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This month marks one year for this hideous exacerbation. Abx, TCM, homeopathy, DAN!, methylation support, TrueHope...everything short of pex, T&A and ivig. All of them gave some small order improvement but with a quick plateau. His gut is 100 times better but still no school, anxiety and panic attacks ranging from 1 per day to 1 every few days. His quality of life is slowly improving and I can't say honestly that anything but time has really helped.

 

In the end, it will be the separation anxiety that kills me. I've looked repeatedly online for resources for sep anx in a teen and how to survive it as the parent they are on top of. I've been parenting for 23 years, so dedicated to these kids so having the feelings I have is foreign and so uncomfortable...and I'm ill-prepared for how to dig myself out of it. Does anyone else have this going on?...a burning desire to just get in the car and drive before there's nothing left of you? ugh. It's such a horrible disease. Any of you parents of the older kids, please feel free to offer some guidance to a mom that's going down fast.

 

Thanks a bunch.

 

I think we know each other from the other forum...? I don't have older kids but I am always shocked when I read something that is so earily similar to some of the thoughts I have had. I have told my husband several times over the last couple years that sometimes I just want to get in my car and drive away and not come back for a month. And guess what, one day over the summer I did just that (except i just went to my mom's, she and I got in a fight about whether or not my kids had pandas :angry: , and I was back home within 24 hours...sigh!). So unlike me to just up and walk out of the house, leave the kids with DH and just go, but I think a person can only take so much sometimes! I wanted to comment on what the other "mum" said, about getting to a good doc yourself. My levels, too, were way out of whack, vit d, mag, dhea, thyroid, blood sugar. this was after about 5 years of neglecting my self. I am feeling SOO MUCH better physically, in fact I just got off my antidepressant and am maintaining on 5HTP, and we too are still in crisis (gut stuff). I started doing yoga, too. My point to all this is that if you don't do these things you WILL crash. That's what it took for me to start making this a priority.

 

I see that you did the DAN protocol, just wondering if you have tried LDN? That is huge for my boys for pandas. Also, when DS6 recently had strep I tried some 5HTP to take off the edge and it did wonders for his moodiness.

 

Just some random thoughts...hope it doesnt' go against what you needed at the moment!

Edited by Stephanie2
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This month marks one year for this hideous exacerbation. Abx, TCM, homeopathy, DAN!, methylation support, TrueHope...everything short of pex, T&A and ivig. All of them gave some small order improvement but with a quick plateau. His gut is 100 times better but still no school, anxiety and panic attacks ranging from 1 per day to 1 every few days. His quality of life is slowly improving and I can't say honestly that anything but time has really helped.

 

In the end, it will be the separation anxiety that kills me. I've looked repeatedly online for resources for sep anx in a teen and how to survive it as the parent they are on top of. I've been parenting for 23 years, so dedicated to these kids so having the feelings I have is foreign and so uncomfortable...and I'm ill-prepared for how to dig myself out of it. Does anyone else have this going on?...a burning desire to just get in the car and drive before there's nothing left of you? ugh. It's such a horrible disease. Any of you parents of the older kids, please feel free to offer some guidance to a mom that's going down fast.

 

Thanks a bunch.

I know the feeling, like PANDAS is sucking the life out of you...

It seems you are giving all you've got in terms of treatment.

It is so draining, the mental stuff... They want you there, they want you to support them, their need is real, but you look at them and you know it doesn't make any sense. They know it doesn't make any sense, but they can't help it, and you can't help them, cause no matter what you say or do, it doesn't help. I HATE THAT. So frustrating...

My original PANDAS ds, now 13, is doing better now that we started Lyme treatment. My dd10 I'm pretty sure has PANDAS and/or Lyme, and we are seeing an LLMD on Friday. With her, the fears, the doubts, the tears, the depression, the constant need for reasurance is totally freaking me out. I don't want to do it. I keep shutting her off, I change the subject, I send her off to do something. I feel like I'm being a meany, but when I try to help her out, we just go around in circles, and I get very frustrated (maybe I'm a little PANDAS)

Well, I am not sure if this help you at all, other than misery loving company...

I see you've tried many things and I am not questioning your decisions, but a T&A might not be such a bad idea if progress is not significant. According to our doc, the tonsils can become an absess and then they just kind of block off the abxs and you don't get anywhere. She said they had patients on antibiotics for months and months without progress and once the tonsils were out, then the antibiotics started working.

 

Hope you feel better. You know you are not going anywhere. I do sometimes fantasize about a different life, but it's a waste of mental energy. It is what it is, and we have to make the best of it.

 

God bless,

 

Isabel

 

Isabel, you really nailed it. Exactly it. It was going to take me 25 years to get my 2 kids to age 18. I couldn't wait to be a parent, totally committed to it. Now 23 years into a 25 year job, I've hit the wall. I have so little patience for the insanity and it is the most thankless job on the planet. Thanks so much for taking a minute to remind me these may be horrible feelings but there is also a degree of normalcy in them...especially when you've been going at this as long as we have. I had to laugh at the "you know you're not going anywhere" part, probably right but honestly something has to improve soon. Thanks again!

