Post-traumatic Stress Disorder

[Stephanie2]

As my boys are getting better (and better and better), I am just sinking! I mean I was depressed when they were going through pandas and all the medication side-effects, but now I am really feeling the affects. I panic every time one of the kids has an "age-appropriate" tantrum or discipline issue. I panic when we go places where we have, in the past, had scenes and I have had to carry one of the boys out kicking and screaming. I panic when we are on a playdate. I am panicking that it is august (strep every year in august for the last 5 years). I panic when my son goes to indoor playgrounds. I am panicking b/c my husband's workload is increasing.

 

And when I say panic, I mean I have this fight or flight response (which may or may not be visible to those around me, I have this amazing ability to pull off the "I have it all together look" when I'm really crashing inside)that gets triggered that, on paper, just makes no sense. My boys are the healthiest they have been in years. I can take them anywhere pretty easily, yet I dread going anywhere with them. My husband is baffled by my behavior b/c he was not here for 90% of the violent episodes, etc. He is trying to be understanding, but his attitude toward me right now is not helping the situation.

 

I'm not really sure what to do with this. I have an appt with my sons' homeopath for next week, so I'm hoping she can work a miracle like she did for my boys, but I am also thinking maybe I need to look into some "exposure" therapy or CBT. Anyone know the best course of action? I have been down this road before, and I did come out of it in time (after a traumatic birth experience), but I really don't feel like waiting for the "tincture of time" this time around. I mean pandas could rear it's ugly head again and I need to be ready.

[dut]

hi - I too felt as though I had PTSD. We had lots of night issues when things were bad, and still do but easily manageable now, but for maybe 18 months the slightest sound at night would have my heart pounding out of my chest. I also find myself getting hugely angry with my dd when I shouldn't and feel it's my response to the intense fear that I feel if I see a new PANDAS like behaviour or surfacing of an old one and I really have to try and control the level of anger. Not always successfully. I'm a much angrier person now, lots held inside and am sure that's PTSD.

 

Time has seemed to help but it still feels as though it's just below the surface waiting to pounce again and although i've always been 'pleasantly' comely/chubby :-) I can't seem to keep my hands off food and again, I'm sure that's a response to all the emotional turmoil thats left and not dealt with....

 

I haven't done this but I suspect seeing someone to talk it out would be helpful. Difficulty maybe in finding a therapist that believes in PANDAS which for me would be a must. I think I'd find it even more depressing and stifling talking to someone who doesn't get it despite their professional attempt to seem like they do.. you can always tell, I think....

 

It isn't the big guns you need but I find that the Bach Flower Remedy called Rescue Remedy helps take the edge off sometimes..it could be placebo but it does seem to round the corners for me...

 

Are you near a PANDAS support group? Would talking about your needs/emotions with another parent, one-on-one, instead of PANDAS or the needs of your children/family help. I think we all, unbderstandably, get so caught up in our childrens' illness that we get lost on the way.

 

Hope you find a way of dealing with this as quickly as possible.

[Stephanie2]

hi - I too felt as though I had PTSD. We had lots of night issues when things were bad, and still do but easily manageable now, but for maybe 18 months the slightest sound at night would have my heart pounding out of my chest. I also find myself getting hugely angry with my dd when I shouldn't and feel it's my response to the intense fear that I feel if I see a new PANDAS like behaviour or surfacing of an old one and I really have to try and control the level of anger. Not always successfully. I'm a much angrier person now, lots held inside and am sure that's PTSD.

 

Time has seemed to help but it still feels as though it's just below the surface waiting to pounce again and although i've always been 'pleasantly' comely/chubby :-) I can't seem to keep my hands off food and again, I'm sure that's a response to all the emotional turmoil thats left and not dealt with....

 

I haven't done this but I suspect seeing someone to talk it out would be helpful. Difficulty maybe in finding a therapist that believes in PANDAS which for me would be a must. I think I'd find it even more depressing and stifling talking to someone who doesn't get it despite their professional attempt to seem like they do.. you can always tell, I think....

