NMom

I'll weigh in here since we have a positive Lyme test (very positive I've been told) and just recently finished a 30 day steroid burst. We did have a lot of issues in the early days and (as I've said before) I wish I'd understood all the potential side effects of steroids before starting. My pediatrician was very concerned that we were on steriods given the Lyme test because it is an infection and any suppression of the immune system is contraindicated when the patient has an infection. I researched a few Lyme doctors and found articles from several Lyme researchers and clinicians that said they would either never prescribe steriods to a patient with Lyme or that they would only do it if the patient was on antibiotics to treat the Lyme...we are on antibiotics anyway so that put my mind at ease a little bit. So long story short...we did have a horrible experience with steroids in the first couple of weeks and I would have to seriously consider whether to use them again but I do not think our issues were Lyme related. Around day 15-16 we saw a dramatic response and had three wonderful weeks where the symptoms just seemed to disappear. My son struggles mostly with OCD and some mental tics and it was like we got him back. We finished steroids last Tuesday and almost immediately saw things start coming back. He's had a sore throat now for three days and started running a fever so it may just be our bad luck that he caught something just at the end of the burst. There is a LOT of strep going around school so guess it was going to happen eventually. My advice would be that if you decide to pursue steroids - have a support system to identify any potential issues. Have his blood pressure and glucose checked on a regular basis. Have a local doctor that is on board and willing to treat any potential problems. We do not have a local PANDAS doc here so it was very difficult to show up at my pediatrician's office with our story and know that he was not comfortable at all with the steroid burst. Hopefully you won't need any help but it's better to be prepared than in crisis mode like we were - we ended up in the ER. As a side note....I also went to the Texas A&M Symposium last week and talked to one of the Lyme doctors that presented there. I 'just happened' to have my Igenex test results so I asked him to interpret them for me. He said it was a clearly positive test but that he would consider it already treated at this point since we are on a treatment level dose of antibiotics. He felt (based on our history) that strep is our major trigger. Now he did not examine my son and we will probably still see another Lyme doctor simple because antibiotics do not seem to be the end answer for us so I need to keep digging. But I still found comfort that at least one of the leading Lyme doctors that also understands PANDAS felt like the antibiotics are appropriate for Lyme. And on a positive note...my pediatrician attended the symposium too! At the end he said he wondered how many kids he might have missed..yeah!!!! It's a start.

That's great nicklemama. How do you figure out the dosing for melatonin and where do you buy it? Think it might be worth a try.

LLM - your story sounds so much like ours. My son will not go upstairs alone. He won't even go to the bathroom alone. He drags our poor cat everywhere - that cat has a special reward waiting in heaven! And I take a lot of responsibility for the night time issues. I too have developed quite an elaborate bed time ritual that includes cuddling, a book, rubbing his head and back and walking him through relaxation exercises. I have been doing this until he falls asleep but then he's awake again (sometimes in 10 minutes) and we start all over. And I do sometimes really want him next to me at night. I'm scared a lot these days and worried and miss the PP (pre-PANDAS) days and it's comforting to have those moments to snuggle and feel like it's all going to be ok. But enough....my son is not responsible for my emotional issues and I feel like I might now be doing him a disservice if I don't help him feel safe and confident enough to fall asleep in his own bed. Sounds good, doesn't it...we'll see if I'm strong enough to pull him through it! At least I'm motivated - even if he isn't yet.

