lmi1973

I PM'd you kmom, thx:)

I know, it does seems as though there are as many, if not more, kids that have other infections besides strep, especially a lot of tick borne ones. It would make sense to throw on some extra blood tests to the standard ones they run to just rule them out first. thanks so much for all the information. I was able to call LLMD yesterday and get appt., but not until June 20th. I'm going to call and ask to please get us in sooner if there is a cancellation. I actually took Kyle to er this morning b.c. he was acting so goofy I was convinced he was hypoglycemic; they did a quick blood test and said his sugar level was not low, but, they did switch him from clyndamycin to doxycycline. Praying something starts to help him soon. How long does it take to see improvement after starting the correct lyme treatment? I only got a ten day Rx for doxycycline, thinking I'm going to have to try to get longer. I also need to get Igenex tests run. Sometimes (a lot of times) this is so overwhelming...

Been a rough day, thanks for the information!!! I will check out previous thread

Hi, ds Kyle (10), was diagnosed this past January (2011) with pandas. Kyle had hd ivig on 2/24 & 2/25 with Dr. K in Chicago. Since then, we have worked with Dr. Trifiletti as Kyle hasn't made much progress post IVIG and wanted to rule out other infections. Dr. T found that Kyle had a mycoplasma infection and has been treating him with clymdamycin for past couple of weeks. The last bloodwork came back this week and it showed that Kyle also tested positive for anaplasma?! Dr. T said that this is not a common infection for pandas kids. He also said that we should see a lyme doctor as anaplasma is another tick-borne illnes. Dr. T still feels Kyle has pandas (actually PITAND) and is treating as such, but wants us to see LLMD since he is unfamiliar with protocol on anaplasma treatment. Has anyone had this type of infection? Dr. T did not switch clymdamycin to doxycycline as he was worried about teeth staining, but am wondering if he should be switched after what I've read. Kyle is 10.5 years old and weighs 85 lbs. Thanks so much for any insight/help, Sincerely, Laura

Hi, ds Kyle (10), was diagnosed by Dr. K this past January (2011) with pandas. Kyle had hd ivig on 2/24 & 2/25 with Dr. K. Since then, we have worked with Dr. Trifiletti as Kyle hadn't made much progress post IVIG and wanted to rule out other infections. Dr. T found that Kyle had a mycoplasma infection and has been treating him with clymdamycin for past couple of weeks. The last bloodwork came back this week and it showed that Kyle also tested positive for anaplasma?! Dr. T said that this is not a common infection for pandas kids, so I'm guessing I might not get many responses here, but thought I would give it a shot. He also said that we should see a lyme doctor as anaplasma is another tick-borne illnes. Has anyone had this type of infection? I think I'll post to lyme forum also since Dr. T said this wasn't something he commonly saw in pandas. Dr. T still feels Kyle has pandas (actually PITAND) and is treating as such, but wants us to see LLMD since he is unfamiliar with protocol on anaplasma treatment. This was my third consult with Dr. T and he is SO amazingly knowledgeable and has such a huge knowledge base for this disorder. I highly recommend him to anyone!!! Thanks, Laura

Had a oonsultation with Dr. Trifiletti yesterday after Kyle's bloodwork came back. Dr. T asked me if Kyle was still hallucinating. I said yes, - not all the time, but at least a few times/day. Kyle says that ocd and god (not the real God, ocd's cousin God) talk to him all the time, but sometimes they try to show him things too that scare him. And for the past few days he has now had a "fake Winston Churchill" talking to him, he says that ocd got a fake Winston to show him things now and sometimes they all talk at once and he can't understand them or what they always want him to do (ocd stuff). Sometimes Kyle will also just stop and stare off into space like he's seeing something. I know this is common with ocd - like intrusive thoughts or whatever, but sometimes it's like he is just dumbstruck by whatever they show him, like he will cry and shake and just cover his eyes; he also told me that a picture of him and I changed in front of his eyes - that we turned into monsters and it really upset him. Anyway, Dr. T asked me how Kyle's eating habits have been lately after he asked about the hallucinations. I said that for the past couple of weeks Kyle's had a big sweet tooth and he's normally not like that and I was starting to get worried that maybe he had yeast build from the abx he's been on. I'm talking a pretty major sweet tooth, like wanting french silk pie - or other form of chocolate every day - one day he at a whole pie! Before you think I'm the worst mom in the world for letting him eat that, Kyle isn't overweight and he normally never asks for sweets like that. Kyle also gained six pounds and grew like 2 inches in the last week, so I'm thinking it was a major growth spurt, which kind of stopped me from worrying about the yeast as much until Dr. T asked me about the eating. But, Dr. T said with the hallucinations that he would actually be more concerned that Kyle might be hypoglycemic as one of his patients that had a lot of hallucinations had a problem with glucose. He wants Kyle to have glucose intolerance testing done. From what I've read on hypoglycemic symptoms, there are a LOT of pandas symptoms on there like rages, depression, inability to concentrate, short term memory loss. Something I read even said that hypoglycemic people are commonly misdiagnosed as bipolar or schitzophrenic! So... I'm wondering, have any of you guys found out that your children are hypoglycemic/had tests done? I know a lot of you are really good about limiting or have eliminated sugar from your diets already. I have to admit, I am a pop lover (so is Kyle) and I'm not talking diet, so I've been really procrastinating doing the healthy diet thing. I've been trying to live in denial about it and wanting the ivig and the abx and all the supplements I give him to just fix it all without having to revamp how we all eat on top of everything, but obviously, I'm starting to be forced to accept this could be a huge part of the problem. Thanks for any insight. p.s. Dr. T also noted Kyle tested positive for anaplasma based on latest bloodwork, going to do a sep. post on that one so my posts aren't so convoluted!

