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First, let me say that I know I am lucky. My son (age 5) was diagnosed with PANDAS less than 3 weeks after onset of symptoms. He is being treated by Dr. L and we are seeing Dr. B for a consultation next week. He has come a long way, but still is not completely symptom-free. I have spent so much time on this forum reading others’ experiences and stories and my heart breaks for all of our children (and for us parents too). This forum has been the only thing that has kept me sane through all of this.

 

But today I am really mad – I hate PANDAS so much. I hate that I watch every move my son makes and I live in fear that a new symptom is going to appear. Last week when I was taking my son to preschool he told me he was going to miss me while he was in school – I immediately felt panic – this wasn’t like him, he normally does not say he is going to miss me, he just jumps out of the car excited to be at school. He ended up being totally fine about going to school – he jumped out of the car happy and went on his way to his class. I ended up being mad – four months ago I would have thought him telling me that he was going to miss me was so sweet. Now instead of being touched by his sweet words, I felt fear. Today I yelled at him because he didn’t want to eat his food (his applesauce “didn’t taste right” and his turkey was “slimy”). The rational side of my brain knows that I put his Florastor in his applesauce for the first time and didn’t stir it well enough because I was trying to sneak it in without him noticing and I also know that getting him to eat turkey has always been hit or miss. But, my immediate reaction was wondering whether he is having issues with food now and I over-reacted when he wouldn't eat his food.

 

I lost two babies before I had my son (turns out I have a blood clotting disorder). My entire pregnancy with my son (and also when I was pregnant with my daughter) I lived in fear that I was going to lose them. I couldn’t enjoy my pregnancies. Now, today, I feel like I am being robbed of letting my kids be kids. Kids can have quirks, they can be in a good mood or a bad mood, they can decide they dislike the food they loved yesterday, and they can miss their mom when they go to preschool. I know not everything is a PANDAS symptom. I just live in fear that I am again going to wake up one morning and my child will not be the same child that I put to bed.

 

Sorry for the long and depressing post – I just needed to vent to those who would understand what I am trying to say. I am sure tomorrow I will have a better outlook – today has just been a rough day.

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I'm so sorry you are having a hard day, but so glad that you wrote this because I feel *exactly* the same way. All in all my son is doing well, and I know so many people are dealing with much worse, but it is SO hard trying to deal with this. I, too, find myself thinking that everything is a symptom. And I feel like there is no one I can talk to about it because my friends just don't understand. Anyway, I don't think it makes it any better, but I understand where you are coming from. Hang in there.

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mpatti-

 

Both of my girls have pandas- so I can really relate to what you are saying.

 

All I can say is that it gets better.

 

First of all, there is a grieving process- there is no way around it. But you will be sad, and angry, and then you will accept ( not accept pandas, but accept that you have to deal with this). It will not be easy, will not be linear- but you will be in amuch better place.

 

You will also learn that you, and your child are not helpless. You will treat this medically, and you will also hopefully learn psych tools. You will see your child beat this, maybe more tha once. You will find courage in their and your strength.

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I'm certain we've all been there. I used to live in absolute fear. I'm better because my son is better. It hasn't completely gone away though. Every cough. Every twitch. Every time he gets angry. A thought goes through my mind. At least now it doesn't send my heart racing and get me going into panic mode.

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Mpatti: PTSD...that is where you are right now. It is completely normal. As time goes by, as you see him/her get through episodes/flares, you will start to see that the world is only temporarily tipped against it's axis. You are not alone. You will get through this. Remember that all the worry in the world will not stop a flare...try to allocate your energy to enjoying the good times....simple, I know, but true

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MPatti,

I need to contact you about the support group.I've had a lot going on, pans-wise. Several out of state trips for tx.. But I just read your post about blood clotting disorder. I have one also and it affects pregnancy. The reason I'm writing you is because my daughter was also found to have it and they feel it's the cause of her pans symptoms. If you have anti phospholipid syndrome, it is known to cause psychiatric problems in some cases. could this be the cause of symptoms for your child?

