Update on my son

[PowPow]

LaurenK-

 

my child did not start out with these symptoms. In fact the schizo-like symptoms came on after 3 months of IV rocephin (about 17 months post PANDAS onset)-- out LLMD warned us that it might get much, much worse during this treatment, but I do not think she even dreamed what would really happen.

We are just now (FINALLY!) getting to the "repeat" HD IVIG part of treatment. We have had pex twice and IVIG once. IV steroids, also.

you can PM me if you would like more info on how our lyme/babesia tx went.

It is hard to say whether the morphing of psych symptoms was going to happen- was it masquerading as PANDAS/LYME; it is a progression of PANDAS/LYME; another type of encephalitis; I cannot say.

I have no known family history of schizophrenia. I have another child with clear strep- associated PANDAS (2 major exacerbations) who is one year post-pex and 9 months post IVIG and doing well. So why did this not all work for the other child? I wish I knew. We did not pursue any lyme testing or treatment for the clear-cut strep child.

 

Another thing to point out -- the treatment mentioned by that doctor smartyjones posted about (schizophrenia/toxoplasmosis guy at JHU) artemisia, was given to my child for a positive Babesia WA-1 test. My child was functioning at clearly the best since onset under the care of the LLMD. Artemisia was one of many supplements. Interesting that he mentions that in the article, anyway.

 

hope this helps someone.

[momaine]

Ellen,

I am so sorry to read this. My thoughts and prayers are with your and your family in this most difficult time. Hang in there.

[Ellen]

Thanks everyone for all these responses. Since I posted this update, I have also gotten many supportive pms and emails. Many have suggestions, which I will keep in mind for a time when my son is well enough to live at home and/or travel to see new doctors. Even though we are taking a break from PANDAS treatments while he is in the hospital (and this could be a long-term stay that could last many months), I see the current psychiatric-medication-only course we are on right now as a temporary vacation from other interventions. I think at some point Clozaril may get him to a more stable place, but I don't see this as a cure of any kind. I am still hopeful that we can figure out the underlyling cause or causes and find treatments that will not just reduce but eliminate the schizophrenic symptoms.

 

Lauren K, to answer your question, there is no family history of schizophrenia or schizophrenic like symptoms. I hear your concern, but it is my experience that most people who are dealing with PANDAS or lyme and coinfections do not see these symptoms. I'm not sure what combination of factors brought my son to where he is now, and I am eager to talk with Powpow and any others who might have a PANDAS son or daughter with similar symptoms, but most people I know who are dealing with PANDAS OCD may or may not see psychotic features, but do not have the kind of full-blown psychosis that my son is dealing with now.

 

After four years of seeing just about everyone there is to see and trying just about everything there is to try, I feel that my son should be doing much much better.Many of the treatments that have worked well for others have not worked for him, and many of his doctors consider him to be a complicated and treatment-resistant case. But even though he is severely impaired right now, I believe that the bright, funny, creative and thoughtful boy (the same boy who at one point got well enough to develop a great website for kids with PANDAS) is still there.I will continue to welcome any additional posts or pms with thoughts, suggestions or links to info you might have that might help us get him back.l. We can't do that much now, but I'm taking it all in for later on, when he is back home and there is an opportunity to do more.

 

Ellen

 

 

 

 

 

I have not posted an update on my DS 15 in a very long time. I had been waiting for things to get better in the hopes that there would be something positive to share. But this has not happened, and I feel it's time to share what we have been going through over the past year and a half.

 

My son developed PANDAS after a strep at age 10 and things got much worse after he had vaccines several months later. He was hospitalized seven times when he was in the sixth grade until things slowly improved after numerous interventions and he went three years (until May of this year) without being hospitalized.

 

Between 6th and 8th grade, he got to a point where he was about 80-90 percent recovered. I believe many things contributed to this including antibiotics, a gfcf diet and numerous supplements, two rounds of plasmapheresis, three rounds of high dose IVIG (only the first one seemed to help him), and neurofeedback. Although he required many accommodations in school, he graduated 8th grade with very good grades and the Rotary Club award for extraordinary progress, and we really thought he was on his way to a full recovery.

