Two week observation after Augmentin

[momma2sethandjiji]

Hello,

 

My son is now on the first day of his two week observation period following 14 days of Augmentin and a five day steroid burst. Throughout the actual course of meds, he only got worse which some of you mentioned herxing in my last post. It makes complete sense, but would he still be herxing. I ask because on day one of observation, there is no improvement thus far, well actually worse. Is it the norm to see improvement if this is PANDAS since we are in the observation as ordered by Dr. K? I was thinking that was the purpose to further conclude PANDAS. He was repeat whispering more this morning than ever. The lack of improvement is so stress inducing. One thing I know is that whatever is happening to him is the direct result of sickness. Both of our episodes start up within the following week of a sickness. Are there any other type autoimmune disease that would induce the OCD? Following the first episode, again, he had more physical symptoms like leg pain, lethargy, darkness under eyes.

[momcap]

My son got WAY WAY worse on Augmentin. We moved on to Biaxin and that brought major improvements in OCD and behaviour, but worsening of physical symptoms like leg pain. Plain old amoxicillin helped him more than any other antibiotic.

[Agnes26]

My daughter improved significantly on the 14-day trial of Augmentin (no steriod burst), but the day after the "trial" ended she started a backslide of epic proportions because she was, of course, being exposed to strep at school. To this day, I still don't understand why she was given such a short course of abx (and a wimpy dose at that!) and then left unprotected for another infection. I'd say if the dose of Augmentin didn't work, ask for a higher dose, and if that still doesn't work, try something else and try it for at least 30 days. We've had great success with Augmentin 600 ES. DD, 7, has been on it for about 4 months.

[Hopeny]

momma2 sorry if you have posted already but I am wondering if your son was evaluated by a Lyme Literate doctor for Lyme & Co-infections, which are also PANS triggers? the reason I am asking this is because you mention leg pain, lethargy and eye circles which are all fairly common symptoms of Lyme. Steroids will actually make Lyme worse. Unfortunately my DD8 was given oral steriods for a serious of misdiagnosed ailments that turned out to be Lyme. I will give the quick history and symptoms she had as this might be helpful to you. My DD has Lyme & Co, elevated ASO titer and Myco P, MTHFR mutation 677T one copy. She was undiagnosed for 2+ years with Lyme, she never had a bullseye rash but did have patches of rashes. She also had a number of + strep cultures, with no sore throat, at the original presentation of Lyme symptoms and in the massive flare that led us to seek and finally find answers. She had/has sudden onset of arthritis like leg pain/joint pain (shoulders, hips etc), visual disturnances, stomach pain, headaches, dizziness/falling, suicidality, extreme mono like fatigue/lethargy, obsessive/repetative thoughts, compulsive skip picking - no tics. Initially amoxiciilin helped the symptoms abate, but then they came back with a venegance after the 28 days. We then tried high dose amoxicillin, she got worse and seemed to be developing psychosis, we gave her 5 days of Doxycycline that was incredibly helpful and then alternating courses of Augmentin/Biaxin and Doxy which have been incredibly helpful. She is much much much better. I found the Biaxin seems to be very helpful in combo with the augmentin. It is very complicated with Lyme as typically when you begin treatment there is a worsening of symptoms called a Herx as the spirochetes die off. However, it seems in your son's case it has gone on too long IMO to be a Herx, that there is something else at work here. My DD has an infectious disease doc, PANDAS immunologist and LLMD that we see, along with a new integrative doc we are seeing in two weeks, in addition to our ped. My approach has been a medical team because of the complexity of the illnesses, need for expertise, and my reluctance to rely on any one doctor. Please be aware that Lyme testing is at best "directionally informational", which is why I am asking if your DS has had an evaluation by a Lyme expert. If you have any further questions please PM me, I am happy to give you more info,.

