Tension is high here.

[1tiredmama]

Things are awful right now. Ds18 should have been admitted to Georgetown today for PEX, but after fighting for insurance approval for more than a month and getting the approval for his admission, Cigna NALC pulled a fast one. On Friday, we learned that the procedure itself needed approval through different channels, and our doctor's staff never even sought that--didn't seem to know about it! So, the fight starts ALL over again. It has been an emotional roller coaster for dh and me. It is really taking its toll.

 

I want to move on. I feel like we have to fight for PEX due to the length and severity of ds's condition, but ds cannot linger in his current state in the meantime. And, besides, I doubt we will win this fight. These insurance people are very good at side-stepping, losing things, and prolonging the whole process. I want to go into the next appt asking for an immunosupressant. Dh is in an insane mission mode. I'm afraid he's going to yell at the wrong person.

 

I was just offered a very demanding job, which I need to take for the money. I'd be lying if I didn't say that I am looking forward to the distraction. But, I am terribly worried about balancing it all, including my own health/autoimmune disorder.

 

Today, when dd12 had a panic attack over going to school, I finally admitted to myself that she won't be able to attend full time starting next week when I have to begin my new job. She hasn't been able to do more than a few uncomfortable hours in a self-contained special ed classroom since the first day of school. I'm going to have to pull her out and put her on homebound, which means I'll need childcare!

 

Dd's fear is spreading from school to soccer--she loves soccer! I feel so helpless in the face of all of this. We've got only one more medication to try for anxiety, then we are out of options. I don't trust supplements. I've done my own research, and I'm just not comfortable giving the kids more than vitamins.

 

My head has been killing me all day! I can't fix this, and I'm losing faith in our doctor's ability to fix this. I almost wish I didn't know what was wrong with my kids. Not knowing was hard, but knowing and not being able to fix it is even harder. What's the point in knowing???

 

Thanks for reading.

[kos_mom]

1TiredMama.

Sometimes I think it was easier way back when when my DS had very bad exacerbatiions and no one could explain it and so there was nothing to do about it. Now we know what is wrong and know how to treat it but we can't get the treatment. We were supposed to have IVIG the first week of September and are still waiting on the insurancd company...

Ko's Mom

[MomWithOCDSon]

So sorry you're confronted with all this at one time; that, combined with having dealt with your DS's condition for an extended period, surely takes its toll. Not to offend anyone here who relies on the health insurance industry for a paycheck, but I despise each and every person in that industry I've come across; if they're not actively working to throw up a wall between you and your benefits, they're participating in the "stall and distraction" protocol so endemic of the industry. It makes me spitting mad.

 

Not to open a can of worms on your thread, but I do wonder why you "don't trust supplements"? Not that they're always the answer, and not that coming up with your own cocktail might not have unintended, even negative, consequences. But I'm thinking that if you're starting with a clean slate in that regard, and get the advice and support of an integrative doctor or a naturopath . . . someone well versed in the field . . . beginning with a single supplement at a time and working from there might not at least help a bit and/or take the edge off some of the more debilitating issues?

 

Even aside from that, and aside from being denied PEX for the time being, I would hope that your medical/mental support team will make itself available to you and offer some "triage" plan/options so that you and DH can do the things you need to do to hold your household together, including your new job. This most recent highly disappointing news (denial of PEX coverage) is maddening and certainly demoralizing, but you're a great mom, and you'll find a way to juggle everything again, just as you have up 'til now. Hang in there!

[dcmom]

1tiredmama-

 

Keep up the fight. We got three denials, before on final appeal, both kids were approved for pex. Dr L was really helpful to us with this. We also enlisted the HR director at my dh's company to help in the fight. Dr L's office, DH, myself and the HR director were on the phone with the insurance company every day for over 3 weeks- but it was worth it.

 

In the meantime- have you tried steroids? They have been a lifesaver for us (and others, I know)- especially since we started using them more creatively. Some options would include: IV solumedral (can do fairly high dose which would be anti inflammatory and immune dampening), long oral taper, once per month short burst, etc. This is something to consider for both kids.

 

The other issue is intense therapy. We had extreme school avoidance (homebound for 6 mos) and a three week outpatient program totally took care of that. USF has a great program- covered by insurance.

 

Lastly- if pex cannot be covered, maybe you can get IVIG covered- or bit the bullet and pay out of pocket- if Dr L thinks it is indicated.

 

Insurance companies and the whole situation sucks. I have been able to handle pandas and all that comes with it fairly calmly- BUT when we had to fight with the insurance company while my daughter was in crisis I was really angry. I never get angry, so it was very uncomfortable and upsetting for me.

