1 week post IVIG

[EAMom]

Hi Everyone,

 

Our dd had IVIG last Tues. and Weds. (Buster already posted on this). So far we haven't seen a huge improvement . However, she wasn't in a bad exacerbation when we did it...so it may be harder to see the difference. Overall she is happy but has definitely had some weird tantrumy emotional episodes which pass, and then she is fine after about 20-30 minutes. Is this "turning back the pages?" How long has it taken others to see a definite change?

 

When we did the steroid burst in July, it took about 2 weeks to see a change. Her social anxiety/separation anxiety went away and her measurement compulsions stopped (for about a week). She was a happy easy kid! No strange outbursts or tantrums.

 

Also, does anybody have information (or has anyone done this) on putting siblings on prophylactic abs to keep strep out of the house? Our PANDAS dd is still on 250mg/azith daily. Our younger dd cultured positive for strep 2x last school year. Younger dd didn't have any symptoms, just behavior changes in her PANDAS sister. (We cultured her b/c of strep notices in school and a change in her sister.) I remember someone posting about how some of the original Swedo families put siblings on abs to keep the strep out of the environment. We really don't want to "blow it" with strep exposure after IVIG and would certainly be willing to put our non-PANDAS dd on something narrow spectrum like Pen, even if it is just for a year, to give the IVIG a chance to really work. I think our ped will think we are nuts. It would be helpful if we could tell her that Swedo families did the same thing!

 

Boy...I am hoping the IVIG helps. I sure do hate strep at this point.

[dcmom]

EA mom-

 

I did talk to one mom from Swedo's study. Her daughter was cured with pex- never had another problem. She kept all four of her kids on proph abs until her pandas dd went through puberty. I don't know if this was Swedo's idea, or someone else. When she finally took them off the abs, one of the younger ones came down with pandas. He ended up having pex, as well, with Dr Latimer.

 

It is a hard decision!

 

Hope you start to see lots of improvement!!

[ShaesMom]

What a great idea to keep the siblings on abx. We are almost 4 weeks post IVIG and my older son is complaining of a sore throat. Seasonal allergies are normal in my family this time of year and since he is complaining of also having a runny/stuffy nose, no fever, and the symptoms are worse in the morning after an evening of football practice by the tall weeds. I can't decide if I should run him to the doctors office or just relax and not panic. If he was on abx this winter it sure would make it easier to not stress out every time he complains of not feeling well.

 

I took my dd in yesterday because she has a weird looking spot on her nose and the Doctor thought it might be impetigo--caused by either strep or staph! We were at the children's museum last week and I let her paint her face. I won't let them happen again! She has had two days of severe raging since this spot appeared and I'm not sure if its the spot or from the chlorine in the pool. Both episodes took place after swimming. She won't be happy if I tell her no more swimming.

 

EAMOM-Overall our dd has been much improved. Maybe once a week she has had a really bad day and then some minor bad behaviors inbetween. It is great that both you and your husband are a part of this site. It must make communicating about this disease so much easier on your marriage. I can't even get mine to read any posts that I find important. He definitely wants to see her get better but he has left the research and "work" to me. Sometimes it is very frustrating.!

[FallingApart]

OMG, this web just keeps getting bigger!!! I hadn't thought about putting the other siblings on the abx. But if you do that, what about the parents? Do they need it too? Like you, we are one week out from our IVIG with our 3 yo PANDAS daughter. I don't want to lose the effects either. It seems that everywhere I go people are telling me that their children are sick and I swear I am going crazy with fear!

 

I'm interested to see what others reply about this. I hope that you will start to see some great results from your IVIG soon! Best of luck!

[EAMom]

Hi everyone...thanks for your replies so far!

 

fallling apart...I'm not so worried about the grown-ups since they seem less prone to getting strep. Maybe if you are a grow-up that gets a lot of strep that would be worthwhile.

 

The one exception: I did get strep in April (and PANDAS dd lost all ability to write for 1 week!) but I think that was real fluke. That is the only time I think I ever got strep (I remember getting tested as a kid but don't think I ever was positive!). The weird thing is that nobody else in the family got it even though I shared food with my younger dd! (Ha ha ....maybe it was a weird grown-up strain?) Dh has also been tested many times since we found out about PANDAS and he's always been neg.

 

Shaesmom: Dh did order one of those rapid test kits (with about 50 strep tests in it) so he could check us for strep without going in to the doctors all the time. You can order them on amazon. We'll still go into the docs periodically to get younger dd cultured (we'll do the 2-3 day at that point, not the rapid) if anybody is sick. But, it is a nice thing to do for those times when you are just a little worried but don't want to run into the doctor! And yes...my dh is like some mad research scientist reading every darn article possiblly relevant article on strep, immunology, SC, neurology, that he can get his hands on!

 

DC mom...I'll talk to our ped and see what she says. It helps to know what the Swedo families did!

[Suzan]

Since both my girls have PANDAS and are on antibiotics I had not thought of this but in thinking of it, I think I'd be stressed if one was not "protected". I think having non PANDAS siblings on is a good idea, especially while strep is rampant in schools, etc. Curious to see what the doc's think too.

[ShaesMom]

I didn't realize you could order those online. I will definitely have to look into that as winter approaches. Unfortunately, I seem to get strep every time my kids do and most often I am the one who gets the sickest (with the exception of Shae's Pandas). Maybe it has something to with my Fibromyalgia. Somehow my dh never seems to catch it.

[EAMom]

It's funny. We do wonder from time to time if our younger dd does have PANDAS. So, I suppose abs won't hurt from that perspective! She definitely has some "worries" that could be considered OCD'ish tendencies, and she is very sensitive, and does have some anxiety issues. When she is having a meltdown I really wonder! Although, usually we figure out it is b/c she is hungry or tired!

[FallingApart]

Is there any concern for the other siblings' immune systems if they are on preventitive abx? Will it weaken their immune systems if they don't have the need to fight things off due to the abx use? My other dd is only 2 yo so I am worried about that since she is so darn young.

[Buster]

The worry with broad antibiotics is that you might be knocking out some good bacteria -- and in that sense weakening the immune system -- or that you create a strain of antibiotic-resistant bacteria. These two worries are why we're more comfortable with a very narrow spectrum antibiotic for our non-PANDAS daughter (she's 6). Penicillin (for example) is pretty narrow and really only disables strep.

 

I can see why you'd be concerned giving anything to a toddler as their immune system is still forming.

 

The reason we aren't using penicillin on our PANDAS dd9 is that we didn't see curative effects from penicillin/amoxicillin before and we're trying to minimize the number of variables we introduce (change only one thing at a time).

 

Over time, we'd sure like to move off azithromycin, but that won't be for a while as we try to get back to a stable baseline.

 

Is there any concern for the other siblings' immune systems if they are on preventitive abx? Will it weaken their immune systems if they don't have the need to fight things off due to the abx use? My other dd is only 2 yo so I am worried about that since she is so darn young.

[Buster]

Yeah, dw definitely makes fun of me about getting a kit. She says I'm really a frustrated chemist :-)

 

Our true canary is our PANDAS dd -- historically when she starts to flair up, a throat culture on non-PANDAS dd (ie., her sibling) is positive and then negative 3 weeks post antibiotics.

 

Anyway, I still claim it saves time -- even if dw makes fun :-)

 

Buster

 

I didn't realize you could order those online. I will definitely have to look into that as winter approaches. Unfortunately, I seem to get strep every time my kids do and most often I am the one who gets the sickest (with the exception of Shae's Pandas). Maybe it has something to with my Fibromyalgia. Somehow my dh never seems to catch it.