 

It isn't the big guns you need but I find that the Bach Flower Remedy called Rescue Remedy helps take the edge off sometimes..it could be placebo but it does seem to round the corners for me...

 

Are you near a PANDAS support group? Would talking about your needs/emotions with another parent, one-on-one, instead of PANDAS or the needs of your children/family help. I think we all, unbderstandably, get so caught up in our childrens' illness that we get lost on the way.

 

Hope you find a way of dealing with this as quickly as possible.

 

Yes! The way you describe the anger is me! I was never an angry person before. I, too, get so angry with my 6yo over trivial things. He even looks at me and comments, "mommy, stop getting mad!". I get angry with my husband, my mom, my family, the pharmaceutical companies. It's all coming to the surface now that it's (for now) over.

 

I tried Rescue Remedy actually, maybe it was a really bad day but it almost made me feel worse! I will probably give it another chance, though.

 

Am I near a pandas support group? I AM a pandas support group! LOL! Actually, I am currently a group leader in Florida but have completely neglected my "duties" there! I have to get back to holding meetings or pass it on to someone else. I have to say, though, I'm not sure if being around other pandas moms would be a good move for me right now cuz I just relive the experience over and over when I hear their stories and I am horrified for the children who are currently suffering. That's part of the reason I am not on this board much anymore. Emotionally, I just can't take it.

 

You make a fabulous point about therapists, and take it from me don't ever settle for one who doesn't know pandas. The last one I went to (a year ago when we were still knee deep) was very concerned that I was making up this illness, and/or making up the fact that my children had the dx (she didn't say it, but it was ALL OVER her face). She wrote down all the names of their doctors, and was very concerned about the boys' "biomedical doctors" and my insinuation that they were vaccine-injured. She was treating me like a crazy conspiracy theorist. She also told me to "not let myself become so emotionally involved when they are having their tantrums"...OH, REALLY?!) It was all too much and after two visits I never went back.

[Ozimum]

Hi Stephanie,

I'm right there with you! I've done the fortnightly sessions with a psychologist from before we went to a biomed dr and before we got the PANDAS diagnosis, so she got an education too! She was on board before the excruciating exacerbation that finally got us on the path to PANDAS. It helped me to have someone who would just listen and was able to reassure me that I wasn't losing my mind and that my anger came from powerlessness and sheer fear. I was able to lay it all out - what I had seen, the conclusions I had come to, the reading I'd done. It became a way for me to plot the course and have a sounding board...and that helped.

 

That said, it also helped changing our family doctor from the disbeliever to a GP who was also a homeopath and had done some biomed training. It was so reassuring that he "got" PANDAS. (He now backs up our Biomed dr.) He immediately cottoned on to the fact that I was NOT coping...(PTSD without the post!) He ran a batch of blood tests (V.low Vit D - surprise! surprise!) and gave me some supplements, some drops and a probiotic. That helped enormously! So yes...I reckon the homeopath is the way to go. Hugs to you!

[MichaelTampa]

I have had that. Kids tantrums certainly was not a trigger for me, as no kids, but had it from other things (kayak sinking, near drowning kind of thing). I know everyone's different, but your description of anger reminds me of the things my psychologists and I labeled "rage attacks" which were triggered by sometimes minor events of people doing things I didn't like, but what made me irritable/susceptible to them was exposure to fluorescent lights and/or wireless signals, as I had a real sensitivity to those things (have you considered that possibility for yourself?).

