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Ds, 12, has been approved for IVIg, but we cannot get in for nine weeks. DS, has low IGG and has no strep antibodies. He has been suffering the ill effects of strep since he was an infant. He also is being treated for Lyme/Bartonella and is currently taking three high powered antibiotics. He is getting weary of taking the meds and who could blame him after almost two years.

 

Last night, right before bed, he had a meltdown, crying, depressed, saying Life is not worth living. Have to agree that his life is pretty suckish right now, joint pain, fatigue, nasal problems, few friends, depression, etc.

 

It is now summer vacation and we live in a rural area with few neighbors, no kids close by and I have to work because my insurance will pay for the IVIg when we finally get his turn. I am taking tomorrow (today) off because I feel my son is suicidal and do not want to leave him alone.

 

Do I call the doc and see if we our appt can be bumped up? We will be flying cross country, but I would do it in a moments notice despite the high cost. I do not view my son's issues as more important than any other kid with pandas, but I think without immediate help, we are in trouble. His dad and sister just are getting over strep and he just finished a steroid taper.

 

Sorry this is disjointed but I am tired, stressed, and worried as He~~.

 

Cobbie

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Cobbie,

 

I would ask to be put on standby; I'm sure people cancel. Update them of his status and your willingness to get him there with a minimum of X number of days notice. There are folks whose children are near the end of treatment that have IVIG scheduled but may not need it when the time comes. I think there is a good chance you could get him in early if you let them know your status and your traveling parameters.

 

I'm so sorry his suffering is so intense. Maybe the steroid taper will bring some relief or perhaps you could ask if it should be extended since strep is just leaving your home. Or do you think the steroids made things worse? It must be so hard to tell with all that's going on.

 

Prayers and cyber hugs to you both

 

Jill

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Oh, sweetie. I am so sorry. I can't even begin to imagine how difficult this is. You have kept everything together up until this point, and you are still doing that. Take a breath. Keep trusting your instincts. They are excellent. Yes, get on the cancellation wait list and see if you can get in for IVIG sooner. Make an appointment with any local immunologist that can see you quickly and see if there is any (slim) chance of getting IVIG locally somewhere. Make an appt with the pediatrician and get a few moments alone with the doc to express concerns about your DS's depression. Definitely do anything you can think of that you haven't already done (if there's anything left to try, that is). When he is out of earshot, you might want to call the suicide hotline and see if there are resources or things they recommend - knowing that your DS will be home alone this summer.

 

I don't know what you do for a living. Is there any chance of either you working from home for a couple of days or your DS joining you at the office? Maybe he could help out with a filing/organizing project, or read some books. If not, do you have enough vacation days to take a few days and do some day-trips with your DS to distract him? Maybe get some books on CD if you have a player in the car, and just take some drives - find the best diners within 100 miles or something? Are there any summer activities he'd be well enough to attend - maybe places he can volunteer to help out with some younger kids? I found that even when DS was at his sickest, he was still able to nurture mentor younger children. Not sure if your DS is even permitted to be around little kids with his immune challenges though.

 

I feel like I'm grasping at straws here. Sending virtual hugs and hoping your DS's mindset is improved with the new day. So very sorry.

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Cobbie,

 

I wish I had some more tangible help to offer, but still, just wanted to add another voice of support for you during this difficult time. Many of us here know firsthand what you're going through and while that doesn't help remedy your situation, diminish what your family is going through, or change the stress and other emotions you must be feeling right now, I hope it at least helps you to know that other people get it and are here for you to help you and your family through it (as we're helped by this community when it's us in crisis/distress). We're in a waiting for treatment mode here, too and it is getting increasingly frustrating. So hard to see your child continue suffering and losing periods of childhood when there's something that can be done but it's just taking too long!

 

I thought I'd at least mention that one of my two kiddos gets pretty tweaked from the steroid itself-- so while it generally calms the PANDAS symptoms while on it, we tend to see even more benefit shortly after stopping it. I don't know if you've done the steroids before to know how your child has come through it, but thought I'd mention it in case that possibility exists. I hadn't heard bigmighty's suggestion about Ibuprofen dosing following steroid before (adding it to my book for future reference)-- but my kiddos do get relief from Ibuprofen, so that might be worth a shot. It helps my dd's (12) mood issues considerably.

