thereishope

Honestly, just seeing the natural sunlight may help not only her, but you too. Now that people are putting up their Christmas decorations, you can drive around and look at them(even if then lights aren't on during the day). Make a game out of it...count how many you see in a matter of 20 minutes. Another reason to get her out every day is after awhile you can run the chance of her getting anxious when leaving the house. I say the max is 2 days without leaving the house at all. Vickie, My daughter doesn't complain about being at home. As a matter of fact she doesn't want to go out a lot of times. I have a 3 year old little girl as well and they have just begun to play together really nicely. My dd6 who has PANDAS has literally just started interacting with her over the past month. It is a wonderful thing to see. You are right about getting her out though. I need to make more of an effort. A drive sounds rather nice to me too. We did walk around the block before it started to get too cold out. Thanks for the input!

About the letter e...if that's one of their biggest worries, that's just silly. Even in the first grade kids may write some letters or numbers backwards. Don't worry about that at all. I understand where you are coming from about Christmas and just that need to have it be happy. I totally get that. If you want to keep her home for the rest of the year, then do that. As for being a prisoner in the house, just make sure she gets out every day, even if for a drive in the car, a walk somewhere, just something. Is she complaining about being at home?

I am so happy we have another uplifting update!

Does she take a probiotic?

I asked about brands since the right one really varies with kids. For my son (some kids are the opposite), Claritin made him hyper and ramped up OCD starting on day 11 of use. Dye free Benadryl worked for him w/o causing sleepiness. He also recently started to use Natural D-Hist Jr. That a chewable and might be something worth looking into. That's great for allergies. MY PANDAS took it fine and it was the only allergy med that helped with my non-PANDAS son's bad allergy induced sinus infection earlier in the year.

I don't have too much time to answer, but wanted to touch base on allergies. What allergy med do you use?

Yes, allergies can affect PANDAS to the point that symptoms can be as bad as they are with strep, especialy earlier on in treatment. If she had a sinus infection, they can be very hard to clear too. Sometimes, even two antibiotics at the same time are needed along with a nose spray like Flonase. I'd call the dr that prescribed the Omnicef and explain what you just said about the sinuses not getting better. Regardless of PANDAS symptoms present, the sinus symptoms still present may warrant an additional antibiotic over the phone with the dr. I've ad the dr switch and add antibiotics for sinus infections over the phone, and those were doctors that were very protective of abs. I would call tomorrow since waiting too long may make the doctor say they want to see your child again (unless you want them to see your child again). Also, yes, meltdowns can last for hours. And meltdowns are different than the tantrums we've experienced as a "normal" kid tantrum. Finally, another yes, to CBT or ERP not working in the midst of an exacerbation. Nothing worked very early for my son. It wasn't until much later could we attempt coping techniques.

Messaged you the info.

Motrin is another company I have contacted, letting them know how their med helps our kids. I mentioned how they could have a good study on their hands and a whole need marketing angle. No response....but it doesn't mean they didn't read it.

I've tried contacting them a few times. I never get a reply.

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Agree!

Happy Thanksgiving, everyone! I hope everyone gets to enjoy a calm day.

Thank you for updating!Glad to hear things are going well.

Now I connect the dots. Can you see the lightbulb light over my head?

I was just curious whether this doctor is making blanket statements or if it was in reference to a specific case. When the topic of Lyme comes up, I just want to make sure it is said that there are kids that have PANDAS w/o Lyme or even without coinfections. As said before, this is the case with my son and I don't want him and his suffering to be dismissed or forgotten. I don't tell anyone they don't have Lyme. I don't want anyone to tell me my son does not have PANDAS.

SFMom, this doctor you saw, what is his general opinion about PANDAS (not specific to your case)?

I have heard stuttering mentioned on here before. Also, I skimmed through a book that was co-authored by Swedo in the 90's and it said that slurred speech can also be a symptom. Progress in my son's speech disorder haulted in an exacerbation. So, I would say, yes, it's a symptom. Singulair has been cited on here as the one allergy med that kids have not reacted well to and to try to stay from. As for the others on the market, they vary on the child. I have had the most success with Natural D-Hist Jr. My non-PANDAS son had an awful sinus infection and it wasn't until we switched to the D-Hist did we see a lot of improvement. Right now, I would really concentrate on clearing up any sinus infection that may be there. Sometimes, you will need two antibiotics at once when they are bad.

Oh, no! I want to start by saying that I'm happy your sister was honest with you about the strep in the first place. I often wonder if extended family will just omit telling us knowing we would abandon plans. You're at the house already. I'm all about erring on the side of caution, but like you said you can't just up and leave right now. Is your child on antibiotics? I would probably stay there, but try to have them keep their distance. Remind him of washing hands, not sharing food or anything. If your sister doesn't hear back from the ped in a reasonable amount of time today, call back this afternoon. If you call tomorrow you may not get a response. If she gets a hold of tem, ask them to switch her son's antibiotics. I'm assuming he's on amoxcillin? Tell her to ask for a switch to Augmentin or Zithromax since it seems to be a stuuborn infection.

My 4 year old doesn't even have the gag reflex anymore when she gets a strep test.

Ummm....I did that one. But, I did it to actually see what I would score (which was in the higher than average range) and I did see that test wasn't the fluff quizzes like others. The one that bothered me the most was "How OCD are You" or "What Mental Illness are You".

When you're at kroger and you overhear a mom (standing there with her son) telling another mom he was just diagnosed with strep and had to stay home from school. You dart as far away as you can and proceed to complian to your husband how it's irresponsible of her to take him to a grocery store. How when other moms tell you their kids' problems, you have a list of supplements and ideas of what to do for them to get better. Now, these moms don't know your child has PANDAS. So, you then being to wonder what they think of you and how you know all of this. When you get on the automatic defense when friends on facebook post quizes and links about mental illness and make light of it.

Motrin and Ibuprofen are the same thing. Motrin is just a brand name. I give my son generic. When choosing one, pick one without dye in it too. fyi...my son did not respond to Ibuprofen when in the midst of an exacerbation, but he did get relief when it was a non-strep trigger. Failure to see improvement with Ibuprofen does not rule out PANDAS in any way. But, if you do see an improvement, it an indicator that possible inflammation is occuring.

Wow! Great to hear that it improved your quality of life to the point of being able to get off anti-depressants!

Makes sense to me. If things like seasonal allergies can take such a toll on some people with PANDAS, I would think any allergy/sensitivity can do the same.