What NON abx drugs have you tried-success? or no?

[FallingApart]

The post about childhood schizophrenia has me thinking and terrified. I would imagine there are a lot of us who are pretty scared right now. And to add to that, I went and saw DD's psychologist today - without DD> The psych told me that she has been thinking childhood schizophrenia for a while now as well. Granted, we are her first PANDAS case, so...

 

But, as I read through various posts, I see that some children are on SSRIs, some Respiradol, some other drugs, and some are on none. Can we talk about the non antibiotic drugs our children are on. Each time we have tried anything on DD (in an exacerbation) they have had the paradoxical effect on her. THerfore we are terrified to try anything else on her. However, when we were in the hospital for PEX, we gave her Verced (sp?) for anxiety and somehow that one worked. Our ped was there to witness this and saw that anxiety is clearly DDs major symptom. That would make one think that she would benefit from an SSRI or an anxiety drug. But, we did try an anxiety drug this summer (can't remember the name) and it backfired.

 

So, can people reply with the meds they have tried and if they have been successful or not? I would love it if my child had "only" PANDAS and not schizophrenia.

 

Lastly, who here has done cognitive behavioral therapy? Have you seen any benefit from it? We have tried it and DD has received zero benefit from it. She is unable to take what she learns and apply it to the next troublesome situation.

 

Thanks in advance, all.

[kcdc3]

My PANDAS daughter was on Zoloft (before she was diagnosed with PANDAS) and it made things MUCH worse. She also tried CBT and it did nothing for her.

 

The post about childhood schizophrenia has me thinking and terrified. I would imagine there are a lot of us who are pretty scared right now. And to add to that, I went and saw DD's psychologist today - without DD> The psych told me that she has been thinking childhood schizophrenia for a while now as well. Granted, we are her first PANDAS case, so...

 

But, as I read through various posts, I see that some children are on SSRIs, some Respiradol, some other drugs, and some are on none. Can we talk about the non antibiotic drugs our children are on. Each time we have tried anything on DD (in an exacerbation) they have had the paradoxical effect on her. THerfore we are terrified to try anything else on her. However, when we were in the hospital for PEX, we gave her Verced (sp?) for anxiety and somehow that one worked. Our ped was there to witness this and saw that anxiety is clearly DDs major symptom. That would make one think that she would benefit from an SSRI or an anxiety drug. But, we did try an anxiety drug this summer (can't remember the name) and it backfired.

 

So, can people reply with the meds they have tried and if they have been successful or not? I would love it if my child had "only" PANDAS and not schizophrenia.

 

Lastly, who here has done cognitive behavioral therapy? Have you seen any benefit from it? We have tried it and DD has received zero benefit from it. She is unable to take what she learns and apply it to the next troublesome situation.

 

Thanks in advance, all.

[thereishope]

My son has not been on any SRRI's or any other meds besides an antibiotic and one time a 5 day steroid burst. The ped did want to do a quickie diagnosis of bipolar. Needless to say, we are not at that office anymore.

 

After my son's 3rd strep induced PANDAS exacerbation, he seemd like he was doing better ,but the OCD was still there. He was no longer in a PANDAS episode and still scored a 19 on the Yale Brown test. He would have been much, much higher if he was in an actual exacerbation. Anyway, CBT and "talking back to the OCD" didn't work. In his eyes, there was no problem.The OCD didn't botehr him either. How can you get a 5 year old to talk back to OCD when he didn't think he had OCD? But he did do well with me weaning him off his OCD tendencies. I think it was like ERP. It took 2 months, but he overcame all of it.

 

What are her symptoms right now? How old is your daughter again?

[Megs_Mom]

We did ERP therapy & it did help us get through every day much more easily. But after antibiotics, she can do the ERP SO much more easily.

