mom support

[laure]

I am a new member, and I so appreciate all of your feedback! I am wondering, as an extremely busy professional dealing with a PANDAS child now for just 2 short months, I am feeling like I can barely function in my job, just consumed with this issue and sadness over it. I've never used any anti-depressants at all, but take TONS of supplements to combat that and also exercise upwards of an hour a day to stay sane, (both routines of many years, because my job is stressful and I am trapped in it) so now what do I do to hold it together?? Already I am pushing the glass of wine in the evening to 2...large ones...

[airial95]

I can relate - I'm a full time working mom and senior staff at my company. I have felt consumed since our dx in January. The wine, diet and exercise are all good things to do, and I find that my exercise time gives me an hour or so of "mommy time" where I can clear my head. I've also arranged with my office to work remotely if needed so I can stay home with my son when needed, and also be more flexible for appointments and such. My company was willing to work with me on this, I'm not sure what you do, but just knowing I can have that flexibility if needed has been HUGE!

 

I can't speak for all of the moms on here, just myself - but there was definately a pattern to my stress, and I'm happy to say - it's gotten better- well, not better, but at least manageable!

 

When we first got our dx, I was consumed with research, reading everything and anything I could get my hands on. I was on these forums 24/7 (still feels like I am sometimes!) That lasted almost 5 months. One of the key things that kept me sane was my husbands insistance on reinstating "date night" at least once a week. We had lost sight of that a bit during the months before our dx because of all of the "crazy" and fear of leaving our son with the babysitter. So - he would arrange for the babysitter to come over when the kids were either in bed - or just about - and we'd go out for a drink, a walk, a quick bite to eat, whatever. But the point was, he got me out of the house and away from the computer and my obession with PANDAS at least once a week - to recharge.

 

As time has gone on, we've worked hard to get a good team of doctors together to help us on our journey. That has helped immensely, although getting the right team together was one of the most stressful parts so far. It starts with our pediatrician, who is a PANDAS believer and very supportive of any treatment options (he was the one to first dx us). Knowing that I can drag my son into his office for a strep test just because he's suddenly afraid of the rain (on a sunny day) and no one will think I'm a nutbag is really a load off! (True story - happened last month )

 

Now that we're at the end of all the tests/OT/Behavior assessments, etc that the rest of the doctors on our team wanted to run, things seem to be less hectic. We're still dealing with the "crazy" (as we call it) but the pace of shuttling from dr to dr and the pace of my research has slown down.

 

Another thing that has helped us, is as my son has gotten progressively better (or manageable), we started taking him places and letting him do things we wouldn't have before because of our fear of the "crazy". Some times it works better than others, but last week, when we took him to Chuck E Cheese with his best friend and he ran around and played like a normal 3 year old kid - with barely a glimpse of any PANDAS behavior - for the first time in almost a year, I seriously felt all the stress melt away.

 

Hang in there, and know that there's a whole group of us moms out here, surfing the web looking for answers for our kids, drinking our glass of wine (or 3 ) and we'll be here if you have questions, want to share, or just need to plain old vent!

[Sylvia]

Hi Laure,

I am new to this forum, but have been dealing with extreme behaviors with my youngest for over 10 years. When I tell people he used to swing from the chandelier, I am NOT using a metaphor, he REALLY did swing from the chandelier. And those were on the good days. But it is amazing how parents can survive such unusual circumstances. For so many years keeping my son safe has been my main objective. And it can wear you down. So I feel no guilt in taking time for myself when I can. I go on Girls weekends a couple of times a year. I get together with friends when possible, and my husband and I are able to get away for an evening once in a while too. And shopping for shoes and make-up on the internet also helps me

 

At this point, I am giddy with excitement to have hit upon something that makes him calm and happy (Amoxicillin). So I am focusing on a brighter future, and that helps too.

 

But do you what you need to get yourself through this. For some reason, so many mothers feel guilty for taking care of themselves. But do some thngs that make you happy whenever possible. I know that is easier said than done because who has any time anymore? But squeezing in some pleasures should be every moms rule, and especially to us moms dealing with such stress situations.

 

And whatever medical or nutritonal needs you may have, definitely address those. You will best be able to help your son when you are in tip top shape. I came down with CFS in 2005 after a viral illness. I couldn't believe it. I believe being exhausted contributed to me coming down with this. What really helped me was the Mito Cocktail of supplements; CoQ10, Acetyl L-Carnitine, B Complex and vitamins C and E. It has really helped to get some of my endurance back.

 

 

 

 

I am a new member, and I so appreciate all of your feedback! I am wondering, as an extremely busy professional dealing with a PANDAS child now for just 2 short months, I am feeling like I can barely function in my job, just consumed with this issue and sadness over it. I've never used any anti-depressants at all, but take TONS of supplements to combat that and also exercise upwards of an hour a day to stay sane, (both routines of many years, because my job is stressful and I am trapped in it) so now what do I do to hold it together?? Already I am pushing the glass of wine in the evening to 2...large ones...

