Anyone's child post PEX had the flu?

[FallingApart]

To add one more layer of negativity to my story from yesterday, DD woke up in the middle of the night with a fever, headache and bodyaches. Since she is only 4 and this is the first time she has used words to describe an illness. Having just had the swine flu myself, I'm assuming this is either the flu or the swine flu.

 

Has anyone who has had PEX encountered the flu? Anyone gotten it so shortly after PEX? Should that fact add to my stress level? I believe both of my girls have it (DD2 and DD4). Any advice on what to do? I saw recently that someone posted about using Valtrex for viruses. I was going to ask our ped about this in general. Any thoughts on that?

 

Thanks so much!

[Ellen]

Falling Apart, so sorry to hear that your girls the flu. This may explain why you were seeing a worsening your PANDAS daughter's symptoms post PEX. My son had some kind of virus with vomiting and fever four weeks post PEX but he got over it in one day and I don't think it was the flu. You may want to try children's oscillococcinum, which is a homeopathic flu remedy okay for children age 2 and up. I have stocked up on both the children and adult versions but never had to use it for anyone in our family so I don't know how well it works. I would definitely talk to the ped about what else you can do.

 

Ellen

 

To add one more layer of negativity to my story from yesterday, DD woke up in the middle of the night with a fever, headache and bodyaches. Since she is only 4 and this is the first time she has used words to describe an illness. Having just had the swine flu myself, I'm assuming this is either the flu or the swine flu.

 

Has anyone who has had PEX encountered the flu? Anyone gotten it so shortly after PEX? Should that fact add to my stress level? I believe both of my girls have it (DD2 and DD4). Any advice on what to do? I saw recently that someone posted about using Valtrex for viruses. I was going to ask our ped about this in general. Any thoughts on that?

 

Thanks so much!

[LNN]

We were 10 weeks post pex when the family got the flu (not sure which kind). Our pediatrician prescribed tamiflu for my Pandas son. We gave one dose and saw side effects of vertigo and dilerium - both documented side effects in the pamphlet. We also saw leg jerks and rapid eye blinking that are not documented for tamiflu but seemed connected to either the flu or the tamiflu. So we discontinued after one dose.

 

The symptoms largely subsided within a day. Two weeks later, we still see occasional eye blinking, some vertigo at bedtime. Hard to say what the cause is. Suspect the tamiflu but will never know. He's on prophylactic abx so don't believe it is bacterial. We are riding it out and it seems to be diminishing.

[Kayanne]

Valtrex and Acyclovir are generally only used for herpetic viruses--I think the post that you are recalling was discussing HH6 or 8? (Human Herpes 6) as a possible cause of Autism...I don't have time to search for it right now.

 

MY PANDAS dd6 and ds4 had the flu two weeks ago. We have not had pex, just a six week course of prednisone in june/july. The ped prescribed Tamilflu for both of them, and it really cut down on their symptoms. My husband also had the flu, didn't take Tamilflu and he was laid up for an extra three days.

 

For us, so far so good...no sign of PANDAS rearing it's ugly head beacaue of the flu! So when you consider that, keep in mind dd's PANDAS is probably a milder case.

 

Tamiflu is known to have some psychiatric side effects, so it should always be considered carefully. That is the main reason my husband and his doctor decided to pass on the Tamilflu, because he has anxiety/panic disorder.

[FallingApart]

After I posted this I thought about the fact that the ped might prescribe Tamiflu. LLM would you advise against it entirely after your experience?

 

I do have the oscio stuff and will start with that this morning right away. I'm glad to hear that this isn't an absolute horrible setback for everyone.

 

I am also completely shocked to say that PANDAS DD is actually being VERY nice to me this morning. She is following my directions when I give her instructions that will help her feel better and she is being polite to me. I'm completely flabbergasted!!

[LNN]

I can only say we won't be using Tamiflu for my son again. I couldn't tell anyone else what do. On one hand. you could try it and see - or talk to Dr Latimer about it, as she knows your particular situation. On the other hand, I was surprised to learn in the pamphlet that Tamiflu only shortens the flu by a little over a day. I thought it was more effective than that. So you have to personally weigh the risks and benefits. As I said, I don't think our side effects - if they are from Tamiflu - are long lasting. But it's a personal call.

 

As for the mood improvement - that's a great sign. As I said in another thread, weeks 2-3 were bad for us. But then things got better each week.

[dcmom]

Julia has the flu now.

