LOTS of questions

[JenniferG]

My pharmacist called me. Very concerned about my children's ABX. Wanted to be educated on PANDAS. Understands the issue, but is still very concerned about long term use and resistance. Especially at 4 years old. Saw GI today, suggested 2 nd opinion. DS 4 belly very irritated from ABX. Prevacid not working, losing weight....he only weighs 34lbs. Pedi understands CVID and PANDAS...saw him again this week, he also suggested 2 nd opinion.

 

We have seen a CT Imunologist and a NJ MD. contacted a DO in CT today and their first appt is August!

 

I'm in tears...

Edited January 31, 2012 by JenniferG

[oivay]

We also had a pharmacy tech ask my daughter "You look like normal healthy child. Why you need so much zithromax?" At the time, we were filling a prescription for 60 zithro 250s.

Daughter answered "I have this problem with strep in my brain." Oi vay............

 

As far as long term abx use, I was on long term abx as a child for vesicouretal reflux. I had surgery, which helped tremendously, but wasn't completely effective. I had the same surgery again at 26, which again helped until I got pregnant.

I was on abx pretty much from the time post-op (at age 7) until college, and then sometimes afterward. The abx I got were furadantin, Septra, and ultimately Keflex. (There were a few more in between, but these are the ones that worked.) As I had suffered two bouts of acute pyelonephritis, prophylactic abx seemed like a reasonable thing to do, and was/is an accepted practice.

 

I never had any problems with them, and even now (at 45), my doctors have never hesitated to give me multiple refills for abx, which makes the reluctance to prescribe abx for Pandas especially puzzling to me.

[MomtoJake]

Hang in there! First, have they tried a different ABX? Sometimes one can cause stomach issues and others may not. Secondly, you may want to look into the use of a daily probiotic-this really has helped my son. My DS is 6 and at start of ABX in Sept weighed only 36 pounds. We stuck with the ABX and gave daily probiotics and he ended up gaining two pounds in one month, which is unheard of for him! While the thought of longterm ABX can be concerning, more concerning for me was the thought that my son's infection was causing inflammation in his brain- we had chorea, debilitating OCD, tics and more. Now he is in a much better place and ABX is one of the big reasons. After 4 months we are now off ABX for the time being but will go back on if we have to. Again, hang in there, this is tough and it is a "long haul" type of thing for most. Hugs.

[JenniferG]

Hang in there! First, have they tried a different ABX? Sometimes one can cause stomach issues and others may not. Secondly, you may want to look into the use of a daily probiotic-this really has helped my son. My DS is 6 and at start of ABX in Sept weighed only 36 pounds. We stuck with the ABX and gave daily probiotics and he ended up gaining two pounds in one month, which is unheard of for him! While the thought of longterm ABX can be concerning, more concerning for me was the thought that my son's infection was causing inflammation in his brain- we had chorea, debilitating OCD, tics and more. Now he is in a much better place and ABX is one of the big reasons. After 4 months we are now off ABX for the time being but will go back on if we have to. Again, hang in there, this is tough and it is a "long haul" type of thing for most. Hugs.

 

Thank you. We have tried a few. A while back they took Aug and we THOUGHT they were allergic. But this weekend they had the same "reaction" to Omnicef. And now we are wondering if the rash ismScarlet Fever or a strep rash. It was only their belly and back, and didn't itch. Hmmm. Pharmacist does not think it was an allergic reaction.

 

How much probiotics and what type do you use?

 

I called a DO here in CT, their first opening is August. And I think my Immunologist is getting to busy. My calls aren't being returned until I've called two, sometimes three times.

 

They stopped all meds on Friday to rest their bellies until we saw GI yesterday. They both have fevers and a sore throat this AM!

 

Here is the question, do I just restart ABX or get a throat culture? Because regardless they need the ABX. My dd8 is reacting to their infection.....

[LNN]

Take pictures of the rash if you can. Some infections cause a die-off that presents as a rash. My DD is genuinely allergic to the cillins (penicillin, amoxicillin, augmentin) and at least some of the close relatives - the cephalosporins (omnicef). She was on omnicef for 8 days in Oct and broke out head to toe in very itchy hives. But she has also broken out in rashes that were not hives or allergies - but rather from die off. So pictures are a good tool. Also, allergic reactions respond to antihistamines. So that may be worth a trial.

 

As for the DO - if it's who I think it is, ask to be put on a waiting list. If you can be flexible, you can probably get in much sooner by taking the next available appt. I would also call every few weeks to check in and stay on their radar. Not to be a pest, but to keep your name out front. IMO, he is worth the effort. And he is extremely willing to treat without abx (but also uses them if that's what you agree is best).

