Diego's IVIG Treatment
Help my son recover from this nightmare. Thank you for your support!!
Read further for Diego's story:
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 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 last year in Oct. at age 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 and this is where the true nightmare began for us. He started to have physical tics that were very severe. They cause him to wet himself, not allow him to fall asleep, and cause 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 continues 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 is apologetic and states that he can't help it after the tics were being said. This has 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 would drive him crazy because he could not turn it off. He started talking like an immature 5 yr. old at one moment and the next like a mature 35yr. old gangster. He lost his filtering system and says things that are very inappropriate, social phobias, severe OCD and perfectionism. He was overly sensitive to light, sound, and smells. He was stating at varied 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 cries easily, is fearful and sensitive, and was saying unusual and unwanted perceptions such as hearing voices or seeing himself in third person. He has made suicidal threats, he has severe Anxiety, and extreme mood swings and outbursts. I was then told that Diego is to be under adult supervision 24/7 by the current doctor. School is no longer an option and basic things like going to church, having friends, and even the grocery store are too much at times for him to handle. We have become homebound.
I took him to the Emergency Room after a week of all these symptoms and they ran tests and Diego was now diagnosed with Tourettes. I believe that the photographic memory threw the doctors off in properly diagnosing him. He was now prescribed a medication for Tourettes and started seeing a Neurologist. This Dr. did many tests, but not blood work. He agreed with the previous diagnosis of Tourettes. By December 2012 he had been on 4 different types of medication for Tourettes 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 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 were over a dozen different doctors with varied and contradicting diagnosis, but not one solution that would help Diego and his symptoms.
In June of this year, 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 has many obstacles he has to overcome on a daily basis. During this month his Oppositional Disorder became more severe and he is 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. 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 a few months ago about PANDAS and started to research it. I wanted to get blood work done ASAP and find out if PANDAS was the cause of his issues. He had all of the symptoms that they were referring to. 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 was verified by his neurologist that Diego has PANDAS (a rare immune disorder). Antibiotics were prescribed short term only and was referred to an Oncologist. The antibiotics did improve some symptoms but getting worse again. We now know that Diego needs healthy antibodies through a procedure called IVIG. The procedure is not covered under any insurance providers at this time and the expenses will be out of pocket and over $5,000, which we do not have.
I have not been able to work due to caring for Diego all day and night. I also fear for my daughter which has already shown mild signs of PANDAS. I can't imagine this happening to two out of my three children going through this. No one can possibly understand the nightmare PANDAS can bring to your child and family unless you have lived it firsthand. We as a family have entered a world of chaos, fear, confusion, darkness, embarrassment, blame, guilt, anger, helplessness, and even hopelessness. All of these feelings and behaviors have taken my family out of a healthy and productive system of consistency, sharing, predictability, trust, and support. We are fighting for Diego's life back. Yes he is alive, but this is not the Diego as we know him to be.
My current insurance does not allow me to travel out of state to get treatment for doctors that specialize in PANDAS and could further help Diego with his treatment and recovery. The IVIG is the first step to Diego's recovery.
Please help Diego in any way possible, even if it"˜s sharing our story.