 

I do have to say that a lot of it was how we reacted to her, so that is part of the success. But also, it was amazingly hard work. It would take doing one specific task about 50 - 200 times before she could start to do it herself. But much of it was giving her tools to use, that we directed her on, that kept the OCD from spiraling in a circle. We are huge believers in ERP, but that is just our story. As an example, she would scream "my stomach hurts & I am going to throw up" all the time & then run to restroom, refuse food, not wear clothes - whatever you can imagine. So we put together a list of "what makes our stomach hurt" and she carried this everywhere - we had 10 copies - one in her pocket, one in every room, one I carried around. And instead of responding to her with reassurance, I would ask her to read the list and see if any of those things might be the issue (needing to pee, needing to poop, being hungry, being really full - it was like she lost the ability to read her own body anymore). Then she would read the list out loud, crying the entire time - and then we'd make up another funny reason (like or, it could be tiny people putting up belly art?). Then we would say, is it possible that you are hungry or need to poop? And after some time, she could pick the reason. She still felt the fear, but it did not dial out of control. The antibiotic seems to be making the fear go away or dimenish in intensity by so much. I have to say, she is a really smart kid - but she could not remember this tool for 5 minutes, without hundreds of repititions. But the tool itself did calm each episode, even though the panic was there - it just did not spiral.

 

And I say this every time - I firmly believe that treating the PANDAS with antibiotics or other treatments is most of the battle. Maybe it is because her OCD was so severe, but in many ways, it felt like some of OCD had become a habit. We also did habit reversal therapy for things like spitting which at the worst, was nearly non-stop. We would have to change her shirt multiple times because she was soaked. Every picture from that time has big rashes all around her mouth. And it took 3 -4 weeks of work to stop spitting. I can't even count how many time of practice or explain how much work it was.

 

ERP is just a tool - and if it works, it is very helpful.

[T_Mom]

...And I say this every time - I firmly believe that treating the PANDAS with antibiotics or other treatments is most of the battle. Maybe it is because her OCD was so severe, but in many ways, it felt like some of OCD had become a habit. ...

 

I so agree with Meg's Mom. Our d was put on zoloft (very low level) and switched to a very low level prozac prescription, which we continue because we are scared to change anything.

 

We believe it is the antibiotics and two steroid bursts that have "cleared" her. Sudden and obvious change with the steroids, and gradual but lasting change with almost a year of full strength antibiotics.

 

We did about three months of CBT. It helped us all "talk" the vocab., cost us thousands, and maybe helped the school (I guess!?) -- but did it really help change anything...not so sure about that one...I'd have to say no. During an exacerbation she could not apply the principles, and when not symptomatic she did not need it-- We still use the vocab though.

 

I will add that I asked 3 different psychiatrists whether or not our d was psychotic (severe, severe behaviors for a month 08), each one said no. I would get a few opinions from folks on a child psych. ward, and those who have had extensive experience with childhood schizophrenia to compare opinions. My d was in a ball, holding painful positions, walking on her knees, non-verbal, spitting on herself, and wetting herself, acting like a naughty 4 year old when she did interact, and this came on suddenly and lasted about a month. Oh, and she had OCD as well. It is still hard to believe at times.

 

It takes time to heal.

[matis_mom]

Falling Apart:

I am quoting here an e-mail from my friend whose dd had severe psychiatric symptoms (turned out to be Lymes/Babesia/maybe PANDAS). After trying conventional docs and having horrible experiences with drugs, she is seeing a holistic doc (the same one we see) and they have seen great improvement, although her daughter still needs some psychiatric drugs. They did this test to find out what would/would not work and they have finally found the right meds. Maybe you can check this out.

 

""I wanted to suggest something to you. If you are considering psych meds- XXXXX has been using them. I was DEAD set against it- until this happened. I have a very LONG story about our experiences- but I would recommend the Genova test that is about detoxification. maybe you have this done already?

Basically, this test showed what we had already found out in a very ugly way. XXXXXX is unable to process properly several medicines, including prozac and luvox which she actually took and suffered violently from for months while the psychiatrist told us that sometimes it takes time and not everything works for everybody. We have found one that does help, I believe. I used to be a die-hard no psychiatry med-type person,.One thing this whole experience has taught me is not to judge!

DetoxiGenomic Profile - Diagnostic Laboratory Testing for Wellness & Preventive Medicine - Genova Diagnostics

It is one of those new "personalized medicine" things that is talked about in the news. It cost us $330.""

 

We have not tried anything other than abx yet, but are considering trying something to decrease the anxiety. Even though our doctor is convinced the abxs will work in time, she suggested we consult a psychiatrist to see about putting him on a low dose of Lamictal (sp?) to help him with the symtoms. But we decided to postpone and go see Dr. Latimer instead.

