Both kids backsliding

[kmom]

Going through a backslide here and need advice. I've been wondering if my kiddos backslide could be due to needing an abx switch, a hidden infection, allergies that are bad now w/ season change, more detox, etc??? Since last Nov. kids have been on Augmentin/Zith/Rifampin for a Lyme/Bartonella dx. They also take Diflucan, Krill Oil, organic raw food multi, alpha lipoic acid, pectasol for chelation, probiotics, LDN and were on Milk Thistle but I yanked that as you'll read below and bought Burbur and Chlorella. They did so well through Feb. My DD felt was @ 95+%. It was amazing. We enjoyed getting our lives back. My DD was doing so well too, probably 90% better. Then we added in Tindamax on weekends and the herxing began. I began dreading weekends and the Mondays/Tuesdays after. I too was having a heck of a time w/ Tindamax...nausea and vomiting the 1st 2 cycles but it changed for the 3rd and 4th week long cycle (pulses every other week). No more queasiness but by day 5 on Tindamax, I'd wake w/ major pain from my neck, down my back and behind left leg. The pain was really uncomfortable. So at our last appt 2 wks ago our LLMD decided to yank the Tindamax in all 3 of us. He suggested Samento for the kids. It was on backorder and being delivered anyday now so we'll see what that brings. (For me he kept me on Doxy and Ceftin and added in Cipro to be pulsed every other week and said he'd probably start me on Alinia @ the following appt.)

 

As for the kids, we had noticed some backsliding maybe a week or two prior to out appt. 2 wks ago. The only thing I could attribute it to was yanking Milk Thistle b/c I had been reading MT and Rifampin don't mix well. LLMD said it was more of an individualized case by case decision??? He wanted them to go back on MT. My DS was showing more signs of backsliding than DD so he switched up his abx. combo. He went from Aug/Rif/Zith to Aug/Rif/Doxy(weekdays) and Zith on weekends. He thought the switch would make a difference. Both kids also got Bicillin shots that day which I dread b/c I hate to make anything worse but IF things have to get worse b/f better I'm willing to endure it.

 

By last Sat. DS was so defiant, oppositional,raging & perfection OCD was back. By the afternoon I had to carrry him into an epsom salt bath. It's this sad ritual where I have to just physically force him to get in the tub. He gets more angry, tries to avoid the water, but after I refuse to back down and give him no other choices, he cries in the tub and finally then relaxes and suddenly there's a break in personality usually b/c I've distracted him finally and the sweet boy re-emerges. My parents were here for the holidays (and to get my dad treated for Lyme/Ehrlichia/Babesia and possibly Bartonella but that's another post for another day I plan to share.) They were so sad to see DS backslide b/c he was doing sooooo well.

 

My DD too has regressed since things were going so well but just not as badly. Thank goodness her contamination OCD hasn't come back! Hers is some anxiety (nervousness about school even though she loves it) and just that "not right feeling" and even have seen a few moments where she has unvoluntary arm/body movements for brief periods where she says, "I don't know what/why this is happening."

 

So I try to analyze every symptom, Rx, detox agent, etc. I felt I needed to give the Bicillin some time to work in both kids (and the Doxy for my son) before throwing in the towel but today marks 15 days post shot so I called the Dr. asking if I needed to continue on this path and let the kinks work their way out, or switch up abx (maybe Rifampin stalled on them???) or who knows what else could be done. In the meantime, I've been adding ibuprofen as needed. I also started them on Burbur drops 3 wks ago but can't say I've been giving it consistently like I do all other meds/supplements. Anyone else have any ideas? I'm all ears!

Edited April 28, 2011 by kmom

[ShaesMom]

It's this sad ritual where I have to just physically force him to get in the tub. He gets more angry, tries to avoid the water, but after I refuse to back down and give him no other choices, he cries in the tub and finally then relaxes and suddenly there's a break in personality usually b/c I've distracted him finally and the sweet boy re-emerges

 

We go thru this same exact thing with my dd except my DH & I (& the bathroom walls) usually end up having more water on us than she does. It is a horrible experience for all us.

 

Sending lots of hugs your way!!

Edited April 28, 2011 by ShaesMom

[LNN]

If it's any consolation, I could have written your post (and almost did a few weeks ago). DS started treatment on Oct, had immediate and awesome response - 95% by Jan. Woo Hoo - this is going to be a breeze, I thought. Stalled in Feb. Focused on detox. Backslid in March, saw a return of one OCD compulsion and big increase in brain fog. Maybe 80%. Switched abx (dropped aug, added omnicef and tindamax on weekens). Omicef kicked his butt. Big herx and a return of TICS (hadn't had tics since pex in Aug '09 - mom had to pull out every tool to not go into PTSD mode). Defiance, idea fixation followed by a 45 min meltdown when I wouldn't comply just to remind me of what 2008-09 was like...And things got worse over time, not better (probably got as low as 65%). The tics got way worse - and I'm not talking a throat clearing or blink - I mean a convulsive, myoclonic back spasm that made him look like a cross between a chicken and Mick Jagger strutting. During this time, I discovered MT (which helped a lot with the defiance and idea fixation, but didn't put a dent in the tics), upped the charcoal, increased the glutathione, upped the fiber to ensure regularity... and twisted myself into a pretzel looking for clues as to whether I should ease up or plow forward.

 

Because DS has been sick for so long and the stall/backslide worried me, we stuck it out. A few weeks in, I saw small signs things had peaked. 5 weeks and everything has resolved except the back spasm/tic and that is on the way out. The up side is his brain is sharp and he looks like he's taking a step forward. We see the LLMD and I'll find out if I get yelled out for not calling him and easing up or if I did the right thing. The reason I plowed thru was partly because some of it was over spring break and partly because it was milder than what we dealt with during the worst Pandas stuff.

