Going Cold Turkey

[SurfMom]

DD15 is just beginning to pull out of her second exacerbation with only a ten day break between the first and the second. In the last 45 days she has been asymptomatic for ten. W have completed rounds of amoxicillin and a Z pack, have treated her newly contracted allergies with Zyrtec, kept her on Motrin, a multivitamin and iron.

 

She has her first visit with a local neurologist on Weds, and an appt with Dr. M in January, and her only ongoing symptoms are ADD behaviors, what I call restless-body syndrome and emotional flatness.

 

So, I have decided to pull back on everything including a prophylactic antibiotic, journal her food and behavior and see what happens if her titers done Weds come back ok.

 

My concern is that I am already becoming desperate throwing any such drug, supplement, hormone (melatonin), nutrient her way in hopes something will change.

 

Have any of you gone cold turkey with your kids? I would appreciate your comments.

[kos_mom]

Surf Mom,

 

We have had to go cold turkey off abx since end of November because DD's doctor has more or less fired her as a patient (long story). Her anxiety is returning and she has gotten back the inner restlessness/electric shock feeling back, in addition to insomnia. She is still on the following medications--Allegra, baclofen for spasticity, and zofran for nausea/vomiting. I also give her Benedryl for insomnia and continue to give her probiotics. Am desparately trying to find a replacement provider as her ASO is back up to 550, and her myco P IGG and IGm continue to mount; I am sure she needs to be back on abx.

 

Ko's Mom

[Hopeny]

Unfortuantely the time I stopped to see what would happen symptoms came raging back, but my daughter also has Lyme so that complicates matters. In fact even when I would skip one dose of Biaxin I would see OCD stuff start to creep in. I would possibly consider stopping the multivitamin and iron unless anemic, I found this made my daughter worse, no idea why. I am adding in supplement by working with an integrative doctor and we have done extensive nutritional and metabolic testing. Good luck

Edited December 17, 2012 by Hopeny

[SurfMom]

Thank you both. I especially appreciate the suggestion about the vitamins. The reality is that nutrition has always been important in our family, and the presence of nutrients fall near the mean in her blood tests, so I am not sure what compelled me to add the multi-vitamins in the first place.

 

KO, I know this is flipped around, but we fired our pediatrician early on and have had much better luck with an internist. I wish you speedy success in finding a supportive physician.

 

Day two and she is subtly coming out of the exacerbation although I believe that it is a coincidence that we stopped meds about the same time. The only symptom that has worsened is trouble falling asleep.

[sosudden]

Surfmom - we will be 1 year out from ivig in february. During past year as far as antibiotics we have tried cutting back only to need to increase and eventually switch. Dd has strong reaction to most all supplements so she is only on Vit D and kids omegas. I try probiotics but she reacts to those too. More to this story of course BUT she has been antibiotic free for almost 10to days. Feels physically better for sure - ALWAYS had upset stomach nausea with antibiotics (except Cipro?). Anywho, my fingers are crossed for you and us!!! No flare, still doing her intense erp/cbt.

[pandakid11]

HI

We had to stop. The ABX were killing his stomach and causing nausea. We cannot afford IVIG nor do we want it.

It has too many side effects and too many horror stories. I think benadryl helps. I wouldn't stop the melatonin either. Good luck. Studies have shown no real help from ABX anyways. Maybe early on, but not after several months. They wore off. Take care.

 

 

Surf Mom,

 

We have had to go cold turkey off abx since end of November because DD's doctor has more or less fired her as a patient (long story). Her anxiety is returning and she has gotten back the inner restlessness/electric shock feeling back, in addition to insomnia. She is still on the following medications--Allegra, baclofen for spasticity, and zofran for nausea/vomiting. I also give her Benedryl for insomnia and continue to give her probiotics. Am desparately trying to find a replacement provider as her ASO is back up to 550, and her myco P IGG and IGm continue to mount; I am sure she needs to be back on abx.

 

Ko's Mom

[dcmom]

Hey surf mom-

 

All kids seem to be different.

 

Mine were on daily abx for two years since pandas diagnosis. They do really well (symptom free) and flare with illness. When they eventually both contracted strep while on multiple antibiotics- I finally said WTF are we doing?

 

We have changed tactics. We now accept we cannot keep them from getting sick, that is probably impossible, and probably unhealthy. We do not take ANY precautions that you would not take with an ordinary child. We do not wash hands a lot (sorry- ocd family here), no hand sanitizer, no supplements (vit D for one dd who tested low) AND no antibiotics. We have an action plan ready for when they do get sick. We have been doing this for almost two years- and it has been their best two years since pandas hit.

 

If we see any reappearance of pandas symptoms, we do a zpack and 5 days of advil dosing. Otherwise no meds, no supps.

 

All kids are different- but, I would sure want to know what my baseline was, and what help (if any) the meds are doing. For us, the key seems to be shutting down the autoimmunity as soon as it starts- otherwise they are normal kids. Doesn't work this way for everyone here- but still might be helpful to know why you are taking certain supps.

 

I did try fish oil twice with them- both times we had bad days (just cranky, maybe hyper-ish)- decided then to be very choosy with supplements.

 

My grandmother never took a vitamin in her life (and rarely saw the doc), ate lots of canned goods and Entenman's products, and lived and extremely healthy life to age 90. I am over obsessing- if they are doing well

[kos_mom]

dcmom,

Does your pediatrician prescribe the contingency Zpacks in advance so you can spring into action quickly?

Ko's Mom

[sosudden]

IVIG is what brought our daughter back to us! Antibiotics and antivirals, for daughter, were very necessary and another irreplacable step in getting well and functioning again. Every child seems to tolerate things just a bit different and treatment has to be tweaked as their body and mind heal and flare. Autoimmune in general is hard to diagnose and treat unfortunately... and these kids can respond so strongly to meds/supplememta...for example, my dd10 can not take melatonin -- the few times we tried she woke up in morning and felt awful - bad dreams bad feelings etc.