 

We did ERP therapy & it did help us get through every day much more easily. But after antibiotics, she can do the ERP SO much more easily.

ERP is just a tool - and if it works, it is very helpful.

 

Meg's Mom,

I have no clue what ERP is, but it seems like something I should look into to deal with some behaviors. Could you please educated me?

 

Thanks!

 

Isabel

[peglem]

Well, I'll try to remember everything we've tried....we've been doing this a looooooooong time and have tried just about everything!

3yo-tried clonadine, just to help with sleep. It did make her sleepy, and irritable, but didn't help her sleep at all.

Between then and @ 6 years old, I recognized that the psychiatrists really didn't have a clue what to do for her. So, I was unwilling at that time and age to try psych meds. So we went the supplement route...tried all the things that were recommended by the "autism crowd"- B6, magnesium, what's that tryptophan stuff?- shoot, even tried some really expensive sublingual secretin stuff- geez what crazy times those were! The thing is (in hindsight) with the ups and downs of PANDAS- when the ups happened, we would always think it was whatever we were trying at the time making a difference...then the downs would happen and we'd switch to something else...viscious cycle. I don't want to bash the Pfeifer Group, (this was age 10) because I do hear some people see good things with them, but for us, it was a waste of lots of cash.

Age 4-8, did the whole GF/CF thing....thought it might be helping, but I think it really just made us feel like we were doing something to help. When we went off that diet we saw absolutely no difference.

By 6yo- we were terribly desperate and it was so bad, even though she weighed just 45lbs, we were beginning to think that maybe we were going to have to institutionalize her...DARK, DARK times. So, I thought, well, if we have to do that, they're just going to drug her into managability anyway, so I may as well try psych meds. At least I would be more careful and vigilant than an institution...so we tried.

Prozac....did nothing. Abilify.....nothing. Zoloft....nothing. They kept pushing for risperdal- it scared me so I tried to avoid it for a long time. I'm sure there were a few more in there that I can't remember. We did manage to get a psychiatrist to try bethanechol (its a cholinergic drug) off label. That did help for awhile- its like an anti- fight or flight thing. That also improved her speech.

At about 8yo, we finally tried the risperdal. It helped with sleep and appetite (my daughter did not each much...lots of eating issues), but still lots of rages. We increased dosage...not better. We were on it for about 2 years....ugh, I hate that stuff!

At age 10 we switched psychiatrists...a few times. Went off the risperdal- she was not worse w/o it. Tried trileptal- bad move, rages increased. probably some other things in there...can't remember.

At age 10, also switched pediatricians due to an insurance change at work. began learning about PANDAS, thought it might be a possibility, but since no doctor had ever tested for strep, it was unknown if she'd ever had it. I got the new pediatrician to check- the rapid turned positive in about 30 seconds. She was given a course of abx, and we thought it was over until the school year started and she had a big exacerbation...her teacher and I were at our wits end for about a month, and then her teacher said maybe she's sick, so we took her to the doctor- strep again...this started a 2 year cycle of abx, strep, abx, strep. We tried risperdal again a few times...mostly pressure from school to try SOMETHING. When she came out of exacerbation it was attributed to risperdal....

Ultimately, we ended up at a neurologist, who thought some of what we were seeing was seizures...so we tried Lamictal. It has helped somewhat...still absolutely crazy when exacerbations happen, but better overall. She's still on that. Tried Lithium in combo with that last spring...NOT GOOD- discontinued after 1 week.

 

Right Now, other than ABX and Nystatin, she's still on Lamictal and bethanechol.

[Megs_Mom]

Hi Isobel - ERP therapy is called Exposure & Ritual Prevention. A CBT therapist can do this (it's a kind of CBT) - BUT most CBT therapists are NOT trained in ERP for OCD, especially in the pediatric community - so be careful. ESsentially, ERP's premise is that instead of avoiding the anxiety situation or reassuring - you expose them to the anxiety - in tiny steps. It is easiest to talk about this in terms of examples, so is there a specific behavior that you think is OCD related and that you think your child would like to get rid of?

