New PANDA Parent. Many Questions

[Broo100]

Hi everyone, I am so happy to have found this board! Maybe you can help me with some of my questions. My normally very happy and relaxed 10 yo son started developing strong (and loud tics), anxious behavior and distraction at school this last September. His GP took a strep test and it came positive and put him on Augmentin. She referred me to a specialist who took a blood test and concluded that he not only had strep but also a very elevated count of Mycoplasma. He was put on 2 different antibiotics and is now on prophylactic Augmentin. His behavior has normalized except for the tics which, although very improved, are still there. When he is having a bad day I give him Motrin and they go away. These are my questions. Are there any natural anti inflammatories that will not affect his liver or stomach as Motrin would? Should all this PANDAS go away when he hits puberty? Can I expect this symptoms to wax and wane or should I be prepared for them to get a lot worse? Have people who have done steroids gotten lasting results? How about IVig? Finally, I have also been given my son Magnesium. He seems is a skinny kid but seems to have gained weight. Could it be the antibiotics? I am new at this and, while I am alarmed I am so pleased that he is doing so much better than he was. I know, a lot of questions. Any help or insight hugely appreciated about any of them. Thank you

[MomWithOCDSon]

Are there any natural anti inflammatories that will not affect his liver or stomach as Motrin would?

 

Many of us use a variety of supplements such as D3, quercitin, curcumin and/or tumeric as anti-inflammatories, though, when things are really tough, ibuprofen can be hard to beat. In our experience, the supplements are more of a long-term strategy, with a more gradual impact but one that can sustain so long as you maintain the regimen.

 

Should all this PANDAS go away when he hits puberty?

 

I think the jury's still out on that one. Some kids seem to more or less "outgrow" their PANDAS symptoms by puberty, others do not. In our case, my DS's most dramatic PANDAS didn't even show up until puberty, which is ongoing even as we speak. But like yours, he is much improved following abx treatment, and we keep the supplements going even now, 3 years later.

 

Can I expect this symptoms to wax and wane or should I be prepared for them to get a lot worse?

 

Anecdotally, many of us do see "wax and wane" but not, as some docs would have you believe when it comes to tics or OCD, at random. When my DS waxes, he's been exposed to strep, or he's coming down with a virus of his own that's triggering his immune system. Or allergy season comes upon us.

 

Have people who have done steroids gotten lasting results? How about IVig?

 

Some have, yes. Others return to steroid courses when another exacerbation hits and therefore arrest the symptoms more quickly or altogether. IVIG is a home-run for some folks, and less so for others. Some with documented immune deficiencies have a series of IVIG treatments to help support and hopefully reset the immune system. No one's sure yet why IVIG is more successful for some and less so for others.

 

Finally, I have also been given my son Magnesium. He seems is a skinny kid but seems to have gained weight. Could it be the antibiotics? I am new at this and, while I am alarmed I am so pleased that he is doing so much better than he was.

 

Never heard of magnesium causing weight gain, or antibiotics. Is he taking anything else? It is possible that 1) without all the anxiety and pervasive tics, he's more relaxed and thus he's not burning as many calories as he was before treatment, and/or 2) he's just reaching a growth spurt that's temporarily taking him "out" rather than "up." My son grows like a fir tree: out, then up, then out again, then up!

 

Sorry your family is now faced with PANDAS, but glad that you've successfully gotten treatment and that you've found this forum for support. Hope some of my answers help. Take care!

[kos_mom]

Nancy has given great answers. Re; antibiotics and weight gain. I recall Dr. T saying on one of his radio programs that there hasn't been a lot of research on the effects of long-term antibiotics and he ventured that perhaps weight gain could be one of them. I don't think, however, this would apply to a couple of months of abx use--I think he was thinking more in terms of years.

 

Another natural remedy some use is olive leaf extract. it is said to have anti-bacterial and anti-viral properties.

[dcmom]

Welcome, and sorry you are here at the same time.

 

I have two pandas daughters who had onset and were diagnosed about 3.5 years ago after a bout of strep throat.

 

I am so glad that your son has responded to treatment! From what we have seen, it can take longer for some "issues" to resolve than others. My kids don't have tics, we have ocd with emotional lability, temper tantrums, sometimes cognitive issues, sleeping issues, etc. They have both responded very well to treatment- however we do see some symptoms taking longer to resolve. I will try to give you advice, based on our experience.

 

We treat our kids as "normal" kids. We (now) try very, very hard not to accommodate any of their "pandas behaviors" or fall into bad patterns. We are very careful about maintaining "age appropriate expectations"- which in our experience can fall by the wayside during an exacerbation. We are very honest with them about this.

 

We try to be very in touch with their "baseline" personality (which is basically, easy, wonderful and sweet- very little drama). When we start to see some minor issues (ocd or emotional, or defiance) we know somehow pandas has been triggered (usually illness, or exposure to illness). At that point they are given a z pack along with 5 to 7 days of regular advil dosing, along with melatonin at night to promote sleep. Many times, this is enough. If this is not enough, we proceed to a steroid taper, long enough to arrest symptoms (usually 10 to 30 days, depending). That has been really, really successful for us.

