PANS/PANDAS-Feeling Lost!

[MOM2AMAZ2BOYS]

Hi. I'm new to this PANS/PANDAS and I'm feeling lost and confused. I'm reading through all the forums and I feel like I just have no idea what I am doing. I am so informed, yet I feel like I am not helping my son at all. Here is his story. Any input or advice on any of these questions would be helpful.

 

My son started with a hard eye blink when he was 2. This lasted on and off for 4 months. For 2 and a half years, he had absolutly nothing. We took him to a neuro, who said transient tics and that was what we left with. We just monitored him. That was it. We always new the possibility of a new tic could come, but you can imagine after so long, we kind of just thought and hoped that was it.

 

Flash forward to tis May, right before his 5th birthday. One day his father went outside to take out garbage, and didn't say anything because his 10 year old brother was sitting next to him playing. When dad came in, he was hysterical at the door screaming. We thought this was a one time deal, and that we just gave him a scare. Then, on the baseball field a week later, I had to run my older son to the bathroom, was gone a few minutes, and he was again upset on the field. Prior to this, in the house, he felt the need to be in the same room, follow his grandmother or me around, and would say "I love you." Every few minutes. We didn't realize at the time that this isn't really normal. Right around this time, he started with a neck jerk tic, and that seems to have been with us this whole time, except the few days when he was on azith 5 day pack, then it came right back. Within a week he had multiple tics, the neck jerk, eye blinks, eye rolls, facial grimace. The neuro thought this could be PANDAS and sent us for bloodwork. Strep and myco were high. Lyme only band 41, so it was negative for Lyme. Thats when we did a culture, positive for strep, and went on the 5 day zpack. In 3 days he was better and 2 days after the meds he was 100%. Then it slowly crept back in, and 3 days later with a throat clear, which just lasted a few days.

 

Trying to make this short. We are now seeing Dr. T. The first neuro said this is not the usual course for TS, and he thought PANDAS, so we wanted to see the expert. Dr. T gave him Azith, and by day 14 he was no better, even worse. (He was getting better right before this. Just the neck jerk and not too bad or too often.) So Dr. T switched to Omnicef with an antiviral, in case he was in a flare. We are on Day 3 of this, and yesterday I wanted to cry. His neck jerks are harder now, and look like the even hurt, and he started the eye blinking which I have not seen since early June. So here all my questions. Feel free to chime in with comments or suggestions for me.

 

1) If this is PANS, which Dr.T says it probably is, then why is it PANS and not PANDAS? He had a positive culture and titers. He did the other bloodwork, and he thinks his immune system is functioning good, the only thing he found was SADNI due to a poor response to some of the serotypes in the Pneumoccoccal vaccine.

 

2) Why do the antibiotics seem to make him worse? I was wondering about the dye in the azith. The omnicef and antiviral have no color. Although he has been eating everything with dye for two and a half years with no issues. I read about the die-off or yeast but how do you know? And what do I do on my own about this since Dr. T has not mentioned this.

 

3) We have been on the probiotic twice a day, Culturelle as recommended by Dr. T. Have heard this can increase Tics, but what to do when he isn on these antibiotics and had some stomach troubles in the beginning?

 

3) Dr. T is very hard to reach when you need him. We called on a Monday to tell him azith was worsening things, and we just wanted a response via office staff. We called him each day until Thurday night to get a response, and thats when we switched to Omnicef. I'm not sure how we can help our sons with such limited access to his doctor. Are there any doctors in NJ that I could see for this. His pediatricians are useless, as they don't believe. I like Dr. T and would like to remain his patient, but I'm concerned about the lack of access.

 

 

 

[rowingmom]

DD13's PANS was caused by bartonella infection, and one of her earlier symptoms was recurrent strep infection. PANS/PANDAS doctors are not very cognizant of the effects of lyme and the coinfections. If you are not seeing a good response with one of these doctors, I would look for an ILADS LLMD or LLND in your area.

 

Unless Dr T has run a lot of immune function testing, I don't think he can say that your DS's immune system is fine. The coinfections effect different components of immune response which I believe can not be assessed through Pneumoccoccal vaccine serotyping.

 

Antibiotics are making his symptoms worse because they are causing die-off of gram negative bacteria and release of their endotoxins. These endotoxins (and the inflammatory cytokines that are produced by the body in response to them) are the cause of his primary symptoms. Antibiotics just produce more die-off and toxin release than his immune system was capable of.

 

You have to use probiotics. Culturelle is a good one, but the gut contains thousands of species, and replacing 1 species won't help much. A main portion of the immune system is housed in the gut and is the result of a properly functioning beneficial microbiota. We rotate Align, Culturelle and ReNew Life Ultimate flora. As well as consuming fermented vegetables on an almost daily basis.

[MOM2AMAZ2BOYS]

Thank you for your response. There are so many tests that were run, I'm not sure which are related to the immune response. Dr. T did go over the results, and when I got home, I was confused as to which ones were related to immune function. It was very overwhelming. But when he was going over it with us, he mentioned each test and that they were good results. Except for the Pneumoccoccal Vaccine ones.

[pr40]

if zpack helped, it is likely that antinflammatories should help, too Try ibuprofen if you haven't already

in general, besides abx, you may want to have a strategy to reduce inflammation Usually fish oil (purified of mercury), olive leaf, etc

diet changes as well

good luck

[MOM2AMAZ2BOYS]

I did try ibuprofen for a week 2x day but it didn't seem to help. He wasn't too bad although he still had the neck tic, but not bad. But it didn't seem to make a difference. I aske Dr. T if that was indicative that this wasn't PANS/PANDAS, he said no.