 

Here is an example for us - Meg was very afraid of robbers in the house. This became an enormous obsession, and her compulsion was to be with a safe person. So she could not play alone - or use the restroom or bathe - or sleep. She had no privacy and neither did I. She became my constant shadow. And she would scream "Mom" at the top of her lungs if I went in another room - in a clear panic. One day, she was screaming so much that she could not hear me call back. I was...um...occupied, so I could not run to her. So she ended up running out of the house & down the drive in a terror. I am not sure where she was going. That was one of those moments when I knew we had to do something to help her!

 

So the therapy for this was to break the compulsion down into a tiny tiny goal. We talked about what was happening (strongly advise ordering "What to do When Your Brain Gets Stuck" - it is a workbook for kids that explains OCD - every kid I have given this to LOVES it. It leaves them feeling much less alone, if nothing else) and then developed a plan for what we'd try. She agreed to the plan -that is important. Then we had a reward system - for us, this was mostly a "prize box" with a point system to earn based on "our bravery work". We also named the OCD - the worryman - so that we could talk about it. For a long time, she would deny that something was OCD, but we would just repeatedly calmly say "I am sorry that the worryman is being so mean to you - I can help you learn some tools to get rid of him". Anyway, our first step was for Megan to go in her room & I would stand on the other side of the door. I think we set a 5 minute goal. Well that was a bust!!! So we set a tiny goal - I have lost track now, but maybe 20 seconds! I would then go in & hug her & tell her she got a point & then we'd do it again. We might do 20 seconds for 10 times - until it became easy and boring. Then we'd do it for 40 seconds. Then a minute. Then I might move to the stairs & do a minute on that. We would practice about 10 times, or 30 minutes per ERP work session. The screaming "mom" went away first. She learned to just come look for me. Eventually, after a week or two, I could go downstairs for 5 minutes. And then we worked up to 15 minutes. At that point, it kind of went away. I really felt like I was training a stroke victim. How could my child have forgotten how to be alone for 1 minute? So I kind of treated her like a stroke victim - firm but empathetic, always saying that she could do it. Then we would always go to something fun after we worked so very hard.

 

Another tool we used when she was worried about robbers, was to use a "loop". Since Meg was so young, we did this in a song. We would sing to the tune of hi ho the derio (sp? weird word!) - she would cry and cry for the first few verses, but then would calm down. So instead of saying "Meg there are no robbers in our house!" I would say - let's sing the robber song together. So like "there are robbers in my house, there are robbers in my house, hi ho the derrio, there are robbers in my house". Then we'd use each room of the house "there are robbers in the closet, there are robbers in the closet...." etc. We usually tried to do about 10 verses and then when she'd start to get bored (ie, the anxiety was gone), I'd change it up & do something like "there are rabbits in the potty" - just for fun. Looping really worked as exposure to things that we clearly could not really do (or at least we hope not!!!) We know a lot of very funny songs now.

 

For parents, I really recommend reading Aureen Wagners "What to do when your child has Obsessive Compulsive Disorder". I never imagined how many ways that OCD could impact her life, and I found it really challenging to understand the "mind" compulsions that I could not easily see.

 

Again, so this post is not taken out of context - this is a tool which if well practiced can help your child keep from spiraling out of control - maybe not in the worst of an episode, but for many kids. And it really worked to reduce the impact of OCD even when we were untreated. But I would not recommend this for a PANDAS child without medical treatment as well. I found that when we added the abx, the ERP work went SO much faster and so much more easily. I don't want another episode, but we will immediately go to increased antibiotics & likely steroids in the hopes of keeping an episode down to a week or two instead of months.

 

There are tons of other tools - and they work best with the child understanding how they are going to retrain their brain.

At this point, our entire family practices ERP. It sort of becomes the way you live. Sometimes Meg will say "mom, do you have a worryman"? And she is usually right. We also would look for worrymen in other people. It is easy to see in a mall!

[Worried_Dad]

Psych meds were a disaster for us - they either had no effect (at best) or made things much, much worse.

 

Tried zyprexa (neuroleptic) and zoloft (SSRI).

Tried 3 different benzos for anxiety (valium, klonopin, ativan).

 

Ativan was the worst: it literally was like pouring gasoline on a raging fire for our son.

[thereishope]

I also believe that OCD can become "habit". I say residual. That's what happened with my son. If the brain thinks that way long enough, I think the brain may retrain itself to continue to think like that even post PANDAS exacerbation (even if it's the wrong thoughts). If CBT retrains the brain in a good way, I can see how a bad form of retraining can occur as well.