 

Keep your chin up- many of us have been there- our family came out the other side in a great place- yours will too.

[tpotter]

1TiredMom, I totally feel for you, and completely get where you're coming from. I've actually been there. DS was scheduled for PEX 2 years ago, and it was cancelled 4 days before he should have gotten it. Having been there, and coming out the other side, finally, I am glad I persevered. It took us 8 more months to get him tx, due to horrible things partially beyond anyone's control (wasn't insurance, believe it or not, in this case.) I tried to get help, but at that time, there were even less people treating our kids than there are now, so I wasted a horrible amount of time to the detriment of my son, trying to fix things I couldn't fix. I know you have gone the supplement route, but most are vitamins...the problem is that the CDC "recommended daily allowances" just make no sense, because each person's unique needs are different. For instance, if you son/daughter has an MTHFR deficiency, they need zinc, methylfolate (not folic acid), and other b vitamins. If their adrenals are being taxed (which I can't imagine any of our children NOT having, they need support for the adrenals.) But, trying to figure it out ourselves can make them worse...we need the help of a good naturopath, ART, holistic, and/or homeopathic practitioner (with experience.)

 

I know you need the money, and I totally, completely 100% get that, but I am very concerned that you are going to be cutting yourself short. I tried...I really, really tried, and just finally had to admit that I needed time off. I now work part time (actually contract, because I can set my own hours, and they're flexible.) I get no benefits (luckily I've got them through my dh), and I don't make enough in the end, but I've got the 1 thing I couldn't balance with a full time job...flexibility. Just a thought.

 

Here's my recommendation, based on lots of experience, being in a very similar situation to what you are in, and with older children:

 

1) Don't give up. It will get better.

 

2) Fight insurance (PM me, and we can discuss methods, but I've been there, and finally won.)

 

3) While fighting insurance, make an appointment with a 2nd provider...one who can maybe take you another route (that's what I think I waited too long to do...but then again, there really weren't any others who could help me at the time.) Have you also checked for other infections that could be playing a roll in all this?

 

4) Alternatively, since the PEX is with a large university hospital that has all kinds of funding options, can you go to the billing office, and ask them to set up a payment plan for you. Depending on your income, they might even reduce the cost. Then possibly pay privately (I know it's outrageously expensive, but your child gets the tx he needs...I know that if Dr. L. is doing PEX, your child is severe.) Then, go back and fight insurance. They sometimes pay easier AFTER the fact (I think DCMom did that, so she might want to chime in.) I didn't do it, but probably should have (DS got way worse during those 8 months that we waited, and I also got much worse medically, because of all the stress). I know it's terribly scary, and we all wonder where the money is going to come from, but sitting and obsessing about what we can't do to help our children when the tx is in front of us, IMHO, is worse.

 

5) My children are stable because of supplements & ongoing abx, and tx for other infections...in our case, lyme, bartonella, babesia, and more (although now that DS16 is back to school, and is being exposed to strep, and stuff, we are having problems again....but nowhere near as severe.) But, I truly don't believe that would have happened, if we didn't put supplements into the mix. But, I have him tested for each supplement, and it has to make sense to me.

 

PM me if you want to talk.

[PowPow]

Just another little of encouragement.

I went through the same last minute stress and not knowing if/when it would happen.. due ot g'town scheduling, insurance, dr office each time my kids had pex.

I swear- I nearly died from the back and forth anxiety it gave me.

also, the devastation from thinking my kid would NEVER get better due to the incompetence and regulations of certain groups. I cannot even tell you the string of profanities and hateful thoughts that filled my mouth and mind those days.

Pex & IVIG were mentioned as the treatment for my child and it was not until one YEAR and one MONTH later that she finally got her IVIG. Then pex was a few months later.

I will also say that I have learned to not put to much stock in actual dates for procedures given by doctors and hospitals- that way I do not lose hope when it does not work out on the presupposed timeframe. I know the crunch you feel since insurance may be changing its policy soon.

IV steroids may be an excellent thing to do now to bide time and maybe bring some healing, too!

thinking of you.

[DeterminedMomVA]

I'm thinking of you, too, and pulling for you. This is really stressful on family relationships...hang in there and try to be good to each other while you fight this. My DS also has school anxiety. He wakes up about 2 mornings each week refusing to go due to some anxiety (social, academic, etc.), often little things that's he's hyperfocused on and blown up into a big thing. As with all anxiety, we've found it very important to keep making him go to school. We do everything we can to make him keep facing the anxiety and learn to calm himself and get where he needs to go, rather than accommodating the anxiety. Today he was almost 2 hours late, but he got there. Having said that, we've also been fighting my DS's anxiety over sports, even the sport he loves, ever since he developed PANS. This year we finally allowed him to withdraw from that sport...the constant fights and anxiety over going to it was just too much, and we need to focus on getting him to school, which we think is more important. We hope that with IVIG he'll improve and his anxiety will go down,but who knows. I'm lucky to have a fairly understanding workplace where I've been for a long time, and have FMLA that I can use as needed for the next year. I tend to use it for a few hours here and there when DS can't get himself to school or needs to see the Dr. I don't know how I would be able to cope with having a PANS child if I had a new job and an employer who didn't know my history of being reliable and competent before my DS fell apart. Hang in there....

