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What is wrong with me....


Lydiasmum
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Hello everyone,

 

Just wanted to share with you all how I feel and hope I don't sound too selfish. Right now my daughter is 85%(ish) good and has been for 2 months. Instead of enjoying her and thanking god we are not in the awful crisis we were last year, I am constantly listening/watching for every 'sign' that she is going to relapse and go back to that awful place. Every time I hear her get out of bed I wonder what day we will have, every time she over-reacts (hello!!! She is 5!!) I wonder if we're

sliding. It's taken over my life even though others (namely my DD and DH) seem to be getting on with theirs around me.

 

When I am not watching DD during the day, or worrying about her at school, I am constantly researching on line in the evening trying to fix her. Truth is, she relapses mildly on and off, waxes/wanes - and what is it with 3 months??? Our huge issue is severe motor/vocal tics plus mild OCD and anxiety. You can't be diagnosed with TS if you have had more than 3 months without tics. We get to 3 months, but never past this timeframe. I am now obsessed she hasn't got PANDAS but TS+. She is currently on prophylaxis abx (since August).

 

I just can't remember what it's like to be normal. I know I have to get on with life but don't know how to any more.

Can anyone else relate? What can I do??? Any tips/advice/reassurance most welcome. Sorry to sound so negative, but my thoughts are so consumed with it all (and this is not how I was before this hit our family!).

 

Thanks for reading...

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I can't give you any tips as it seems I'm in the same place. Your story will help many though; to reaffirm that we all go through these emotions at one time or another.

 

My story is a long one as we've been managing this PANDAS (morphed to PANS) for a long time. We were flare free for well over a year until this past September when things came barreling back.

 

It's a brutal phenomenon. Having some really good stretches almost makes it more painful when the symptoms return. So we live our own lives in a constant state of anxiety. I know the pain. I find myself losing my own ability to cope sometimes. I feel literally wounded all over again with each flare.

 

I do know that over time, when you start to have more good days than bad, our own memories have a way of erasing the pain. During our "remission," I had almost forgotten how severe the episodes were. It happens slowly. You let your guard down a little. You find yourself watching a tv show! You may read a book that has nothing to do with health or the brain. It is a good feeling and you will get there. It just takes time.

 

I think the best advice someone here gave me was to journal. It does help keep perspective and it helps us know that this life is a journey. With children in general - once you think you have them figured out -- it changes all over. This is true even with my non PANS son. I can manage things, and do my best but ultimately I can't control. But we'll be okay no matter what.

 

Tonight we are coming off a pretty big flare. DS said his "brain was back." He's so excited. I'm so thrilled. But yet, here I am on this board. I want to keep him that way. I want a manual. Sadly, we'll have to create our own.

 

I know exactly what you are going through.

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Many of us have been there. Really, it's PANDAS Parents' PTSD. The trauma of the roller coaster upon whom our dearest children are riding, is heart rending. In addition, the trauma of being treated poorly by the medical community at times...and having to work every waking moment to get help for our kids, facing unsympathetic family and friends, really takes its toll. I remember when my son was very ill - the dark days - and I am amazed that I made it thru with so little support.

 

Find the positive and cling to it, get support where you can - ask for it! get into counseling if you can, watch yourself carefully for signs of clinical depression and take the necessary steps to deal with it. It is so hard, I know, but if it is possible, get away for a weekend with friends or spouse..or even for a dinner out!

 

Remember, you are not alone. Also remember that many kids pull thru, despite being very, very ill during some of the journey. Mine is one. Warm wishes and kind thoughts to you and yours.

 

Kath

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Personally, I think it was the HOPE that my ds was 100% cured, and that he/we would never have to go thru that again that did the most damage to my psyche. It took 4 flares, about 1 1/2 years of it to bring me to the point of resignation. When I got to that point, it was actually a relief. Instead of wondering "if" he was going to flare, I moved to a place of wondering "how bad/how long" it would be. Over time, I at least gained confidence that he would recover from each episode. I remember the state of mind that you are in. Truly. I think that is the worst part, and not healthy. Sitting on pins and needles, reading the internet until all hours of the night, going into a sheer panic everytime my ds expressed anything close to a Pandas symptom....it can drive you crazy. Your child will episode again. All your worry will not change that. The fact that you are on this forum, and treating him will. Stop fighting the inevitable, and you will find relief when you embrace the truth. Episodes will happen again, and you will indeed get through it.....