 

Anyway, I can't tell you what to do. I know there are no medals for surviving bad herxes. But sometimes I get so angry at the microbes that it feels like it's wrong to back off. But we're dealing with our kids, and you don't want them to hurt. Once again, you're left with a gut call and those ERP tools you hoped never to need again. I'll hope it's short lived for you.

BTW - you may want to edit/remove your doctor's name from your post. If you google his name, your post may show up on a search and you don't need him being scrutinized for his protocol.

Edited April 28, 2011 by LLM

[kmom]

@ ShaesMom--yes, I understand. The salt water in the bath has made their shower curtain colors bleed. When DS was a baby he had bad reflux. I used to tell DH, when that kid stops spitting up on rug while crawling, we're celebrating and buying a nice Oriental Rug. I'm doing the same w/ a new shower curtain. The moment we feel we've kicked the Chronic Lyme thing down the road, Mama's redoing the bathroom to get rid of the bad bathroom/tub memories!

 

@LLM--Thanks. I don't want others in my boat but nice to hear success stories. And I do expect backslides. I knew it was a risk as we tackled cystic Lyme but what's the alternative...it rearing it's ugly face at a later date? I'm with you. Nail those microbes no matter what. I tell the kids all the time, "Lyme isn't for the weak!" I knew we were going to ruin that harmonious balance Rifampin brought us when we peeled back yet another layer but I needed those good months that we never saw consistently w/ PANDAS only tx to make me an avid believer in Multiple Chronic Infections/Lyme. And I do believe PANDAS without Lyme exists but not in our case. I could have saved a lot of time, money and heartache starting w/ our LLMDs rather than the 3 PANDAS specialists we sought out--but hindsight is 20/20. I'll be interested to hear what our LLMD calls back and advises. To add to the confusion, Samento arrived in the mail today. I'll wait till I talk to the Dr. though. Don't need to make more of a mess over the next few days. PS-thanks for Dr. name thing reminder!

[ShaesMom]

The moment we feel we've kicked the Chronic Lyme thing down the road, Mama's redoing the bathroom to get rid of the bad bathroom/tub memories!

 

 

What a great idea! I will have to remember it when we move on to the next phase-healing emotionally.

[LNN]

@LLM--Thanks. I don't want others in my boat but nice to hear success stories. And I do expect backslides. I knew it was a risk as we tackled cystic Lyme but what's the alternative...it rearing it's ugly face at a later date? I'm with you. Nail those microbes no matter what. I tell the kids all the time, "Lyme isn't for the weak!" I knew we were going to ruin that harmonious balance Rifampin brought us when we peeled back yet another layer but I needed those good months that we never saw consistently w/ PANDAS only tx to make me an avid believer in Multiple Chronic Infections/Lyme. And I do believe PANDAS without Lyme exists but not in our case. I could have saved a lot of time, money and heartache starting w/ our LLMDs rather than the 3 PANDAS specialists we sought out--but hindsight is 20/20.

I was initially thinking recovery would be like stairs - up a step, a plateau, up a step. Wasn't completely prepared for two steps up, one- one and half - steps back. IMO, OCD is worse than the tics (esp. intrusive thoughts and anorexia versions) but for some reasons, the tics just bring so many flash backs - it's like smelling something that reminds you of an event that happened 30 yrs. ago - I just get this primal fear in my gut when they appear. It's like being able to see the brain get zapped.

 

Totally with you on the 20/20 wish. I too believe "pure Pandas" exists and deserves full recognition and research. No child should have to suffer the way our kids do, regardless of which germ is responsible. But the bank account would be about $20K fuller if we'd started down the lyme path the fist time. (which would of course go toward expensive and controversial lyme doctors and treatments instead )

 

I had to laugh at what you tell your kids. I almost posted that I feel like Pandas/lyme families are like the Marines - no weenies allowed! It's hard enough to go down one trail, but our kids seem to have lyme presentations that aren't talked about much on lyme forums. Don't know if it's bartonella or neuro-lyme, but this is the only place I can type ERP and CBT and have people know what I'm talking about. I feel like a mis-fit even in the lands of mis-fits! Not much room to have a thin skin or be a fragile flower.

[sf_mom]

You know we were in a sweet spot with PANDAS treatment (minus the blood in the stool) when we first saw our LLMD. I did anticipate a herx when we started treatment but I didn't anticipate witnessing every single TIC plus some new ones resurface for over 12 weeks. I remember a friend called and she asked 'what percentage would you give him'..... at that point, I had no idea were he was in his recovery. I just couldn't believe he still had SO MUCH in him to cause such a reaction... after so long. Since then we've been on rewind a couple of times. Our rotation of antibiotics in January also brought a new symptom of a cough and its now been almost 16 weeks and still awaiting resolution.

 

Its a tough journey no doubt. Last July prior to Lyme treatment, I used to think no TIC/no OCD = 100% day and remission of symptoms. Today I've had to revise my perspective. We have seen the strangest things resolve that we had no idea were related to this disease. He is so much better but with a few worse 'things'.....

 

I think you are in great hands and problem solving this correctly. I do think you are 'still' seeing an increase in symptoms due to rotation but I'll be very interested in how your Dr. handles the issue. You are not alone in these setbacks.... they do happen and out of no where sometimes.

 

-Wendy

Edited April 29, 2011 by SF Mom