As heartbreaking as it is, I’m always amazed at how similar the PANDAS/PANS stories sound from person to person. Just when you think nobody could have experienced the hell that you did in getting your child diagnosed…NOPE!…here’s another story that has some of the same pieces. Misdiagnoses. School trouble. Homebound. How the heck the Medical Community can deny that this is happening to our kids and our families is beyond me! But we know it’s happening. Sigh.
I recently asked a friend of mine if she’d tell her story during October. Yes! This is the Tina Nidy Gonzalez’s story of how PANDAS hit her son Diego. It starts with a narrative she’d written, and I sent her a few questions to answer too. Not to spoil a happy ending, but Diego is actually DJ Diego in Las Vegas and has a web site, Facebook Page, and Instagram Account. Diego is doing “GREAT” now according to his mom, but Tina and Diego had a long road to get back to the GREAT place they are in now.
Diego was a sweet, caring, regular kid that loved to socialize, go to school, and all the things that most kids enjoy doing. He had mild signs of separation anxiety and mild tics that started at age 5, but they were treated as mild and nothing to worry about. The nightmare began at age 11, when Diego started to have panic attacks almost on a daily basis, which were being called Asthma attacks at the time. He went to the school’s nurse 67 times during school that year. We went to several Asthma specialists in town and most diagnosed it as Anxiety/Behavioral, and not as a lung problem.
Then the October when he was 12, Diego told me he wasn’t feeling right. He said, “Mom, school is so hard. Why do the kids get it and I don’t? What’s wrong with me? Why do I feel strange, like I’m in a fog?” He had no signs of sickness like sore throat, etc. So I took him to our pediatrician, and Diego was diagnosed with ADD. He was prescribed a non-stimulant medication for this, and in less than 4 days, he woke up a different child. This is where the true nightmare began for us.
Diego started to have physical tics that were very severe. They caused him to wet himself, not allow him to fall asleep, and caused physical pain to different parts of the body depending on the tic. There were times he was screaming at the top of his lungs about how bad his head hurts and continued that way for hours. He also started verbal tics and began swearing, using racial slurs, very inappropriate and random things to anyone, including family and friends that he loves. He was apologetic and stated that he couldn’t help it after the tics were being said. This frustrated, angered, and saddened him to the point of suicidal comments. He also started to show signs of a photographic memory and became savant-like by memorizing long strands of numbers with only one glance for a few seconds. He would state that he had a book in his head that he could retrieve pictures of what he was seeing, and at times, it would drive him crazy because he could not turn it off.
There were times he would start talking like an immature 5-year-old at one moment and the next like a mature 35-year-old old gangster.
He lost his filtering system and said things that were very inappropriate, and he had social phobias, severe OCD, and perfectionism. He was overly sensitive to light, sound, and smells. He was stating at various times that he was seeing things. He was hallucinating rainbows and different abstract things and complained about how things are going so fast and then how things are in slow motion. He cried easily, was fearful and sensitive, and was saying unusual things, and had unwanted perceptions such as hearing voices or seeing himself in third person. He made suicidal threats, and had severe anxiety and extreme mood swings and outbursts.
I was then told that Diego was to be under adult supervision 24/7 by the current doctor. School was no longer an option, and basic things like going to church, having friends, and even the grocery store were too much at times for him to handle. We became homebound. I took him to the Emergency Room after a week of all these symptoms, and they ran tests, and Diego was diagnosed with Tourette’s. I believe that the photographic memory threw the doctors off in properly diagnosing him. He was prescribed a medication for Tourette’s and started seeing a neurologist. This doctor did many tests, but not blood work. He agreed with the previous diagnosis of Tourette’s. By December 2012, he had been on 4 different types of medication for Tourette’s and he was literally going crazy. All of his symptoms were getting worse, and Diego was heading in the wrong direction. At this point, I begged to take him off of the medication because it was only making things worse.
I took Diego to several other doctors, including mental health professionals, and everyone was saying the same, “We have never seen this before.”
By January 2013, Diego was completely off all medications, and we tried natural remedies. We actually had a few “good days”, which is what we call when it doesn’t feel like all hell broke loose. I continued to research mental health and different types of diseases to figure out what happened to my child. At this point he was getting worse again and on a daily basis. We continued to visit new doctors of varied medical fields. We went to over a dozen different doctors with varied and contradicting diagnosis, but not one solution that would help Diego and his symptoms.
In June of 2013, Diego’s OCD got to the point where he lost control of his movements at certain times. For example, one night he couldn’t get his legs to move to get through the front door. He said he didn’t want to walk on the blocks of tile because he was afraid they would fall out from under him. He tried and wanted to come in the house, but his body would not respond to his thoughts. He was aware of what was happening and was very confused, frightened, and broke down. He had many obstacles he had to overcome on a daily basis. During this month his oppositional disorder became more severe, and he was defiant at times. An example, we would ask if he was hungry, and he would automatically respond with “No!” and then say “Yes” seconds later. It was as if he were objecting to whatever we asked him, even though he wanted to do it.
