“Since my oldest, Jackson, was 18 months old, life around our house has been far from easy. He was an easy baby and toddler – until he wasn’t. At first my husband, doctors and I attributed it to toddler boy behaviors, then delayed speech, next sensory issues and last ADHD when he was 5 and in transitional kindergarten (TK). I researched and researched ways to help each of these possible diagnoses. We did years of speech and occupational therapy. With the occupational therapies we would brush him daily and he was required to jump from our couch onto pillows multiple times a day. We were willing to try anything.
When he was diagnosed with ADHD, we agreed with the doctor to put him on medication before he started Kindergarten because TK had been so rough. He was constantly in trouble and everyday we’d get notes home about his behavior. I didn’t even enjoy taking him to playdates anymore because he would push, hit, bite and he wouldn’t stop no matter the punishment. Once he started the ADHD medicines, I thought they were going to be the answers to our prayers. We thought it would be an immediate solution. In addition to the medicine, we saw psychiatrists, psychologists and counselors to help with what we were all going through.
For years we tried different medicines and different combinations of medicines. You name an ADHD medicine and we tried it. From stimulants to non-stimulants, methylphenidates to amphetamines, from short-actions to extended release. EVERY. SINGLE. OPTION. Nothing helped and his behavior got progressively worse. We even had a few emergency trips to our local behavioral hospital, but they never found anything emotionally or mentally wrong with him. So, they would send him home with no solutions and zero next steps. It was excruciating not being able to help him and not understanding what was wrong. Through most of this, I was able to keep things a secret. Only our close friends and family knew what our every day was like.
At that time I had a blog that was usually for recipes, outfit and party ideas with an occasional personal post thrown in. In early November 2017, I was emotionally drained, so I sat down one night and put it all out there. I poured my heart out, frustrated and basically at my wits end. I just needed to vent. Here is a portion of what I was feeling at that difficult time:
This is by far the single hardest thing I have ever written. Harder than the ones about infertility or losing my parents. I have a child with special needs that requires quite a lot of attention and help. I’m just going to say the thing you are not supposed to say as a mom… I don’t always like being a parent. I know it sounds awful, especially those struggling with fertility or those that have lost a child, but I have to be real.
Yes, I am thankful that God gave me my children.
And yes, of course I love them. But my days are far from the blissful parenting days I expected. I’m not just talking – ugh, the kids didn’t clean their rooms or they got some bad grades. I am talking debilitating, excruciating days. Days when I have cried for hours for trying to handle with my child (with ADHD, anxiety, and depression) having multiple meltdowns. Meltdowns that consist of screaming, yelling, hitting, throwing, breaking things, running, slamming doors, spitting, you name it.
I try to order food for take out on Tuesdays since my husband Allen is usually gone and I could use a break from cooking, but more times than not I have to end up cancelling it because the tantrums are so big I can’t leave the house. I would LOVE to be that parent that lets their child stay up late eating candy and watching movies or spontaneously go out of town for the weekend. But I’m not that person. I can’t be. My child craves and thrives on consistency and structure. Even that doesn’t fix everything. I’m mentally, physically and emotionally exhausted.
Physically, he is getting bigger by the day and I have to restrain him and get him up a flight of stairs to his room with him literally kicking and screaming. Emotionally, he says hurtful things about how he hates me, wishes he wasn’t part of our family and wants a different mom. I have to watch everything I say so that my emotions don’t get the best of me and I don’t say something I’ll regret.
We have had him tested for everything under the sun. Allen and I have tried MULTIPLE medications, vitamins, therapies, you name it. And everything is expensive and almost nothing is covered by insurance.
WE’VE SEEN PSYCHIATRISTS, PSYCHOLOGISTS, COUNSELORS AND BEHAVIOR THERAPISTS.
Consequences, punishments don’t work for him. I constantly wonder what I have done wrong as a parent. What could I have done differently? It is the loneliest place to be in the world. I feel scared, helpless and completely hopeless. Allen has to travel for work – that’s not an option. We want to have food on the table and clothes on our back. I have no help – both my parents are deceased. My sister has twins and would never want to burden her with mine.
I have looked into babysitters and nannies but I’m worried they couldn’t handle one of these meltdowns any better than I could. My other two children are suffering. I cannot be the kind of parent I vowed to be to them because my other one takes up all of my time. They are easy so they get the short end of the stick and it’s just not fair. I know that my child does not choose to be the way he is. It is a daily struggle for him as well.
The blog was titled ‘My Sweet Child.’ I hit publish and that was that.