Eileen/Laura - Thanks to both of you for responding. I agree with both ... we've got a great psychologist that we do ERP therapy through. She specializes in pediatric OCD and was part of the Menninger clinic for some time. I love her approach - she is very much about letting the kids set their own pace so they build confidence and don't feel overwhelmed and give up. Most of the time that works great for my son because he's been so motivated to get rid of the OCD. This is different...I do believe he is irrationally afraid to the point of pure panic...but he's also working towards a positive end goal - to get into our bed. He likes it there. He's comfortable, cuddled, etc. So there's not a lot of motivation on his part to work on the fears. So I think in this instance we do need to be tougher. I sat up in our game room from 12:30 to 3:30 last night listening to him cry, plead, beg, etc. and refused to let him leave his bed. I'd already cuddled him to sleep twice and he just flat out would not go to sleep again. So I think it became a power struggle and I'm not particularly proud of my reaction but I was tired and emotionally worn out...probably not going to win Mommy of the Year award. But I strongly believed that he had to go back to sleep on his own in order to gain the confidence that he can do it. And every night that we give in reinforces the behavior we want to stop. We've come up with several program designed to get him into his bed over a period of time...we just never could quite get past the first or second step. So we're using the tough love approach right now. Not sure this will work either - probably depends on how long I can survive on no sleep! I would like to address the fears directly but not quite sure how. When I ask he tells me he's afraid of monsters, vampires, werewolves, strange noises, pirates (just finished reading Treasure Island), etc....the list is long and varied and anything he's seen, read or heard of that day can pop up. We limit TV dramatically and I'm starting to limit what he can read as well. What I think is happening is that he has one or two key fears (vampires, monsters, etc.) and then goes into full-on panic mode and then EVERYTHING becomes scary. He's in adreneline overload - fight or flight - and just can't calm down. I've taught him several strategies to refocus his mind and relax his body but that doesn't always work. I think the trick may be to do some exposures to the key fears so they don't kick off the reaction. Any advice on how to address the fears is welcome! Also curious...have either of you used Melatonin for sleep problems?

Several people have PM'd me to find out how my son is doing or asked on this thread and I'm sorry I haven't responded before now. I'm very, very happy to say that we had a cardiology workup on Monday and all is well. His heart is not enlarged and now that we are at the end of the steriod taper we are starting to see some of the side effects decrease. I will say that we are also now starting to see the benefits that everyone talks about. His tics and OCD are much more manageable...really I think we are now dealing with the 'memory' of them if that makes sense. Some things are almost a habit now but he's more relaxed than I've seen him in months. So at the end of it all...I'm glad we are where we are but I'm not sure I'd risk it again unless we were desperate. I think our next step is going to be researching the Lyme/co-infections angle since we have a positive Lyme test. The one issue that we are still dealing with in a major way is nighttime fears. He cannot go to sleep alone and if he wakes up in the middle of the night he cannot go back to sleep...last night he was up from 12:30 to 3:30 AM. We aer all exhausted and the easy way out is to put him our bed - he'll go right back to sleep. But we cannot do that forever. Has anyone else dealt with this successfully? Thanks to all of you for all your support. I'm not sure what I'd do without this forum and all of you that take the time to respond and to talk me off the ledge.

I will be they too and know a few others that are going. Would love to find a time for us to all meet..maybe breakfast on fri?

Thank you Laura. You are right and I appreciate the insight. I think our next step will be to find an LLMD and try to understand the other things that might be going on. I always knew that the positive Lyme test might be an issue when we started steriods and suppressed his immune system. Even my pediatrician asked me why our PANDAS doctor was comfortable giving steriods with a positive Lyme diagnsosis. But ultimately it was up to me and I made the wrong call this time. Not to sound like a broken record but I just wish I'd known all the potential issues. Anyway - we don't have any LLMDs here in TX. I know you have one you like. Could you PM me his name/number?