Thanks for the responses. I'm going to keep my fingers crossed that once the myco p is cleared out that his immune system will bounce back. The bucket example really helped for some reason! Good to know about the supplements as well. Maybe I'll hold off until I see if his bounces back after treating infection. Pretty calm here tonight, almost scary... Going to enjoy it and TRY to not think about it too much, lol

Okay, so I am really trying to wrap my head around this. Based on my son's bloodwork, Dr. T noted that he is immunodeficient in his IgG3 subclass. He also let me know that this as well as IgG4 subclasses are commonly deficient in pandas/pitand patients. My son has a myco p infection as well. In addition, his white blood cell count is low, which from what I've read indicates a chronic myco p infection. To clear out the infection, it is suggested by everything I've read to use multiple antibiotics over several months & to boost depleted immune systems. But, with this awful auto-immune disorder, won't taking supplements to boost his immune system cause flares in symptoms? I was just researching an immune boosting herb called Echenacea, and it sounded great in terms of boosting immune system; however, there was a warning that people with auto-immune disorders should not take this for obvious reasons... Am I not thinking right on this? Am I overanalyzing this too much? It just seems like a catch 22. How can I boost his immune system without triggering this awful auto-immune disorder?

I realize this topic has sort of gone into a larger debate, but, for those who have gone for lyme testing or just more extensive testing such as mycop or bartonella/babesia, has it been suggested that we as parents be tested as well? Brief synopsis: DS10 diagnosed with PITAND by Dr. K & Dr. T. Dr. T found mycoplasma infection which ds is currently on abx for (clymdamycin). Recently saw pics of bartonella rash online and realized my husband had this rash last summer, unquestionable. dh also suffers from chronic fatigue (although he says this is just part of life & doesn't mean he is sick) - asked him go to his gp and request mcyop and bartonella and all other bloodwork my son has had. Yesterday at the appt., the GP flat out refused to order bloodwork & told dh that bloodwork would come back pos. and mean nothing other than at one point he was infected. Gave him example that if he tested for chicken pox now, the titers would show up pos b.c. he was once infected as a young child. Also, since dh has no obvious symptoms (other than fatigue, which dh thinks normal), that it doesn't matter if he has these infections or not?! I am not as educated on this as some and dh seems to believe dr. and looks at me like I am more of a nut job than when I first asked him to get his blood tested in the first place. DS had more bloodwork ordered by Dr. T to include bartonella and babesia based on my remembering dh's rash, results not in yet. Have had western blot test run for lyme on ds and negative; considering igenex if bartonella comes back positive. GP has referred dh to infectious disease Dr. & told dh that maybe this dr. will have better explanation as to why they are meaningless. I see my gp on Tuesday, no idea if she will order or not. On the other bigger debate, I agree; we are all just trying to help our children here. All of this is so confusing. If preferred, please let me know if I should repost this to lyme forum. I did not post there as we have no clear evidence at this point that any of us have lyme, only that son has myco p. I may post there as well if everyone is too tired to respond to this thread!

Esther C Folic Acid Vitamin E Omega 3 My son also diagnosed with myco p and was told a good B12 vitamin should be added, garlic, and coenzyme Q10, and to make sure omega/fish oil was pharmaceutical grade.