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This month marks one year for this hideous exacerbation. Abx, TCM, homeopathy, DAN!, methylation support, TrueHope...everything short of pex, T&A and ivig. All of them gave some small order improvement but with a quick plateau. His gut is 100 times better but still no school, anxiety and panic attacks ranging from 1 per day to 1 every few days. His quality of life is slowly improving and I can't say honestly that anything but time has really helped.

 

In the end, it will be the separation anxiety that kills me. I've looked repeatedly online for resources for sep anx in a teen and how to survive it as the parent they are on top of. I've been parenting for 23 years, so dedicated to these kids so having the feelings I have is foreign and so uncomfortable...and I'm ill-prepared for how to dig myself out of it. Does anyone else have this going on?...a burning desire to just get in the car and drive before there's nothing left of you? ugh. It's such a horrible disease. Any of you parents of the older kids, please feel free to offer some guidance to a mom that's going down fast.

 

Thanks a bunch.

 

I think we know each other from the other forum...? I don't have older kids but I am always shocked when I read something that is so earily similar to some of the thoughts I have had. I have told my husband several times over the last couple years that sometimes I just want to get in my car and drive away and not come back for a month. And guess what, one day over the summer I did just that (except i just went to my mom's, she and I got in a fight about whether or not my kids had pandas :angry: , and I was back home within 24 hours...sigh!). So unlike me to just up and walk out of the house, leave the kids with DH and just go, but I think a person can only take so much sometimes! I wanted to comment on what the other "mum" said, about getting to a good doc yourself. My levels, too, were way out of whack, vit d, mag, dhea, thyroid, blood sugar. this was after about 5 years of neglecting my self. I am feeling SOO MUCH better physically, in fact I just got off my antidepressant and am maintaining on 5HTP, and we too are still in crisis (gut stuff). I started doing yoga, too. My point to all this is that if you don't do these things you WILL crash. That's what it took for me to start making this a priority.

 

I see that you did the DAN protocol, just wondering if you have tried LDN? That is huge for my boys for pandas. Also, when DS6 recently had strep I tried some 5HTP to take off the edge and it did wonders for his moodiness.

 

Just some random thoughts...hope it doesnt' go against what you needed at the moment!

 

Hi Stephanie, yeah that's me from the other board also. As a matter of fact I started both he and I on 5-htp today 100mg. Neither he nor I are on anything resembling an ssri, SAMe or methionine so there was nothing standing in the way and I keep hearing more and more about it. I'm just praying for no stomach upset which can be a deal breaker in a hurry for him. I've been reading the chatter about LDN too and the only reason I hadn't tried it yet was because of herx potential..the other big deal breaker around here, but I'm ready for a low and slow trial. We've got methylation well supported now. I've got Lyme on the brain right now as we've never had an Igenex test and the kid is no stranger to stomping around out in the woods, camping and 4wheeling with friends when i remission. Any idea how to find an LLMD in this area...tall order, I know. One more thing worth mentioning. We're on day 50 of zeolite drops for metals suspected from a couple really bad vaccs at 15 mos and 11 yrs. Everytime I try to ramp that dose to something close to normal he gets edgy. Currently we're getting 6-8 DROPS per day in. Since he'd been doing so well I took it to 10-12 drops on Saturday and things have been getting edgier by the day. Amazing. Some research has also found this zeolite has an antiviral quality and I'd bet my house that's what's tripping him. He is SO sensitive to antivirals. The OLE we take is as much for its antiviral qualities as abx and he takes less of that than your little guys do and can tolerate no more. I keep it up b/c I KNOW he needs this.

 

I don't have a DH...what I have is a PITAXH if that makes sense. He loves Gat but he has huge responsibility issues which gets him off the hook for research/caregiving/tutoring/advocating/etc. My 23 yr old DD is my lifeguard who occasionally pulls me out of the pool I'm drowning in. I'm hoping the 5-htp does it for me, I really don't want to go the ssri route. Regardless of meltdown, I've forced myself to the gym for an hour spin in the evening the past 2 nights. Very stressful but very necessary.

 

Stephanie thanks for all you do! Email me privately if you know the dosing schedule for LDN.

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Isabel, you really nailed it. Exactly it. It was going to take me 25 years to get my 2 kids to age 18. I couldn't wait to be a parent, totally committed to it. Now 23 years into a 25 year job, I've hit the wall. I have so little patience for the insanity and it is the most thankless job on the planet. Thanks so much for taking a minute to remind me these may be horrible feelings but there is also a degree of normalcy in them...especially when you've been going at this as long as we have. I had to laugh at the "you know you're not going anywhere" part, probably right but honestly something has to improve soon. Thanks again!

Man! And I'm only 15 years into a 33-year job (my youngest is a baby!)

I remember people saying that when they are little the job is very "physical" but when they are older it's more mental, dealing with teenagers and stuff, and it gets tougher. I couldn't imagine that being the case. I thought, give me a good night sleep and I can handle anything. Now I have to agree: the mental stuff is a lot harder to deal with!

But just like when they are little and you are exhausted and you think you can't handle another sleepless night, THIS TOO SHALL PASS! It will, hang in there! I keep thinking in 20 years from now hopefully we'll be getting together with our kids and just remembering the good stuff, they'll be thanking us for all we did for them, and asking us advice on how to raise their children... I dream of being a granma! :)

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