[thereishope]

I wish I had a magic answer for you. I am the stay at home mom of my 3 kids and my son's PANDAS exacerbations were all encompasing to me. Looking back, it is an out of life experience and I have no idea how I did it. All I can suggest is to make a decision on what you want to share with co-workers. If you keep it to yourself, at least work becomes a place where you can at least pretend life is somewhat normal. If you are open to everyone that your son has an autoimmune disorder affecting his brain yet assure them you are still devoted to your job, you will at least have a few understanding people to vent to at work if the previous night was a bad one. If you feel you will require leaving work early and taking loads of vacation time, maybe open up to a selected few.

 

When you are at home, realize that you are only human. You have your family, a job, and even though friends and extended family are necessary sometimes, don't run yourself thin by committing yourself to long phone calls, visits, etc. Try to leave some time for yourself, even if it just means sitting on the couch after the kdis are asleep staring at the wall. Sometimes that quiet is gold.

 

 

 

I am a new member, and I so appreciate all of your feedback! I am wondering, as an extremely busy professional dealing with a PANDAS child now for just 2 short months, I am feeling like I can barely function in my job, just consumed with this issue and sadness over it. I've never used any anti-depressants at all, but take TONS of supplements to combat that and also exercise upwards of an hour a day to stay sane, (both routines of many years, because my job is stressful and I am trapped in it) so now what do I do to hold it together?? Already I am pushing the glass of wine in the evening to 2...large ones...

Edited September 1, 2010 by Vickie

[Fixit]

sorry you are here with us...

i stay at home with 3 kids under 10....dh has been gone all week...no break..potting training,not making the potty, homework,fighting...what is safe to eat....i lost it a couple of hours ago...

the current problem pan/pits have is that we, here, now, are on the cusp of the learning curve for this condition.(also the cusp of its acceptance)...many of us have been dealing with this in some fashion for many years..we are guiding the doctors sometimes as much as they guide us...it's not 90/10 split...not yet...more like60/40 70/30 80/20 in specific instances as we may have to even plead with some of the specialists to try changing their protocal, just a little to see if it works for you kid,...as we tell them of each of our current experiences/changes. aha moments....and it gets tiring being, full time anything and be residents in training(that's us)...and it's your child in crisis!!!

So i find 3-4 glasses of wine to be helpful and come here once in awhile...

Maybe, luckily for you...you are here in 2010...there will be so much advancement and understanding coming

We are going to get there!!!

[thomasmom]

sorry you are here with us...

i stay at home with 3 kids under 10....dh has been gone all week...no break..potting training,not making the potty, homework,fighting...what is safe to eat....i lost it a couple of hours ago...

the current problem pan/pits have is that we, here, now, are on the cusp of the learning curve for this condition.(also the cusp of its acceptance)...many of us have been dealing with this in some fashion for many years..we are guiding the doctors sometimes as much as they guide us...it's not 90/10 split...not yet...more like60/40 70/30 80/20 in specific instances as we may have to even plead with some of the specialists to try changing their protocal, just a little to see if it works for you kid,...as we tell them of each of our current experiences/changes. aha moments....and it gets tiring being, full time anything and be residents in training(that's us)...and it's your child in crisis!!!

So i find 3-4 glasses of wine to be helpful and come here once in awhile...

Maybe, luckily for you...you are here in 2010...there will be so much advancement and understanding coming

We are going to get there!!!

 

I really need to believe that we are all going to get there. Life is just really bad now. Big motor tics that make it hard for him to walk. Loud vocals that totally freak his teacher out. (and everyone else) I just got home from church where I talked to a woman whose niece was living with horrible TS most of her 18 years and is now suicidal. Tonight is a real downer. More wine please !

[mom md]

I also think it is important to control the things you can...your sleep, excercise, and what you eat. At least if you keep these things constant you are better off as the disasters hit. I also think talking to your doctor is important. Chronic stress can deplete your seritonin levels and consider a natural supplement like 5HTP or a RX SSRI can help. Wine is good too. Unfortunately this disease is a marathon not a sprint. I also think there is comfort in knowing you are not alone. We all get it. When someone reaches out with a cyber hug it really helps so reach out to others on your better days and lean on others when you need to.

[mandyknowles]

I am a new member, and I so appreciate all of your feedback! I am wondering, as an extremely busy professional dealing with a PANDAS child now for just 2 short months, I am feeling like I can barely function in my job, just consumed with this issue and sadness over it. I've never used any anti-depressants at all, but take TONS of supplements to combat that and also exercise upwards of an hour a day to stay sane, (both routines of many years, because my job is stressful and I am trapped in it) so now what do I do to hold it together?? Already I am pushing the glass of wine in the evening to 2...large ones...

 

 

I am sorry u are dealing with this...I own my own business and have been dealing with this for a year. I really dont know how I do it. I think that it would be easier to just stay home and take care of her and then I wonder how I will support her with all her meds and tests and such, so I keep going. I pray to god every single day that he will make this all go away, and I drink a few beers to take the edge off...Seems like thats all that helps me stay sane. So, take it easy on yourself and just keep going on day by day...You'll make it.