Constipation/Probiotics/Antibiotics/Time to Assess--Need Help

[MMWG]

Hi all-

I need some suggestions from those of you who will not be surprised with all of the issues we are trying to balance as we make strategic decisions about treatments going forward. I just need helping thinking through all these considerations.

 

In short--My son was diagnosed with PANDAS 4 years ago, and I would say at this point we have it relatively well managed. He is on preventative abx (cephalexin), and we homeschool--which I think may have been the single most helpful proactive strategy we have used to keep him well. Like many of our kids, he has anxiety issues as well as some adhd like issues, which are always present but significantly worse in exacerbation (and our clear sign of a reaction, along with joint pain). However, these days his reactions are fairly short lived--we up the abx, hunker down til he seems better, and go on with life. He is on medicine for his anxiety and adhd, which has been helpful and a good part of our plan.

 

He has always suffered chronic constipation issues, and after seeing a pediatric GI, is on a regular combination of Miralax and Ex-Lax, which seems to work relatively well. However, most days he has a seriously distended belly, and we can't help but notice a real connection between his constipation/stomach issues and his mood. The better his stomach acts, the better his mood and behavior are. Last spring we saw a psychiatrist who specializes in treating mood through strengthening stomach health---the idea that most of our immune system is contained in our gut. She gave us some suggestions for nutritional supplements that she has had success with, and we have that on our list of options (but I hate introducing MORE things for him to take). The idea of gastro-neuro connection is intriguing to me, and I know in my heart this is a key to helping him feel as well as he possibly can. I want to focus on strengthening his stomach health. I think it may be a key to his mood regulation.

 

Finally, this summer he had a bizarre bacterial infection in a wound in his leg (apparently from a cat bite? we had it cultured) and went on a nasty round of bactrim. it didn't cause a pandas reaction, but it didn't help his stomach at all, and the fact that he even contracted it scared me, as it tends to only be an issue for people with weakened immune systems--which i am guessing is due to the regular antibiotics he is on.

 

Okay, so--here are the decisions I am wrestling with:

 

1) Introducing probiotics. We are going on 2.5 yrs on regular antibiotics, and every time i see his poor distended gut, i wonder what else we could be doing to help it. I went to the natural pharmacy and they recommended their "best" probiotic, but the strep strain in it freaked me out, even after the rep on the phone assured me it was the kind of strep they use to create kefir and such, not the nasty kind. the person at the store was very helpful but he looked overwhelmed with all of the things we were dealing with and i left without anything at all. I just read a great article about probiotics that have helped with mood issues, which brought me back to the gastro-neuro connection. What probiotics would be helpful with constipation and also help counter the impact of all these antibiotics?

 

2) We are on the fence about staying on the preventative antibiotics. I begged for them in the beginning, and we have been strep free for 2.5 yrs. But since we homeschool, I am wondering what the risk/benefit analyses are on staying on them--especially if it is making him succeptable to other infections like the one he had this summer. He just turned 8, so there's a lot of years ahead. Has anyone gone off the abx? It scares me, but I also don't want to do more harm than good.

 

Sigh. This is probably too much for one post. Just not sure what to do. My pediatrician is wonderful, and we are managing the pandas together, but when i have asked about probiotics in the past he hasn't seemed particularly concerned or in favor.

 

If anyone has input, I would welcome it. Just trying to process.

[msimon3]

We had the same concerns with Strep and probiotics, but we found probiotics to be helpful during antibiotic treatments. We currently use Primal Defense for Kids which has no Streptococcus and tolerate it well:

http://www.gardenoflife.com/Products-for-Life/Digestive-Health/Primal-Defense-Kids.aspx

 

When you say 2.5 years of antibiotics, I assume you mean treatment full strength antibiotics rather than a prophylactic dose. We were in a similar position in the past, and currently work with a doctor who cycles treatments to avoid immune system suppression from long-term antibiotic use. So far we are impressed with this approach and think it is working better than continuous full-strength antibiotics. I can message you with the doctor's name if you are interested.

 

You might also want to consider that the PANDAS/PANS is really Lyme disease. You mentioned joint pain which is a symptom of Lyme disease and not usually associated with PANDAS. Neuropsychiatric symptoms like ADHD, anxiety, and OCD are also associated with Lyme disease, as are rashes (not just bullseye rashes), nerve/neurological dysfunction, weakness, swelling, movement disorders, flu-like symptoms, stiff neck. I would take your complete medical history, including all symptoms encountered, to an ILADS LLMD for a clinical assessment and follow up with testing from Igenex. If it is indeed Lyme disease, taking cephalexin is not likely to help much as it has been shown to be not very effective against Borrelia.

[SSS]

The distended belly, constipation, sounds like YEAST overgrowth to me- especially if you have not been vigilant about quality, high count probiotics to replace the good flora the daily antibiotics are wiping out- how's the diet, low sugar?

I have treated yeast numerous times in my dd, long before antibiotics came into the picture- I always see a correlation between large belly/ constipation/ bad behaviors, and yeast.

We had been off antibiotics for months, still gave quality probiotic (currently Custom Probiotics CP-1, no strep strain),

but had to do 20 day antibiotics when Impetigo came in-

anyway, after antibiotics, I started Diflucan (for yeast) and right away, calm, better behavior---

 

As for the rest, pp has a good point...

[SSS]

I'm not sure about d-lactate, honestly, but Custom Probiotics makes a d-lactate free probiotic

 

http://www.customprobiotics.com/custom-probiotics-d-lactate.htm

 

It is a powder- hard to mask the flavor if mixing- before dd swallowed capsules, I'd mix probiotics in stevia flavored coconut ice cream (only time she got it) when she was GF/CF.

[qannie47]

Hello, I have my Pandas child on a magnesium supplement, (recommended dosage). I recently discovered that it also aides constipation. Magnesium is also thought to have a calming effect on the brain....might help with anxiety?

[Hopeny]

I would avoid miralax which has some type if link to autism. I was going to ask you about Lyme as well , which could explain the joint pain, psych issues and stomach problems. Lyme symptoms wax and wane. Was the cat disease bartonella by any chance?

[ChrissyD]

My son too has lifelong constipation. He takes two antibiotics for strep induced PANDAS & Lyme.

 

Here's what currently works for him--

--High dose probiotics twice daily (non-strep strain we use is Custom probiotic 11 strain--have to order online

--saccharomyces boulardii twice daily --keeps candida/yeast under control

--prebiotics--currently using Biotagen by Klaire labs

---Mag Citrate--issuing 1/2 tsp daily of Natural Calm

--Mitochondrial support for his likely Mito dysfunction, which can affect GI motility--B vitamins, anti-oxidants, riboflavin, Coenzyme Q10 and L-carnitine

--we have him sit in bathroom Every night and try for 15 minutes. If he doesn't go we add a dose of lactulose (it's by prescription but safer than Miralax IMO and has benefit of drawing out ammonia if that's an issue). Haven't needed lactulose much at all

--also if yeast overgrowth happens, it worsens his constipation. Occasionally he needs a course of diflucan or nystatin to control it.

[MMWG]

Thanks everyone. I appreciate the feedback.

[LexMom]

We were at the GI recently and he recommended Florastor. He says it is one of the only probiotics that is backed by studies. It is expensive, but within a few days my son's diarrhea went away and his symptoms were better. Of course he is also taking an antibiotic, but I do think the Florastor has helped.