[melanie]

I also believe that OCD can become "habit". I say residual. That's what happened with my son. If the brain thinks that way long enough, I think the brain may retrain itself to continue to think like that even post PANDAS exacerbation (even if it's the wrong thoughts). If CBT retrains the brain in a good way, I can see how a bad form of retraining can occur as well.

 

Ifyou can name a drug we have tried it SSRIs arethe worst he takes risperadal .5 2xperday and buspar 15mg Rispeadal worked at first pretty good now well Im not sure IVIG worked great for about 21/2 weeks

 

Melanie

[dcmom]

Megs mom- Thank you for that post. I like the "loop", and will file that in my brain in case we may need it. The books tell you to talk about their intrusive thoughts and maybe in a funny way- but I could never figure out how.... This might not work during our darkest days, but it sounds promising for the spiral down, and the climb back up

[JDuffner]

The post about childhood schizophrenia has me thinking and terrified. I would imagine there are a lot of us who are pretty scared right now. And to add to that, I went and saw DD's psychologist today - without DD> The psych told me that she has been thinking childhood schizophrenia for a while now as well. Granted, we are her first PANDAS case, so...

 

But, as I read through various posts, I see that some children are on SSRIs, some Respiradol, some other drugs, and some are on none. Can we talk about the non antibiotic drugs our children are on. Each time we have tried anything on DD (in an exacerbation) they have had the paradoxical effect on her. THerfore we are terrified to try anything else on her. However, when we were in the hospital for PEX, we gave her Verced (sp?) for anxiety and somehow that one worked. Our ped was there to witness this and saw that anxiety is clearly DDs major symptom. That would make one think that she would benefit from an SSRI or an anxiety drug. But, we did try an anxiety drug this summer (can't remember the name) and it backfired.

 

So, can people reply with the meds they have tried and if they have been successful or not? I would love it if my child had "only" PANDAS and not schizophrenia.

 

Lastly, who here has done cognitive behavioral therapy? Have you seen any benefit from it? We have tried it and DD has received zero benefit from it. She is unable to take what she learns and apply it to the next troublesome situation.

 

Thanks in advance, all.

[JDuffner]

Hi,

 

I just learned from Dut that I believe you and I have met before in Woodinville. I am so frsutrated as I just wrote Dut a very long case history on my daughter and when I hit send the website said it was overloaded and lost it!!! Like we have TIME as moms of PANDAS kids!! Anyhow, I am inclined to believe I was the mom at the OT Center that helped your youngest while you watched your 4 year old in the parking lot. I believe we met again in the lobby at Dr. Kellers.

 

My daughters medical history is extensive. In a short nutshell, for years they diagnosed her with another illness (which it could have possibly been or now I think it may have been Rhuematic Fever or Scarlet fever) and the only known treatment was IVIG done once at age 3 to save her life in Texas from vasculitis that was occurring in her body. I could go on and on about the symptoms since that time. In 9 months we went to Gastro specialist with stomach issues, Opthamologist for any hidden underlying issues (does anyone elses kids take 4 days to undilate from the eye meds?), rhuematoid specialist for joint pain, cardiologist for heart palipitations and Kawasaki's related checks, electro conductivity specialist for the same, ENT for constant fluid on ears without infection, ENT for recommendedation to remove tonsils (not done), Allergist for reactions to medicatiopns, environment, sudden onset respiratory issues, etc.

 

After a two hour entry exam with Keller, Keller believed this was PANDAS, I felt in my heart it was PANDAS. I had strep while beastfeeding. I had a autoimmune disorder (hypothyroid). Her Dad has not admitted but diagnosed ADD. My daughter always had a sensitive constitution. Major reactions to vaccines. Immunity issues, she caught everything all the time. She had a dystonic seizure to a medication they gave her at 6 months for what they thought was GERD! At 9 months I had to take her to a Homeopathy doctor for a rememdy to colic that she had had since birth. It was then cured by age 1. Yet she looked and acted "normal" according to friends and doctors. The melts that to me seemed so major and out of control to them seemed developmental. The inability to sleep alone was easy because I was a attachment parent...thankfully It also saved her life on several hypothermic nights in her future.

