AIWS after flu/tamiflu: my son's story
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JoAnn Kuhn
Mar 10, 2014, 5:02:49 PM3/10/14
to alice-in-wonde...@googlegroups.com
My 7 year old son just recently started complaining about AIWS symptoms. Here's his history...sorry it is long:
When he gets hot while sleeping, he has nightmares, so we've always taken care to have him wear light weight pajamas, use only a light comforter, and keep the heat off in his bedroom. He also has nightmares when he runs a fever.
On January 14th, he got sick with the flu. He had a fever of 103 and a bad headache, but was otherwise ok. Because I had to take my older son to the doctor's office the next morning, I called and asked if they wanted to see him. They did and fit him in just before my other son's appointment. At the doctor, they determined that he didn't have meningitis, and he tested positive for influenza a. They told me, "we treat for that now," and gave us a prescription for Tamiflu. I thought that I had previously read something about Tamiflu that made me think we didn't want it, but couldn't remember, so I asked the doctor about side effects to be concerned about. She (not our regular pediatrician), told me that there was nothing to worry about. My older son's allergist and the pharmacist all answered the same; Tamiflu was well-tolerated with no adverse effects to be concerned about. Rather than doing my own research, I trusted them.
I gave him his first dose when we got home. Later that night, we put him to bed. His fever was reduced to somewhere between 100 and 101 with medication. About an hour and a half later, he woke up crying hysterically. Trying to calm him, we brought him out to the kitchen. When he touched the kitchen counter, he pulled his hands away suddenly like it had hurt him. My husband tried to console him, and he looked at my husband with a terrified look on his face. He later told us that it looked like we had large, gaping holes in our mouths. It took 10-15 minutes to calm him. While this was going on, I was skimming the package insert for Tamiflu and found out that it is known to cause hallucinations, especially in Japanese children. He finally fell back to sleep, but woke up three more times with hallucinations.
We talked to the prescribing doctor on the phone the next morning. She seemed stumped because we aren't Japanese, but assured us that the hallucinations will end abruptly when the medicine was out of his system. We never gave him another dose after the first one.
Over time, the hallucinations became night terrors which became waking up from bad dreams which became waking up confused and disoriented. These wakings usually occur about an hour and a half after going to sleep, regardless of when he goes to sleep. He complained about being hot at night, so he started sleeping without clothing, under a light comforter, with the heat off, and the window cracked open (outside temp 30-40 degrees, bedroom temp around 60 degrees). At some point, we talked to our regular pediatrician who suggested giving him Benedryl, Ibuprofen, and fish oil at bedtime in an attempt to "reset his brain." Following his advice, resolved the feeling too hot problem. However, he continues to wake up badly 9 out of 10 nights.
He is also complaining about AIWS symptoms. It normally occurs within a few minutes of going to bed (before he falls asleep), though he has daytime occurrences, too. The daytime ones seem to be triggered by the computer. He complains of things looking very far away, people's heads being too small, and even the slightest sounds being loud. It frightens him, and he is now afraid of the dark...sleeping with the blinds open, the door cracked, and a nightlight to help alleviate his fear.
There is a case study of a 10 year old girl who developed it after flu/Tamiflu. Her case resolved after two months. I took that case study to the pediatrician who suggested that fevers/flu can cause these symptoms, but he did document the AIWS and case study in my son's file. However, he did not have any treatment recommendations other than to see if it resolved like hers did.
My husband feels badly for our son but thinks it is getting better so isn't worried. I'm naturally more of a worry-wort and tend to do my own research. I've seen the correlation with migraines, but he doesn't have headaches except that one during the first two days of the flu. However, I do have migraines so there is some family history. I've seen the correlation with epilepsy, but he's never had a seizure that we are aware of. My husband used to have seizures so there is some family history there too. I personally think Tamiflu is the trigger since it is known to cause hallucinations in children and that's when all this started.
At this point, he isn't receiving any medical care or further testing for this. It is my goal to work on general health with whole foods, fruit and spinach smoothies, fish oil, and any other brain-healthy food I can get into him. I'm also trying to reassure him that he's ok and that being calm will help. I'm also diffusing calming essential oil blends in our home.
When he gets hot while sleeping, he has nightmares, so we've always taken care to have him wear light weight pajamas, use only a light comforter, and keep the heat off in his bedroom. He also has nightmares when he runs a fever.