 

In the lyme world, that irritability would be looked at as bartonella symptoms and did get better with that type of treatment for me. In the PTSD world, I want to mention a nice, and unfortunately very expensive, book called "Explaining 'Unexplained' Illness" by Martin Paul. (If you are wanting to borrow it, that's possible, I believe I'll be roughly in your neck of the woods the week of Aug 15-19.) He proposes a new theory of disease for situations including PTSD, discusses a variety of supplements that can help, and also oxygen therapy. I got to the oxygen therapy another way and that person recommended the book, so the book does not really discuss oxygen therapy very much, although it might in a very geeky/chemistry kind of way explain why it would be so useful for PTSD. Breathing from oxygen concentrator for 2 hrs/day for about 6 weeks really helped me a lot (this was before any lyme treatment) in terms of being a little more grounded. For me, lyme treatment started soon after that. I had man psychologist-type treatments before the oxygen/lyme treatments, and they only helped for a day or so, and Paul's view (consistent with my experience) is that PTSD is chemicals raging out of control and any variety of psychologists treatment is not going to be sufficient until the chemicals are addressed.

 

Just tossing out some thoughts here, hopefully some are helpful, I know that out-of-control feeling can be tough!

 

Michael

[MMC]

I believe I have PTSD to a certain extent. When we first saw Dr Latimer a couple of years ago, she said it would not be surprising if I have some form of this. Mainly because I had PANDAS as a kid, got past most of it...but am now dealing with both children with PANDAS. It has really been hard at times. Especially seeing my DS suffer like he has and still is. DD symptom's have been around longer, but are more manageable. I have to remind myself to be thankful and hopeful, but the last 2 and a half years have been tough. And it is very hard to relay these feelings to family and friends. Only those with PANDAS, and PANDAS/PITAND kids know what it is like. I have both. But, I am certainly more aware to be thankful for the good things and times, simple things. I don't need much to make me content...just healthy children getting past PANDAS.

[michiganpandas]

i can totally relate....and yes, i think therapy would be helpful..and maybe your son's homeopath could help, too.

and you know i'm going to ask...but, since your son's are doing better...what type of treatment do they get (i know homeopath is specific for the person, but just curious about supplements you are using, vitamins, etc.) Also, are they on antibiotics? My daughter is not and I ALWAYS worry she should be on them.

again, you are totally not alone in how you feel....how could anyone NOT feel like this after our kids have suffered this much!

[ShannonOtown]

He Stephanie,

It's been a while since I have posted, but I check the forumns often for any break-throughs with PANDAS. My son is now 13 and doing pretty well. He still has some general anxiety and eye tics, but overall he is a pretty normal kid. Last year I decided to take him to a psychologist just to get him use to talking to someone about his anxieties and perhaps dealing with middle school pressures. He was not having any issues, but I was 'foreseeing' something bad happening, so I just wanted cover my bases. With 4 years of ######, you learn to prepare for the worse!

 

On our 4th visit with the psychologist, the doctor asked my son to leave and wanted to speak with me alone. He explained that my son was doing fine and was perfectly normal and could handle any situation that came his way. BUT that he thought I was dealing with PTSD! He understood I was always waiting for the shoe to drop and my POST PANDAS experience was stressing me and my family out. I was very set back from his comments, but left with a whole new perspective. It was true. My son was 85% better, but I was a mess. Waiting for symptoms, waiting for problems, looking for a new tic, etc. It was consuming my life. It was me who had to deal with the fact that things were OKAY. My son could not move forward until I could deal with the experience I went through with my son. The doctor explained I had been through so much panic and stress and unknown (there was so much unknown), that I was basically reliving the fears every day. It was the best slap in the face I could receive. I had to enjoy everyday without stressing about 'what if'.... and the quicker I realized what I was doing, the better I handled it. I never went to counceling, but it was an option. I think just realizing what PTSD is and how it can affect anyone is important. I'm glad you posted the topic.

