I am at my wits end....

[Dedee]

We are trying to hold on till insurance approves IVIG for our daughter. We have been waiting 3 1/2 weeks. They haven't said no, just keep asking for more information, which our neurologist says is good because they haven't flat out refused. He labeled it an urgent case. Goodness, glad she isn't dying of a some major disease. Problem is that it seems her rages just seem to be getting worse. Some of her physical symptoms seem to be improving but the rages are as bad as they have ever been. We had talked about starting Lamictal but I really wanted to wait till after the IVIG so we could get a clear picture of the results but after yesterday I'm just not sure. During one of her rages, she attacked me while I was driving and it was all I could do to get pulled over safely to deal with the situation. I had to call my husband to come drive us home so I could hold her down in the back seat. Then during another rage at home I had to put her in her room and lock the door to minimize the damage and keep her from physically hurting me. Well she found a coat hanger and picked the lock and got out. Now that was a first. This is a seven year old girl! I know, you would think she couldn't physically hurt me, but I am very small stature and she gets very strong during these events. Another time last night while I was trying to restrain her, one of her loose teeth got knocked out. Well let me tell you, that just looks great to anyone who doesn't really understand this situation. Especially when she tells my sister that "I was crying and Mommy knocked my tooth out"! Seriously, OMG...What am I going to do??? I expect DHS to be at my door any day now. I have cried till I can't cry any more. When the rages are over she climbs in my lap and talks about how stupid she is and asks me why she does those stupid things. Last night I told her she was going to get better and she said she just wanted someone to kill her because she didn't want to go to any more doctors and do anything else cause it wouldn't work. She said she just wished she were dead. I sit here with tears running down my face. My poor girl! I don't know what to do for her. We are waiting, waiting, waiting, for insurance. The doctor says no way will they pay if we do it first and then try to get it reimbursed. Says they would flat out refuse that way. Financially, we need to try to hold out if we really think we have a chance of getting it paid for (and the doctor says we do)since we will most likely need more than one. Is starting medication our only recourse at this point? I don't know how to help my poor daughter. My heart is broken. My life is shattered.....

[SSS]

Please hang on. My heart and prayers are with you!

 

I could have written a lot of your post. Before our IVIG's, my dd6 had the exorcist/rage 'she's gone' breakdowns. I am also small, and felt like I was being abused in an abusive relationship. I was scared 1/2 to death, not knowing if I should call an ambulance. One time, my DH was out of town, and I called my 77 yr. old Father in law to come over asap. And, my dd6 started to do this in busy parking lots, when I had my 4 year old with us, she would run and scream, I couldn't get her back, then forcing her into a carseat with her fighting me with everything she had, 'swearing' at me. I was sure someone was going to call the police on me.

 

I can honestly say, after IVIG's, I have not seen any of these type of rage/exorcist attacks again. We have had some bumps, for sure, but not this coming back.

While we were waiting, I vowed never to take her out again alone with my youngest. We stayed home. I fed her motrin, and antibiotics. And I pushed and pushed to get the IVIG done asap, because I had no idea what else to do.

Can you call up your insurance company people, and press, telling them your child's physical and mental health are rapidly declining, and you need help asap? that you are thinking of checking into a hospital for a stay if they don't approve this soon?

Thinking of you----

[dcmom]

Dedee-

 

 

I am so sorry. While things have not gotten that bad at our house, we certainly were headed there without treatment.

 

We did do PEX as self pay, while we were fighting the insurance company. I didn't want to self pay- same fears as you- but we could not go on, I could not watch my daughter continue to suffer, and thankfully, my dad had offered to pay. We did, ultimately get approval post procedure, and were reimbursed. To be honest, the fact that you are waiting on treatment for the insurance co benefit- I really don't think they give a F about kids, or anyone, so I don't know how much that will sway them.

 

My doctor did put in writing to my insurance co, that they were jeopardizing my daughter's health and welfare by delaying treatment. We also had the HR dept at my DH's company pressuring the insurance co daily. I called daily as well.

 

In the meantime- I did not leave her alone in a room, I pushed as many movies as she could watch, and we read to her for an hour plus per night. It was hard, and it was crisis time.

 

Hang in there!