 

Can't advise you on restarting the abx. I would, but you should follow your instincts. If the bellies were still upset a few days after abx, then I'm not sure it's the abx causing it. Lots of probiotics options out there - depends on if your kids can swallow pills. if not, Vitamin Shoppe sells a berry flavored liquid probiotic - we'd add it to Splash Juice and it blended right in. They also sell a strawberry flavored one I'd mix in strawberry milk or a milk shake. if they can swallow pills or if you can open a pill and get it into them without them detecting the grit, Sacc Boulardis is good - it survives against abx. Or do a combo of Sac B and Theralac or Truflora or Florastar. We shoot for 30 billion CFUs but others use much more. It depends on budget and on how easily you can get the stuff into small bodies. Probiotics in general work best 2 hrs away from abx and if practical, close to bedtime when the stomach is going to be resting. Stomach acid will kill more of the probiotics. So don't give with a meal unless that's your only option.

 

You might also want to look into l-lysine as a supplement or increasing foods high in l-lysine. From Wikipedia

Lysine has a known anxiolytic action through its effects on serotonin receptors in the intestinal tract. One study on rats[32] showed that overstimulation of the 5-HT4 receptors in the gut are associated with anxiety-induced intestinal pathology. Lysine, acting as a serotonin antagonist and therefore reducing the overactivity of these receptors, reduced signs of anxiety and anxiety-induced diarrhea in the sample population. Another study showed that lysine deficiency leads to a pathological increase in serotonin in the amygdala, a brain structure that is involved in emotional regulation and the stress response.[33]

 

Human studies have also shown negative correlations between reduced lysine intake and anxiety. A population-based study in Syria included 93 families whose diet is primarily grain-based and therefore likely to be deficient in lysine. Fortification of grains with lysine was shown to reduce markers of anxiety, including cortisol levels, and also led to potentiation of benzodiazepine receptors (common targets of anxiolytic drugs such as Xanax and Ativan).[34]

 

There are lysine conjugates that show promise in the treatment of cancer, by causing cancerous cells to destroy themselves when the drug is combined with the use of phototherapy, while leaving non-cancerous cells unharmed.[35]

 

While chemically insignificant to lysine itself, it is worth noting that lysine is attached to dextroamphetamine to form the prodrug lisdexamfetamine (Vyvanse). In the gastrointestinal tract, the lysine molecule is cleaved from the dextroamphetamine, thereby making oral administration necessary.

 

According to animal studies, lysine deficiency causes immunodeficiency.[36] One cause of relative lysine deficiency is cystinuria, where there is impaired hepatic resorption of basic, or positively charged amino acids, including lysine. The accompanying urinary cysteine results because the same deficient amino acid transporter is normally present in the kidney as well.

 

As for risk of abx-resistance - IMO, it's real and a valid issue. But 80% of the antibiotics used in the US are given to livestock. Resistance is a big issue in nursing homes and hospitals. But I would not be swayed from treating my kids with something that had clear benefits. It is a balance to be sure. But I wouldn't let it keep me from using them if they're needed. You can also rotate abx every few months as an option. Herbal supplements with anti-bacterial properties are also out there, but may be harder to use with young children due to taste and would best be used under the guidance of someone who has experience with them.

[MomWithOCDSon]

We used antibiotics steadily for just over two years, and not only did not one pharmacist question it, but I had two pediatricians tell me repeatedly that there was no concern about the abx use. I'm sure there are many schools out there, and I'm sure, too (given the recently shared info on MRSA, etc.), that there is some potential for contributing to abx-resistant bacterial growth in the general population.

 

But isn't this the same "herd immunity" argument frequently made about vaccines? We should all treat our children the same, irrespective of their specific, individual needs, for the good of the whole? That's a very difficult argument to make to an invested, enlightened parent of a kid with issues, IMHO.

 

As a side note, we didn't have any issues . . . gut or otherwise . . . with the extended use of the abx after, I'd say, the first 6 weeks or so during which time I think we were getting the probiotic levels right and DS's system was adjusting to everything. In the end, we settled on about 180 billion units daily of mixed probiotics . . . lactobillus, sach b, bifo, etc. The key thing, I think, is to not rely upon acidolpholus (or the common probiotic in yogurt and kefir) for the probiotic load. Abx can kill acidolpholus fairly readily, so even spacing it out doesn't work optimally.

 

Good luck to you!