 

I am so upset, because she was doing so great. We were to Dr Latimer on Wednesday, and able to report such good news. On Thursday morning she woke up with a slight fever, flushed cheeks, glazed eyes, and a cough. This is exactly how her sister started with the flu two weeks ago. Luckily, I spoke with Dr Latimer (we were there for an appt for my other dd)- and she started Julia on Tamiflu immediately. (Her thought was to minimize the infection as much as possible, and to start within the first 24 hrs- I totally agree) So, within the first 12 hours of illness she had her first dose.

 

Today is day 2, fever and symptoms are mild so far. I am imagining if she has a pandas reaction it will not be until right after she recovers from the flu. My plan is to keep her home from school and resting until I am confident she is out of the woods for everything. I will also keep up the advil for a few days after the flu is gone. She is currently on 200mg zithromax daily. I will double that for a week if and when I see any pandas issues.

 

Needless to say I am so bummed! If she makes it through with no pandas flare, I will be elated, but I am not very hopeful. I am so stressed, because the pex really worked, and now this might mess it all up. With the insurance hassles we are having, I feel like going forward my hands are tied as far as treatment goes.

 

I really am trying to stay positive though. I will keep everyone posted...

[Kayanne]

Julia has the flu now.

 

I am so upset, because she was doing so great. We were to Dr Latimer on Wednesday, and able to report such good news. On Thursday morning she woke up with a slight fever, flushed cheeks, glazed eyes, and a cough. This is exactly how her sister started with the flu two weeks ago. Luckily, I spoke with Dr Latimer (we were there for an appt for my other dd)- and she started Julia on Tamiflu immediately. (Her thought was to minimize the infection as much as possible, and to start within the first 24 hrs- I totally agree) So, within the first 12 hours of illness she had her first dose.

 

Today is day 2, fever and symptoms are mild so far. I am imagining if she has a pandas reaction it will not be until right after she recovers from the flu. My plan is to keep her home from school and resting until I am confident she is out of the woods for everything. I will also keep up the advil for a few days after the flu is gone. She is currently on 200mg zithromax daily. I will double that for a week if and when I see any pandas issues.

 

Needless to say I am so bummed! If she makes it through with no pandas flare, I will be elated, but I am not very hopeful. I am so stressed, because the pex really worked, and now this might mess it all up. With the insurance hassles we are having, I feel like going forward my hands are tied as far as treatment goes.

 

I really am trying to stay positive though. I will keep everyone posted...

 

 

I'm so sorry that this is happening to Julia. Becca had her first dose of Tamilflu within 24 hours too, and within 12 hours she was fine. My son was 12 hours behind her in symptoms (and they seemed more severe and a really quick onset), and he was also running and playing at the same time...but his fever took one more day to stop.

 

I'm just curious, did Dr. Latimer give you a time frame in which PANDAS symptoms might appear? Becca's Fever and headache started Wed. night Oct 28...just over two weeks ago....in everyone's experience, would I have seen an uptick in PANDAS by now?

 

I'm keeping my fingers crossed for both of your daughters!

 

~Karen

[dcmom]

Karen- Thanks for the good thoughts. I am sure others will chime in, but I think you would see pandas within a day or two after she was well. I would think you are out of the woods- which is great news. I am really hoping this won't have an effect on Julia...

[sf_mom]

Prayers that Julia sails through this illness! I know your worry.

 

I will say upping Corsa's antibiotic post IVIG saved him from getting the flu when our twins had it twice.

 

When Julia is doing better please keep pursuing IVIG as that too help prevent any illnesses when she is in such a fragile state.

 

I just e-mailed my husband for our health care advocates name. 'Kevin Flynn' http://www.healthcareadvocates.com/president.html Located in Philadelphia, PA

 

 

 

-Wendy

[faith]

Does anyone think or know if the kids are a little more vulnerable to illness right after the PEX (or IVIG)?

[dcmom]

Hi Faith. According to the HemOnc team, they are not really more vulnerable. While the pex removes the existing antibodies, it doesn't remove the memory, so if needed new ones are made. Their immune system is back to 100% in a week or so. The biggest issue (which is small) is more of a concern about the healing of where the central line was placed, and the fact they were on blood thinners. The kids are really only told to lay low for a few days.

 

My other daughter had the flu a little over a week ago, this is most likely how pandas dd got it...

[peglem]

Does anyone think or know if the kids are a little more vulnerable to illness right after the PEX (or IVIG)?

It seems like they may be with PEX since it removes circulating antibodies. I don't know about IVIG- seems like the donor IgG would be protective?

[EAMom]

I would think IVIG would be protective...since they use it for kids with infections, immunodef., HIV, etc.

[dcmom]

Well, the tamiflu did the job! Julia was better within 12 hours of her first dose. The highest her fever went to was 100.9. Now I am waiting to see if I will see any increase in pandas. So far so good. For those that have had reactions with viruses- how long after did they start? Thanks...