 

I'm so nervous about the fish oil since I have read posts about increase in tics. I did by one with a high ratio of EPA vs DHA as recommended but i never used it because of the fear of tic increase. Is the olive leaf oil safe for use with antibiotics? How much do you give? Where to buy?

[dcmom]

hi Mom2boys- I am sending you a PM

[lbee]

When my daughter started abx, her tics would flare DRAMATICALLY almost exactly 1 hour after each dose. I was going crazy. I nearly stopped the abx. I was told to stay the course and that this was die off which should subside within a couple weeks.
Eventually it all calmed down. At the time we thought we were dealing only with strep. Docs up here in Canada won't really run anything else for you. Our first abx was Amoxicillan for 10 days then we started Augmentin and we've been on that since.

At the beginning I was told by other moms that the 'herxing' could be even worse with Azithro. I don't know if that's true or not first hand.

Since we started our DD has improved. But mild tics still remain. It turns out we have Bartonella as well. I'm going to run Igenex to see if we have anything else.

As per rowingmom's advice we are starting to rotate the probiotics. We use olive leaf, mag glycinate without any issue. We just added EFA about 2 weeks ago and I haven't noticed any increase.

[mama2alex]

I'm sorry you're feeling lost and confused - I think that's how all of us felt at the beginning of this, so know that you're not alone or different. As you learn more, get more information and see some progress, you'll start to feel more in control.

 

I think it was misleading of Dr. T to tell you your son's immune system is functioning well. If he has PANDAS/PANS and specific antibody deficiency, then by definition his immune system is not functioning normally.

 

Many things can contribute to this, including any number of chronic infections. But there can also be vitamin/mineral deficiencies, food allergies, methylation issues, heavy metal toxicity, and mold toxicity. We've had to address all of the above to get our son better.

 

If a neurologist ran a Lyme test, he/she most likely did not run the best lab test (they are generally not well educated or experienced with Lyme), and it looks like they didn't run all the necessary tests for co-infections. Lyme tests are notorious for false-negative results, but if you run it through Igenex Lab, you have a better chance of an accurate result because they test for more Lyme-specific bands than the other labs. Also, you need to run tests for Bartonella, Babesia, Erlichia and a few others. I would get a second opinion from a Lyme-literate doctor (Dr. T is not Lyme-literate), as many kids with PANDAS/PANS have turned out to have Lyme. If you are in/near New Jersey, you should have no problem finding a good Lyme doctor to run these tests and do a full evaluation. Many of them have seen a number of PANDAS/PANS kids, so they will understand what you are dealing with.

[MOM2AMAZ2BOYS]

Thank you for all your replies. I'm seriously considering the Igeneix Lyme testing for that and coinfections. If we're missing something here, then we are just going to prolong my poor son's agony. Anyone know of a good Lyme doctor in northern jersey?

 

Also, should we be seeing an immunologist?

 

As far as the olive leaf for inflammation...how much do you give?

[valsmom]

You mentioned that Mycoplasma was high. It can take s long time on antibiotics to clear that as it is a big PANS trigger. We were for a 30 days on very strong antibiotics Biaxin and my Dd's igm numbers went down only 40 points. What was your son's myco igm?

[mmiglio]

 

As per rowingmom's advice we are starting to rotate the probiotics. We use olive leaf, mag glycinate without any issue. We just added EFA about 2 weeks ago and I haven't noticed any increase.

 

How much and which brand of olive leaf do you use? Are you using it for inflammation?

[lbee]

I'm sure there are lots of different OLE. But we use this one

http://www.vitepro.ca/Olea-Europaea-42-fl-oz-125-ml.html

 

1.25ml per day for maintenance or 1.25ml 3x/day in the case of a cold or flu.

 

I haven't given more than 1.25ml yet.

[mama2alex]

Mom2amaz2boys,

 

You should create a separate post asking for doctor recommendations in NJ. Otherwise most don't know you're asking for this. Also, I believe LLM has a good one in that area, so you could PM her. As for an immunologist, I would wait until you've seen the Lyme doctor and see what comes of that. Lyme doctors see immune issues all the time - that's the nature of the illness.

[pr40]

I did try ibuprofen for a week 2x day but it didn't seem to help. He wasn't too bad although he still had the neck tic, but not bad. But it didn't seem to make a difference. I aske Dr. T if that was indicative that this wasn't PANS/PANDAS, he said no.

 

I'm so nervous about the fish oil since I have read posts about increase in tics. I did by one with a high ratio of EPA vs DHA as recommended but i never used it because of the fear of tic increase. Is the olive leaf oil safe for use with antibiotics? How much do you give? Where to buy?

we use purtian's pride

one pill of each olive leaf, fish oil, and enzyme CoQ 10

I am sorry but I don't know anything about fish oil increasing tics, or about olive leaf and abx

[MOM2AMAZ2BOYS]

I just wanted to thank everyone for their replies. Your support and advice is helping so much.

 

valsmom his myco IgG was 220 in June and flagged as high. His myco IgM was 770, just in the low positive range. The strep was 550.

 

mama2alex thanks i will take your advice about the separate board.