My dd and tamiflu

[britneymag]

My 9 year old dd has been on antibiotics for about two months and they were working in the beginning but they slowly stopped working and her tics and major hyperactivity went way up. She was beyond hyper and couldn't not concentrate for more than a couple of seconds. She couldn't even look us in the eyes for more than two seconds. Her school work went way downhill because she couldnt slow her mind down enough to think about what she was doing or writing. I even posted on here because I was so worried and was thinking of taking her out of school.

 

Well, it hit me that I had seen these symptoms before with her two winters ago. She went through this for about 5 months because we didn't really know about PANDAS yet. She had been sick but I didn't know what she had in November 07 and by March she was crazy ticcing and manic type hyperactive. She went for an appt with her neurologist that was treating her for sensory integration disorder and he said that he had seen lots of kids doing this during the winter. He said that there had been a strain of flu that wasn't showing normal symptoms and that is what she had gone through in November. Since her body doesn't fight the virus and instead fights itself it made sence. He put her on a round of Tamiflu 5 months after having the flu and within a couple of days her symptoms were almost gone except the tics that have never completely gone away. Her manic hyperactivity and inability to concentrate was gone. She could keep a beat again and she had lost all of that. I found her playing Simon and she was able to get past the third level. Most people would think that was normal but she couldn't do it before because her attention span was nothing.

 

Fast forward to now. I got her Dr. to prescribe her Tamiflu 10 days ago. She was sick about 2 months ago when I stuck her on the antibiotics. She came back negative for strep but we thought we had just waited to long so the Dr stuck her on it anyway. I now think she had the flu and just didn't show all the symptoms. She had a fever of 103 for 4 days but never really felt bad and never lost her appetite. Well, now that she has finished her round of Tamiflu she is still ticcing just a bit but I would say just in the past two days she is 70% better. She can sit still and we were even in the car for a total of 6 hours yesterday and she had no meltdowns. Now maybe the antibiotics can do there job. They just couldn't fight a virus.

 

If any of your kids had the flu and are now worse despite the antibiotics you may want to think about this. It is the second time that it has worked for us. We have had two good quiet days and I am hoping for many more:)

 

Melanie

[Tattoomom]

For some reason, our Pediatrician is under the impression that Tamiflu can make tics worse?! Our son had H1N1 in October and ever since, he's had an explosion of new tics and anxieties. He did NOT take Tamiflu as she said that would have made it worse!

 

Glad your dd is improving!

[britneymag]

Tattoomom,

 

If his body can't fight the virus on it's own then his antibodies will cause an explosion of tics and OCD just like with strep. Since my dd got help 5 months after the fact with the tamiflu, she obviously still had the flu inside her 5 months later just wreaking havoc. After just a couple of days on it, she was soo much better. She just felt better. She hadn't felt good for all that time she just didn't know what was wrong.

 

Melanie

[dcmom]

tatoomom- my pandas dd had H1N1 this fall, we gave her Tamiflu. While the tamiflu certainly stopped the flu in its tracks, it didn't stop the pandas episode cause by H1n1. Several other kids on this board also had episodes post H1N1. DD started a steroid burst a few days into the episode, and is now doing really well...

[britneymag]

I don't think we had H1N1 so I don't know what the effects were for that with Tamiflu.

[nevergiveup]

Britneymag,

 

Its funny you wrote this my dd had the best remission of her symptoms especially tics while on tamiflu. It was remarkeable.

 

I know docs are reluctant to prescribe this drug to kids with anxiety, because it can cause anxiety. My ped gave it to my kid for H1N1 but made a very strange comment about how it causes anxiety in some kids. Anyway, I do feel there may be something to why the tamiflu helped so much my dd tics. She stayed on it for 4 weeks prophylactic dose and her tics would stop one hour after dosing. I have thought of testing my dd for XMRV, also found in children with autism and adults with chronic fatigue syndrome.

 

 

Whay do you think? I also feel tamiflu must be a pretty harmless drug becuz pregnant women can take it up to 6 weeks.

[mama2alex]

Melanie,

 

Have you taken her to an immunologist? This seems like a possible red flag for an immune deficiency of some sort. It seems like her immune system couldn't fight off the virus on its own, and in addition is mounting an autoimmune response to the virus.

 

My 9 year old dd has been on antibiotics for about two months and they were working in the beginning but they slowly stopped working and her tics and major hyperactivity went way up. She was beyond hyper and couldn't not concentrate for more than a couple of seconds. She couldn't even look us in the eyes for more than two seconds. Her school work went way downhill because she couldnt slow her mind down enough to think about what she was doing or writing. I even posted on here because I was so worried and was thinking of taking her out of school.

