H1N1 post-pex

[dcmom]

So, Julia has been perfect since pex a on 10/20. She came down with H1N1 last Thursday, immediately started on Tamiflu, and was better by Saturday. Yestarday I saw a few things (mild irritability, slight difficulty sleeping), my husband was able to rationalize them away (although he is also uneasy)- but my radar is totally up. This morning she had some separation issues at school. So, clearly something is going on.

 

What to do? Dr Latimer is not in on Mondays, (and I want to wait a day to see what happens anyway) so I will hopefully talk to her Tuesday.

 

Today is her long day- school, homework and then horseback riding lessons (her joy in life). I am considering keeping her home tomorrow to rest. I should have just kept her home today, but once I got her to school- I wanted her to be successful if possible. Do you find you keep your pandas kids home more often to rest? Do you think that is valid?

 

She is currently on 200mg/day zithromax. I am considering upping that for a week to 400mg/day, any thoughts? I think I would rather try that than switch to Augmentin, at this point.

 

Steroids, I have a bottle for a burst in my cabinet, prescribed by Dr Latimer if needed. I need to discuss with her how long after the flu and Tamiflu I should wait to start julia. If her issues stay really mild- how many days would you give it before you start the burst? I don't want to panic and give her meds she doesn't need...

 

Any input would be appreciated. (I am amazingly keeping very calm...)

 

- Although funny enough, last night my dh said if she has a flare- he wouldn't do pex again as it wouldn't have been worth it. I feel like I would be willing to do pex yearly if need be to keep her either perfect or mild I am sure whatever happens we will come together, but it is funny how initial reactions can be so different...

 

Eileen

[thereishope]

Has she had PANDAS reactions to viruses before? What has that been like? When my son had H1N1, he did have a slight behavior setback after he started to get better from H1N1. Luckily it didn't last long. Hopefully it will be the same for yours.

 

With H1N1, I thoughts my kids were getting better, sent my oldest (non PANDAS) to school and he came back wiped out. I ended up pulling him out of school a little longer to give his body time to rest. As for my PANDAS son, I learned from the oldest and kept him out of school longer (even though he was feeling ok) just to give his body time to heal.

 

If you are waiting to give the steroid until you speak to Latimer, I would suggest Ibruprofen for now. Try to nip any inflammation in the bud.

 

Try to get her to bed early. If she's wiped out from school, maybe it would be best to skip the riding tonight. Also, even though the office is closed today, at least put an email into Latimer. Perhaps he read them on her days off, she'll be briefed on her status, and she will know to be waiting for a call from you.

[dcmom]

Thanks Vickie- totally appreciate what you say.

 

My gut told me not to send her to school today, I am sorry I didn't listen. I am visiting at lunch, and will bring her home if she looks tired. I will probably keep her home tomorrow.

 

Good idea on the advil- will start this afternoon!

 

Missing riding is our last resort- I have found with pandas that my priority is to give her joy

 

She hasn't really had a virus since pandas, so I didn't know what to expect. Was your setback mild, and how long do you think it lasted (a few days)?

 

Thank you!!!

[KeithandElizabeth]

Hi Eileen:

 

I am not as familiar with the healing process post PEX, but I assume it may have an up and down cycle like IVIG. My son has been about 90% better post his first IVIG 12 weeks ago and then had a big flare last weekend. I think he was hanging around several family members with colds and even though he didn't seem sick, he reacted. Did Dr. L ever say that post PEX can be bumpy? Advil has really helped us and he seems to be recuperating. We also increased his abx for 10 days in case he was somehow exposed to strep.

 

I know it is hard to see them doing so well and then see a little relapse. Again, I think the process of healing the brain can take some time.

 

Elizabeth

[Kayanne]

These are all the same questions that have been swirling in my brain too. I know that I was a little worried because it seems like she was having an emotional fit, that was PANDAS-like, but she pulled herself out of it...My heart was in my throat, and my husband only saw a little girl who would be irritable because she was recovering from the flu.

 

My DH and I have talked circles about when we think prednisone should be given...there is no easy answer...really you know your child best. During our last phone consult, Dr. Latimer said to call her immediately if we see any PANDAS re-surface...I think my husband and I came the the consclusion that we would let Dr. L determine if it is really needed...

 

I think I would up the zith prior to trying prednisone...see if you get any benefits from the other properties of it. The Tamiflu may also be contributing to her moodiness.

 

I did keep her home an extra day to rest...

 

Good Luck

 

~Karen

[sf_mom]

As you know upping the antibiotic has always helped us. I don't think it can hurt to do it for a short period of time '10 days'. I'll be sure to update you with Dr. K's perspective on this when we return next week.

 

-Wendy

[thereishope]

When the virus occurred mid way into recovery after an active strep infection, the behaviors were obvious. His OCD spiked. That occurred while he had the cold. It seemed like when the cold was completely out of his system, the OCD calmed down. Ibruprufen helped A LOT.

 

When he had H1N1, he was completely recovered from his last PANDAS exacerbation for a bit, like maybe 2 months. That setback literally only lasted 2 days and was not a "consistent" setback. Very mild. A non PANDAS parent wouldn't have really though anything of it. That one did not occur until 3 days post fever.

 

 

 

Thanks Vickie- totally appreciate what you say.

 

My gut told me not to send her to school today, I am sorry I didn't listen. I am visiting at lunch, and will bring her home if she looks tired. I will probably keep her home tomorrow.

 

Good idea on the advil- will start this afternoon!

 

Missing riding is our last resort- I have found with pandas that my priority is to give her joy

 

She hasn't really had a virus since pandas, so I didn't know what to expect. Was your setback mild, and how long do you think it lasted (a few days)?

 

Thank you!!!

[mom md]

I am so sorry you are seeing things...my guess is your mother's intuition is right. My son flared afer H1N1 exposure too. I would up the antibiotic and even consider a strep test. If things continue I would do the steroids. We had resolution within 3-4 days and then once again a perfect 10 days. Now we are seeing some things again...interesting the teacher just e-mailed me that a boy in the class was diagnosed with strep today. We are seeing the immunologist today to see if she has a long-term maintenance solution. I will keep you posted.

I do think that this all points towards this being an autoimmune issue though rather than an infectious at this point. If a virus can pull the trigger, upping the antibiotics won't hurt but it may take the steroids.

Hang in there and please keep us posted.

[bronxmom2]

Just wanted to say sorry you're seeing this... I agree that I would let her rest as much as possible.

 

My son, almost 3 weeks post-PEX, seems tired to me, yawning in the afternoons... my instinct is that he needs extra rest right now. And I have learned to have a great deal of respect for my own maternal instincts!

 

I have been tracking everyone's stories, and it does seem that exposure to stuff after PEX/IVIG seems to delay the healing but not totally derail it.

 

Good luck, thinking of you----