bgbarnes

I don't have any words of wisdom to add- but know we are thinking of you and hope that you are able to step back and enjoy yourself as much as possible! Take some time for yourself- if you can go for a walk etc... it is your vacation too- I promise the worry will be there when you get back (OK so I am repeating what my husband tells me daily- I am still working on it myself!) Brandy

Seriously- Texas Children's hospital?? 18 days old positive for strep WOW! how did they even know to swab?? I would love to know what Doctors she is meeting with- Good news for Texas! We need more help here! Thanks or the heads up! Brandy

Thank you guys for posting this- we have positive IGG myco in addition to high titers...I KNOW it is a big part of this!! Brandy

When we got tested my dr just wrote down cough as the diagnosis- basically she fudged the reasons for the tests for my daughter. Pretty sure my internist did the same thing for mine and my parents. It does not have to be pandas- sore throat or cough should do it. Good luck! Brandy

You know your life has changed when...........................You are excited that your pediatric GI agreed to test for strep in your child's gut with a poop test.....never thought I would be excited over a stool test..... B

I don't have a Dr for you- but all I know is you are int he right place. Hand holding is exactly what all the parents have done for me- being relatively new so you are in the right place. I am so sorry you have to be here but you will be able to learn so much just be reading and asking all the questions you can. I don't know if you saw this- it is the list of Dr's that have helped. http://www.latitudes.org/forums/index.php?showtopic=5023 Many of us are going to Dr's out of state to deal with PANDAS specialist like Dr K, Dr L, Dr T or Dr B. There are others that found them locally. Trust your Mommy gut- it ist he best thing you have! Find another Ped if you have to- keep searching!!! Good luck and keep us posted! Brandy

Thanks! I had not heard this yet- I am listening to it now! Brandy

For me my Cam K was enough to have me FULLY convinced of PANDAS- I would try and get he ABX ASAP! Your 's is definitely PANDAS range. The other parents have a better idea regarding does and type!! Good Luck!!

If my ds started having really bad symptoms that required me to sleep with him again- I would do it- especially now that I know about PANDAS. I just know for us it was a REALLY long process to get him to sleep alone- years and it took more than one parent willing to do it or the exhaustion would be too much. If he wakes me up at night- I don't get mad ( there were times when he woke me up multiple times that I did) I just help with what ever he needs 9sometimes it is snuggling, sometimes it is just a hug or to be reminded to pee. Give him love and redirect. I think we all know what our kids need- that is why we are the ones out here searching for ways to cure our kids! Good Luck! Brandy

Thanks for the info- I am going to save it and bring with me to our GI appt on Wednesday- adding to my medical folder that travels with me!! I thin my Drs are all young enough that they are willing to learn with me! If not we will find ones that will! THANKS! Brandy

The unexplained rage is our biggest- he has more OCD that I realized...but the rages- I can see in his eyes when it is over how much he hates it too.... what do the two of you make of my son's anti-lysoganglioside which is not at 320, but 1280......(cam was 179)..we have tics as main presentation and some ocd, but I'd rate it secondary. don't think he has what I would call rages, but is very headstrong and likes to have his way, so just more relentless I would say, and very irritable in the mornings especially. (just to not, fuelforall also has 1280 for anti lyso) thanks Faith From what Kathy said- is they are seeing a trend in higher anti-lysoganglioside but I think the main thing to look at is the Cam Kinase. However we know there are some PANDAS kids who are obviously PANDAS without elevated Cam Kinase For me and I am so new at this I am just guessing- I don't necessarily think the symptoms are worse in one area over another because of higher scores- I think it depends on each kid and what is going on in each body and how their individual system works. Every PANDAS kid is different and the elevations mean something is not working properly- no matter how slightly elevated it is- it is causing misfiring. One kid may have tics and no OCD the other has OCD and no tics- to my knowledge the scores do not correlate to types of symptoms- Buster would probably be the best person to ask that one. I thought all I had was rages and several small tic episodes( but not in several years)- now I see his OCD picking up everyday- he has to touch things in patterns on both sides of his body- he say she has had it for a long time and never said anything before now- he was always in motion so it was hard to see when he hid it- now it is all I see. That is what is so insidious about this disease is there is no textbook case that a Dr can say- Ah you have #1,#2 and #3 so therefore you are PANDAS. It takes thinking , detective work and very resourceful and determined parents. THANK GOD for this forum- I would NEVER be where I am today without it! I first heard the word PANDAS on 3/29/10- I don't think I will ever forget that day- it provided an answer and fear and all sorts of unknowns but it also provided HOPE! Brandy

