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Please respond if you have more than 1 PANDAS child


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Hi, I posted a few weeks ago about my non-pandas dd6 having an anxiety attack that landed us in the ER. I was worried because, yes...she had a strep infection about 1 month prior to the attack. Well, we've been through influenza b, croup, influenza a, and now strep again. Now, last week ds3 had strep ( I had no idea) and then he developed a rash...so I took him to the urgent care fearing strep....and sure enough it was. The next day, my PANDAS dd7 "had a rough day". Amazingly after ds3 was on abx for 24hrs, PANDAS dd7 went back to being ok. She's been doing great since we started Kelflex 2 months ago, probably 95% better.

 

Well, of course dd6 started to say that her throat hurt on thursday. I took her in, strep test was negative, but dr said he would put her on abx anyways since sibling had strep. This child has had strep twice when amox. didn't work, which is what the dr prescribed, but I felt that I was lucky that he would prescribe anything considering her test was negative, so I didn't want to rock the boat and ask for something else. We started the amox..... and no change. She is still complaining. I call the dr yesterday and they say to give it until wednesday, and if not better by then, bring her back. Last night poor non-pandas dd6 had a breakdown :( Crying, sobbing, telling us she never wanted to go to school again b/c she didn't want to leave me.....and crying that she had this weird feeling that we didn't love her anymore. This is so out of character for her....to me it lets me know that we definately need to have some bloodwork done and investigate.

 

What I'm asking you guys is this: what do you think? and I would love to hear from parents on the forum that have more than 1 child with pandas. Unfortunatley this is exactly how my PANDAS dd7 started...not wanting to go to school b/c she didn't want to leave me. My fear is that the dr that is helping us is going to think that I'm nuts :wacko: when I come in telling him that now another child has it too. Between the 4 children, I have been there 7 times in 3 weeks.....I'm starting to feel like he thinks I'm nuts :blink:

Please send me your suggestions, thoughts, opinions, advice.... Thanks!

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I have 2 children. Both have been diagnosed with pandas by Dr L. However, in our situation they had / have very different symptoms. Dr L said there is a high incidence among siblings. Which makes sense, if Pandas kids have a genetic predisposition than it makes sense siblings would often be positive for pandas too.

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We have 2 boys, both PANDAS/PITAND. Oldest first showed symptoms when he was 4, but went 6 to 7 years before diagnosis since we didn't know about PANDAS back then. We are still trying to resolve PANDAS/PITAND symptoms. His brother showed some tics in Jan 2010 when he was 8 and we got him on abx right away. Tics stopped within 3 days and we have only had one other sign of symptoms that also resolved quickly when put on abx right away. We also thought we were CRAZY when we suspected second child also had PANDAS/PITAND, but from reading on this forum it seems it should not be a surprise for siblings to also have PANDAS/PITAND. You are not nuts - trust your instincts! It is hard to do things that cause people to question our sanity, but it is the right thing to do ...

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NVAmom can attest to this....At our first pandas support group meeting in July, 4 of us met...we all had one pandas child. When the same four moms met a couple of weeks ago, we all had 2 pandas children. In just six months we doubled. And like NVAmom's kids...mine also present totally different.

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Great point forpj! Definitely trust your instincts! I know your apprehension though. I need to request a 504 plan at school for my dd. They thought I was crazy when I requested it for my ds when the school only saw minimal difficulties with his school work. Now I'm going to request it for my dd and they see no problems.

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The question is, does DH think you're nuts!? :lol:

 

Do what you have to do, be a warrior mom. Go out there and do the bloodwork. I'm doing it with my four year old. It's the right thing to do.

 

Michael

 

LOL....I've read about alot of husbands on this forum that "don't get it" or "don't understand" and I'm so thankful that my dh is the opposite. He completely understands PANDAS.... now I'm the one that does all the research, but I try my best to explain to him what I've learned. When we joined a study for children with OCD at Duke University last year, he went each and every week with me and dd7 and he learned a lot! He is wonderful!

Well, I've gotten pretty good at demanding the dr's to do bloodwork.....so here we go :wacko:

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Hi, I posted a few weeks ago about my non-pandas dd6 having an anxiety attack that landed us in the ER. I was worried because, yes...she had a strep infection about 1 month prior to the attack. Well, we've been through influenza b, croup, influenza a, and now strep again. Now, last week ds3 had strep ( I had no idea) and then he developed a rash...so I took him to the urgent care fearing strep....and sure enough it was. The next day, my PANDAS dd7 "had a rough day". Amazingly after ds3 was on abx for 24hrs, PANDAS dd7 went back to being ok. She's been doing great since we started Kelflex 2 months ago, probably 95% better.

 

Well, of course dd6 started to say that her throat hurt on thursday. I took her in, strep test was negative, but dr said he would put her on abx anyways since sibling had strep. This child has had strep twice when amox. didn't work, which is what the dr prescribed, but I felt that I was lucky that he would prescribe anything considering her test was negative, so I didn't want to rock the boat and ask for something else. We started the amox..... and no change. She is still complaining. I call the dr yesterday and they say to give it until wednesday, and if not better by then, bring her back. Last night poor non-pandas dd6 had a breakdown :( Crying, sobbing, telling us she never wanted to go to school again b/c she didn't want to leave me.....and crying that she had this weird feeling that we didn't love her anymore. This is so out of character for her....to me it lets me know that we definately need to have some bloodwork done and investigate.