 

Many parents on this board will have children that want to heal and move forward from their experience, but the parents need to heal before that can happen. I even find myself trying to break the habit from reading these post because it brings up so much pain, but it's such a part of my life that will never go away

 

I hope you can focus on your healing, since I know it will in turn help your family. It has made a huge different with mine. Take care. Shannon

[Stephanie2]

I have had that. Kids tantrums certainly was not a trigger for me, as no kids, but had it from other things (kayak sinking, near drowning kind of thing). I know everyone's different, but your description of anger reminds me of the things my psychologists and I labeled "rage attacks" which were triggered by sometimes minor events of people doing things I didn't like, but what made me irritable/susceptible to them was exposure to fluorescent lights and/or wireless signals, as I had a real sensitivity to those things (have you considered that possibility for yourself?).

 

In the lyme world, that irritability would be looked at as bartonella symptoms and did get better with that type of treatment for me. In the PTSD world, I want to mention a nice, and unfortunately very expensive, book called "Explaining 'Unexplained' Illness" by Martin Paul. (If you are wanting to borrow it, that's possible, I believe I'll be roughly in your neck of the woods the week of Aug 15-19.) He proposes a new theory of disease for situations including PTSD, discusses a variety of supplements that can help, and also oxygen therapy. I got to the oxygen therapy another way and that person recommended the book, so the book does not really discuss oxygen therapy very much, although it might in a very geeky/chemistry kind of way explain why it would be so useful for PTSD. Breathing from oxygen concentrator for 2 hrs/day for about 6 weeks really helped me a lot (this was before any lyme treatment) in terms of being a little more grounded. For me, lyme treatment started soon after that. I had man psychologist-type treatments before the oxygen/lyme treatments, and they only helped for a day or so, and Paul's view (consistent with my experience) is that PTSD is chemicals raging out of control and any variety of psychologists treatment is not going to be sufficient until the chemicals are addressed.

 

Just tossing out some thoughts here, hopefully some are helpful, I know that out-of-control feeling can be tough!

 

Michael

Michael, i dont' know if i'm sensitive to flourescent/wireless, but i certainly minimize these exposures for all of us around here. Also, i think we talked about the PTSD/lyme connection before and i would assume is a factor in my case (I have several reasons to believe lyme is a factor for myself and my boys). I will say, though, that antibiotics/herbs are a no no in my house right now due to the problems we have had in the past with them. With that said, it is a good reminder that really this probably has to be approached medically as well as psychologically, and unfortunately with time (i'm just not all that patient!).

[Stephanie2]

i can totally relate....and yes, i think therapy would be helpful..and maybe your son's homeopath could help, too.

and you know i'm going to ask...but, since your son's are doing better...what type of treatment do they get (i know homeopath is specific for the person, but just curious about supplements you are using, vitamins, etc.) Also, are they on antibiotics? My daughter is not and I ALWAYS worry she should be on them.

again, you are totally not alone in how you feel....how could anyone NOT feel like this after our kids have suffered this much!

 

I am using a classical homeopath who is very successful within the autism community, so my boys each get their own constitutional remedy. I also have them on several supplements from our biomed days: vit c, magnesium, calcium, culturelle, Juice Plus and a tiny bit of melatonin for one of my boys to make bedtime easier. Before homeopathy they were each on 25-30 meds/supps. I am astonished by how I have been able to DC these and still acheive better results than before with their one remedy.

 

My oldest has not needed any antibiotics in over 6 months (no prophylactic either) and my youngest has not been on antibiotics for over 4 months. And they have both had strep during that time, their remedies got rid of it (I have before and after cultures!). Amazing, really. Life changing for us.

[Stephanie2]

He Stephanie,

It's been a while since I have posted, but I check the forumns often for any break-throughs with PANDAS. My son is now 13 and doing pretty well. He still has some general anxiety and eye tics, but overall he is a pretty normal kid. Last year I decided to take him to a psychologist just to get him use to talking to someone about his anxieties and perhaps dealing with middle school pressures. He was not having any issues, but I was 'foreseeing' something bad happening, so I just wanted cover my bases. With 4 years of ######, you learn to prepare for the worse!

