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Have you heard of PANS/PANDAS?


We are no stranger to mental health concerns or disabilities. My mind tends to tumble down the spiral of negativity but all in all, I know we will get through this and this is just a bump in our journey. It’s hard to accept that we are once again struggling through a mental health battle. I'm not at all regretful, I know this is all part of the process of acceptance and getting through it. We will get through it.

 

Tears and clothing

I spent a portion of my day going through her clothing that I think she has outgrown, it’s hard to know for sure when she doesn’t wear them. So really what’s the point of keeping them in her drawers? Am I doing the right thing even upgrading to the next size or is this just going to give her more apprehension because there will just be more items that present sensory challenges? Most of the time we have more questions than answers. More clothing that she cannot stomach to wear. You would think after having children with other silent disabilities and mental struggles this would get easier. That is just not the case. It never gets easier, watching your children fight their inner battles looking so defeated because they can’t do the things that other children get to do so easily. However, Shannon and I have become much more equipped to work through the tough times together.

 

So, as I sit on the ground of my six-year-old’s room, clearing out the clothing that she used to love but just cannot come to touch anymore, I will allow the tears to fall. It’s okay to feel the sadness and it's cleansing to cry about it. One thing I will not allow myself to do is to give up. Just before bed last night my hubby gave me the “this mom never gives up pep talk, so cheer up, you are doing the best you can” speech. I needed it and he’s right, I don’t but damn this shit is hard. You can see it in my eyes if you know me well enough.



 

The Diagnosis

In October, my daughter was diagnosed with something called PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Have you heard of it? I had. It’s odd because when my oldest was little I had started researching it. He was sick all of the time and quite a few of those times he experienced strep (this type is called PANDAS- Pediatric Auto-immune Neuropsychiatric Disorder Associated with Streptococcal Infections). So, the strep A virus can lead to this type of auto-immune disorder prevalent in young children. PANS/PANDAS go hand in hand and there is not direct testing to figure it out, which is prevalent with auto-immune disorders that I know a thing or two about. When Tristan was young, it was not something that doctors even talked about, let alone diagnosed. Therefore, you can imagine my shock when my daughter’s neuropsychiatrist diagnosed her with the condition. The shock was mixed with sadness, uncertainty, and guilt. Guilt, you ask? Well, as you can imagine when my son was little and I mentioned said illness people looked at me like I had three heads. There were not any doctors that could or would treat it and the research was not out there yet. So, do I feel guilty that I haven’t done more for the boys over the years? Yeah. I mean, yes, we have done a lot and most of you have been through that journey with us or at least heard about it. But is it ever enough when it comes to taking care of your children? I know, trick question.

 

I’m sure a lot of you are wondering what PANS/PANDAS is. PANDAS and PANS are autoimmune disorders in which the immune system attacks structures in the brain called the basal ganglia, found at the base of the forebrain. These structures are involved in movement and behavior; therefore, symptoms of PANDAS/PANS include motor tics, obsessive-compulsive disorder (OCD), deterioration of handwriting, mood swings, sleep disturbances, restricted eating, irritability, and anxiety. You can find more information in the link that follows:(https://www.porterhousemedical.com/news/pandas-pans-awareness-what-are-pandas-and-pans/)

 

 

 For Now

For now, we have gotten Aubrey into an Occupational Therapist nearby who has been a wonderful resource to help her through her struggles. Her school has also been wonderful about providing support through this process however, she does not qualify for a 504 at this time because she does not display the struggles she is dealing with at home, at school. I'm not sure if that is the right path but we are still working on a medical excuse that will provide some of the support she needs while in the school setting. For now, I feel good about this.

 

The ups and downs of flare-ups

The hardest part of all this is that she is seen as this happy-go-lucky, go-with-the-flow, usually following-directions kid. She is the sweet girl coming home and losing her shit, stripping her


My happy-go-lucky little one

clothing off, eating the same few foods, and having a hard time doing anything that involves leaving the house because that would require clothing. Her teacher scored her as at grade level on all of her reports that were given to the neuropsychiatrist. I don’t fault the teacher, it is just how the cookies crumbled but it does not make for an appropriate representation. From what I am hearing, most kids are below grade level at her school so to get resources for the sweet girl that follows the rules is unheard of. To say it lightly, we feel lost. What should we do? My heart breaks that there are so many kids falling behind and into the cracks but I am my daughter’s advocate and I have to keep pushing for what is best for her. I do think the up-and-down representation of her grades and learning abilities has something to do with her actual diagnosis. Maybe the fact that her last school said she needed intervention and then her new school said she is so smart and needs no guidance then the neuropsych seeing all of the help she needs shows how much her flare-ups mess with her. Maybe she was struggling and then she was fine. Who knows. We will continue to search for answers, help, and guidance. I know that if we do all of the above one day this will all just be a distant memory.