 

What I'm asking you guys is this: what do you think? and I would love to hear from parents on the forum that have more than 1 child with pandas. Unfortunatley this is exactly how my PANDAS dd7 started...not wanting to go to school b/c she didn't want to leave me. My fear is that the dr that is helping us is going to think that I'm nuts :wacko: when I come in telling him that now another child has it too. Between the 4 children, I have been there 7 times in 3 weeks.....I'm starting to feel like he thinks I'm nuts :blink:

Please send me your suggestions, thoughts, opinions, advice.... Thanks!

 

My ped thought I was nuts, too, when ds3 developed pandas, and it didn't help that he was only 15 months at the time. How do I know it was pandas? sudden onset eye tics and ragey tantrums during fever, at the same time that ds6 had pos strep test. No doubt, even the local neuro suggested it without me bringing it up. Anyway, after getting over my own denial and devastation (he had also been recently dx'd with chiari malformation and we were looking at some strong features of autism at the time - it was all so over the top for me), I took him to a DAN doctor who also has 2 boys with pandas and didn't bat an eye at the fact that both of my boys have it. Personally, I would not waste one more minute with a doc who doesnt' fully "get it", it's just going to frustrate and exhaust you. I have a couple docs you could get established with (in person) and then you could do it all over the phone. PM me if you want more info.

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I am so glad you started this thread. My ds8 began having outrageous rages and ODD symptoms when he was 6 1/2, a non-productive constant cough that would not seem to go away. (He had a + throat culture 6 months prior, but I hadn't connected it yet). We seemed to get past it after about 3 months, but it started up again with greater intensity a year later in the summer when he was 7 1/2. So I scoured these boards and put together the diagnosis mostly by myself. Found a wonderful doctor who agreed and sure enough his titers were elevated. He's been on zithro for 6 months and although he is still quite moody at times, his rages have pretty much disappeared. He also has some tics still if you want to call them that - sybtle neck stretch, nose clearing, and at times the cough.

 

Now, we are concerned that our dd6 may be showing symptoms. Hers are different though. She will tell em at random time that her legs ache, her chest hurts, she will have a meltdown crying (probably due to anxiety of something - like she was not ready to turn out the lights for bed and the next thing you know she's sobbing). She is also a little brattier. This may not sound much to a doctor, but this kid used to be "the perfect child". She has such a good nature, sweet, happy, and now she is moodier as well.

 

But I am embarrased to tell the doctor because then they will look at me like I am crazy, especially since my kids are not presenting with the "classic" OCD and tics. Certainly my ped thinks I am crazy - I asked her to add the strep titers to the routine bloodwork they were ordering, and she refused (via her sec'y) saying she's not involved with our specialist and doesn't know the case, so we should have it done through the spec. I mean, really, why have the kid have blood drawn twice, and what's it going to hurt her to just see what the titers are?

 

I don't know how much to trust my instincts that she also has Pandas. Maybe I'm just a stressed out mother and crazy like everyone thinks.

 

I am also scared for my kids, their future, and selfishly for myself and the struggle it is every day. I have 5 kids and afraid I see a little of Pandas everywhere I look.

 

Thanks for the vent!

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Sorry I don't have time to go into the whold story, but I have three children who all have PANDAS / PITAND to some degree. The kicker is that I didn't recognize it in my 7 year old daughter because it was so different than the boys. She didn't tic as much but acted out defiantly more & I always put that down to her strong willed personality. It wasn't till she got a flu mist and within 24 hours she was refusing to write because she though it was to ugly and other OCD type behavior. Finally.....brick over my head...it all became clear as a bell. She has continued to worsen almost daily till now she is at a crisis point. Please act on your gut and what you really know is the truth. The quicker you start treatment the better she will respond. Good luck!

 

Dedee

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My DD has had PANDAS since Oct. 2006. Just 3 weeks ago (after 4 weeks of being too scared to sleep alone or even use the bathroom alone for no apparent reason) my DS started the eye rolling tic during his Karate class. I got so upset that I had to go outside, cry my eyes out and got so worked up I was dry-heaving in the parking lot. It's like my night mare coming true all over again. Then I tried to get him antibiotics and my normal Dr wasn't in. Her partner says,"so your daughter has a very rare disease and now you think HE has it too?" I wanted to smack him. IT IS genetic!! I had it as a kid too but no one knew what it was, i still have the eye-rolling tic occasionally but my case never got as bad as it has in my children so I was lucky.

 

Now I'm looking at IVIG for both of them. My DD had IVIG in August with Dr. K, but 6 weeks later got another case of Strep and it undid all her wonderful progress. Now I'm looking into doing it locally and I'm trying to find cheaper IG or Gamunex, I did find a local Dr here in Charleston, SC that will do it though if anyone in the area needs it.

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I have 7 1/2 yr old twins who present very differently. For a long time I only focused on my son thinking that he had pandas. He presented with ocd, odd and minor things that i discovered were tics. My daughter had frequent urination and would go ballistic if I wouldn't take her to the bathroom two minutes after she just went. I used to think she just like visiting every public bathroom. She also used to line up ask her dolls and pretend to teach them.....I thought was cute. Time out never worked on her, never got to her just sitting quietly and then apologizing. Till today she will scream for hours, never giving in. They both have pandas diagnosis and have Cunningham scores showing pandas. My 19th month also has Cunningham score to show pandas range. I have no idea why they have pandas...i don't have ocd and no one in my family does. My husband is anal, likes to get things done immediately so theres s bit of ocd, but nothing major. The twins just had igenex so awaiting results. Wondering if will be negative if they have been on so much antibiotic and had ivig. Anyone know?

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