 

My daughter had strep at age 2.5 at Baylor in Texas. Four months later at age 3 was administered Hep A (there are known cases on vaccine administration and links to PANDAS on Dr. K's web site) and within 15 days labeled with Kawasaki's undergoing IVIG to protect her heart from aneurysyms. For years I have dealt with emotional, behavioral, sleep, educational and immunity issues. Everyone, including close friends and family believed it was behavioral. I felt like I was always being judged. She has always been on the mega hyper mode which other attribute to "her getting naturally from her parents who have endless amounts of energy." Yet my child is also super social and well liked. Incidents that happend once a year liked horrible "bitings" or explosve punchign outbursts" were just considered behavior that needed "modification with things taken away." Times out never worked.....I never realized I was doing it, but from early on I was doing ERT with her...she got "calm down" times instead because nothign else worked. I taught her deep breathing, I held her like my mother had taught me, tight until she calmed.

 

Ages 4-5 were relatively calm after IVIG, but behavior issues were present. The worst was she contracted strep at least 4 more times.

 

Age 5 brought a move to Washington and marital issues. The move from unkown caused her severe stress. Everyone attributed her inability to transition to home stress and move stress. I always knew in my gut there was more. She continually cried when I would leave her at Eton. I now realize the child had anxiety for years.

 

Age 5.5, last summer was the big hit as I like to call it. A doctor at Pediatric Associates insisted I administer the Hep A again for school. I should have resisted. My gut told me to! 10 days later my daughter was suffering the first of many severe motor tics, body jerks....over the last year we have noticed major regression in fine motor ability, reading, art...I have documented evidence. I began supplementing immediately with ALA, Selenium, etc. I took her to a Chiropractic Nuero asap. He saw the tics, he put her on a GF/CF diet and had me read Ritalin Free kids amongst other books. I have spent the last year with her at Nuerologists, Chiropractic Neurologists, Naturopaths, Homeopaths for rememdies, OTs, Tutors. Yet the doctors at Ped Assoc refused to acknowledge she had any issues. They sent us for EEG and dismissed any tics by the Nuerologist as normal.

 

6 months later (january 2009) Eton began noticing last spring major regression in her fine motor ability. I sent her to Dr Kristi Kwon in Bellevue for Cognitive testing because everyone was saying "Eton is not the right school she is super smart, you have her in the wrong environment and home stress is why this is going on." She interviewed and was accepted at St Thomas, Chestnut hill Academy, Eton, Sacred Heart, The Little School. Yet she could hardly write suddenly, her drawings were becoming scribble, she tired easily was easily agittated and frustrated had a reading regression from chapter books back to level 1 and bobs books...I saw the damage occuring and it scared me! Dr. Kwon tested her using the Weschler in April on 2009 and her scores 98% above her peers yest there was a disconnect were processing ability. Kwon and others advised putting her in sa small structured environment or poublic school. They felt Montessori was causing the issues. They advised OT would help for fine motor issues....

 

May 2009 started at the OT center. June diagnosed with Sensory Modulation Disorder...but they were not 100% convinced. Spent entire summer there. September purchased the ILS system and began using it at home. Her physical symptoms wax an wane with viruses, yet the scariest for me has been the regression in ability to read, write, draw.

 

My daughter was just diagnosed two weeks ago by Keller with PANDAS after the Univ of OK bloodwork came back well within PANDAS parameters.

 

I remember telling you that day in the parkign lot at the OT it will get better....it will...but you may not have seen the worst. and I will not sugar coat the days ahead.

 