 

There have been a couple times the above protocol was not enough. At initial onset for each, they did not get steroids for a couple of months in, and pandas had really spiralled out of control- we used pex then, very successful.

 

More recently both had strep throat, so we did a round of IV steroids.

 

We do not do any supplements regularly. We give probiotics during antibiotic use. This has worked for us, my kids are flourishing- many on here find they like supplements, daily probiotics, and daily antibiotics. It depends on what your child needs. I have become very concerned about unintended consequences of med and supplements, so we do this bare bones approach since they are well.

 

We do not go to ANY extreme measures to prevent illness. When your kids have ocd, you have to be careful about this. What we do instead, is make sure we have a plan, and access to meds and doctors to manage the pandas when it happens.

 

I do kinda feel like the first year was really tough, things have gotten better. It definitely takes time for the immune system to calm down and the brain to heal fully.

 

When my kids are coming out of an exacerbation, as long as we are seeing improvement week over week- we stay the course- do nothing extreme. If your son is pretty much back to himself, minus some ticcing that has improved. I think I would want to stay the course, give it a month, see where you are then. We also see sawtoothed healing (good days, followed by a bad day), but if we look at it week by week, we can see the healing more clearly.

 

I highly recommend having AT LEAST one pandas specialist on your team (this means a doc willing to prescribe antibiotics, steroids and pex or ivig).

 

Good luck- hope this is coherent...

[Broo100]

I cannot thank you enough for these answers. I do have a Pandas specialist that I love but there is no substitute for personal experiences. I also forgot to mention that I am riddled with strep myself and that my brother, as a kid, was a Tic mess which he outgrew in college. I would bet money that he had Pandas too.

[Broo100]

One more question. Are there any dangers of IVig? i.e. tainted plasma?

[kos_mom]

An extremely small percentage of those who get IVIG may get aseptic (nonbacterial) meningitis. I monitor this board and other places a lot and absolutely the only Pandas child I know who has had this happen is my own. What I learned from this experience is that although it sounds very scary, medically aseptic meningitis is not considered a big deal as it is self-resolving.

[WorriedDADNMOM]

Broo, I have two dd's that have Pandas/Pans. One slow gradual onset and one very sudden.

 

In addition, they both have a diagnosis of Pyrrole disorder. We struggled with docs early on, so you are one step ahead. We chose the whole natural path for fears of the SSRI's and lack of any doc to really treat it to get our kiddos well. Kinda just fell into it with a DAN/Integrative Ped.

 

We do many supplements for the below plan:

1) Debulk infection.....for us, 10day azithro multiple times followed by a couple 30day azithro.

2) Eliminate triggers, allow immune system to "chill out" This could be food allergies (ie Milk for us) pet dander and infections----thus longer term abx.

3) Control inflammation.

4) Rebuild immune function.

5) Xclear Nasal spray for it's antimicrobial properties to help prevent colds and clear nasal passages to prevent sinus issues. Allergies and sinus issues is part of many Pandas kids.

 

We do just about every vitamin:

 

Vitamin d for deficiency.

Calcium/magnesium

Vit c and Zinc for sick protocol

Cod Liver Oil for anti-inflammatory and Omegas

Enhansa (curcumin) for anti inflammatory properties.

Primrose oil for omegas

Probiotics and Trufibre for good Intestinal function.Probiotics esp during abx.

Lauricidin as an antiviral---monolaurin I think is what it is.

 

Everyone of us have different experience. I think for most parents though, antibiotics has been the best thing initially. Then, for us, future health since our kiddos are 9,8 and 6.5 was a key goal. Thus all the supplements and vitamins and minerals. I will say for me being 40+ and having my first bout with infectious arthritis, curcumin(off brand) and just fish oil have helped me feel much better. For us, it has been costly, but worth it.

 

If you have any questions, let me know.

[SurfMom]

We are in the second exacerbation with DD15 who had her first outbreak at the end of October.

 

Anticipating the possibility of another outbreak, we decided to start assimilating our team early. We found a general practitioner who was PANDAS literate, got referrals for a local neurologist, started the intake process with Dr. M at Rothman in St. Petersburg (our closest expert) and a psychiatrist who could help with cognitive behavioral therapy (CBT) if the tics held on. I also gave the school a heads up that we might need to pursue a homebound program and need of a 504 plan (a plan for accommodations that could be triggered in a much shorter time frame than an IEP.

 

When she started the second, we pulled the trigger on each one of the above. We feel like we were way ahead of the game with a better-safe-than-sorry plan, especially at Rothman and our pediatric neurologist which can take some time.

 

As a result we feel like we have a great support system that has helped us with countless questions and needs, and alleviated the parental stress that has come alongside managing health, school and family pressures.

