PANDAS/PANS for 10 years: SOS

[reactive]

Hi All. I just joined this forum again. I have been attempting to keep up with things in the PANS/PANDAS world by reading this forum in addition to treating my son. But now I come to you all for help...so many of you are so knowledgable and I am clearly not thinking straight right now.

My ds age 14 will be 15 this August. He was diagnosed at age 4 with PANDAS (but no + strep at that time). But at the time, not as much was known as it is now. He was not given any antibiotics or other treatment. He was very severe and homebound for about 2 months with gradual return to being functional where he could attend preschool again.

 

In the years that followed he would have symptoms come and go when he was sick. OCD, tics mostly. Sometimes ADHD symptoms. And of course all the others like handwriting worse,ect. But he was never so severe that he missed more than about a week of school. But he was always sick, seems he was sick with things other kids didn't have or were going around, or would be more severely sick than his younger brother. But we could deal with it. He was tested for immunodeficiency in 2010 and those labs were normal, and at that same time he had allergy testing done where 55 out of 56 pricks were 3+ or 4+ for allergy (everything but dust mites). We almost did allergy shots but changed our mind due to conflicting reports of worsening the PANS.

 

About 2 years ago we decided to put him on prophylactic zithromax 2-3 x per week because he was on antibiotics so much anyway for getting sick all the time. At that time the current doctor tested his vitamin D level and it was low at 21. He was given 50,000 iu D2 weekly for 8 weeks, then took 2,00 daily after that. He did so well in the months that followed; but I did not know if it was the zithromax or the vitamin D helping. However, later that fall (about 1 1/2 years ago) he began to have severe OCD and suicidal thinking. I took him off the zithromax as I did not feel it was helping. The current doctor treated his PANS, but she is not an expert per se.

 

He see sawed with his symptoms until March 2014 where he flared severely. Our doctor referred us to a doctor who does IVIG. At that time his total IgG was low in the 600 range but all other labs OK. His vitamin D was only 31 but I was told that was OK. He missed the last 5 weeks of 7th grade and was homebound all of last summer. He had 2 day IVIG in August of 2014. Only mild improvement but did go to school this past fall in 8th grade but still missed a lot with symptoms. He then got very bad again November 2014 and missed several more weeks of school. This whole time with the IVIG doc we were on augmentin 500mg bid. We kept waiting for the 6 month mark for the "cure" or complete remission. This past December he was OK off and on, but then right before new years, one morning he came down and announced he was better. And he was. For 2 1/2 months (Jan and Feb 2015).

 

But then, all of a sudden, this past March he flared and he went severe within about 4-5 hours and was homebound again. This lasted about 1 1/2 weeks, then he all of a sudden was better for about 5 days. By this time we found a rheumatologist who agreed to treat him in case he needed IVIG again, as the doc who did the first one was out of network for us. About 3 weeks ago the symptoms returned, again very abruptly. I called the rheumatologist and she ordered a steroid taper. He took that for 9 days. About 10 hours after the first dose he was symptom free. This was amazing, as this whole last year our ds flares not only had severe OCD and tics but also hallucinations and severe age regression where he acts and talks like a preschooler. He really does look like he has a form of mental retardation when it is happening, and all it took was for one dose of steroid to make him better.

 

Of course he was worsening at the end of the taper so we asked for more steroids and were given a one month supply to take 10mg per day. This past week we were told IVIG is needed but we did not yet try to set it up. Currently his IgG is in the 500 range (about 572) which is slightly low. The doc wanted ds to get down to 5mg per day of steroid so we attempted that- but yesterday after the 5mg dose he seemed fine but by evening he became severe and flared again. When this happened I was not at home, my husband gave my son the higher dose at 30mg last night (I was out at the grocery store and I did not have my phone so he could not call me).

 

This am all his symptoms are gone. But now, we are in SOS mode, because we gave him a higher dose and now I don't know if I need to taper it and the office is not open. i am thinking we could give him 10mg tonight and keep him on that. This is so very hard- to see your child be "gone" and come back so quickly, knowing it is temporary. In addition, he has a bad smell that I notice from his sinuses. Our family doc ordered a sinus CT and it showed "chronic allergic changes" so I am concerned about a sinus condition that is triggering this.

 

Any help and advice is so appreciated. I feel bad that he had the higher dose of steroid last night as it was not ordered by the doc, but he is better today.

[SSS]

What infection testing has been done? Have you checked for Myco P?

 

And I read your whole story, and kept thinking: Lyme Disease.

 

Just a hunch, but PANDAS/PANS kids need an Igenex Western Blot test. Otherwise, underlying infections weaken the immune system, and relapse often occurs.

My .02 cents, but you don't talk about actual infections... also viral titers should be done, too.

[reactive]

I don't know if I am replying correctly. So I am trying this.

We had a workup with the doctor that did the initial IVIG; he did standard Western Blot and Lyme was negative.

He also did a bunch of other labs, like EBV, cocksackie, mycoplasma. He uses the protocol Dr. K in chicago uses he said.

I am aware of the Igenex testing. I have avoided it thus far due to the long history of recurrent strep in me, my ds and my younger ds.

But truth is, since younger ds had tonsils out 4 years ago, we have not had any documented strep in the home.

Probably time to do the Igenex to be sure, but none of our current docs are on board.