The unexplained rage is our biggest- he has more OCD that I realized...but the rages- I can see in his eyes when it is over how much he hates it too.... Reading through some of your posts- it looks like you have your hands full with too many PANDAS- it is interesting the similarities with your youngest son. I can't even imagine!!! I am so hopeful that everything clears up with the antibiotic here...however that Mommy Gut tells me we are headed to IVIG....

Wow! I am so sorry you and your son had to go through that- I started crying reading your story! Bravo for educating everyone! You are awesome! Brandy

The unexplained rage is our biggest- he has more OCD that I realized...but the rages- I can see in his eyes when it is over how much he hates it too....

Faith- I think it is an unfortunate combination of things- our consult with Dr K is June 25th- however-I have been emailing him back and forth- even while he is in Europe- he asked me to get a circulating immune complex test before the consult too- which I will request next week. 1) Cam Kinase- 163 definitely PANDAS range- according to Kathy Alvarez. He does not have any SC so I would not expect him to be too much higher. Normal is 93 and he is above the mean of 150- that is high enough for me to indicate a big problem but he have never gotten so bad where I would consider him non-functioning- which is a blessing. Difficult, out of control, even the OCD I now sees he has is minor compared to many I see on the board- but it is getting worse. However the exorcist- boy he is quite the expert at that one- that is NOT MILD! . The positive strep test after the last one was enough to convince me!! Then there was the complete reversal after the double course of antibiotics that was the icing on the cake- my sweet boy was back! 2) Myco P- looks like our lab measures this differently than some others his IGG is 2.49 a negative is .9 and below- over double the norm 3) H pylori- He had it in the fall(we had an endoscopy) and continues to have bad stomach problems( we are going back to GI next week for stool sample to see if he still has it and other parasite possibilities) 4) If he has the Clostridia or other parasites- the MD/DC thinks he does-( muscle testing- she also confirmed myco before the lab results) it could be contributing but we do not know for sure yet- she is the one that started the parasite cleanse 5) his casein peptide was one of the highest the Dr had seen it a long time-5.45 it should be <.56 we have been dairy free for about 4 weeks now 6)DHPPA is Dihydroxyphenylpropionic Acid- we had a metabolic profile done and his was elevated which causes Bacterial Dysbyosis- his is a 7 out of 10 (10 being the worst)- it indicated Clostridia and Pseudomona are likely culprits but not guaranteed- thus the reason for the stool test 7) his ige is elevated without any real major allergies after big allergy test- Dr said it could indicate a virus or could be the Myco causing the elevation 8) his Amino Acid malabsorption is a 5 out of 10 - so not horrible but not where it should be- 9) his neurotransmitters are not on track- his Dopamine is off the charts, PEA, Taurine and are the only ones that are not elevated outside of normal reference range 10) His Lyme test was negative but 41 had ++- which is often identified with a flagellated microbe- which can be Myco ( to my understanding), He also had an IND on 39 10) It is interesting that ds Anti Dopamine is on low range for 1&2 on Cunningham b/c he has too much- he definitely needs help regulating too much Dopamine- he isn't getting it- 11) His anti- Lyso being 320- Kathy pointed this out a "technically" inside normal range but double the mean and a trend they are seeing in PANDAS kids 12) all titers we checked on him were 2 months past last known strep infection and after many rounds of antibiotic b/c our Dr "forgot" to run them the first time shortly after the exacerbation that brought us to PANDAS- so for us we still think they are too high. 13) He also has a spot of vitiligo which is an autoimmune marker which means he probably more susceptible to all this CRAP.... 14) his sisters titers are elevated- not super high but enough that it could be a problem- being divorced we split the kids up a lot on the weekend- honestly b/c Ds can be so difficult- but when they get around each other he is just MORE activated- he could be perfectly fine being one on one with either parent and then after being around his sister for a while- something clicks in...and he changes So while his titers are not off the charts- everything is elevated and so many other things are elevated- it is as if everything in his body is over activated right now. We know there is a lingering infection due to a number of different markers.....now the detective work in how to fix it! We are on day 3 of a month of Azythyromax- ENT, GI and immunologist appts next week and Dr K on the 25th...we are also getting an OT eval on the 11th and a Psychologist who specializes in OCD on the 16th.... This is the summer of answers and solutions! Brandy