Hi Sarah Jane, my son's levels were also actually normal when I look at the results - they were 25 for IgG3, but Dr. T said should be 65 as each subclass is based on a certain percent of the total of all the four subclasses. I noticed the IgG4 was also low, but normal, but he did not mention this one to me. Here is a link he shared with me on subclass deficiencies that I found really interesting: http://www.primaryimmune.org/publications/clinic_focus/cf_dec98.pdf Husband doesn't have asthma. Just chronically run down. He does have arythmia and high blood pressure, terrible diet and no exercise though. But, for 35 (I'm almost 38), he just seems like he has a lot less energy than I do so it makes me wonder!

Pathfinder, this is all good to know. Any information is good information! I don't know how long to give the biaxin, but another mom has shared that her son didn't see improvement until about 30 days and now he's doing really well. My son is only 5 weeks post ivig though so he is still healing from that as well. Just so hard to wait and so hard to know what to do sometimes with this. I totally get what you are saying with that sounding funny. I was so excited to find out about mycoP infection. Who else but pandas moms would be thrilled for info. like that;)? My son also has staph infection in nose and we are following up with specialist to try to clear out; we've been through two ents and an allergist already and this last ent is referring us to a "pediatric ent", I think mainly because he can't figure out why my son's nasal passage is still so inflamed after being on steroid sprays and abx for so many weeks, but also because he is very sick of me. I just truly don't know if he is not improving because the ivig has not had enough time to do it's magic, or if the biaxin hasn't had time to work, or now if biaxin is the right abx, and also if the staph infection is something more serious and also may need a different abx. But, I'm guessing that is the struggle we all go through. A big guessing game since no one treatment fits every child. Does your son also have chronic sinus issues? Dr. Trifilleti indicated that low IgG3 levels specifically made him more vulnerable to sinusitus. Has your son needed more than one ivig? Dr. T wants our son to have more blood work in 2-3 months to see if these levels have come up at all. Thanks, Laura

Uh oh, Pathfinder, now I'm worried a little... My son has Low IgG3 levels, even just 5 weeks post ivig, so Dr. Trifilleti says he does have an immunodeficiency. Dr. T also found that he has a mycoP infection and has him on 500mg of biaxin 2x/day (son is 10, about 80 lbs.) for 30 days. He's been on the biaxin for about 8 days with no notieable improvement; but, I'm guessing it can take longer than a week. I hope the biaxin works soon! Sarah Jane, I hope your husband gets some abx soon too! I'm worried my husband has this also as he is always run down and he's only 35?! He does have high blood pressure and is probably 30-40 lbs. overweight, so who knows, but, it's worth looking into though. Do I just have his doctor order the blood work for him? I guess I should get my blood tested too to be on the safe side. Ah, another fun Saturday night, lol...

Thanks for info on chewable vitamins! We have a GNC close by, so maybe we will try there and if not there we will go online. I want them a.s.a.p.

Also, in regards to Aspergers symptoms. No, our son's OCD really ramps up and rage, defiance (mostly these last two relate to frustration with ocd though). He definitely cannot focus as well though when he's going through a bad time and will get a far off look on his face now and then. I believe it's that he is lost in some ocd thought or something when this happens though.

Oops, Tampicc, after re-reading, my condolences should have gone to you for the birthday:( That had to be hard. This past Christmas was the most depressing holiday I've ever had. I sure hope things get better soon for him!

I'm really going to try to force the fish oil in him somehow today as well as other supplements. Tampicc, would LOVE to find chewable folic acid and esther c as he says those are "scratchy" and hates them the most!! He was taking XTEND Life from New Zealand for fish oil. I researched before I bought this (kind of expensive), but I do really think they had a positive effect and will beg him to take again; ordered online. I don't know how good it would be in smoothie; there is no bad aftertaste while in the gel cap, but broke one open to see if I could hide in a drink and it definitely wouldn't be disguised well as it is strong. So, might have to beg and/or bribe. Oh Sarah Jane, I'm so sorry to hear about his birthday:( I keep having this day dream that this summer we will all be happy and healthy again, but I know there are no guarantees and lots of ups and downs to come. Let me know how the fish oil experiment turns out! To his teacher's dismay I am going to keep him out of school another three to four weeks b.c. there are such rampant sicknesses going around. He might be behind in school when he goes back (nothing new, sigh...), but I have to give him the best chance possible to heal from the ivig. I did take him to a museum Saturday as well, hoping he didn't pick something up:( It's scary and frustrating that our children are at the mercy of other's sicknesses. I feel like I look like I have ocd by the way I'm constantly rubbing hand sanitizer on him and myself, lol. p.s. I think we both "like" the pepsi refresh project on Facebook, maybe we can be friends on there as well? (Laura Ingalls Ventura); I always notice your posts because my identical twin sister is named Sarah Jane (just goes by Sarah to most), but makes your posts stand out to me!