I will say, ds is always bad in March and with allergies. He was so good Jan and Feb and when snow melted here in Ohio is when he tanked.

It is so hard to see a high functioning 14 year old flare and within a few hours be "gone" and even harder to see him take steroids and 10-12 hours later be almost symptom free.

Edited April 12, 2015 by reactive

[rowingmom]

I would agree with SSS. You need to investigate lyme as well as the common co-infections of bartonella, babesia, mycoplasma etc.

 

Lyme and especially bart and babs can be immune suppressive, so you end up with a child that gets recurrent infections. Does your doctor know to look for the lyme-specific bands on the WB? If the bands are present (even at the IND level), there is only one bacteria that can cause the reaction - lyme.

 

Be aware that if the immune system is being supressed, antibody tests may not be the best tests to use, and may return weakly or negative.

 

If you are fairly sure your child doesn't have strep, it's time to look elsewhere.

[reactive]

I think it is time to get IGENEX. Not sure how long it will take to get into a doctor. Have to find one. And he is sick now- only doing OK today because of his steroids on board. But he cannot stay on those. Rheum doc wants him to have IVIG next. Not sure how that will pan out if he is positive for anything on IGENEX. I do have the copy of the traditional WB test and he was negative for all bands listed on the report.

 

My opinion: he either has a positive that will show up on IGENEX or there is something wrong with the sinuses even though CT neg for infection- there is a chronic allergic sinus issue I was reading about. So...if there is still a trigger it seems like IVIG could only be temporary like it was before. Plus- with the last IVIG he was the lucky 1/100 who get aseptic meningitis. And that was awful.

 

I even thought of calling Dr. B in CT to see if he could see him and consult on his case- since ds has so many allergies and the sinus smell. Not sure if he takes new patients or what is wait time is to be seen.

Edited April 12, 2015 by reactive

[SSS]

From what I hear, Dr. B is the man for sinus. And of course, PANDAS/PANS treatment.

He runs Igenex testing. If you can get there, I'd call.

 

Hang in there. And I agree, the up/ down, back and forth is the very hardest part.

[nicklemama]

Its time for Igenex, I agree. My son was treated by Dr. K twice with IVIG. The protocol did not work because we found lyme disease in my son. The proper lyme treatment has my son functioning very well with only minor flares.

[rowingmom]

Keep in mind that the common coinfections can be stand alone illnesses.

 

Lyme doesn't need to be present for babesia, bartonella, ehrlichia, anaplasma or the others to be the cause of infection and PANS symptoms. They all need to be either tested for or clinically assessed for symptoms.

Edited April 12, 2015 by rowingmom

[reactive]

Thank you so much to everyone. I am so sad for him. It is so hard. He could tell his flare was happening this last time, and it was so sudden, and we watched him go away from us as he grabbed me and sobbed. Then he was happy hyper and baby talking. It was so bizarre.

 

If he has a + IGENEX, I will need to have my younger son and myself tested.

 

I want to have him see Dr. B, I don't care how far I need to travel, I hope he is taking patients and it is not too long of a wait if he is. I think it is the best fit with the need for IGENEX and the sinus issue and many allergies.

[sf_mom]

Does your son have chronic sinus issues? You mention CT scan negative for infection. You might consider doing a nasal swab for infection plus Shoemaker Panel especially looking at MSH level. Low MSH will open door for chronic infection in sinuses.

 

Here is some great information on Lyme and Mold and how it can drive down those levels.

 

http://betterhealthguy.com/biotoxin-illness-conference-2011

 

I agree with everyone else that Lyme and co-infections should be tested as soon as possible. I great antibiotic combination as a trail would be azithro and augmentin together. Is it possible to get your Dr. to also prescribe Azithro 500 m.g. daily. You might see immediate improvement and then herx within 48 to 72 hours (worsening of symptoms) that eventually improves. It is a little test in advance of testing for Lyme and co-infections that might provide insight and be helpful until you can get to a Dr. for testing.

Edited April 13, 2015 by sf_mom

[reactive]

I do not know what MSH level is, or Shoemaker panel. I can look into that.

He had a bad smell from his nose- could smell it when in car with him. Our PCP agreed to sinus CT, diflucan 100mg daily for 14 days and the CT showed "chronic allergic changes"

I have researched what that means, and I think he may have a condition called "chronic hyperplastic eosinphilic allergic sinusitis" just what I think. It would fit with his low IgG and low vitamin D and so many allergies.

I made an appointment with LLMD today but that is not until June 1. He needs IVIG again, not sure which will happen first but I was hoping to get the IGENEX done before IVIG.

He is now on long term steroid 10mg daily. We will see if that keeps him stable for now or not. I want him to finish out the school year and if he had no steroids I think he would be home bound.

I made an ENT appt for next Wednesday- see if they can scope the sinus to see if anything and look for fungus.

He has been on 500mg twice daily of augmentin since last June 1

Not sure about adding the zithomax. Not sure who would do it. We seen rheumatologist this Wednesday. But none of our current doctors do IGENEX testing. The doctor who did our IVIG in August does not believe in testing vitamin D levels either, but the rheumatogist agreed to.

His neurologist might do it, but we have not seen her since late last May 2014...not sure how long to get in to see her. I could ask?