 

On our 4th visit with the psychologist, the doctor asked my son to leave and wanted to speak with me alone. He explained that my son was doing fine and was perfectly normal and could handle any situation that came his way. BUT that he thought I was dealing with PTSD! He understood I was always waiting for the shoe to drop and my POST PANDAS experience was stressing me and my family out. I was very set back from his comments, but left with a whole new perspective. It was true. My son was 85% better, but I was a mess. Waiting for symptoms, waiting for problems, looking for a new tic, etc. It was consuming my life. It was me who had to deal with the fact that things were OKAY. My son could not move forward until I could deal with the experience I went through with my son. The doctor explained I had been through so much panic and stress and unknown (there was so much unknown), that I was basically reliving the fears every day. It was the best slap in the face I could receive. I had to enjoy everyday without stressing about 'what if'.... and the quicker I realized what I was doing, the better I handled it. I never went to counceling, but it was an option. I think just realizing what PTSD is and how it can affect anyone is important. I'm glad you posted the topic.

 

Many parents on this board will have children that want to heal and move forward from their experience, but the parents need to heal before that can happen. I even find myself trying to break the habit from reading these post because it brings up so much pain, but it's such a part of my life that will never go away

 

I hope you can focus on your healing, since I know it will in turn help your family. It has made a huge different with mine. Take care. Shannon

 

Shannon, i think your psychologist is absolutely right and believe it or not my sons' homeopath said the same thing and this is something that I am trying to convey to my husband: these kids really can only get as well as the weakest link in the house. My boys are absolutely not going to be 100% until I am 100% and I know that. Part of the remainder of their healing is going to depend on my now dealing with this PTSD with the same intensity that I dealt with their pandas. AND to add to that, i also think that my husband and I need to then go back and work on the collateral damage to our marriage. There is no way a child can feel whole when a husband and wife can hardly recognize each other anymore. Honestly, I thought that managing pandas would be the end of this journey and it so is not. Living down here in Florida, i always liken it to hurricane season. You can "hunker down" for the hurricane and you can jump for joy that you survived when it's over, but that's just the beginning. There is cleanup to do in the aftermath - and while the hurricane only lasts a few hours, the cleanup can last weeks. And when you've dealt with hurricane after hurricane for 5 years with no time in between to clean up, well you get the picture. What a mess!

[smartyjones]

stephanie2 -- i can't so much compose a coherent post about this right now but wanted to say i'm right there with you!! how ridiculous, right? your child is doing well and you're still a wreck. or a different kind of wreck. it seems unbelievable.

right now, i'm rather emotional b/c we are moving and it's generally stressful -- along with a glitch last week with buyers and dh had emerg appendectomy - but i'm emotional saying good-bye to this house where my boys were such sweet little babes. and feeling remorse the last 3 years have been tough.

 

i have found help with upsets/outbursts of my own and panic and indifference with the remedy sepia. maybe check it out or discuss with the homeopath - ?

Edited August 8, 2011 by smartyjones

[butterflymom]

=

Edited October 7, 2015 by tampicc

[writergal]

Hi Stephanie,

 

My thoughts and prayers and empathy are with you. I'm brand new to this forum and in learning about PANDAS. We have a wonderful doctor in Chicago area that is helping us to figure out whats going on with our son - and after 7 years -NUMEROUS treatments I think we're on to something with the PANDAS. And I definitely get what you are feeling. I'm tired of doing the next therapy and as excited as I am about feeling like we finally have an answer I'm also tired- and I know that I need to shore up and get ready for this next onslaught.I personally see a ND that specializes in digestive enzymes and she has helped me tremendously- she's also a pastoral counselor and has helped me personally deal with the stress and my own PTSD.

 

Julie

[Joan Pandas Mom]

Hi Stephanie. I'm there too with the PTSD. My son was doing great for about 6 weeks and I think I finally was able to "let go". I am struggling with depression and anxiety too. I'm trying to force myself to exercise and eat right. I'll let you know if I find anything that works--one day at a time.