I haven’t blogged in a few days, mainly because my phone was acting up. The last week with my Chipmunk has been hectic. He has apparently lost his damn mind and thinks he became a grown man recently, that can do and say whatever he wants. 2 days ago I had enough. If I told him he was grounded he would say “No I’m Not, I’ll do want I want.” Ummm…NO YOU WON’T! So I went on a rampage, grabbed 3 storage bins, and took every toy he owns! I will be damned if my child will grow up to be an entitled little turd that thinks the world revolves around him!!! He now has to use the morning chart to earn a smiley face each day, at the end of the week he earns 1 toy (of his choice) if he earned all 5 smiley faces. If he doesn’t, then he gets nothing! May seem harsh but I have to send the message that I am in charge.
He knows he has PANDAS/ PANS and will sometimes try to blame his behavior on that but, sorry kiddo, I do know the difference (most of the time, anyway)! It can be tricky figuring out when he needs a break or discipline. Being a parent to a child with so many diagnoses is like walking a tight rope every day, but they learn quick to use it to their benefit. Lol
I tell him every day that I Love Him To Pieces and the other day I was feeling creative. I thought I’d make him something to be a constant reminder to him, so that no matter what happens I always love him. I painted this sign and hung it in his room.
After my post this morning, it was really early, but I just couldn’t go back to sleep. My brain just kept going over the last few days with my son. Looking for any other reason, but I knew he needed to see the doctor. I wanted him to tell me I was wrong, that I was over analyzing things, but I still knew what he would say.
The doctor confirmed that my son is having a PANS flare up (because Strep was not a factor) and that basically my son has a very sensitive system. So someone could have a cold or the flu and his antibodies could be triggered. He put him on a new broader spectrum antibiotic and we have to continue his ibuprofen every 8 hours for the next 10 days to keep any inflammation down while the new antibiotic does its job.
PANS is an autoimmune disorder where basically a virus enters the body and it causes your antibodies to attack anything that looks like that virus or bacteria, usually the brain is affected and becomes inflamed causing a sudden onset of behaviors, tics, OCD, aggression, etc.
I’m lucky because I stumbled upon the information on a Facebook post. The symptoms all sounded just like what happened after my child had two bouts with Strep last year. I found the best Autism doctor (this man has an almost year long waitlist to see him) that all the parents from different Autism Groups raved about and I private messaged him on messenger about my son and his symptoms. That might have been slightly unprofessional, but he was kind and messaged back that he wanted to meet with us. He happened to have cancellation a week later and fit us in. I love this doctor and so does my son. He also happens to love his favorite nurse, Bonnie. Dr. Madren has been treating him for PANDAS but now we have to treat for both disorders. I will move Heaven and Earth to get whatever the best treatment is for my son and I feel that we have a great team backing me up!
My husband has been out of town since Sunday and I have been feeling super anxious since he left. I couldn’t figure out why but every day my anxiety was getting worse. Thankfully, I take medication for anxiety and depression so it really helps, but I couldn’t help this feeling that something was wrong.
Yesterday I got a message from my son’s SPED teacher showing me some of his writing work samples from this week. His writing ha gotten very erratic and almost illegible. She also said that he had started making noises more frequently in class. These are red flags to a PANDAS/PANS parent. It usually means he is going through or at the beginning of a flare up.
He was louder than usual that morning and just all over the place until I turned on Wallykazam and he settled down. I’ve hads a feeling this was coming, but I had to just see how he was doing for myself, so I went to his school and had lunch with him. He was fidgety and, sure enough, his pupils were completely dilated, despite having a hat on (he is allowed to keep his hats on in school because the awful lighting hurts his eyes a lot of times) . These are an indication that he is going through a flare up and that there may be some inflammation in part of his brain. I always carry children’s ibuprofen with me, so I took him to the nurse’s office after lunch and gave him some. It’s the first course of treatment anytime he starts flaring.
I have an appointment tomorrow with his doctor and for now I keep giving him the ibuprofen every eight hours to keep any inflammation down. I guess my intuition was trying to tell me something and I just couldn’t figure it out until yesterday.
PANDAS is an acronym for PediatricAutoimmune Neuropsychiatric Disorder Associated with Streptococcal infection. It is an autoimmune condition initially triggered by strep infections, which disrupts a child’s normal neurologic activity. PANDAS occurs when the immune system produces antibodies, intended to fight an infection, and instead mistakenly attacks healthy tissue in the child’s brain, resulting in inflammation of the brain (basal ganglia section) and inducing a sudden onset of movement disorders, neuropsychiatric symptoms and abnormal neurologic behaviors.
The signs of acute-onset OCD are different:
It’s as if child is suddenly “possessed” by OCD symptoms
My son has several on this list, but thankfully suicidal thoughts is not one odd them! He had been rather emotional dating he doesn’t deserve certain things or that things are all his fault once he calms down emotionally.
Bottom line…Mamas know when something is going on with their children. My gut has never been wrong when it comes to my Chipmunk and I trust it. I know him better than anyone and we are very in tune with one another, so when my anxiety level went up my gut was trying to tell me something. Now I just have to get him through it. We’ve been here before and i’m confident in myself and his doctor!
Last night our Chipmunk definitely pushed our buttons. He tested our patience and we didn’t handle it in the best way. There is no such thing as a perfect parent. We all make mistakes and we learn from them so that we can hopefully be better next time.
I have many “not so proud of myself moments” over these 7 years since becoming a mother. When our son was diagnosed it was like the weight of the world was placed on my shoulders. Not only did I still have to do all the normal parenting duties but now I had so much to learn to be a good productive parent. I needed to know the difference between throwing a tantrum and a meltdown. I had to know his triggers for those meltdowns. I needed to (and still fight every day) to find patience for the rough days. I had therapy appointments, specialist appointments and his usual doctor appointments. Now he has newly been diagnosed with PANDAS (which is a whole other world of knowledge I have to learn) and ADHD. I now have to limit certain foods, he requires specific vitamins (even those have to not contain methyl because those cause overstimulation in our son), no flouride (because it acts as a neurotoxin), and no food dyes (again causes overstimulation, some more than others. Red and Blue dyes are the worst)…I do t believe in giving artificial dyes to anyone anyway and in Europe they are banned. Way to go USA…they serve no healthy benefits and cause so many problems. I’m getting off topic and will make a post of food dyes and how they effect our children another day! My point to this post is this…no matter what life throws at us my husband and I will always be there advocating, educating ourselves, and mostly loving our Chipmunk. This is not an easy journey, but I wouldn’t trade ours for anything!