It is amazing how many things that are issues with my son- are issues with other PANDAS kids. This is one I actually have success with that I can contribute too!! It took me years to get my son to sleep alone- I co-slept with him for years- prior to my divocre my ex and I switched off so we could get alternating nights of sleep. It was not until I got divorced and remarried that we started having him sleep on his own- being a newlywed- created some different sleeping needs to me . What worked for us: He has a REALLY heavy comforter that he has to have and it surrounds him like a cocoon (that I think works like a weighted blanket now that I am learning about sensory issues- thanks Kimballot!!). He also has very specific cotton soft blankets and we bought him high thread count sheets- because he likes the softness. I had to snuggle him to sleep for years- then would get woken up up to 5 times a night and would get him back to bed- I was exhausted but determined to get him to sleep alone. My new husband started putting him back to sleep in the middle of the night- thinking if he did not his Mommy fix it might reduce the frequency- I have to admit it did help. Regarding the snuggling to sleep- I probably did this for a year- then We started using a timer- I will snuggle you for 15 minutes-very often he fell asleep but he knew I was going to leave did that for a couple months- then we gradually reduced it. The first few weeks of leaving while he was awake was REALLY REALLY hard. It was brutal in the beginning but we stuck to it. We reduced the time slowly. Now I read with him (he reads his book and I read mine at the same time) snuggle him a couple minutes with the lights off- generally I tell him how wonderful he is, how lucky I am to be his Mom and other really gushy Mommy stuff and then I leave, when he is exacerbated or out of sorts he will sometimes ask for more time- I give him 2 more minutes and then I leave- with him awake! He does have to have very specific things to sleep with (Kimballot they are all certain soft textures that make him feel good- one is a lovie he has had since 6 weeks old- he rubs it aas he goes to sleep- luckily I bought 4 of them so we have many- he has one at his Dad's house and 2 at mine- he sleeps with both of them at my house but can be OK with 1, a pillow pet, a T-shirt pillow he made, a Large fluffy soft stuffed dog and 2 soft pillows that really end up surrounding him). I can honestly say this process took a couple of years and a very willing partner because I would have been too exhausted to carry it out alone!! I know he still crawls in bed with my ex-husband at his house and since I can't control that I don't. But at my house we have broken the cycle! The final part to stop most of the night wakings was we finally did a sleep study b/c of the enuresis and night wakings in August 2009- sure enough- sleep apnea. He was waking up or stopping breathing every 5 minutes. Once we healed from the T&A over Thanksgiving 2009- he very rarely wakes me up at night- enuresis is better too- but still has it when I now know an exacerbation is coming or in full force. We were in pull ups up until about 4 months ago. Now I want to know when he has night wetting. Prior to the T&A we would still get woken up a couple of times a week. Now I think he has learned how to self sooth most of the time. I probably get woken up once a month- or when in exacerbation this last time I was woken up a couple times because " he saw a spider in his bed"- I went up stairs pulled out the trundle- set up him to sleep there and tucked him in- deep hugs, lots of loving words, some cuddling and then I left. The next time he "saw a spider" he pulled out the trundle by himself and did not WAKE ME UP!!!! Hope this helps!! Brandy