[nicklemama]

I am so sorry this is happening. I don't know what to tell you but to hold on. Believe me, I know how hard it is. My DS was the same. The rages, attacking me. Having to hold him down. Hearing him yelling at me that I was killing him. The remorse when it was all over. His depression over being so out of control and hurting me. I pray I never have to relive those days.

 

Would it help to call your doctor and ask them to try and intercede w/ the insurance co again? Call the insurance company yourself and bug them.

 

Hold on and hang in there. I've been there and it is NOT easy. I am so sorry.

[PowPow]

Dedee,

I am so sorry. I too have lived through this with my daughter.

Risperdal helped her rages greatly. The lowest dose was not helpful, but we slowly went up and it helped her at a little higher dose.

 

I understand your concerns about paying for IVIg. We just had it done for my daughter last week. We have already had some positive results, which was not expected (though I hoped!). we also paid out of pocket & are crossing our fingers. It is scary to wait, but the finances are scary, too.

 

Can you find out the diagnosis code the doctor will use and then call the insurance and see if it will be accepted? I know that our doctor's office cautioned me not to call too much, as that might make things worse. Who knows what the answer is?

Our insurance did not require pre-authorization, but says they will not pay for it for PANDAS. Since her diagnosis is post-infectious encephalitis, we are hopeul.

I know your fear of CPS or DHS coming. I frequently wondered if the sheriff would be called.

If you need to wait- no one faults you. ASk your neuro about Risperdal, maybe?

 

best wishes and prayers today.

[tpotter]

Unfortunately, we have also been there. My arm got broken once, and I had to lie to the ER that I was "messing around" with my DS (actually, it wasn't a complete lie, because we were "messing around", just not by choice, and it wasn't a game. I described the exact position my arm was in, so no one would get suspicious. I was really afraid that they wouldn't believe me, and either y DS or my DH could get accused. Horrible situation.

 

Anyway, I would highly suggest that you try to get videos. She might not let you (when my DS was in rage mode, I couldn't get videos...he'd see me, and try to break the camera, but when he gets anything else, like chorea, I have no problem getting the video.) We did manage to get video several times, though, (got the camera in a hidden spot without him knowing.) Unfortunately, it makes it look like a sleep disorder or other things, but it might sway the insurance company if your neurologist has a diagnosis of post-infect. encephalitis, and they see these videos of how violent she gets. Also, if you have to prepay, and then file for reimbursement, it can help your case. Finally, if you're ever accused of anything, you can use the video as defense.

 

Too bad we have to think this way, but it's worth a try.

 

For the record, I think you really may have to prepay if it's that bad.

 

You're in my prayers.

[airial95]

I can't offer any magic word of wisdom, but can and will offer all our hope and prayers,

[T_Mom]

Dedee--I am so sorry and I believe I understand. This year has been a living nightmare for our younger d (11) --uncharacteristic sudden onset OCD that morphed into raging, ODD for the past 6 months--it has been unbelieveable. Horrible scenes, I understand that you are both afraid and fearful for her, as well as the family. (I hid all knives/scissors, removed breakables after numerous things were destroyed.)

 

If I we had to live this year over again, (and if I had decided on IVIG as the next step) I would have done it 6 months ago, had I known. (We had it done recently and saw almost immediate results.) Our doctor also included a steroid dose at the end of the IVIG -- which may be helping our d, but I can tell you we saw evidence of good changes within the first 24 hours. I wish we had just paid out of pocket and then submitted. We were knee deep in appeals with our insurance company and wasted way too much time. We ended up paying at the time of the procedure anyway and then submitting--

 

I would encourage you to at least get a date set for the procedure if that is what you plan to do and personally, I wish we had done it asap. If insurance will not pay, then borrow the money.

 

Practically, we did the following:Advil, my d is 75 lb and we would give 300mg about 2 or 3 times a day.

I called every day to the insurance case manager--many tears shed on the phone -- and there was a clear deadline by which they had to approve or deny.

 

Since there are a number of different doctors doing IVIG now, you may want to check with different ones as to where they are seeing insurance paying, ie., is your insurance more likely to cover it at a hospital setting (where you may not need pre-approval) or at an infusion center. Costs also vary depending on where you go.

 

Keep the faith -- if it is PANDAS, it will get better and it can be treated.

Edited May 28, 2011 by T.Mom