Sorry to post off topic. I am sorry you are struggling. Maybe just knowing you are not alone will help.

Edited by powpow
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Sorry to hijack this thread, but this is interesting to me. I had a different blood clotting disorder (HELLP Syndrome). DS and I both nearly died in the hospital and I was advised not to attempt having more children. I have always wondered if there was a PANDAS connection somehow.

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Thanks to everyone who responded - I really appreciate it and feel a bit better knowing that my feelings are "normal."

 

I was diagnosed with Factor V Leiden (heterozygous) and MTHFR (heterozygous) and had to take baby aspirin and Lovenox when I was pregnant. I was told by my OB that I did not need any medication when I wasn't pregnant. I have not had my son tested - I mentioned it at his doctor appointments but was told it was not relevant to PANDAS. I will mention it to Dr. B when we see him this week

 

I would be curious to know how many of us have a clotting disorder.

 

Thanks again for all the encouraging responses! :)

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Hi. I could have written your post - I feel your pain and am so sorry. I wouldn't wish this on anyone. For the first time in my life I have had to get medication to cope as 18 months of constant worrying and obsessing about PANDAS has now given me a very real anxiety disorder. I know I can't be much help to you in this frame of mind, but I want you to know you are not alone. You will find comfort in this forum though, particularly when you feel no one else is listening.

 

Strange as it sounds, I find comfort in the fact that PANDAS does exist (in addition to Tourette's and all of those other brain disorders). We must remember PANDAS doesn't necessarily mean life-long. And it isn't life threatening. It DOES exist, despite what some experts might believe. We all know it and have a story to tell that supports our belief. When my daughter woke up one morning as a child I didn't recognise, with severe Tourette symptoms and off-the-scale anxieties I was actually relieved to find PANDAS information. PANDAS in unpredictable and this is very scary. But unpredictable also means it's not a done deal and things can get so much better too. Be sure to remember good times do follow the bad and there is hope. Our poor children that are put to the challenge time and time again and bounce back are the strongest beings around. They are fighters and always will be.

 

n.b. Just for the record I have a history of severe allergies and lots of sore throats as a youngster. At 25 I developed debilitating pressure urticaria following a severe chest infection and a flu jab - I still have flares 15 years later. There is a genetic immune dysfunction issue here for sure. I have to keep believing even though no one here in the UK is buying the PANDAS theory. It's sooooo hard.

 

Sending prayers your way x

Edited by lydiasmum
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I feel for you and understand your anger. When my child was experiencing her worst symptoms there were times I thought I would have a nervous breakdown. Family and friends could not understand the suffering of our child and her siblings and my husband and I. I learned to develop and action plan for times like this because my child did not want to tell me her symptoms were back. She did not want to make me unhappy because we were so happy when they were gone. I decided that even though I felt I was hiding my feelings she could see a change in me. I had to figure out how not to let the symptoms effect her and me in a negative way. I am not sure how I did it but I managed to accept it not worry about what might happen and only deal with it day by day. I only worried about it if the pattern lasted for a few days. Otherwise I had to make myself remember my older daughter had similar quirks and had no problems. I remember all the stories of my friends children that do normal kid stuff that I would over analyze in my child to stop myself from starting to panic. Hang in there it gets better as time goes by my child has not had any symptoms in 1 1/2 years now.

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  • 4 weeks later...

I have 3 PANS children and I feel like I have been robbed of so many years of "normal" family life. I don't even know what that is. I haven't been able to enjoy my older children because my youngest child is so severly affected. It sucks, it really does. I feel your pain.

 

Dedee

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Sorry to hijack this thread, but this is interesting to me. I had a different blood clotting disorder (HELLP Syndrome). DS and I both nearly died in the hospital and I was advised not to attempt having more children. I have always wondered if there was a PANDAS connection somehow.

I also was diagnosed with HELLP syndrome during my pregnancy.
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