Now thinking back, I think I wrote that post for another reason, other than just venting. I believe that God has a hand in everything you do. God was holding my hand as I typed that post and he was there when someone I had never met read my post and reached out to me. I will never forget that day. I received a message from a friend who had another friend that wanted to talk to me about my post. She told me her friend thought there was something else going on with my child and wanted to call me. I was all ears! When we talked the first time, I was super nervous. I had no idea what she was going to say. She said, ‘Have you ever heard of PANDAS or PANS? I think your son has it. My son has it, and after reading your post, I think you need to have him tested.’
Yes, I had heard about this, but I thought it was something that only happened if you had strep multiple times. And my child has only had strep once when he was 3 or 4. WRONG. We talked for almost 2 hours, comparing stories, commiserating, etc…But then the warning came. Some people don’t believe in this diagnosis. What? Why? Because it’s relatively new. Also, there are no specialists here. Most people travel out of state. Ok, we’ll cross that bridge if we get to it. The next day I called our new pediatrician’s office and ran through the entire story with the receptionist in 2 minutes and explained why I needed to bring him in to test as soon as possible. YES, first step down. We had an appointment. Now to convince this doctor, who doesn’t know me from Adam, to test my child for a multitude of things. Luckily, the pediatrician understood and had heard of PANDAS. He looked at me and said, ‘Yes, we will run the tests.’ It was music to my ears. I had pictured myself on the floor, groveling and begging with everything in me. He made that day a lot easier on me and for that I’ll always be grateful. They took a lot of blood and sent us on our way.
Four days later, the doctor called me at home on a Friday night. The blood tests were back and showed elevated strep titers and elevated Mycoplasma titers. PANDAS is normally characterized by abrupt onset of mood swings, OCD, tics or other strange behaviors. Well, we had that, but it was years ago. Back then they told us he was ‘just a boy, who had ADHD and sensory issues.’ It still counted. It actually aligns with him being in the hospital for an infection around 18 months old. PANS/PANDAS was certainly not suggested to me then, not when he was 5 and put on stimulants and not when his mood swings were so violent that he had to go to the ER twice. NEVER. I don’t blame anyone for this, but it is so frustrating knowing that we have been headed down the wrong path for so long.
With this news we headed down a new path. We found new doctors, ideas and new plans for Jackson’s health. We first started out in New Jersey with a great doctor, super intelligent and who really knew all about PANDAS. He ran labs and had a plan for us. We’d try a few antibiotics and if they didn’t work, we would try IVIG, which is a way to help restart the immune system. We tried the antibiotics – no change. We had one low-dose IVIG in September of 2018. Nothing helped, nothing changed. The days were still long and hard. Jackson’s flares were increasing by the week. He was struggling at a very small private school just like he was at a large public school.
In Charlotte, we are lucky that we have a good community of PANDAS/ PANS moms. After no change from the antibiotics or the low dose of IVIG, I reached out to a few moms to see what they suggested our next move should be. We had an appointment with a holistic doctor that would start with healing Jackson’s gut. Additionally, in May of 2019, we traveled to another neurologist, a PANDAS/ PANS specialist, this time in Washington DC. Her plan was fairly simple, but it’s going to take some time. Our steps were as follows:
- Start antibiotics again.
- Try steroids for 5 days (we had never been prescribed these)
- Have immediate family checked for elevated titers as possible carriers of strep.
- Get an appointment with an ENT in Charlotte to see if Jackson is a candidate for a tonsillectomy.
- After results from tonsillectomy, start entire family on the antibiotic, rifampin.
- Major clean of home.
- More labs to determine whether our next treatment would be rituxin or high-dose IVIG.
Having a new plan is a good feeling, but our everyday is still a struggle. We still don’t know what each day with Jackson will look like. He is currently on medical homebound school.
This is PANDAS/ PANS. It’s sad, it’s unfair, it’s heartbreaking. His childhood has been violently stolen by this disease. It’s chipping away at his spirit piece by piece. Jackson turned 13 at the end of August. He should be in 7th grade with his friends. This was not the life Allen and I planned for him when he entered this world in August 2006 as a precious 8lb 8oz little boy. We wanted him to be happy and healthy with lots of friends. He is extremely intelligent; we thought the everyday minutia would be easy for him. But those are the things he struggles with the most. I knew it wouldn’t be easy (middle school isn’t easy for anyone), but at least he’d be there experiencing everything that middle school has to offer. He’d be making new friends, trying out fun electives, going to dances and football games at the high school.
My emotions are all over the place on a daily basis. I am thankful for new plans, but sad for our reality. I wish Jackson was at school with his younger brother as they should be. I dream that Jackson will be able to go back to a normal school with his friends. I want my three children to be best friends.
We have some new treatments on the horizon and are praying with all our might that they will work.
‘The Lord is close to the broken-hearted and saves those who are crushed in spirit.’ – Psalm 34-18.”
This story was submitted to Love What Matters by Josephine Hauser of Charlotte, North Carolina. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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