 

Well, it hit me that I had seen these symptoms before with her two winters ago. She went through this for about 5 months because we didn't really know about PANDAS yet. She had been sick but I didn't know what she had in November 07 and by March she was crazy ticcing and manic type hyperactive. She went for an appt with her neurologist that was treating her for sensory integration disorder and he said that he had seen lots of kids doing this during the winter. He said that there had been a strain of flu that wasn't showing normal symptoms and that is what she had gone through in November. Since her body doesn't fight the virus and instead fights itself it made sence. He put her on a round of Tamiflu 5 months after having the flu and within a couple of days her symptoms were almost gone except the tics that have never completely gone away. Her manic hyperactivity and inability to concentrate was gone. She could keep a beat again and she had lost all of that. I found her playing Simon and she was able to get past the third level. Most people would think that was normal but she couldn't do it before because her attention span was nothing.

 

Fast forward to now. I got her Dr. to prescribe her Tamiflu 10 days ago. She was sick about 2 months ago when I stuck her on the antibiotics. She came back negative for strep but we thought we had just waited to long so the Dr stuck her on it anyway. I now think she had the flu and just didn't show all the symptoms. She had a fever of 103 for 4 days but never really felt bad and never lost her appetite. Well, now that she has finished her round of Tamiflu she is still ticcing just a bit but I would say just in the past two days she is 70% better. She can sit still and we were even in the car for a total of 6 hours yesterday and she had no meltdowns. Now maybe the antibiotics can do there job. They just couldn't fight a virus.

 

If any of your kids had the flu and are now worse despite the antibiotics you may want to think about this. It is the second time that it has worked for us. We have had two good quiet days and I am hoping for many more:)

 

Melanie

[smartyjones]

hey melanie - how long was your daughter on the tamiflu? did you see the good results even after she got off it?

thanks

[britneymag]

hey melanie - how long was your daughter on the tamiflu? did you see the good results even after she got off it?

thanks

 

Sorry I haven't replied. We are away for vacation and don't have the best signal. My dd was on the tamiflu for 10 days. She has been off for a week now and she is still doing great. She does still have a couple of tics. Nothing vocal which is usually what she does most. She has had the strange head, hand, and leg movements that I now think are SC but nothing else. Overall she is 90% better than she was three weeks ago.

 

I have never thought about an immunologist because the neuro that we have taken her to is also an allergist and treats with antivirals and antifungals. If he isn't as agressive when we go see him in February i might look into that. He has never treated her for PANDAS before because he just recently started treating for it.

 

Melanie

[smartyjones]

melanie - hope you had a nice vacation. and i wasn't anxiously awaiting your reply - i just happened on here after you tonight. i found your post very interesting. my son had been doing quite well on a homeopathic protocol i think is similar in theory to long-term abx. about a month ago, we started taper/change and i think around the same time he was hit with a flu. it was quite mild and i gave him oscillococcium for a few days.

 

he had an exacerbation but not too bad. we put him back up to the previous dose. we had some success with ibuprofen and then a homeopathic remedy that should have similar properties to ibuprofen. he was doing okay but still not back to where he was before (slowly seeming to improve, ~93% pre-pandas). however, he was still very immersed in potty talk - yes, he's only 5 but way over the realm of 'normal potty talk'.

 

b/c of your post, i again gave him oscilloccium for just the couple of days the beginning of this week. BIZARRE! he's stopped the potty talk. it could just be coincidental or a 'normal' progression of symptoms, or that we're busy with Christmas -- but previously, no normal busy activities have made a difference. it does match with me giving him that.

 

i'll keep you posted. for now, i'm enjoying the potty-free conversation! thanks!

[britneymag]

Well, we did soooo good during Christmas holidays. I couldn't believe how much better she was feeling. Family noticed also.

 

In the meantime, my MIL who has lived with me for the past 18 months informed me right before we went on vacation that she is a TB carrier. She is also highly suspect to be a strep carrier and gets cold sores so also a herpes carrier. ACK!!!! Over the holidays we were away from her for 2 weeks and they were the best two weeks for my child in years. The day that my MIL gets back in town she took DD to the movies and she came back ticcing and has various ocd symptoms. I am sooo upset that I am just finding out about the carrier status.

 

I talked to my MIL and told her that I thought she was reacting to her. She said that she feels so bad but she has not talked about getting treated for anything. I'm not exactly sure how to approach her about this and I don't know if a Dr would treat her if she is asymptomatic.

 

She is supposed to moving out in the next couple of months and I will be curious to see if DD gets better when she goes, but I don't know what to do until then. And what about when she wants to have her come over for a visit?

 

Melanie