Must update you

[FallingApart]

I have been on the boards for over 4 1/2 years. I've learned so much, tried so much, have enough bottles to open my own alternative medicine store.

 

We've done ivig, plasmapheresis, and are now at this point doing both MD and ND mix of treatment.

 

Within the last month I've had a bit of a breakdown. As much of a breakdown as a mother of a pandas child is able to. But I've stopped being able to remember things, am unable to answer questions, can't stop crying, can't poop, and can literally feel myself closing in on myself. To keep the story short, I've been recommended to a trauma counselor. I've realized that I had a very traumatic childhood and my dd needs are calling up all the trauma from when I was a kid.

 

I'm telling you this because I've always wondered why I've watched the other kids heal and mine only goes thru ups and downs. And the ups aren't that "up". I believe my issues are holding her back. I'm smart enough not to beat myself up over this. At least yet. But someone else out there could be in the same boat. I've also found I'm one stage away from Addison's disease which is adrenal failure. I have a lot to work on

[LNN]

Whether it was mid-life crisis or Pandas that triggered it, I had what I affectionately call my nervous breakdown 2.5 yrs ago(Oct 2010) - 2 yrs into Pandas (2008)- so you survived longer than I did!

 

Everyone will tell you to take care of yourself as you try to hold your family together. Our family therapist repeatedly told me to carve time out for myself and for my marriage. I knew she was right but it just didn't seem practical at the time. It got so bad that close friends were very worried. I was making mistakes left and right. I crashed - and it took a good 6 months for me to go from numb to semi-functional. Now, I can finally say I'm in a good place again.

 

I'm glad your getting help and that you're trying to break the cycle. I hope you're able to make sustainable gains and find true healing!

[pr40]

it's possible that you have an autoimmune problem at least somewhat like PANDAS. these things run in families and their symptoms might be different at a different age.

You may want to start with a complete blood work and go from there if you haven't done that already.

Courage! (as Italians say)

[filinha1]

I was describing how I felt to a friend recently, the mom of an autistic daughter who understands life in the trenches, and she said "It sounds like you have PTSD." I bring this up only as one more example that you're not alone in your coping response.

 

You're brave to step up to the plate to heal yourself and to bring it to the group as a red flag that may help others. Good luck on your journey - I wish you the best.

 

Heather

[beeskneesmommy]

I often describe myself and the other PANDAS moms that I communicate with, as having PTSD. To watch your child fall apart while battling for his/her life, simultaneously being somewhat abused at the very least by omission of understaning and belief from the the medical community, family and friends, is most certainly traumatic! I remember times when I simply felt like I might go off into a frightening place in my mind and perhaps not return. I am so very sorry that you are not gaining as much ground with your kiddo, and that you are having medical issues in addition to what sounds like current trauma. It does however, seem as if a major medical work up might be in order for you. In addiiton, do you have someone that would be willing to give you some reprieve...a little rest during this time?

[T_Mom]

I wish I could say it was PTSD...but I thought I had that 4 years ago....with the very first episode!

 

Now, I would characterize the whole experience as Continuing-PTSD...

It is horrid.

FallingApart--you are not alone. We have experienced what you describe, so many of us--

Yes, try to get some respite somehow, even if it is only time to cry in the car -- (which I have started doing this month almost daily.)

 

This IS hard, hard and dark, and a horrid illness.

 

What I do is often remind myself that children have gotten better from this--that it is researched and that many, many parents will attest that there are treatments which bring their children back--and then hold on to HOPE.

And pray.

[mar]

I know how you feel. J feel like I am not the same person I was 4 years ago!! It doesn't help that DH tells me you are a walking stress bomb!! Thanks a lot of my stress was because of him not helping me deal with this and thinking I am crazy!! I complete have PTSD. This is hard and I heard the same stories of you are the strong one in the family but how strong can one be at times. I feel like I am going nuts. I used to cry every night and pray for my child to get better. I have not shed tears in a while. I think I am numb. I have dealt with children and diets and DH not agreeing or not listening and then going through episodes. And then he turns around and looks at me like I am crazy. Our marriage is falling apart! I have ds you is sick of the arguing and DH who grew up with the same issues looking at me like I am crazy one minute but then agreeing for a coue of things but then starring ag me and wondering what I do and say. I liturally feel like he is a third child. Yes j feel like I have had and will have another nervous breakdown only to hear from DH the day before mothers day that you are a nervous wreck!!! He tells me you stress about everything!! Really!! This is hard very hard but we need to stay strong!!!! this is tnd Dad who three years ago would get mad that ds is ticking. He would tell him to stop. He had same issues as a child. This iz sad but I look at DH with no love. I feel like I don't even know him anymore. When ds or dd is doing better he is fine but when things go haywire he stares at me and expects me to fix things. I am tired and warnedr out and yes when things go haywire I am stressed!! How can he think I will not be stressed! I feel for all you moms out there. The only think I have to say is that we have to be strong!! I don't want to hear it from ones who don't get it but us here dealing with it have to realize and continue to be strong! I pray that your kids get better and you continue to find that strength!!!