 

I hesitate to even suggest this to you when you're already overwhelmed because it sounds like even if you thought it might help your child it'd be a challenge for you to try this given the circumstances and timing, but... another thing that we find helpful (when the kids are able to handle it) is making life highly-structured and/or getting them involved in something that we know would typically be engaging or exciting for them (even if their current state prevents them from mustering enthusiasm/excitement for the idea). We try to find something they'd normally want to throw themselves into so once they get going it might "block out" some of the bad feelings or get them redirected and focused on something positive/pleasant. When we're in a spot that they can't get excited or interested in projects like that, but they can handle some basic routine or scheduling, then we just try to fill each day with one thing right after the next so at least there's no downtime (which tends to make things worse-- with nothing to do/think about but feeling badly). Also, my dd sometimes makes herself lists (or we make them together) of things she might do when she's in the "feeling lousy" state and/or she needs some distraction. She generally includes a range of activities; some related to her areas of interest/passion (when she's feeling well--obviously passion wanes when she's flaring) and some are just "keep busy" sorts of things. That way she has a variety to choose from and can fall back on the list when she can't get herself going on anything. Exercise really helps my kids, too. If they aren't in the state that they'll do it on their own, I try to find a way to get them moving. Sometimes I'll use excuses to get them going like, "The dog really isn't getting enough exercise so we need to take him out for a jog or a hike today." As a result (of desperation and this horrible waiting game)-- we now have an enormous new trampoline in the backyard! My dd sometimes says her aches, fatigue, etc. are helped by the activity, and it tends to help some with mood.

 

But, there are also times that they just can't handle activity, structure, etc.-- or even getting dressed for the day.

 

I hope you'll be able to get your son some short term relief and get the treatment date moved up.

 

Hang in there!

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One of the things that helped my DS when he was severely depressed about all the pills and the whole multiple disease issue (lyme+Pandas+pyroluria) is that we talked about people worse off than him. There's a girl in his school who's in a wheel chair. He has friends who have lost parents or have their own illness challenges. And then there are the "golden" children - the ones who seem to have the whole world at their feet and who don't seem to have challenges and say things that are incredibly insensitive to those who do have challenges. These kids just suck the life out of my son.

 

So we talked about sack races and how in the sack race of life, some kids only have their own feet in the sack. Others have small stones. And some, like my son and the girl in the wheel chair - feel like they have 10 boulders in their sacks. Then we compared the character traits of the golden kids to the boulder kids. And I emphasized how in general, the boulder kids are kinder, wiser and stronger. I played up the gifts that adversity brings. I talked about hardship stories of people my son could admire - Nicola Tesla, who had wicked OCD; Einstein, who was a horrible student; Wilma Rudolph, who won Olympic medals after overcoming polio. Yes, being sick sucks. But it helped my son to have his horizon broadened a bit, to realize he had plenty of company at his pity party table. And he had the benefit of knowing that his situation was temporary. His classmate is never getting out of that wheelchair but my son was going to be able to take boulders out of his sack one by one and be "normal" after we got to the bottom of things. he didn't wake up the next morning all smiles and sunshine. But it did sink in and it did help his resolve. It did give him perspective that there are plenty of people who'd trade places with him, despite his crappy situation.

 

The other thing that's helped is tryptophan, which helps seratonin and is a "natural" approach to treating depression. If mortin doesn't do the trick, it's something else to consider. It's helped my daughter immensely with her negative self-image and intrusive thoughts.

 

Finally, in addition to putting things in (motrin, steroids, tryptophan) make sure you do detox to help toxins come out (resveratrol, CoQ10 or alpha lipoic acid as anti-oxidants), binding agents, milk thistle...These things will help post-IVIG as well.

 

I know how hard this is. I hope you're able to move up your appointment and help your son hold on to hope.

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cobbie-

 

I am sorry you and your son are going through this.

 

Unfortunately it seems pandas families have to suffer so much, and in relative isolation.

 

However, if you are fearful of leaving your son home alone (and we have been in that situation b4- my kids were too young to be left alone at the time, but I know what you mean about the depression...) it is time to really consider this a family crisis. In a family crisis- it is time to call in all your support system and favors.

 

Call the doc, and tell them you are fearing for your child's safety due to the depression.

 

If at all possible, consider the family leave act at work, or at least tell them that your child is in crisis, and you will need to be able to take care of him.

 

Call in grandparents or aunts/ uncles or college age cousins to come spend a week at a time at your house to help you out.

 

If you have a spouse in the picture, tell him he also needs to sound the alarm at work.

 

I think you will find family, work and even strangers will rally around you if you ask for it.

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Cobbie,

We are stuggling too to find the answers...just starting treatment down the road. It is incredibly difficult to keep spirits up. I have decided to jump through less hoops. For example, today I decided we weren't going to jump through the school hoop....it causes me so much stress to send him to school and I can't imagine how he feels. So maybe see if there are some less hoops y ou can jump through. LLM, we also do the think of hte blessings you still have even though life sucks. What else can you do?

I believe that you will get in sooner....in 9 weeks someone might cancel. GOod luck.

Kim

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Cobbie -

 

I, too, have been in shoes similar to yours. It is so dark and scary and lonely. I agree with the advice you have heard from others.... Ibuprofen, detox, coQ10 have all helped. We also found help from inositol, but I don't know if you can do that with 5htp. Try to move up the IVIG if you can. Also - we had lots of emotional effects from steroids initially, though we saw some improvement in the end. And.. (as you likely know) make sure dad and sis are really clear of strep.