Edited September 19, 2012 by DeterminedMomVA

[Dedee]

I am so sorry for what you are going through. My lowest point was when we were fighting insurance, trying to get them to pay for IVIG for my daughter. For us, it never happened and we ended up paying out of pocket, but many do end up winning the fight. It's a terrible feeling to think your childs fate lies in the hands of someone on the other end of the phone who is only looking at financials. I can't help but have a deep resentment for all insurance companies. They have denied so much for my kids. It's very unfair, what you are going through. Everything all at once too. I remember last year there were many days when it took both my husband and myself to get my daughter to school. One of us would drive and the other had to hold her down in the back to keep her from attacking the person driving or to keep her from jumping out. Once at school, the principal would come outside (we called her first to warn her), and she took her kicking and screaming into school while we drove away. It was so terrible. The principal would always call us after she got calmed down. They would take her into the nurses station and keep her there until she was calmed down then take her to her class room. We were very fortunate to have a very understanding principal who was also very strong and could hold her during her fits. We found it was very important not to give in to her school refusal, no matter what. She would go through these episodes off and on through the school year. Usually it only took about twice of us dragging her (literally)into school before she would start going by herself again.

 

All that to say I know where you are and how painful this time is. I wish there was something magical I could say or advice I could give to help your through. It is very much one day to the next and I promise it will get better. Please take care of yourself as much as you can. All my best...

 

Dedee

[dcmom]

determined mom-

 

Just wanted to respond to your post as well.

 

UGH! We went through this with my older daughter- so tough.

 

I am happy to say she is 100% now (and has been for 1.5 years)- so there is hope.

 

She had flat out school refusal, and then refusal to all previously loved activities. We went the path of really making her get there- which I agree is important- but one thing we missed, and figured out after 6 mos of failing to make progress, is that she had to face the underlying cause of the anxiety- which was ocd.

 

I only have girls, who I understand- are more expressive. Do you know what the real anxiety is- does he have ocd (sounds like it). My daughter would give all kinds of excuses- but we were able to uncover the ocd that caused it all (fear of vomiting). We tried to force her into school, letting her go a few hours a day and trying to work up to more. In retrospect that was extremely unhelpful without giving her the appropriate therapy for the ocd portion. We were throwing her in the fire, without giving her the tools to deal with it.

 

Don't know if this is your case- but just wanted to throw a few things out there- hang in there.

[DeterminedMomVA]

Hi DCmom,

 

In DS's case it appears to be intense social anxiety and fear of failure at what he attempts (perfectionism...although his handwriting can be very sloppy (again, deteriorates noticeably with each exacerbation or when upset or tired), his room is messy, etc., but it's like an internal expectation of perfectionism.)

 

No one has been able to identify the actual OCD fear and he hasn't told anyone what it is if he has it. Thanks for the insight you provided, maybe we need to push harder to see if we can pin down a specific fear. His first therapist said 'no OCD', just mania (he was moving toward a bipolar/mood disorder dx)...DS didn't like first therapist at all, so we switched to one that we think is great. Current therapist says he doesn't meet the dx criteria for mania, he's just 'wound up' sometimes in an ADHD type way, but again, no id. of an actual OCD fear. When he's in an exacerbation he has lots of intrusive and scary thoughts and becomes hyperfocused on a particular thing or activity for hours at a time, before dropping that and moving to something else. Interestingly, when we saw Dr. L (about 2 months after we'd seen Dr. B and started augmentin, which resulted in a rapid and notable improvement), DS took the self-reported Childhood Yale-Brown OCD scale and accidently filled it in for how he'd been feeling before abx -- he scored a 27. Then Dr. L asked him to fill it in for how he was doing on that particular day, and he scored a 6 (he was doing pretty well after a few months on abx.)

 

He's not on any SSRI's right now, but things are getting to the point where we might need to try one again (Zoloft wasn't successful last year). His allergies started bothering him again last week, and Zyrtec, which we restarted last week was definitely activating him, so the ped just prescribed Vistaril at my suggestion (thanks to the board for telling me about it)...I'm hoping it will also help with anxiety without sedating him--he takes Nasonex too, but apparently it's not enough this time of year.

