Things so bad BUT Ins. approved IVIg today!

[kmom]

Saw Dr. B last Thurs. for a follow-up to go over IGeneX and other required blood work to get IVIg pre-cert. going. Both kids Igenex was neg. These 2nd round of labs reconfirmed immuno defeciencies and we discussed their new symptoms/exacerbation with him b/c things got worse as school started (story of PAN/PIT parents' lives). We had added Zithromax to the Augmentin they had been on all summer. Dr. B was on the fence but yanked the Augmentin at the appt. Thurs. He also added steroid (tapered dose)after the 5 day burst other dr. gave us didn't get us to where we had hoped...so much trial and error in this disorder but we understand that. Anyway, by Sat. DS was having the worst anxiety I had ever seen. "Felt weird" and nervously whimpering that he was scared to go to family event. So heartbreaking to watch. He continued with that feeling on Sunday. He kept saying he felt rushed when he was asked him to do simple tasks like water the flower garden thinking it would be a fun thing to refocus him. He also wet himself while napping in the car which he hasn't done since being potty trained 3 yrs. ago.

 

DD started with even more major issues with contamination OCD, affected her eating and handwashing and she went back full blown meltdowns w/ a new type of vocal tic which sounded strange...like a sound you make when you are shivering and cold and mixed almost with a turkey gobble sound...I know weird but what's logical with this disorder? I was so upset yesterday as it was just both of them taking turns ramping up. It's absolutely exhausting yet somehow I've grown more numb to it...not that I ignore them but I don't panic inside and know we'll get thru it. Brought them to local DAN Dr. and he thought Augmentin needed to back in med. regimen. Dr. B. agreed last night.

 

This AM Dr. B's nurse called to say both kids were approved for IVIG. What a blessing. I always used to wonder, how do u know when it's time to switch abx? How do you know when they are in a flare-up? How will we know when it's time for IVIg. Amazing how you go through the process--the abx therapies, behavior therapy, top PANDAS docs and everything you can possible try and along the way, you see improvements and setbacks but you just know when to move onto other treatment. Praying IVIg is good to them!

[JAG10]

kmom-Do you mind sharing who your insurer is?

[kmom]

Not at all. Especially if it helps put pressure on other ins. companies to get in gear, I'd love it! It's Captiol Blue Cross. And they are fantastic in the fact that Dr. B's office told me I didn't even need pre-certification (even though I've been stressing over it for over a month now since Dr. B. suggested IVIg was the best solution for my kids). I asked if Cap. BS would cover the 2nd possible IVIg 8 wks after the first one. Dr. B likes to schedule the 1st and 2nd ones right away. IF by 7 wks. your child is 95% or better, he cancels the 2nd IVIg until needed. I was told that Cap. BC doesn't require pre cert., just possibly medical records down the road if more are needed. I personally had my dukes up for a fight b/c I was expecting a big fat no. It was the news I needed mentally after some tough weeks.

[Kayanne]

So your children are having their symptoms ramped up after being taken off of the augmentin? Just a thought, we are only 4 hours east of a documented area (Pittsburgh) that has strep strains that are resistant to macrolides...perhaps an antibiotic change is needed. You might want to run this by Dr. B and see if augmentin should be added back in. My daughter responded really well to Omnicef (a cephalosporin), but it is expensive, so I think docs are reluctant to prescribe it.

 

http://www.nejm.org/doi/full/10.1056/NEJMoa013169

 

Zithromax is made from Erythromycin...however they are different somewhat in chemical structure (I don't really understand this...just repeating what I have read)...the studies that I have been reading have tested the strep against erythromycin. I would love to know if that also means you need to consider Zithromax as having some strep resistant to it too.

 

I have been avoiding zithromax because of this, but would love to have it available as an option.

[kmom]

Thanks for the info Karen. It's so hard to decipher symptoms since so many things seem to compound the symptoms. They have tried different abx's. Augmentin has probably gotten us to their best state but still not 95% better or more which is Dr. B's goal for them.

 

DD8--

May '10--Pen VK (ped. Rx'd--what a joke since it never got rid of the recurrent strep throat inf. from that started in Jan.) Saw minor improvement for a few days and then major backslide--major meltdowns started, couldn't attend school.

 

June '10--Biaxin--broad spectrum abx while we waited on labs for mycoP, strep, Lyme titer (simple test)--improvement for 3 wks, then backslide

 

July '10--switched to Augmentin--improved the most with this abx thru July and Aug. but just b/f school started more anxiety set in, OCD a little worse and frequent urination, plus myco P IGg went to 1.16--not alarmingly high but mine went from 4.64--4.74--again, not significant change but thought that was adding to symptoms so Dr. T added Zithromax in addition to Augmentin and Motrin (which she's taken daily since June '10) over the Labor Day Holiday weekend. Thought things were getting better. School started and a week later--major flare-up. Daily meltdowns, anxiety, OCD and tics ramped up. Assumed she was re-exposed. Dr. T added a steroid burst. Day 5 (last day of burst) saw major improvement--as I tell docs and family members, in no way was she 95%-100%, just back to baseline (the best we've gotten her since onset in Apr/May '10) A week later saw Dr. B to finish allergy testing and review labs. He decided to yank Augmentin but was a tough decision. He upped dose of Zithromax to get max effectiveness. He added steroid back (tapered dose) just to see how these meds/increased dosing affected her progress while IVIg was getting approved. A few days later, meltdowns started up and other symptoms...thought "Hmmm? Things getting worse b/f get better or is it that the Augmentin is out of her system?" Could be both BUT next day she had a sore throat and cold symptoms. It's so hard to decipher EVERYTHING that is going on w/ med changes, getting sick, etc. Both Dr. B and local DAN Dr. who did rapid strep test (neg.) thought Augmentin was needed again. DD had bad day Sun and Mon (worst day in a while) but things were better yesterday and today. Is that b/c Augmentin is back in the game or b/c her cold symptoms are subsiding. It's such a mystery. Oh and the DAN Dr. did mention some strep is very resistant and hard to erradicate so yes. I agree with your posting--gotta question resistance factor. Thanks for the that link!