I woke up this morning and for a few minutes I just forgot this whole nightmare. Then it all came crashing back down and I felt the weight of it all again. Now I can't stop crying. Maybe this is what a nervous breakdown feels like. Anyway - we'll just see how today goes once my son gets up. I appreciate the perspective of all of you not in the middle of this situation and hope that you are right and this is all an overreaction. But I maintain that it's absolutely wrong that possible side effects were never explained - there is no monitoring of blood sugar or blood pressure going on. I wasn't even told to watch out for XYZ and call the doctor. This is a seven year old boy. I made a choice to give him steriods that could have major implications on his health. I might have made that choice anyway with all the information but maybe not. Who knows. We were not in a terribly bad place in terms of PANDAS symptoms My hope is that he started feeling bad (no energy, very pale and terrible headache) maybe just as a result of being hungry or dehydrated. Then maybe he got a little anxious and started feeling like he couldn't breathe. And maybe the enlarged heart was simply the angle of the x ray. That's the hope I'm clinging to today. Several people asked what made me think that he was spilling sugar or that the steriods increase his blood glucose. That's what the doctors - including our PANDAS doc (after I asked) - have told me. His fasting blood glucose was normal yesterday so that's a good sign but both PANDAS doc, two pediatricians and a pediatric ER doc have told me that the frequent (6-7 times/night) urination and cloudy urine are signs that he might be spilling sugar. The pediatrician that did the test recommended that I buy a glucose monitor at the pharmacy and test his blood sugar after the steriod dose to make sure it's not too high. I think this can improve as the dosage is decreased and I'm hopeful that's why yesterday it was normal (we just decreased the dosage). I just think but we should have been monitored. I waited a week to even ask the doctor about it because I thought it was just a common, unimportant side effect of the steriods. Might be but turns out it can also be very serious. I really am trying not to project anything I'm reading about side effects onto my son. I only called the doctor in the first place at the prompting of our psychologist who thought that we should check on the urination issue. Then it feels like all ###### broke loose. We're having glucose checked, my son starts feeling very badly and the ER pediatrician is talking to us about the possibility of an enlarged heart. I'm trying to filter through all the panic feelings and find some solid ground. Easier said than done.

Saga continues...around 3 pm my son suddenly had a headache that quickly became very bad. He was pale and told me that he was having trouble breathing. We were at the mall and I just grabbed him and ran to the ER on advice of my pediatrician. He improved in the hospital but his x rays showed a possible enlarged heart. Apparently steroids can cause congestive heart failure and although he does not have other symptoms of that we have to follow up for monitoring with our pediatrician. Praying that the heart issue is really just the angle of the x ray but we will certainly be following up. For those that asked...my son weighed 53 lbs and the prescription was for 30 mg for 7 days, then 20 mg for 7 days, 10 mg for 7 and then 10 mg every other day for 7 days. He was examined by this doctor recently. He has gained about 4 lbs in 2 weeks and his face is huge. He's going to the bathroom 6-7 times a night and it's very cloudy - possible indication of sugar spillage. I was concerned about the frequent urination and called my ped who sort of freaked out. Then I called our pandas doc who was also concerned about the urination and told me to have glucose checked. I had already researchd side effects of steroids by this time and knew it could raise blood sugar significantly as well as blood pressure. My son's blood pressure was very high tonight as well. So I'm still terrified beyond belief and angry that none of theses side effects were mentoned when the steroids we so casually prescribed. I realize that steroids are miracle drugs for many but these are very serious side effects and everyone should carefully weigh the risks against the potential benefits. At least be informed...I wish I had been.

Saw the ped today and did a urine and blood glucose tests...all were normal. We had not given the steroid dose this morning and we know that elevates his blood sugar but we have to continue the taper so will just continue to monitor for now. Have noticed that some of the tics are coming back since we lowered the dosage but it was not a dramatic change anyway so probably still better to get off e steroids as quickly as possible. Kinda seems like we are damned if we do and damned if we don't

My son is 14 days into his steroid burst and having lots of side effects including significant weight gain, very frequent urination and moonface. I called his pediatrician today to ask whether this was all normal since we don't live near our pandas doc and I've been unable to get answer from that office. Our ped was extremely alarmed at the dosage and length of the treatment and told me these were VERY serious side effects and I need to watch him closely and go straight to the er if he doesn't look right at all. He said I can't taper down any faster because I'll put him in adrenal failure but basically implied that these side effects could kill my son if we don't watch him closely. So I stalked my pandas doc through the after hours number until she picked up. She was very casual about it all until I told her he was up 6-7 times a night to pee and now she wants me to get his glucose checked tomorrow and call her...says he miht be spilling sugar. I have no idea what all this means but I doubt I've ever been this scared in my life. Has anyone else had these side effect? What can I do... We can't taper down any faster.

