naturalmama
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Posts posted by naturalmama
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My father-in-law was an electronic engineer. He was recently taken to a neurologist who said he likely has Asperger's.
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Thank you so much for all the helpful advice and info. I am so amazed at the level of knowledge you all have about this condition. If only more pediatricians were so informed.
Mayzo, I would love it if you could find an article for me. I would love to share it with her pediatrician. I'm curious though that if low titers indicate that strep antibodies are not the trigger for PANDAS, why did the symptoms show up during her strep infection? I am still wondering if giving her the natural antibiotics could have anything to do with keeping them from rising. If a child goes through a round of antibiotics during a strep infection does that affect how high the titers rise? Or do they still rise the same as they would with an untreated strep infection?
I will try to get some articles to her school administrator. To her credit, she began researching the internet as I was telling her about it. She had never heard of PANDAS/PANS before.
I will check into the NIMH study. Thank you so much for letting me know about it.
I am going to the PANDAS network right now to inquire about a doctor.
Thank you so much again for all your help!
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I actually have read of some kids having a decrease during fevers. My daughter has always had many of the symptoms she has now, only the have increased dramatically since her strep infection. In the past when she has had fevers, they have made no difference in her symptoms. This time she had an upper respiratory infection with no fever, yet we saw her symptoms decrease almost to what they were before her strep infection and it lasted nearly a week.
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My daughter recently has been exhibiting many PANDAS symptoms since a strep infection in April. About a week ago she came down with an upper respiratory infection. During the time that she had it, she had a large decrease in her PANDAS symptoms. She was almost back to her typical self. At first I thought that we were out of the water until another strep infection came along. However, the last few days her symptoms increased again.
What I am wondering is, could it be that the antibodies that were attacking her brain were diverted to fight the new infection? I know it is probably way more complicated than that, but I am trying to wrap my brain around this idea. Has anyone else experienced this? It was pure bliss having her back for a week. She was so much calmer and happier.
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Thank you so much for the help,
I do believe in my heart that we are dealing with PANDAS. It was difficult losing the support of her doctor. It was also difficult to have her school administrator look me in the eyes and tell me that I know in my heart that is she has a mental illness. She advised me to set up an app. with a neurologist, psychiatrist, and OT. Her doctor advised me to take her to a psychiatrist. I want to take her to someone who understands what is happening to her and how to treat her. We live in a small area and I don't know of any doctors in our area that treat PANDAS. I was surprised that her doctor even knew about it. He had done a fair amount of research on PANDAS. How do I go about finding a PANDAS doctor? We are on the central coast of California.
Amy were you saying that the fact that she didn't have a rise in titers signaled an immune response problem? Would antibiotics affect how much her titers would rise? I ask this as I had her on raw garlic and olive leaf extract at the time. I was also wondering if that caused her negative throat culture. I did stop giving them to her the day before we went to see her doctor and several days before her blood draw for checking her ASO titers. Where could I find information on the titers not rising due to an immune response problem that I could share with her doctor?
Smartyjones, I am aware that her behavior coincides with the PANDAS symtom lists I have read. That is why I am searching for answers here. I just needed some confirmation from others who have been through similar experiences. I have often wondered over the years if she might have PANDAS. However, her symptoms were pretty mild and she didn't fit all the criteria. Like she never had a sudden onset of symptoms (before this year) that I could remember. Also, she has had many of her issues from birth, and I read that the onset would not have happened until a child is three. I have often wondered about the infants that are exposed. Since their immune systems are so immature I would think that they would be at an increased risk of PANDAS. Especially since they are usually undergoing so many different vaccinations during this time. My daughter received her first vaccinations around the time that my husband had strep (4 months).
I am also aware of PANS. I also have wondered about "mental illness" having it's root in infectious cause. My mother became very ill and had a high fever when she was pregnant with my oldest brother. He then had a bad reaction to a smallpox vaccine he received as an infant. He was taken to UCLA when he was five. They told my parents that he was mentally retarded. At 15 he went into a catatonic state for 6 weeks and when he came out of that he was having phychotic episodes. He was diagnosed with schizophrenia. When I think back now, he had many PANDAS symptoms. He had OCD, ticks, and hyperactivity. He never had rages until he was 15. Very facinating.
My mother-in-law had rheumatic fever when she was a child.
Thank you so much for the encouragement. I have no plans of changing course at this point. I do believe that we are dealing with an infectious etiology. Finding out how to help her is the big concern at this point.
How is your son doing now?
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I believe my nine year old dd has PANDAS. Her doctor first suggested it as a possibility when her behavioral issues were going through the roof everytime someone in the house had strep. She had never been diagnosed with strep before this time. The first time she was exposed was when she was four months old, and my husband was diagnosed with it. We have always homeschooled her so her exposure beyond that has been limited.
In January we found out that a friend of hers that had been visiting the day before had come down with strep. A few days later my husband and I caught it. I was sick in bed and she kept having rages that were directed toward her little sister. I could not figure out why she was doing this. As I started to get better I started giving her raw garlic to keep her from getting strep, and the behaviors subsided. Her sister was diagnosed with strep in March. My oldest was complaining of a stomach ache so I had them swab her. It came back positive. The doctor was very surprised as she had no symptoms other than her stomach. She was feeling better by that evening so I opted not to give her the perscription antibiotics. However, the aggressive behaviors were back. I started her on raw garlic to keep her from getting strep (I was still not suspecting PANDAS at this point) and again the behaviors subsided. We went on a trip a few days later. I forgot to give her the garlic for a couple of days, and the behaviors returned. Again I started the garlic and the behaviors subsided. At this point I began to suspect PANDAS.
In April she woke up with a fever and complained of a sore throat. I took her in and she tested positive for strep. I talked with her doctor about the behaviors we had seen and he suggested PANDAS. I started her on Amoxicillin that afternoon. The next day she was again becoming very aggressive and emotional. I also began noticing that she had lots of new tics. About 5 days after starting the antibiotics the behaviors subsided. The next day she woke up with an itchy rash. My husband took her in to see the doctor and it was confirmed to be an Amoxicillin reaction. However, the doctor would not prescribe a different antibiotic. She insisted that she had been on antibiotics long enough to eradicate the strep. This was not her primary doctor that had suggested PANDAS.
Two days later the behaviors were back. I immediately called the doctor's office to request antibiotics. Her primary doctor said that he could not prescribe them but asked to see her. The office made an app. for the next week. When we went to see him he could see changes in my dd. He ordered a throat culture and a blood test to check her ASO titers, throid, and iron levels. All her tests came back within normal ranges and her ASO titers were low. Her throat culture came back negative. At this point her doctor ruled out a PANDAS diagnosis and suggested she is mentally ill. There is a history of mental illness in my family on both sides that he is aware of. He referred her to a psychiatrist.
I'm not sure where to go from here as I believe that we are dealing with PANDAS. I told the doctor that I was going to try to treat her with natural supplements before taking her to a psychiatrist. She has always had neurological issues, and many of the behaviors we are seeing have always been there. However, they are greatly magnified right now.
Some of these behaviors are:
rage/aggression
tantrums
separation anxiety
irrational fears
defiance
tics
OCD
meltdowns
low frustration tolerance
restless energy
noise sensitivity
Any help would be greatly appreciated.
Does your child actually seem to be better in the midst of an illness?
in PANS / PANDAS (Lyme included)
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Yes, my DD caught a cold about one month after her PANDAS onset, and she was herself for nearly a week. I began to think we were out of the woods As she recovered from the cold, all the symptoms came back. At that point I began to wonder if perhaps her immune system was distracted with fighting the cold instead of attacking her brain.