I now question if this is not only environmental and bacterial, but also genetic. My nephew (age 28), my sisters first child, had all of this and THEN some and was raised by my parents from age 4. He would throw up daily on the way to school. My mother had to work at the school to keep him there. He could not tolerate steroids, he had OCD on multiple levels, he had 13 cases of strep in one year. He was diagnosed a "carrier". I am sure he is and was PANDAS. He underwent CBT for years. He had a genius IQ but inability to write. He had staring seizures. He self medicated and experimented on himself as a teen as he was super smart (the only thing that worked...forgive me for saying this... was marijuana apparently to alleviate the anxiety). At puberty (they say girls outgrow it more often then boys) he had two or three suicidal episodes and several episodes of schizophrenia after the doctors gave him Accutane for the acne described on this website by some of the others. My daughter is the same. She absolutely CANNOT take any medications that opthers kdsi can take. Homeopathy is the only route for her. He suffered dibilitating anxiety for years yet my mother pushed him forward. He treated himself with GF/CF diets, homeopathy, you name it. He eventually graduated with a LPN at age 24, met and married an RN at 25. Had a tonsillectomy at 26. Has had horrible weight gain from all the medications yet at age 28 is happily married, owns a home in Charlottesville, VA and works when he can when his anxiety does not overcome him and will soon become a stay at home dad. His story shows me that unconditional love can overcome all obstacles including PANDAS. He is alive and happy and successful in his own right. I want you to know this because no matter what you are up against, your unconditional love and persistence will find a way into this child and heal her.

 

Keller started the Zithro on my daughter a month ago. No noticeable difference. I am now wondering is the doseage if enough or if we should switch to Augmentin. We did the steroid last week. Marked improvements in school for the last few days..ability to articulate math problems, write one sentence stories, for the first time ever. Yet it also brought with it episodic anger that has been easily manageable. What has not been manageable is the mega hyper activity level and invasive of others personal space. So much so the school ask me to keep her home due to excessive chattiness.

 

My next step is to work with a homeopath (Keller has one) to do another remedy before I do IVIG. I also want to discuss whether the dosing and antibiotic are right before moving to IVIG.

 

I commend you for pioneering forward with PEX. I know your situation and know you have been through a LOT. I pray for you and for your entire family.

I think often you just need relief, you just need to cry or shout...feel free to call me if you want to talk or meet 425.301.9093 Having someone else who understands what you are goign through sometimes is just enough to make it through the days (and nights). if it's any consolation my dauhgter used to wake twice a night until she was four. Now we are down to one time at 4:30am. Yet since moving here...she dropped from 11 hours a night cummulative to 9!!! after antibiotic she was doign 10-11...then got H1N1 and went down to 9 again ever since. The blips I think will be there for a while........

 

The post about childhood schizophrenia has me thinking and terrified. I would imagine there are a lot of us who are pretty scared right now. And to add to that, I went and saw DD's psychologist today - without DD> The psych told me that she has been thinking childhood schizophrenia for a while now as well. Granted, we are her first PANDAS case, so...

 

But, as I read through various posts, I see that some children are on SSRIs, some Respiradol, some other drugs, and some are on none. Can we talk about the non antibiotic drugs our children are on. Each time we have tried anything on DD (in an exacerbation) they have had the paradoxical effect on her. THerfore we are terrified to try anything else on her. However, when we were in the hospital for PEX, we gave her Verced (sp?) for anxiety and somehow that one worked. Our ped was there to witness this and saw that anxiety is clearly DDs major symptom. That would make one think that she would benefit from an SSRI or an anxiety drug. But, we did try an anxiety drug this summer (can't remember the name) and it backfired.

 

So, can people reply with the meds they have tried and if they have been successful or not? I would love it if my child had "only" PANDAS and not schizophrenia.

 

Lastly, who here has done cognitive behavioral therapy? Have you seen any benefit from it? We have tried it and DD has received zero benefit from it. She is unable to take what she learns and apply it to the next troublesome situation.

 

Thanks in advance, all.

[matis_mom]

Again, so this post is not taken out of context - this is a tool which if well practiced can help your child keep from spiraling out of control - maybe not in the worst of an episode, but for many kids. And it really worked to reduce the impact of OCD even when we were untreated. But I would not recommend this for a PANDAS child without medical treatment as well. I found that when we added the abx, the ERP work went SO much faster and so much more easily. I don't want another episode, but we will immediately go to increased antibiotics & likely steroids in the hopes of keeping an episode down to a week or two instead of months.

Thanks so much for taking the time to type it all down! We have done some CBT following a book for grown ups, but we'll definitely get the books you recommend, and start working on it again. Dr. Latimer said it doesn't really work, but I think she meant it doesn't really work BY ITSELF. I know a lot of what I see are very hard set habits by now. We are starting new abxs and steroids tomorrow. I will give it a week and then slowing start picking apart the monster! I am so hoping this will work!