I would call and check first- I got scared and tried to look it up and see if it was in- network and I could not find anything-I am going to be ticked if she did not tell me they were out of network!! But UHC had a number of other labs that are considered in network but labcorp is their first choice. Go to MYUHC.com look for labs.

Before I knew about PANDAS- I worked with a Homeopath in Dallas- she looked at the blood- showed us what was going on- identified bacteria, viruses and other nasty stuff in there and we used Purezyme and Protease to "clean up his blood" we went back and were able to see how much better things looked. Did it fix things- NO but I ls did not know everything. I give him purezyme now- even though we have not been back because I know we are trying to clean up his blood again. I figure it can't hurt. Brandy I also wanted to add- I went to her myself and took the same supplements- It definitely helped me feel more alert, less sluggish- but do I think it will fix the PANDAS stuff- probably not but it can be a complimentary treatment. I also remembered that she game me some homeopathic medicine for him too- don't remember a the time but we were looking at behavioral/ attention issues not PANDAS. BRandy

Before I knew about PANDAS- I worked with a Homeopath in Dallas- she looked at the blood- showed us what was going on- identified bacteria, viruses and other nasty stuff in there and we used Purezyme and Protease to "clean up his blood" we went back and were able to see how much better things looked. Did it fix things- NO but I ls did not know everything. I give him purezyme now- even though we have not been back because I know we are trying to clean up his blood again. I figure it can't hurt. Brandy

I don't have any solutions- I just wanted to let you know you are not alone! It was an episode like that where I ended up in the parking lot of a hospital and then ds started coming out of it so we drove home that led me to PANDAS so I know the pain, and fear you are going through. I pray she comes down soon. Can you do another steroid burst? Brandy

WOW! Great news- I am very interested to hear how everything goes- we are going to do a stool yest for Clostridium- have you had experience with that- we have a LOT of stomach problems so I would love to hear success stories! Congrats on your big Day! Brandy

I believe Quest Diagnostics is nationwide; we had our CD3 done there. I think all you need is a doctor's order; they prefer if your doctor is a "member" with them, because then the doctor will be in their computer, and the results are conveyed electronically. But we got our Dr. K. ordered tests there, and he does not participate in their system. So, with his address and fax number, they conveyed the results to him, and I signed a release with my mailing address, and they mailed me a copy of the test results, as well. Our insurance covered it, but I just got the statement so I can tell you what the lab would have charged on a "face rate" had they not been part of my PPO group. The CD3 would have been $141.00, best as I can tell. Labcorp is preferred but I believe UHC covers Quest too. I went there Tuesday- I have been there before and have never had a problem. Brandy