Hi Sarah Jane, Thanks so much for responding! I think I am just a nervous nellie sometimes over any and all symptoms I'm not expecting. He seems much better this morning. I think like you said, it just takes time to heal and there will be healing taking place over the next several weeks that may come in different forms. My son was taking all recommended vitamins on Dr. K's protocol, but two days ago he stopped taking vitamin e, folic acid, vitamin c, AND the fish oil? basically, it's all i can do to get him to take the augmentin twice/day - maybe stopping all those caused the headache?! I hope your son continues to improve as well. Sincerely, Laura

Hi, my son (10) had ivig with Dr. K two weeks ago. He had fever/headaches for all of the first week after. In fact, I posted asking advice on whether or not to take to e.r. it was so bad. However, this past week he was really good - headaches and fever gone, great mood, very minimal ocd remaining, at least compared to what he was like pre-ivig:) He was HUMMING yesterday - something I haven't heard in months!!! Then, out of the blue today he had severe headache (tears streaming down his face and said his head was throbbing) and said his eyes hurt so much that he couldn't keep them open, he also had chills, but wouldn't let me take his temperature to see if fever, although he didn't feel terribly hot. His ocd also ramped up starting last night and all through today. He slept for about 1/2 hour (very rare for him to take a nap) and took some children's liquid advil and now just says he still feels really tired and minor headache, still light sensitivity for eyes. I don't want to panic, but I was reading that headaches and eye pain and chills could be symptoms of bartonella infection. But, I also thought I had read somewhere on this forum that these could be signs of herxing. But, being that he is two weeks post ivig, is there less of a chance that this is herxing and should I have blood tests done to rule out bartonella? I should also note that I don't think this is a flu or sickness. We haven't been out much since ivig and he already has had the awful viral sickness that was going around - the coughing, rundown, sinus pressure (I had it at the time of his ivig and think I infected him:(...) I guess it could be possible that this is a new bug, but would appreciate anyone's experiences with herxing and/or bartonella infections if there is anyone - with herxing, specifically, what are the timeframes post ivig that this would show up and are headaches/eyepain/chills signs of this? Have not had the good Igenex lyme test done, but his ped did run lyme blood test (no idea what one) and she said it was negative. I think it was just a test of lyme titer levels, if that's possible. I'm scared to go look at the paperwork as I'm right next to my son and I don't want to wake him up!!! Thanks for any and all responses.

He's still about the same. Just checked his fever after double dose of tylenol and it's down to 100.3, so a little relieved. He's smiling and talking to me so that is a good sign. Thanks for the previous thread, I will keep you updated. I guess it's only been five days and his fever comes and goes. Just scary sometimes. I hope we never have to go through this again!!! Love and prayers for all of our children, Laura

Hi, my son Kyle (10) had ivig treatment this past thursday and friday 24th and 25th with Dr. K in Chicago. He woke up Saturday morning with a huge headache and a fever. Dr. K instructed to give one dose of steroids when tylenol didn't help the headache. He was fine coming home Saturday night, but was very sluggish/flu like on Sunday. His fever got up to 103 Sunday, but after administering second dose of steroids per phone call with Dr. K, it went down. It is now Wednesday and he still has fever off and on. I called Dr. K this morning because he woke up with bad headache and fever over 101.4 AND he said his neck hurt. I told Dr. K I was scared that he had aseptic meningitis. Dr. K said to keep giving him motrin and tylenol alternating to bring down fever and have him rest. He said he didn't think it was meningitis since it has been five days now and also since Kyle hasn't been throwing up (Kyle never throws up thankfully). He said if fever gets really high again to take him to doctor. I said to the E.R.? He said no, no, just to the doctor to have him checked out. We got fever down with tylenol and motrin, but he is still really really sluggish. I also think he has caught some sort of cold that I caught while we were in Chicago - coughing a lot. My husband researched online and said all the hospital would do is tell him to get lots of rest and liquids, nothing that we aren't doing. And with Dr. K acting like I am overreacting also I have listened to them and have stayed in bed with him all day, trying to get him to rest and keep checking his temp. It just went back up to 101.2 and just gave another dose of tylenol and hoping it's coming down. But, I'm wondering if I should take to the ER? Will they do anything different for me? Any and all advice welcome!!!