[Pandasphilly]

Hi everyone, I am so happy to have found this board! Maybe you can help me with some of my questions. My normally very happy and relaxed 10 yo son started developing strong (and loud tics), anxious behavior and distraction at school this last September. His GP took a strep test and it came positive and put him on Augmentin. She referred me to a specialist who took a blood test and concluded that he not only had strep but also a very elevated count of Mycoplasma. He was put on 2 different antibiotics and is now on prophylactic Augmentin. His behavior has normalized except for the tics which, although very improved, are still there. When he is having a bad day I give him Motrin and they go away. These are my questions. Are there any natural anti inflammatories that will not affect his liver or stomach as Motrin would? Should all this PANDAS go away when he hits puberty? Can I expect this symptoms to wax and wane or should I be prepared for them to get a lot worse? Have people who have done steroids gotten lasting results? How about IVig? Finally, I have also been given my son Magnesium. He seems is a skinny kid but seems to have gained weight. Could it be the antibiotics? I am new at this and, while I am alarmed I am so pleased that he is doing so much better than he was. I know, a lot of questions. Any help or insight hugely appreciated about any of them. Thank you

[Pandasphilly]

Yes we are experiencing a steady weight gain. Started about 3 months after high dose antibiotic regime was started. Doesn't happen in most kids that ive heard but pretty severe in my ds10. We are adding digestive enzymes, nystatin, plus doing culturelle and florastor, plus a lot more gut supplements. Doctors believe it goes back to the theory of fattening up animals on a farm with antibiotics. Changes the gut biodome. My son cannot be without augmentin xr or all symptoms return. Even with one missed dose. We now have to eat carefully and excercise more.

[MomWithOCDSon]

Yes we are experiencing a steady weight gain. Started about 3 months after high dose antibiotic regime was started. Doesn't happen in most kids that ive heard but pretty severe in my ds10. We are adding digestive enzymes, nystatin, plus doing culturelle and florastor, plus a lot more gut supplements. Doctors believe it goes back to the theory of fattening up animals on a farm with antibiotics. Changes the gut biodome. My son cannot be without augmentin xr or all symptoms return. Even with one missed dose. We now have to eat carefully and excercise more.

 

I find this really interesting; I'd never thought of it, but it makes sense, the whole gut biodome thing, etc.

 

My DS was on Augmentin XR for 2 years and he did go through a slightly "pudgy" phase. However, he hasn't been "skinny" or "slight" since he was 6 or 7, and I attributed his weight gain to 1) the low-dose SSRI he began taking, 2) feeling less anxious and "riled up," and therefore likely burning fewer calories in nervous energy, and 3) natural growth patterns. He's definitely slimmed down in the year since we ceased with the Augmentin but, again, I sort of attributed that to a natural growth pattern.

 

We still do probiotics, but not at the levels we did when he was taking the abx.

 

Just as an aside, our DS would slide back every time we tried taking him off the XR also. We finally just decided to stick with it for a longer term; in the back of my mind, I kept going back to Sammy Maloney's XR time-frame, which was a couple of years. After about 20 months, we started weaning down very slowly, instead of taking him off cold turkey. There were times when we thought we would see a little behavioral backslide, but he finally seemed to be able to recover on his own after a few days, without our increasing the dose again. He took his last reduced dose about 4 months after we started the weaning, and he's been off ever since (knock on wood!). Now we dose olive leaf twice daily. In the year since he's been abx-free, he's had two cold viruses, and they encouraged some extra OCD behaviors, but between the olive leaf and ERP, he's been able to beat them back and maintain pretty well. Good luck to you!

[tpotter]

I cannot thank you enough for these answers. I do have a Pandas specialist that I love but there is no substitute for personal experiences. I also forgot to mention that I am riddled with strep myself and that my brother, as a kid, was a Tic mess which he outgrew in college. I would bet money that he had Pandas too.

 

 

I think this may be your clue. If you have strep (or are a "strep carrier", which means you actually have a chronic strep) you are probably continuing to keep your DS in "sick mode." It's really important to make certain that you get everyone in your family diagnosed and treated for everything, possible. In other words, if your DS has mycoP and strep, I would start with those.

 

My younger son is very much aware when he has been exposed to something. There are a lot of kids at his school, unknowingly, ill, and he can always tell me when one of them (by name) "is sick" (he feels it affecting him, and he notices their behavior changing.) Also, when DS20 came home from college last week for the holidays, DS17 told me that his brother was sick, because "I can feel it." He was right. Within just a few days, DS20 announced that he was having really bad OCD again (didn't help that he had stopped taking all his meds and supplements for the last month!)

 

I am telling you all this to explain why it is so important to make certain that you get all the sickness around him taken care of. Also, make absolutely certain that you are treating prophelactically for yeast. We have been giving our children sacchromyces boullardi for years now (ever since starting all the abx), and we also give them an additional probiotic (make sure there's no "strep" or "s" listed in the ingredients.) It may be yeast that's making him look like he's gaining weight, because he could be retaining fluid. Also, yeast will prevent him from getting well.

 

Good luck, and I've very glad you found this board.

[msimon3]

Regarding IVIG, using donor blood products and risk of anaphylactic shock are risks you should consider even though it is generally considered to be safe.

 

While you had a positive test for strep and Myco P, you should also rule out tick-borne disease (Lyme disease and its coinfections) as it can have neurological symptoms such as tics and OCD as well.