 

Then he had a setback in the summer after 8th grade, triggered by an arm fracture that happened while he was in overnight camp, and things began to go downhill. We tried doing lyme treatment for a second time (we had tried it once before when he was in sixth grade), but things continued to get worse, and during his 9th grade year, he became more and more impaired until he was unable to do school work, engage in productive activities or function in a normal way. Beginning in April of this year, his OCD took a back seat to new and much more disturbing symptoms, major debilitating delusions and paranoia. I am not sure what caused the onset of the psychosis, but one of his doctors feels that a growth spurt and puberty, may have played a big role, and I am in agreement with this theory.

 

Since April we have tried just about everything there is to try to fight this (including Bicillin shots, changes in antibiotics and supplements, another high dose IVIG in July, high dose antipsychotics, and homeopathy). But no matter what we did, he continued to get worse, and two months ago his delusions took over to the point where he could no longer keep himself safe and we had to hospitalize him again.

 

He has been in the hospital since late October, and a couple of different antipsychotics were tried without much success. He is now beginning to respond to Clozaril, a last resort antipscyotic, which is often used for treatment resistant schizophrenics. So far the improvements are very very small, just baby steps, but we are hoping that at some point, it will reduce the delusions and get him to a point where he can function in a more normal way.

 

For now we are taking a break from PANDAS treatments ( I feel like we have done all there is to do and tried all there is to try but nothing that has worked for him in the past seems to work in the present). Hopefully, at some point, when he is ready to come back home again, we can try something new. I am not sure if this is PANDAS mimicking schizophrenia or if he now has actual schizophrenia that began as PANDAS, but regardless of the cause, we are forced to rely on psychiatric medications since nothing else seems to help. If anyone knows of similar stories, of kids who started out with OCD as the prominent PANDAS symptom, and are now dealing with full-blown delusions/hallucinations/paranoia I would like to hear more. I am trying to figure out what may have caused this, how he got to this point where nothing we try seems to help, and what interventions to consider for the future.

 

This has been a devastating year and a difficult holiday season for our family. But I am trying my best to remain positive and hopeful and keep thinking there is something that we haven't tried that will help in a big way and get him back to the high functioning, creative, funny, and happy kid he used to be. I know that boy is still there, wanting to come out and hoping somebody will have some advice that will help us get him back. Hope you will keep my son in your thoughts and prayers.

 

Ellen

[dcmom]

Ellen-

 

I am heartbroken and at a loss for words.

 

I wanted to encourage you to hold on to, and to remind your son, of the beautiful, creative boy that he is.

 

My daughter found great comfort in your son's website, and companions she found there (one of Pow pow's daughters) during her worst struggles with pandas. Your son has helped many others!

 

I am wondering if you have been able to find a doctor to offer your son aggressive medical treatment during this latest episode (pex, ivig, iv steroids, iv antibiotics)?

 

I will pm you a few names (I am thinking you are in the Philly area?)

[PhillyPA]

Pm'd you.

[EAMom]

Hi Ellen,

Oh, I'm so sorry to hear about your son's setbacks. Thank you for posting. Hugs! Hang in there and tell your son we are all rooting for him.

[EAMom]

ellen -- i send a PM and wish you and your son healing.

 

interesting find -- http://www.hopkinschildrens.org/Infectious-Findings-for-Schizophrenia.aspx

 

anyone know of this guy and his involvemnt, if any, with the infamous 'white paper'? Robert H. Yolken, M.D. -- of course -- johns hopkins! sorry, yes -- i'm jaded but he sounds interesting.

 

wow, very interesting! Thanks for posting.

[JuliaFaith]

Many of the treatments that have worked well for others have not worked for him, and many of his doctors consider him to be a complicated and treatment-resistant case.

Ellen

Your statement struck a cord with me because this is exactly what I was saying 1 yr. ago. After doing some DNA tests and researching Dr. Shoemaker, I found that for my son's results there is an indication that he has difficulty excreting mold & lyme toxins, and that he would not recover from lyme on abx alone. He is seeing an ND who is using abx, natureopathic, & some homeopathic meds. all combined and my son is slowly getting better after 1 yrs. of treatment. Expensive but so glad we took this route after no success with PANDAS and were looking at IVIG as our only remaining option with nothing working up to that point.

 

Hugs to your family and especially your son!