I had a friend send me a link about PANDAS and started to research it. I wanted to get blood work done ASAP to find out if PANDAS was the cause of this nightmare. He had all of the symptoms that they were referring to in the article. During this time we went to a psychiatrist to ensure it wasn’t bipolar disorder. The doctor diagnosed Diego with PANDAS in a matter of minutes. Blood work was completed, and it was verified by his neurologist that Diego had PANDAS. Antibiotics were prescribed short term only and was referred to an Oncologist. The antibiotics did improve some symptoms, but he got worse again. We knew that Diego needed healthy antibodies through a procedure called IVIG.
We did 6 high dose IVIG in a years’ time, pulled his tonsils out, and did lots of diet and detox work. Now 4 years later, Diego is 16, and we are pandas-free, other than no fevers still and sometimes he gets an eye tic. In September of this year, we took him off antibiotics for the first time since he was diagnosed in 2013.
What a story!!! I’m so glad that Diego is in such a good place now. I also asked Tina a few questions…here are her answers:
1. What advice would you give to a parent that suspects PANDAS/PANS in their child or was just diagnosed?
Tina: Don’t waste your time and money on a doctor that doesn’t listen to you!
2.What were some of the first signs and symptoms of PANDAS that you saw in your child that told you something was wrong?
Tina: Tics, OCD, anxiety, age regression and rages.
3.How long did it take to get the correct diagnosis and appropriate treatment for your child’s PANDAS
Tina: We saw 27 different doctors in 17 months. 17 months of HELL!
4.Do you have other children? If so, how do you feel PANDAS affects them?
Tina: I have 3 kids of my own and 3 step kids. It was a nightmare for my daughter. She and Diego are only 16 months apart, so they were very close. She didn’t understand at the time what the hell happened to him. He was very verbally abusive to her. We had to hide her away from him. She spent more time at her dads so I could care for Diego. I feel sad that she didn’t have me more of that time. Today, they are building that relationship up again, and she can’t wait to be a PANDAS doctor. My oldest son was 16 at the time and he didn’t want to believe it. He was scared and confused so he would hide at his dad’s too. Today Diego and my son Joey have one amazing relationship. Having 3 step kids that only came to visit 3 times a year was very difficult. All I can say is talk to your kids and some day they will understand what happened. All 6 of my kids adore me and think of me as an ANGEL!
5. How much did PANDAS affect your child’s daily life and activities? How much did it affect your families’ activities as a whole?
Tina: My son couldn’t attend school, church…nothing. He would cuss at people as we walked into the doctor’s offices. It was a very difficult time for my whole family. I had to leave my job, lost my car and home to care for him. This illness takes everything away from you . My own family said I was going crazy at times. I’m so thankful for the days and nights venting away on all the support groups.
6. How has PANDAS affected your child’s education? Are there special accommodations in place, like an IEP or 504 Plan?
Tina: This is a bad subject for me. My son was in a very bad stage at age 12. His onset was horrible. I always said health first then school. We have an IEP and 504 but how do you accommodate a kid cussing, yelling, and ticcing. He would go days without sleep. I can’t force him to school. I did online K-12 for the first year, and YES I did all his work. He didn’t even know his name. I had to keep up with his work so they didn’t send a truancy officer to my home. I read all the nightmare stories and made my mind up to do his schoolwork. He was too sick to think!!! My plan for him is to get his GED one day. He is brilliant and street smart is what I will call it. The education system sucks in Las Vegas.
7.Your son received some DJ equipment as part of the Make-A-Wish Program. Tell us about some of DJ Diego’s events. How does DJ’ing help your son with his PANDAS?
Tina: I asked many doctors about getting him a wish. Many of them laughed at me. My son at the time could not walk or talk at age 13. I knew in my heart he would get a wish. He had as passion for music at an early age. I started taking him to a music school for autistic kids. He was playing the drums blindfolded at the end of his first class. The music teacher said he was a musical genius. His wish was for DJ equipment and producing music software. Music is his life. The days he had IVIG treatment at home, he would spin music hooked up to his IV line. When he was sad about having no friends, no school he would just start playing music. Music brings him happiness and always a smile.
8. What do you feel the biggest issue facing the PANDAS/PANS Community?
Tina: Finding doctors that can treat this illness. I wish we had more money and went the holistic way!!!
9. PANDAS Sucks: How is Diego doing now? How are you doing?
Tina: Diego is doing GREAT!!!!!! He is 99% back to me. I have horrible PTSD, and I’m scared daily this nightmare will come again. I’m scared to let him go in this world.
10. Please complete this sentence: “PANDAS Sucks Because….”
“PANDAS Sucks Because…the medical doctors don’t look out of the box or book they have been taught to read for so many years! ~Tina Nidy Gonzalez
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Sarah Jane Alleman is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. She is also the Director of Kentucky PANDAS/PANS Support, which strives for more awareness, support, and understanding of PANDAS/PANS. Sarah was a Parent Contributor to the book “PANDAS and PANS in School Settings.” Find PANDAS Sucks on Facebook, Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.