 

 

 You are not alone in this

I write this as a reminder that, if you are struggling with something that is wreaking havoc on your child, you are not alone. Sometimes it may feel like others just do not get it but maybe you just haven’t met the right people yet. That is my hope for you. We know how it is. We know what it’s like to make friends and lose them because they think that you are avoiding hanging out or in all honesty, they don’t invite you over anymore because well, your family is a lot. I can’t tell you the amount of times I have cried to my husband just wanting people to understand and wanting to be around this little family of mine. We have two kids that have special needs and with that comes a lot of work in understanding and patience. It has been quite the journey to get there, my husband and I still work at it every day. Sending so much love to you in the ups and downs of raising children with special needs. If you have taken the time to read this and are educating yourself on our situation, thank you. Thank you for caring, trying to understand, and for being there.


 Our normal right now

So what does it look like for us right now? Well, some days are an absolute shit show and I’m only kinda kidding. I think that people feel like I might be exaggerating because I do my best to stay positive and I’m working towards my own businesses and goals but that is just not true. I have decided in this life that even in the hard days and the chaos it is so important that I still work towards my hopes and dreams. By the looks of it life probably will not slow down for a bit but I have accepted that reality, I will try to keep my head held high and optimistic, it is pertinent that I keep working towards the things that make me feel my sense of accomplishment. Some days I get a lot done and some days I have a bad migraine or a flare up and I need to rest part of the day. That’s okay.

 

Aubrey hates getting dressed. At this point it is super hard for her to put clothing on her body. We are at a school that has uniforms so you can only imagine how very hard that situation was for us. We had to try various types of clothing like 5 different kinds of pants. Nope. Then five different kinds of skorts and finally we found one. The shirts, well we have 11 of one kind of material that is a big nope for her that sit in her closet waiting to hopefully be worn again. She currently has two shirts that she will wear. Two, that's it. There are others she wore one day and was okay with them and then all of a sudden they were too itchy because of her “feeling problem” as she says. When she gets home from school she tends to strip down. She wraps herself in a blanket and carries it around the house. So yes, I tend to wash about ten blankets a week, fun times. We tried to fight it for a long time and sometimes we can even get her to put a robe on, which is similar to a fluffy blanket but sometimes she is just naked in her blanket. Her brothers hate it and we totally get it, we do talk to her about it a lot and sometimes it works other times she is just back in her blanket. When we leave to go somewhere it has been hard because she used to love to go places but now it all depends on if she can tolerate clothing and what is clean. There are very few limited options in her vast wardrobe. There have even been heartbreaking times when she turned down places like the beach with her big brother, whom she loves but she could not bring herself to wear any of the ten bathing suits she tried on (I'm not exaggerating, thankfully we have a lot of friends that give us hand me downs and still…) She laid in her bed crying that she wants to go but she can’t make her feeling problem go away, it is heartbreaking.


This is just a snapshot of the issues she deals with daily. We also have to think about food options and the lack of things she can handle. She tends to eat the same thing consistently for a few weeks for breakfast, lunch, and dinner. Sometimes it is spaghetti with red sauce, sometimes goldfish, other times grilled cheese. It varies but remains the same.


Her behavior is up and down and it is very simialr. to a child with ADHD, which we also know well. I am still not convinced that she is not ADHD but we will hold onto that for now and just try to get through this current diagnosis we are dealing with.


I am honestly still learning about her diagnosis and how it contributes to her daily activities. This may just be the start of articles that I will be writing on the subject. So much more needs to be learned.


You wouldn't know the struggle we went through just to get dressed and get here.

Next steps


We are continuing to work with her therapists and the school. We are looking into taking her to a counselor for CBT (cognitive behavior therapy), we haven't jumped on it yet because we have so many appointments and it can be tricky to navigate all of them with mom and dad working and one car. We will figure it out.


I just invested in some dry brushing brushes. And once again, I am still researching but I want to start doing the Willbarger Protocol brushinghttps://nationalautismresources.com/the-wilbarger-protocol-brushing-therapy-for-sensory-integration/ for sensory integration. Her OT recommended it and at this point, I am willing to try anything. It cannot do any harm, so I want to be consistent to see if we can get some positive results.

 

 She is hopeful right alongside me and I always remind her with prayer and positivity that we will get through this and soon enough it will be a distant memory. Thank you so much for staying up to date on our family. We appreciate your support throughout the hard days. It means so much to my husband and I.

 

Little by little we are seeing progress with the therapies we have been using to help Aubrey. I am confident that one day this will be a distant memory and we can be proud that we made it over yet another mountain.



As always thank you for following along on our journey,


Amanda

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