I thought we had a very lovely chat today! You seem stressed like the rest of us but not grumpy. But if you are..that's ok too!

We started with a 7 day ramp up and then started tapering for 21 days. I can't say I've seen no improvement but it's not drastic. My biggest concern is the weight gain. He's put on 4 or 5 lbs in less than 2 weeks...he only weighed 53 lbs to start so that's a big weight gain for him. It's very obvious and he's noticing it a lot. His face is bloated too. Does this go away after we stop the steroids? If so, how long after stopping?

We are now on day 12 of a 28 day steriod treatment and I've seen some things get better and some things get worse. I'm not sure how to even tell which are tics and which are OCD sometimes because they are all so intertwined. So not sure if we are actually seeing improvement or just morphing of symptoms. We thought we were going to do PEX in a few weeks but now our doc is saying that the lack of response (based on what I've reported) indicates that we should not try PEX. I'd really like to get off this rollercoaster ride. Anyone else not see improvement with steriods?? Any thoughts on why...should we be looking harder at infection? We did have a recent lab test that showed positive for Lyme but am still looking for a doctor for that.

Can I ask...what is the 7/27 abx protocol?

I don't think it's a PANDAS symptom but of course I could be wrong. The reason I think it's something else is because it only happens at night and I'm in the bathroom with him and he's actually going quite a lot - it's not just a feeling. He's not afraid of an accident at night - he has those fairly regularly at night anyway. And unlike the PANDAS OCD..he isn't worried about having to go..he's annoyed that he actually has to go again. I know that urinary frequency is a PANDAS symptom but is that only at night? We've been out an about all day and he's been to the bathroom two times. He's had a drink at lunch and had some a bottle of water and I'm still having to remind him to go today. So no clue what is actually happening or whether I should be concerned.

My son is 7 days into a steriod burst and for the last two nights has been up 7 or 8 times to use the bathroom. Other than that he's had some emotional swings and I'm starting to see some increase in hunger but I'm not seeing him drinking a lot more than normal. I know for a fact that he has not had a lot to drink before bed the last two nights so that's not the issue. He's waking me up to go with him because he's terrified of the dark and typically ends up in our bed (that's a separate issue) but since I'm up I know that he is actually using the restroom every time. Sometimes he has to go again before he can even get back to sleep. He said he isn't having this issue during the day - just at night. Is this normal? I tried to look it up on the internet but just found a site that says call your doctor if you continue to have frequent urination issues. I've called the doctor and left a message.

We started steroids for my son today. First dose was 20 mg this morning and then he's supposed to take 10 tonight. Seemed fine this morning but this afternoon started having what I can only describe as a 'crazy attack'. He got frustrated and then spiraled into such anger...like nothing I've ever seen from him. He was clawing at his own body and crying that he just wanted to hit or destroy something. He grabbed a pillow and literally tried to pull kept into pieces. He was almost panicking at this feeling that he couldn't control, he just paced around crying and looking for something to do that might help. I ended up holding him in a bear hug and talking him thru some relaxation exercises. He was actually shaking. This is not a typical pandas symptom for us. Could this be the steroids already? Is this typical or should we stop now and try to reach the doctor? We are doing this as a precursor to pex hopefully. Just not sure if this is worth it...he's been doing ok..not great but not bad either.

When I was looking at options for my son in case we need to go this route my mother suggested I look at the K-12 online program. She works at University of Maryland and they collaborate with the K-12 program and I think the curriculum is supposed to be very good. It's not really homeschooling - there is a teacher involved via phone, web meetings, etc. but the parent obviously has to be very involved as well. The great thing is that they run accredited programs in all 50 states and in most states they have a public school option - which means it is free. It's basically online, public schooling. I know in my state (TX) the online school doesn't start until 3rd grade so we'd have to consider the private program that they also run but it's worth looking into. I believe you can also just purchase curriculum for specific areas. Just a thought - might be worth looking into. http://www.k12.com/