[momma2sethandjiji]

No, we have never pursued Lymes, as he has never had a tick bite or any other suspicious insect bite besides a very few mosquito bites. His episodes have actually both followed illness. His first episode followed mycoplasma. That was the one with the more physical symptoms. This followed a "mystery" virus. This onset as OCD and eye flinching tics. I realize there is the possibility he could've had a tick bite that went unnoticed, but do you think that that would cause these symptoms to follow two different sicknesses that were eight months apart? His first onset was this January when I am sure he wouldn't have had a tick bite as we have relatively cold winters here. I guess what I am asking is can those symptoms perhaps be delayed and flared up by sickness? Thanks for the responses

[Hopeny]

No, we have never pursued Lymes, as he has never had a tick bite or any other suspicious insect bite besides a very few mosquito bites. His episodes have actually both followed illness. His first episode followed mycoplasma. That was the one with the more physical symptoms. This followed a "mystery" virus. This onset as OCD and eye flinching tics. I realize there is the possibility he could've had a tick bite that went unnoticed, but do you think that that would cause these symptoms to follow two different sicknesses that were eight months apart? His first onset was this January when I am sure he wouldn't have had a tick bite as we have relatively cold winters here. I guess what I am asking is can those symptoms perhaps be delayed and flared up by sickness? Thanks for the responses

The possibility is definitely there that Lyme can masquerade as other illnesses, come and go, and cause various flares. Many people, including my older daughter's case, never saw a tick or bullseye rash. By the way we never camped, she got it in our suburban NYC neighborhood. A tick nymph can be the size of the head of a pin. Consider that they frequently burrow in hair, or for example behind the knees, it is extremely easy to miss which is why so many get sick. 30-50% of people with Lyme disease do not recall a tick bite or bullseye rash. In my daughter's case we were told she had a virus after the first presentation of symptoms, leg pain, headache, lethargy. Then she got better. Then that summer she had massive respitory issues which were diagnosed as croup, then asthma, then a sinus infection. Then she got better. She had some episodes of sudden onset of what seemed to be depression. Etc. Then she got better. This went on for 2 years. She started to have persistent leg pain, and finally got tested, fortunately she tested positive as many do not for various reasons. In playing Monday morning quarterback I figured out she had gone undiagnosed for 2 years. I am waving the Lyme flag because when I am reading your post about leg pain, lethargy and dark circles, it reminds me of my daughter's case, especially that steroids made it worse. Lyme is an extremely complex and little understood illness, causing many types of symptoms, which can include tics. ILADS.ORG has lots of good information about Lyme. It may or may not be relevant for your son, but if it is, it is important to diagnose and get treatment ASAP, and especially not to give any more steroids. I hope this is helpful to you, the cause of your son's leg pain, Lyme or something else is a symptom that needs exploration.

[momma2sethandjiji]

Gosh. I guess I will need to get it checked. Thankfully, we have an infectious disease specialist nearby.

[oivay]

Just kind of tossing this out there....

 

My daughter got way worse on augmentin.....within about 12 hours her tongue started swelling, throat started to close. It turned out she was allergic to it. I don't think the augmentin actually made her worse, I just think it was completely ineffective, so things just kept progressing.

 

She responded very well to zithromax, and then when that stopped working, prednisone burst and clindamycin, which worked very well the next two times. Biaxin/medrol combo gave her truly horrendous diarrhea, so we had to stop it within about two days.

 

I've never seen this mentioned here, but she'd also had a history of cat scratch disease when she was much younger, which cleared up with a round of zithromax.

[aidansmom]

Gosh. I guess I will need to get it checked. Thankfully, we have an infectious disease specialist nearby.

 

I would think twice about going to an infectious disease specialists for Lyme especially if you think that the Lyme has been there for a while and if you there is a PANDAS type reaction.

 

There are 2 standards of care for Lyme. Here some websites that talk about it.

 

http://www.ilads.org/lyme_research/lyme_articles4.html

 

http://www.ldsg.org/index.php?id=71

 

Most infectious disease doctors beleive in the shorter term treatment of Lyme (what the Infectious Disease Society of America recommends) but most of our kids that may have lyme may benefit from longer term treatment.

 

To investigate Lyme make sure you go to a LLMD (Lyme Literate Medical Dcotor).

[momcap]

 

 

I've never seen this mentioned here, but she'd also had a history of cat scratch disease when she was much younger, which cleared up with a round of zithromax.

 

Lots of talk about bart, i.e. bartonella (cat scratch disease) over on the lyme forum. You can find lots of discussion and info over there if you're interested!