tell which appointments were for a specific diagnosis of DS's problems and which were to support on-going research at the clinic. However, even the appointments collecting data for other studies were very helpful. The questions about what OCD issues bothered DS the most were very helpful. We were on the right track with the antibiotics that we had selected, but were majorly underdosing. Dr M more than doubled DS's current dose. Dr M is also running about a dozen blood tests on everything from strep to heavy metals. Perhaps the most promising thing about the Rothman Center at USF is that they are more or less a one-stop-shop for PANDAS. They either have doctors on staff or available for consultation for the full spectrum of PANDAS issues. We are supposed to return in a month for a follow-up appointment. The plan is that if DS is not over the OCD and anxiety then we are going to do a 3 week CBT session. I've heard good things about this program from the other parents here on the forum. You can stay at a local Ronald McDonald house for $10 a day or less. Hope that helps you!

I'm going to second the hormonal thought. My sister-in-law had something like that while she was pregnant. Your daughter's sounds like it is much smaller.... Anyway, I would have her hormones checked -- especially thyroid and cortisol. Cortisol is a hormone released in response to stress and I know we are all stressed -- parents and kids alike!

Hello:) I'm a newbie too. I'm sure some of the other moms and dads with lots more experience will add some comments soon, but I do have a couple of suggestions... Have you tried an elimination diet? It seems to have really helped my son a lot (he is 14). He has many food intolerances, but no real food allergies so the only way to figure it all out is by trying the elimination diet. Corn in particular seems to be a trigger for him. The tics have almost completely disappeared. The OCD, anxiety and sensory dysfunction are still very present though:( I have also read about Singulair causing neuro side effects in some kids so we have slowly taken our son off of it. We are only on day 3 with no Singulair so I don't know if it is helping at all. We started Augmentin yesterday and are waiting for an appointment in May with Dr M who comes highly reccommended. So, we are just starting this journey. Personally, I find great comfort in reading other parents posts. It helps to know that we are not alone and it helps to draw on the experience of those ahead os us on this path...

Yes, we are in north FL. It looks like it would take about 7 hours to get to St Pete. I have family in Vero (3 hours -- a little better) perhaps if we stayed with them we could start therapy for the OCD. I will talk to my husband about it tonight. Is Dr Storch easier to get in to see? Interestingly, we did receive a call about an hour ago from Dr Murphy's office asking for any labs we have. I wonder if they are trying to decide who gets your appointment DeDee? I'm really happy to hear such good things about Dr. Murphy. We have been frantic trying to figure out what is going on with our son. I didn't realize I was bending to OCD. I can see your point...I'm not sure what to do about it really. This is where I'm feeling like we need some professional help. Thanks for the feedback. Shannon

I have a 14 year old with a clinical PANDAS diagnosis. We have an appointment with Dr Murphy at USF May 23rd. My question is what do I do until the appointment? Does it make sense to start any therapy for the OCD or sensory issues? My husband is pretty bent on "treating the cause and not the symptoms"... I would say that my son is stable right now. He had maybe a half dozen tics yesterday, mild OCD, moderate sensory and moderate/high anxiety. He is homeschooled so I have canceled pretty much all of his classes. He stays home all the time which really cuts down on problems -- he has a really difficult time in the car -- noise from his little brother and sister in the back seat drive him crazy. He spends most of his time with headphones on which I purchased recently so he would stop yelling at us all to be quiet -- he can still hear us though -- sigh. It breaks my heart watching him struggle so much. It's like his life has come to a complete halt. He is on the elimination diet. We know he has multiple food sensitivites so we are trying to figure them all out. I read about Singular causing some neuro problems so we have started backing off of it (I'm going to do a separate post asking for advise on that one.). Should we be doing anything else while we wait? Feedback is appreciated. Shannon

Greetings Everyone, Posted "New Here -- Need Advise", but I have a new question. We have a clinical PANDAS diagnosis for my 14 year old son. His worst symptom right now is sensory. He can't even eat dinner with us because we are "too loud". This has improved a little since he has been on the antibiotic (or it could be dietary changes -- hard to know). I have seen very little posted here about sensory issues. Most of the posts here deal with OCD. I can say beyond a shadow of a doubt that this sensory stuff was sudden onset. I definietly would have noticed him running around telling everyone to be quiet before now:) His OCD symptoms are secondary or maybe just much less noticalbe to me. He tells me he is still having thoughts -- sometimes violent and he will not tell me about what. I ask him if he is performing a ritual to relieve the stress and he says no. I ask him if he repeats words in his head or counts and he says no. He is homeschooled and I have a great deal of control over his environment so maybe this is why the OCD is not as bad? Does the OCD have to be bad for this to really be PANDAS? The OCD has definitely been worse since his illness in January. Has anyone else experienced this? Shannon

Hello everyone -- I'm sorry, but this is going to be a long post... I have a 14 year old ds who has had a dramatic increase in OCD symptoms and the onset of tics in the last two weeks. I didn't realize he had OCD sypmtoms before all of this happened, but looking back now I can see that he has had OCD for at least the last year -- spending forever brushing his teeth -- constant questions... Anyway, we were orginally looking at Tourettes, but then we ran across PANDAS and he seemed to fit description. In early January ds had horrible headache and fever we think now -- strep. March 4th we were in the ER asking why our son was "jerking". Our oldest son has epilepsy so we were thinking this was the same. When I read about Tourettes it seemed far worse than epilepsy. I cried because there was no "magic pill'. Our ped doc was helpful, but only slightly familiar with PANDAS. We had the titter? and strep tests which came back negative. She did already prescribe amoxicilin for him for 30 days, 500mg a day. We found Dr T at USF in Tampa and called for an appointment -- we live in north Florida. My husband spoke with someone there who agreed that my son fits the symptoms and because we seem to be catching this early said they would try to get him in soon. Just got a call today that our appointment would be May 23rd! So, now I'm wondering if we should be looking around for someplace else to take him. How important is it that we get him in to see someone soon? My husband is the tech guy and he is reading up on this stuff like mad. My husband thinks we need to use a different antibiotic because he (my husband) is allergic to it after repeated strep treatment as a kid. He is going to read all the stuff I have found from Buster tonight and make a new appt with our local ped. She was real reluctant to prescribe anything other than amoxicilan so we aren't sure how hard we should push for this. My husband and two older boys are very allergic/intolerant to foods so I have basically put the kid on an elimination diet. He also takes daily Epsom Salt baths (very helpful)and I have added L-tryptophan to his suppliments. I read about all this in a Tourettes book and site so I'm not sure if it is good to do if we suspect PANDAS or not. We are getting by at this point. He is VERY sensitive to noise -- driving me crazy. Bought expensive new headphone due in the mail tomorrow -- yeah! He is homeschooled so I have basically cut out all subjects except music and computer editing -- which he loves:) This forum has been so helpful to me. Knowing other people are going or have gone through this is very comforting. Any advise is greatly appreciated. Shannon