First I want to say THANK YOU Everyone on this forum- I would not have know the questions to ask, blood tests to demand or things to do to get where we are in 2 months! You have helped me unravel so many hidden problems that I am forever grateful!!! I never in a million years thought I would be in a Doctors office begging for antibiotics a couple months ago- now I have no problem doing it!! I love my PED- I walked in her office Tuesday and asked for a list of blood test for my ds8 PANDAS and non pandas DD5 since we have a consult with Dr K on the 25th- I got the results today...... It has been about 2 months since last known strep infection for DS and we have had 3 rounds of antibiotics (Omnicef) since then - a different Dr "forgot" to run them when a couple weeks after exacerbation when I first found out about PANDAS- now I am a little more pushy and went to a different Dr and got the tests . I wanted to get them so I have something to work with- to see if there are rises or preferably falling numbers.... I think I am ready for Dr K! I also think it is pretty clear my son has been SICK!!! DS Streptozyme Screen with reflex to Titer- Positive Streptozyme Titer 200- positive ASO 307- High ( not as high as some of you but still considered elevated) DNASE-B 340- High ( same comment as before but still considered elevated) Mycoplasma- IGG 2.49- High ( negative is < .90) Mycoplasma IGM 352 ( <770 considered negative) All IGG subclasses- within normal range EBV-negative Sed rate- normal C reactive protein- normal Other tests in the past month- ( these were taken about a month after exacerbation) Cam Kinase II 163 Anti-Lysoganglioside 320- technically normal but Kathy pointed out this is the highest inside "normal" and over double the mean- they are finding a trend with this Anti-Tubulin- 500 normal Anti-Dopamine 1- 500 normal but the absolute lowest normal Anti-Dopamine 2- 2000 normal but the lowest normal ( the Dopamine is interesting for us b/c we tested his neurotransmitters and most were high but Dopamine was off the chart- you got to hate arrows at the end of graphs) IGE- 253- but no significant allergies on prick test to justify raise in ige- Dr mentioned viruses can cause a rise IGG- 857 normal IGA- 44 with the range being 34-305 my friend who is an MD/DC thinks this is still too low and needs to be a consideration to watch IGM 75 ( 30-208) We also ran a metabolic profile that has elevated DHPPA which can be produced by Clostridia and Pseudomonas- which are Omebas which can be found in stagnant water- thinking back his stomach aches started after a trip to the lake last 4th of July....We will be doing a stool sample test next week- He has been on a parasite cleanse for approx 2 months at this point DD5-Non PANDAS....drumroll please.... looking like she might be a carrier! She has not had a positive strep culture in exactly 1 year! Streptozyme Screen with reflex to Titer- Positive Streptozyme Titer 200- Positive ASO_ 187- High (not super elevated but still it is considered High) DNASE-B 120 ( interesting here -technically not high- for preschool it should be less than 60 for school age less than 170- she was in Kindergarten so technically school age but just out of preschool- that is a big jump in reference range) Did not test her for Myco- but will ( the rest of the family too) I need to finish up more testing on other family members but I just feel so justified that I was not crazy- my son does not need psychotropic meds- he has been very very sick and now we know why!!! I also walked into a Dr's office today ( before I got the lab results but based on Cam Kinase and symptoms) without an appointment and got a month of zithromax for my ds- since he started exhibiting OCD symptoms recently ( new for us)we have an appt with Dr on Tues- but I did not want to wait- my ds as been slipping all week and it is breaking my heart! Trusting the Mommy Gut! I don't like that these things are going, I would not wish it on anyone but at least my gut was right! Brandy

We are Dairy free and at this time gluten reduced......( DS had really high casein peptide ratio and we were advised to stop dairy about a month ago) will probably probably move to gluten free( it is the fastest way for me to lose weight ironically) We have ot done it since finding out about PANDAS- but ds has lots of stomach pain and I am going to start a symptom tracker and see if I can tie it back to gluten- even though an endoscopy in the fall determined he was not celiac....keep us posted- I am curious too! Brandy

I hate it when people come out and say it is the parenting! My SIL told my Mom on Mothers Day- the last time we were all together and we had just learned about PANDAS that I should deal with ds's behaviors and not search from some problem to fix....PLEASE- I have been dealing with the BEHAVIORS for years- from play therapy to social skills class to psychological evaluations etc...I have done more for "dealing with behaviors" than she has ever possibly considered- how the HECK does she think I kept digging for a CAUSE- because NOTHING WORKED and it waxed and waned???? My birthday is on fathers day and I really don't know if I can keep my mouth shut when I see her- I am not very fond of her and she is a complete Narcissist and I feel sorry for my brother but if she DARES say anything around me- the GLOVE COME OFF!!! I think they may come off anyway! Brandy