I have been playing with a gluten-free diet for my son who also has never shown any sensitivity but does have stomach issues with the antibiotics. I was just curious to see if it had any effect on his OCD and/or tics. I have to admit that I was not hard-core strict. I generally pack a gluten-free lunch for him and cook gluten free dinners but he still has the occasional night out at McDonald's - probably more than just occasionally right now. I didn't see much change in his symptoms but there was another benefit. My son has always been a bedwetter. He very rarely has a dry night. Since changing his diet he's been dry almost every single night. The few accidents we've had were nights when I allowed McDonald's or got lax about the gluten-free diet. I've never heard anyone else make that connection so this might all be coincidence but it seems to be consistent.

For those of you that have done 30-day steriod bursts, what was the dosage? My son is 7 and weighs about 53 lbs - the dosage is 30 mg/day for 7 days/20 mg for 7 days/ 10 mg for 7 days and 10 mg every other day for 7 days. That seems really high based on other posts I've seen. Also..what side effects should I be expecting if we do this? Is weight gain significant in this timeframe?

For those of you that have done 30-day steriod bursts, what was the dosage? My son is 7 and weighs about 53 lbs - the dosage is 30 mg/day for 7 days/20 mg for 7 days/ 10 mg for 7 days and 10 mg every other day for 7 days. That seems really high based on other posts I've seen. Also..what side effects should I be expecting if we do this?

Good way of looking at it Kathy! Now that it's all sinking in I too can see that this might open up other options for us..things that could be very helpful. It just took us a lot of emotional turmoil to make the decision to do PEX so it felt like a huge twist when the Lyme came back positive. I'm adjusting to the new picture with the help of many of the people from this forum (who seem much wiser and calmer than me). I think it helps me to just sit with any new information for a day or two before jumping into any course of treatment. I think ChristianMoms suggestion to do a shorter steriod burst makes sense too. I still need to understand what information we are going to get from doing that though and still haven't been able to reach our doctor - will keep trying though. Thank you to everyone on this forum who takes the time to respond, PM me and spend time talking through these decisions over the phone!

DCMOM - I agree that our doctor's heart is in the right place and I do take the advice seriously. I'm at a point though where I think I need to understand the logic. We keep having these false starts and I'm not sure this doctor is well versed in Lyme...I could be wrong but that's my general sense. You and I discussed before that each doc has their own weaknesses/strengths and sometimes it takes a village to figure this all out! I'm curious though - did your girls come off abx on the advice of a PANDAS doc? I'm also curious who you saw for the Lyme - can you PM me? My biggest issue is that my son is very functional. We use ERP for the OCD and relaxation techniques to manage the tics. The tics are the real issue although they are wrapped up with the OCD.....and I know that PEX often helps with tics. I'd be happy to get a few months of baseline even if we ended up regressing later. But I doubt our PANDAS doc will do PEX without the steriods first and I'm scared to use the steriods now with the Lyme diagnosis. We are not in crisis right now...don't want to do something that puts us there but not sure where to turn next then.

Thanks to all of you for your responses. It is clear that there is no easy answer here and I appreciate all the feedback from both 'Lyme families' and 'PANDAS families'. I apologize for the insinuation that Lyme testing/treatment is a distraction/rabbit hole. I've been very focused on how we'd deal with PANDAS for so long...what is the next step, where do we go from here, etc. I just didn't see this coming and I'm honestly not sure where to focus now. For me the hard part is that we had just gotten our heads around the idea of doing PEX and were really hopeful that it would bring some great results..and then WHAM...Lyme shows up. My DH is about to change jobs which means we switch insurance carriers and I've been told that the one we will switch to does not cover PEX or IVIG very often - our current one covers it. So there is a time element to this decision if we think PEX is the right answer...but I don't know anymore. How do we determine which to treat first..Lyme or PANDAS? I have emailed my PANDAS doc but rarely get a response from that office. I'll keep trying because I do need to understand what the steriod burst is supposed to show us. I think we will consider a second opinion as well. I know Dr. B deals with co-infections and Lyme quite often ... other suggestions? How do you decide whi