 

Have someone be with your child when possible if you cannot be. Take advantage of any friends, neighbors, family, church members, or anyone else you can trust to help you. I've learned to not hide my son's illness from people I can trust, and to enlist their help and support. It is amazing how much it helps for him to be away from me and with other people for a while during dark times.

 

Even though it is summer vacation, there should be someone available at your child's school to help you. Guidance counselors usually have at least part-time summer hours and if not, the principal may be able to help. See if there is a counselor or social worker or someone in the community that can help to guide you through this. The counselor does not necessarily need to have PANDAS experience. I found that counselors who never heard of PANDAS may be the best option because they are often more open than counselors who say they "don't believe" in it. I had a psychologist who really helped me to know what services were available when my son was in crisis, and that really helped us make a plan for him. I give counselors some one or two simple articles about PANDAS or PANS (the IOCDF PANDAS page may be good as it has information at multiple levels). Set up a network now in case he does not have immediate relief after IVIG.

 

And... in the middle of the night when you cannot sleep ... know you are not alone and there are many other mothers who are awake and working to get their children well. There are also mothers who are sleeping peacefully because they have gotten past the worst of it. I try to remind myself of that and keep my eye on the prize when the going gets tough.

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I can relate so much to your post. Unfortunately my dd12 has felt this way too many times it is so hard as a mom to hear your child no longer wanting to live. I've often wondered how long I would get to hold onto my baby in this world. Terrifying thought.

 

I would definetly ask to be put on a standby list for the dr for Ivig. Also, I should mention that when my dd was 10 and testing positive for Lyme, bartonella, and babesia she did a steroid taper and it caused the worst depression she's ever had. Literally had to pull her out of school and watch her out of fear of what she would do. Now (last Lyme and coinfection tests were clear) she just had Ivig and a steroid taper without any of the depression so far.

 

My heart goes out to you and your child. I will pray for both of you. Please know that neither of u r alone. We really do understand what u r going through.

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To make my 24 hour day complete, I just got a letter from the insurance company saying we are not approved. Not denied, mind you, but they do not see the medical necessity. This after the doc's office called to say we were approved. The letter is dated after the doc's office approval. Called the insurance company, they say it is not approved. Call the doc's office and the insurance clerk is out until tomorrow morning. I am just sooooo tired of all this.

 

Thank you for all of your wonderful and heartfelt advice. I will sift through it again when I have had some sleep and can think more rationally.

 

Cobbie

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I can so empathize with your frustration. My husband painted the perfect picture last night; we think we have some plan figured out or that it looks really promising and it turns out to be like sand flowing through your fingers. And it's gone. Just warm thoughts and a prayer is the only thing to offer in addition to what others have said. Dawn

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To make my 24 hour day complete, I just got a letter from the insurance company saying we are not approved. Not denied, mind you, but they do not see the medical necessity. This after the doc's office called to say we were approved. The letter is dated after the doc's office approval. Called the insurance company, they say it is not approved. Call the doc's office and the insurance clerk is out until tomorrow morning. I am just sooooo tired of all this.

 

Thank you for all of your wonderful and heartfelt advice. I will sift through it again when I have had some sleep and can think more rationally.

 

Cobbie

 

I'm so sorry to hear this. When it rains it pours.... I will continue to pray for you.

 

Our dr said ours was approved too. DD just had it done. It better be covered by the insurance. We can not afford to pay it otherwise. Who is your dr for IVIG? Surely there has been a mistake and it will be covered.

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Cobbie - I know this is the worst, most helpless feeling - my previously normal, happy DD8 became fairly suddenly suicidal. We took her to a psychiatrist - I think this would be really important to have your DS see someone in the interim while you are waiting for treatment. My DD is now being treated for Lyme, Myco, elevated Strep - we don't know what the primary trigger is (some form of PANDAS, Lyme, Myco) but I can tell you with antibiotics combo and low dose Zoloft (I didn't raise the dose like I was supposed to because I started to see improvement with abx) she is almost back to herself. It was very sad and scary (still is) to put her on Zoloft but we didn't have an option, we felt it was too risky to take a chance. The extra support of therapy is a huge help, and helps me with some of the pressure as I can call the psychiatrist for guidance if any issues come up and I know I am not alone. I am also taking DD for accupressure, it seems to be soothing to her. Not sure if that is an option but maybe it could help.

 

I also allow myself 10 minutes a day to feel completely sorry for myself, I told DD this and one day she said Mommy could you do an extra 10 minutes today, so we can do it together? It was very powerful, and I think allowing it to happen in a time frame allows a release but then helps you go back to fighting it, and gives you some control.

 

It's important for your DS to know, that his pain will get better. It may take time, but it will.

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