 

His first IVIG is in a month, and we're hoping not to make any more med changes until well after that so we can disentangle the effect of IVIG from the effect of any med. Our hopes are pinned on it, hopefully it will help -- like 1tiredmama, things are getting rough again right now. So grateful we have this board with others who understand how rough things can get and provide hope.

[Christianmom]

So sorry you are going through this. We were at a similar crossroad with our son in Nov. of 2011. PEX was recommended by Dr. T and denied by Dr. Elia (CHOP). Don't think it would have gone through insurance anyway. So we were looking at IVIG as the only possible solution, expecting to pay a lot for it because it is my weight.

 

Instead we did LOTS of additional testing (most of which insurance covered) and lyme was discovered. We decided to go as natural as possible with lyme treatment, especially since my son had already been on antibiotics for a year and a half at that time. We are using Dr. Klinghardt protocols for lyme, parasites, yeast, KPU, EBV, bartonella, and babesia. My son is much improved though still has a long ways to go.

 

When we were at CHOP trying to get PEX (back in Nov. of 2011), Dr. Elia diagnosed my son with extremely severe OCD. (At least this one point we did agree on.) He was functioning at about 30%. We had to help him walk into her office. Today he is at about 65%-70% and improving.

 

I said all this to say, if PEX or IVIG don't work out for your child, don't give up. There are other things out there. My biggest disappointment over not getting the PEX for my son was that I felt it would have at least given him some temporary relief. I wasn't sure it would have brought permanent relief. But it seemed heartless to not give him relief when it was available, even if it was temporary. But with that said, the PEX denial made me search all the harder for other options. And lyme was discovered sooner than it would have been because he didn't have PEX. I believe that God worked it all out for the ultimate good of my son.

[dcmom]

determined mom-

 

I am certainly not a psych but it would seem to me that fear of failure and perfectionism that gets in the way of normal functioning (going to school) could be ocd.

 

For my daughter, she had a fear of vomiting. She did not have any "rituals", her ritual was avoidance. Sounds a bit like your son. Afraid of failing (look we are all afraid of failure to some extent, but we are able to forget it and move on), so he tries to avoid.

 

The therapy for us was not necessarily just going to school and not avoiding- but was actually facing the fear. For your son the fear of failure. For us that meant saying the word vomit, writing the word vomit, watching videos and pics of people vomiting (a lot), telling strangers a story (made up) of vomiting in class, pretending to vomit in public place, etc. Yes not pleasant- but once she actually faced the fear- the avoidance and anxiety were gone.

 

Your son needs to face the fear of failure, and realize he can handle it. (our psych said a lot of ocd is not the fear, but the fear of not being able to "handle" it). He needs to KNOW he will fail, but he will pick himself up and be okay, and he needs to know this by doing and not by telling him. Is this the type of thing your psych is working on?

 

Again just my opinion- but we wasted 6 mos seeing local psychs that just wanted to "talk".

[Hopeny]

So sorry, this gets so hard. I would say too, borrow or get a payment plan if you can't get insurance to pay. Regarding the job, there is little risk IMO. If it gets to be too much, you can always resign, if you find you can manage it, you will have the financial help you need. to save money we got rid of our nanny and got an au pair instead, which is much more affordable. Really wishing you all the best, there is strength in numbers, you have a lot of supporters here pulling for you and your children.

[cobbiemommy]

First, here is a hug from the show me state (MO). We have been where you are and hope to never be there again. Talk to the Hospital. Some will not even proceed without insurance approval, some will provided you are willing to sign on the dotted line...

 

Second, if you do not have a job currently or are underemployed, take the new job. You have nothing to lose and your boss may be very sympathetic to your situation.

 

Third, have you talked to your doctor about a possible steroid taper? That worked miracles in my son and bought us enough time until we could get IVIG.

 

Fourth, I think insurance companies are part of the "evil empire". They are a necessary evil, but I despise them just the same. On the plus side, if you end up having to pay out of pocket, it greatly reduces your taxable income. This is sick humor, but happened to us three separate years.

 

Lastly, have you tried an insurance advocate? We used one and I highly recommend them. PM me for the name.

 

Know that there are other mom's in your corner. We are here to support you.

[dcmom]

Yes, and just to add- we did pay out of pocket to get the pex done. It was $26k. The procedure was actually approved AFTER it was done. Since the hospital is in our network, our insurance paid the "negotiated rate" of about $5k. The hospital reimbursed us about $20k- so in the end we only paid the $1k.

 

If paying out of pocket is an option, you can continue to fight the insurance co.