Sorry, just feel like a rant.....

[Lydiasmum]

I will apologise before I start that this is just a negative rant. But I need to do it and this is the only place.

 

I HATE this. PANDAS, PANS, probiotics, antibiotics, vitamins, immune deficiencies, mold, allergies, illness, dietary modifications. All of it. The constant explaining to those who don't understand, constant making excuses for how my child is today. Waking up (if I sleep at all) to goodness knows what. The uncertainty of the future, the walking on egg-shells and not knowing. The constant rollercoaster. My mind has been taken over by this horrible condition that nobody understands. No real help available. I am supposed to be grateful it's not life-threatening so why do I feel so ungrateful.

 

I love my child, of course I do. Her smile, her lust for life. I live to keep her safe and protect her. But I can't fix her, no matter how hard I try or how much research I do. Of course I want her to live a 'normal' life and act and feel like her classmates, but it's not to be. And when that diagnosis of ASC and spoken language impairment arrives next week it won't help. I will try to focus on the action points and fight with all my being to get her all the support available to help, but even that won't fix her. I want her fixed. I want that normal existence for her. I don't want PANS, Asperger's and terrible stuttering that disables her speech and gets in the way all the time. The crippling anxiety and constant need for reassurance. The repetitive checking questions ruling the conversation between us over and over and over again. The buried envy I feel to see my friends out and about with their 'neurotypical' children.

 

Arghhhh! I hate all of this. So life-changing. So unpredictable. Life can never be how I imagined it and I feel sad - sad for my girl but sad for all of us as a family too.

 

Sorry to sound so negative but I know you guys will understand. x

Edited February 9, 2016 by Lydiasmum

[mama2alex]

This isn't negative, this is honest! I'm sorry for all you're going through - I've been there. Hang in there, don't give up, and if at all possible, try to take care of yourself a bit.

[emst]

Hey -- so sorry. Been there x3 kids it stinks, worse. If I had to do it again i would ask people to help though I suppose you know that its hard to ask, and it gets harder the longer it goes. But there are more good people int the world then not and most are smart and kind and can take direction. Church groups, school groups, scouts - friends and neighbors. Be very specific so they cant fail Give it a shot.

Sending Prayers your way, Erin

[Cleopatra]

Have you tried HD IVIg or PRX? Both extremely helpful here.

[laure]

First, you are a GREAT Mom! You will keep putting one foot in front of the other for your child. You will never give up on her.

 

The one thing that helped me the most through 5 years of craziness was being able to pick up the phone and call some folks from this forum. Sometimes we would just text while sitting by our childrens' beds at night, other times talk throughout the day. It meant the world to me to not have to explain everything, to just be able to leap in and talk about the latest insanity we were experiencing. Some of these women I have met in person, others are just a friendly voice on the phone or text message from a familiar number. I will PM you my phone number and maybe others here will do the same. Call ANYTIME.

 

Ultimately my daughter got healthy because of ideas and connections gleaned from this forum. Have hope - your daughter WILL get there!

 

 

[cobbiemommy]

I understand exactly what you are saying about your child. This illness takes a lot from our child, our family, our marriages, and sometimes even our trust. I know my trust in the insurance industry, the medical profession and the appeal process has been beaten severely.

 

While my family is profoundly changed, we are still functioning and sometimes excelling at being human beings. I am still advocating for my son, but not to everyone I meet. Some people just don't need all of the information and I don't have the energy to give it to everyone.

 

Like many here, we have dug deep into every financial resource and leaped a few times into unknown financial peril. We are actively seeking a different PANDAs doc, but working with our wonderful pediatrician, and a therapist. I will probably not explain this correctly, but sometimes we have had to just play the game the way the medical community wants it played, until we could get to that next level of care. I don't view our children's health as a game, but I felt like I would do whatever it took and look under every rock to get more answers.

 

Keep putting one foot in front of the other and make sure not to neglect your own physical health.

 

Cobbie