I know this has been posted for awhile, but I really need to vent! ENT 1 - This cyst in your son's sinuses does not appear to be causing any problems. Me (mom) - It isn't causing breathing problems, but my son has an auto-immune disorder and I need to determine if cyst is infected or not and we want it removed if it is. ENT 1 - It is not infected Me - How can you tell? ENT 1 - He can breathe fine. Me - Can you do a test? ENT 1 - This is not necessary. Why do you think it is infected? Me - I don't know that it is, but we have to rule it out. ENT 1 - Why? Me - Because he has an auto-immune disorder. ENT 1 - What auto-immune disorder? Me - It's a rare disorder called pandas. ENT 1 - Confused look Me - When kids have this disorder and they get sick or any type of infection the antibodies mistakenly attack the basal ganglia in their brain, which can cause sudden/severe ocd and tics ENT 1 - ..... And what makes you think your son has this disorder? Me - Because we saw a specialist in Chicago who diagnosed him with this. ENT 1 - And how was he diagnosed? Me - He was put on a course of steroids and his 90% of his OCD went away. ENT 1 - I've never heard of such a thing. We'll keep an eye on the cyst. If he starts to have any symptoms, we can take another look. Oh, and be careful of those steroids mom, they are pretty dangerous! ENT 2 - Looking at CT Scan - ah yes, I see the cyst here. And what exactly is the problem? Me - Well, my son has an auto-immune disorder, etc., etc. ENT 2 - Well, I would have to agree with ENT 1, if he doesn't have any breathing problems or any pain, then there is no need to remove. I do see that his right nasal passage is swollen (cyst on right side); I will prescribe antibiotics for this and see him in two weeks. Me - Great. ENT 2, two weeks later - How are things? Me - Things are so much better, since my son has been on antibiotics, everything is much better. Don't you think that means there is some type of infection? ENT 2 - Why? Me - Well... because the antibiotics made things better? ENT 2 - Well, his right nasal passage is still swollen. Try using nasonex to see if this clears it up. Me - But, what about the cyst? Can you please run a test to determine if it is infected? ENT 2 - I can't just do that! Me - Why not? ENT 2 - Because the cyst is INSIDE his sinuses, I can't just go in there! Me - So, how do I know if it's infected or not and whether or not it should be removed? ENT 2 - Listen, you are going to have to see a pediatric ENT for this, I don't perform surgery on kids. Me - Oh... Is ENT 1 a pediatric ENT? that is who we were originally referred to ENT 2 - Oh no, there aren't any around here (we are in Lansing, MI (the state capitol)), you'll have to go to Detroit for that. Me - Okay, can you please give me a recommendation? ENT 2 - Sigh... You really want this looked into? Me - Yes!!! ENT 2 - Okay, I will have my secretary make a call to the children's hospital in Ann Arbor. (Haven't seen ENT 3 yet...)

Thanks so much everyone!! I will try to figure out how to PM soon. I think I joined the yahoo MI group, but haven't followed it as closely as this one (due to limited free time). We are seeing ENT on Tuesday; I just in my gut feel like the cyst is infected b.c. his right nasal passage was really, really swollen so they ordered ct scan to see why since he's not allergic to anything and found the cyst. They have never swabbed or done a biopsy, just instructed to take nasonex. Again, thank you so much - on to putting together a game plan prior to ENT and to speak more to my husband about postponing if ENT thinks infected!!!

Thanks for the response, I'll try to figure out how to contact Kimballot or hopefully she'll post. I really, really am debating whether or not to go ahead with the ivig or to try to get into another doctor who will find and treat the underlying infection. Maybe the cyst isn't infected, but I want to know one way or another! We seee the ENT on Tuesday (we leave Wednesday for Chicago), he had never heard of p.a.n.d.a.s. but seemed interested in it. I just can't imagine that we would get as good of results with the ivig if there is some infection in that cyst left untreated. I was reading how good Dr. Beals is in MD or D.C. and might even try calling there to see how long it would take to get a consultation/appointment.

Hi, I've been reading more than posting. I can't say how much this forum has helped me get through the past few months! My son, 10, was diagnosed with p.a.n.d.a.s. by Dr. K in January (no local doctors in Michigan where we are)... We are scheduled to have ivig next week. I'm worried that he will put us on 250 mg of augmenting for prophylactic and from reading other posts, not sure if this is adequate. Has anyone had any luck getting a stronger prophylactic dose for their child after ivig? My son is 80 lbs. Also, I'm having a heck of a time trying to get his regular pediatrician, his ENT, and even Dr. K to recognize that he has a sinus cyst that no one has ever determined if infected or not, whether this should be removed... His pediatrician recommended getting ivig done as scheduled by Dr. K and then clearing up sinus issues afterwards. His cyst is in his right side of maxillary sinus and this same side has been noted to be swollen by ENT. But, since my son doesn't complain of headaches or loss of taste/smell, they don't feel it is necessary to remove it. I'm partly venting here, but definitely asking for some advice/thoughts as well. Thanks so much, Laura