 

:):blink::unsure::(:angry::)

 

p.s Not a thing wrong with you

Edited by qannie47
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I am in a very similar state you are in... We are in a good place but the constant worrying I do is debilitating. We seem to be having mini symptoms... One bad OCD night... then nothing OCD after. Increase in tics for a few hours, then nothing... I've started asking her and she mentioned low OCD for now and the tics are not bothering her. I can't ask for much more but I want this nightmare to end.

 

You are not alone... It's finding a new normal that will help. I try to be thankful for the little things... Which can be hard. good luck and know you are not alone.

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You are not alone at all! To think back of opening my eyes every morning and rolling out of bed and wondering if I could do it and have to to it and thinking how am I going to deal with this again and wanting to cry and locking myself in bathroom to cry it out so I can come out and continue. Researching for hours and hours and as a mother that fight is there even though it is so hard. I had no help and support. It was me against helping my dear boy. It does get better once to see improvements and you kind of know what could be the cause. You learn and you know so much more as they get older. Ds who is 11 walked into my room in the morning and said his lips are bad which makes him open his mouth which made me panic but got up has his eos and now that he has been eating pineapple which hasn't had in years and look at him and tell him it's okay and put this on cut back on that and he is fine. Hang in there!! Be strong they need us!! And you are not alone!!

Mar

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If it is ts you are worrying about then try to remember your child before this nightmare began. I think one of the major differences is sudden onset after illness. Was there a sudden onset of vocal and motor tics? Was your child ill or did she have vaccines prior to onset? Also the fact that she is at 85% after treating with antibiotics is also a sign that leans toward pandas not ts. I know it is not easy. I lost over fifteen pounds in a month when my son was at his worst. It is not healthy. I was also consumed with worry and if he gets bad again I may spiral down again as well. I definitely know the feeling. It is scary sending them to school not knowing what illness is going around. Our pandas doctor is wonderful, she always makes me feel better. She says that a lot of her pandas kids outgrow this at puberty as the bbb strenghtens. This gives me hope that this won't last forever. I just pray every night for healing. This also makes me feel better. I hope you can find some peace soon. A glass of wine before bed has also taken the edge off for me as well.

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You are sooooo not alone! I constantly stalk the net, watch for any change in DS5, nit-pick every detail of this poor child's life. There aren't many moments in the day that PANDAS doesn't consume me. I shelter him from other children, I get angry when friends children are ill and the parents don't have them in a bubble - how dare you send your kid to school sick! I feel like this is a huge lesson in surrender for me. I'm certainly not there yet.

 

I feel like I need to surrender to the dx. I cant change PANDAS. I don't have a cure for PANDAS. I need to do as some of the other members say and remember the good, remember what he is like when not in a flare. Prayer helps me, and I don't do that as well as before either.

 

I feel your pain. You are not a Debbie downer...I hope only for the very best for you and yours!

 

KK

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We have all been there - waiting for the other proverbial shoe to drop. I know how it feels. The thing that helps me the most during these times is to go back and look at my logs/journals from the past. It gives me an instant pick me up that we HAVE come so much farther than I give us credit for sometimes. If you're not keeping logs/journals of their daily symptoms, I highly recommend it - it can help with treatment plans/options, letting you know quantitatively what is working/what's not, it can help you and your doctors see patterns in flares, etc... but it can also be very helpful in giving you that boost of self esteem when you need it most to see just how far you have come!

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All of these feelings are so true. Every morning my husband and I give a report on how our DS woke up and got ready for school. It is like the weather for the day, sunny, partly cloudy or a storm brewing. I have put some time limits on my research, read for pleasure and started walking everyday again to nurture myself and fill back up. I know I need to address gut issues and methylation. For now though I need a breather, I try to enjoy the good and spend time with him knowing that laughter also heals the immune system too. You are not alone. Hugs!

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