Mar

[mdmom]

Have you considered that you may have infections as well that may be causing your symptoms?

 

One of the best things my DH and I did was to be evaluated and tested by our children's LLMD/PANS doc. She found Mycoplasma, Lyme, high EBV, Brucella, and clinically treated us for Babesia and Bartonella since we had symptoms and our children tested positive.

 

Prior to treating (and we are still treating after 2 yrs), my DH was angry and at times very sad about our son's psychiatric state and I was treated for anxiety and depression before we treated for infections. Doc also uncovered thyroid disease in me and treated aggressively.

 

Is it a financial burden to be treating the entire family? Absolutely. But worth every penny b/c my DH and I are able to stay emotionally strong and see things clearly since our own psychiatric symptoms are gone.

 

Also, when you said your child isn't fully healing and you feel like your "issues" are holding her back - have you considered the fact that you may be sharing infections? Our LLMD/PANS doc said that many docs that really understand these weird infections that our kids deal with are finding that no one in the house gets well until everyone in the house is treated. Perhaps someone is a carrier in your house?

 

Hope this helps. Hang in there and be good to yourself. We all get it here on this forum.

Edited May 12, 2013 by mdmom

[philamom]

Sending you a big cyber hug on this special day. Hang in there.

[FallingApart]

Mdmom, tha is a good point and one that I am starting to consider again. I have Lyme confections and treated dd and myself for Lyme for over a year. We didn't see any improvement. However, during my current breakdown, our ped told me my pandas is causing a lot of problems with dd. that is the first she had ever saiid that. It's interesting to hear you say it is as well. I have no bw to support that I have pandas. I'm not discounting it, I'm just blown away.

 

Our family is perfectly willing to treat the entire family. What does that entail. Abxfor life? Or more?

[tpotter]

Have you considered that you may have infections as well that may be causing your symptoms?

 

One of the best things my DH and I did was to be evaluated and tested by our children's LLMD/PANS doc. She found Mycoplasma, Lyme, high EBV, Brucella, and clinically treated us for Babesia and Bartonella since we had symptoms and our children tested positive.

 

Prior to treating (and we are still treating after 2 yrs), my DH was angry and at times very sad about our son's psychiatric state and I was treated for anxiety and depression before we treated for infections. Doc also uncovered thyroid disease in me and treated aggressively.

 

Is it a financial burden to be treating the entire family? Absolutely. But worth every penny b/c my DH and I are able to stay emotionally strong and see things clearly since our own psychiatric symptoms are gone.

 

Also, when you said your child isn't fully healing and you feel like your "issues" are holding her back - have you considered the fact that you may be sharing infections? Our LLMD/PANS doc said that many docs that really understand these weird infections that our kids deal with are finding that no one in the house gets well until everyone in the house is treated. Perhaps someone is a carrier in your house?

 

Hope this helps. Hang in there and be good to yourself. We all get it here on this forum.

I am going to ditto this. I was the one carrying the mycop, and everyone in my house has/had lyme, bartonella, babesia, etc. Unfortunately, DH had to stop tx with abx, because he is on coumadin, and we are not certain how to get this treated at the moment (anyone have ideas...please help...his IgG for mycoP is extremely high IgM is borderline very high, I can't get rid of my IgM, and I seriously doubt his lyme, et al is gone.) DS20 also can't take abx, because of recurrent c-diff. So, everytime he comes home from college, DS17 flares up. I can't stress enough to make sure you, and everyone in your family are not also sick. Although I have my moments (the kids laugh about "Moody Mom", I am nowhere as stressed as I was a few years ago before we found the mycoP, and then the lyme.

 

Huge Cyberhugs on this very, very special day.

[tpotter]

Mdmom, tha is a good point and one that I am starting to consider again. I have Lyme confections and treated dd and myself for Lyme for over a year. We didn't see any improvement. However, during my current breakdown, our ped told me my pandas is causing a lot of problems with dd. that is the first she had ever saiid that. It's interesting to hear you say it is as well. I have no bw to support that I have pandas. I'm not discounting it, I'm just blown away.

 

Our family is perfectly willing to treat the entire family. What does that entail. Abxfor life? Or more?

From our perspective, what has helped us the most is working with an LLMD to treat the whole family, and also doing alternative treatments, such as chiropractics (with a holistic chiropractor who does muscle testing, and also treats with some homeopathy and supplements), and ART. ART has told us a lot more about what we are actually dealing with in our family, because they can test for different things by energy testing (so we know, for instance, that DS has strep still in in kidney...never knew that...still dealing with bartonella...thought it was cleared, parasites, mycoP, etc.) If you want more info about ART, PM me, and also let me know where you live. It is expensive, but I think we are getting quite far with it.

[JuliaFaith]

tpotter--Ditto on the ART (muscle testing). My son is not there yet, but would not be as healthy as he is without the ART testing done almost monthly to see what his body needs. Was a bit bizarre at first, but now with blood work confirming ART testing, I am a firm believer in a highly trained ART doctor!