On January 14th, he got sick with the flu. He had a fever of 103 and a bad headache, but was otherwise ok. Because I had to take my older son to the doctor's office the next morning, I called and asked if they wanted to see him. They did and fit him in just before my other son's appointment. At the doctor, they determined that he didn't have meningitis, and he tested positive for influenza a. They told me, "we treat for that now," and gave us a prescription for Tamiflu. I thought that I had previously read something about Tamiflu that made me think we didn't want it, but couldn't remember, so I asked the doctor about side effects to be concerned about. She (not our regular pediatrician), told me that there was nothing to worry about. My older son's allergist and the pharmacist all answered the same; Tamiflu was well-tolerated with no adverse effects to be concerned about. Rather than doing my own research, I trusted them.
I gave him his first dose when we got home. Later that night, we put him to bed. His fever was reduced to somewhere between 100 and 101 with medication. About an hour and a half later, he woke up crying hysterically. Trying to calm him, we brought him out to the kitchen. When he touched the kitchen counter, he pulled his hands away suddenly like it had hurt him. My husband tried to console him, and he looked at my husband with a terrified look on his face. He later told us that it looked like we had large, gaping holes in our mouths. It took 10-15 minutes to calm him. While this was going on, I was skimming the package insert for Tamiflu and found out that it is known to cause hallucinations, especially in Japanese children. He finally fell back to sleep, but woke up three more times with hallucinations.
We talked to the prescribing doctor on the phone the next morning. She seemed stumped because we aren't Japanese, but assured us that the hallucinations will end abruptly when the medicine was out of his system. We never gave him another dose after the first one.
Over time, the hallucinations became night terrors which became waking up from bad dreams which became waking up confused and disoriented. These wakings usually occur about an hour and a half after going to sleep, regardless of when he goes to sleep. He complained about being hot at night, so he started sleeping without clothing, under a light comforter, with the heat off, and the window cracked open (outside temp 30-40 degrees, bedroom temp around 60 degrees). At some point, we talked to our regular pediatrician who suggested giving him Benedryl, Ibuprofen, and fish oil at bedtime in an attempt to "reset his brain." Following his advice, resolved the feeling too hot problem. However, he continues to wake up badly 9 out of 10 nights.
He is also complaining about AIWS symptoms. It normally occurs within a few minutes of going to bed (before he falls asleep), though he has daytime occurrences, too. The daytime ones seem to be triggered by the computer. He complains of things looking very far away, people's heads being too small, and even the slightest sounds being loud. It frightens him, and he is now afraid of the dark...sleeping with the blinds open, the door cracked, and a nightlight to help alleviate his fear.
There is a case study of a 10 year old girl who developed it after flu/Tamiflu. Her case resolved after two months. I took that case study to the pediatrician who suggested that fevers/flu can cause these symptoms, but he did document the AIWS and case study in my son's file. However, he did not have any treatment recommendations other than to see if it resolved like hers did.
My husband feels badly for our son but thinks it is getting better so isn't worried. I'm naturally more of a worry-wort and tend to do my own research. I've seen the correlation with migraines, but he doesn't have headaches except that one during the first two days of the flu. However, I do have migraines so there is some family history. I've seen the correlation with epilepsy, but he's never had a seizure that we are aware of. My husband used to have seizures so there is some family history there too. I personally think Tamiflu is the trigger since it is known to cause hallucinations in children and that's when all this started.
At this point, he isn't receiving any medical care or further testing for this. It is my goal to work on general health with whole foods, fruit and spinach smoothies, fish oil, and any other brain-healthy food I can get into him. I'm also trying to reassure him that he's ok and that being calm will help. I'm also diffusing calming essential oil blends in our home.
Has anyone else experience this after Tamiflu?
lily richards
Mar 17, 2014, 9:52:15 AM3/17/14
to alice-in-wonde...@googlegroups.com
hello :) i've had aiws since i was about 14, i've never had a migraine but my mum suffered with them, apparently mine is due to 'migraine auras' which is when you don't actually feel the pain of a migraine, however any time i get the flu it triggers my symptoms. so far doctors i have seen haven't been much help, even when i have been hallucinating in a&e they haven't helped me! i recommend going to see a dietrician with your son. i went to see a macrobiotic dietrician who helped me so much, and since my symptoms haven't got better but have been much more manageable and less frequent ! hope everything gets better soon :)
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