thereishope

I read the food list that kimballot listed and that made me remember when my son was in his exacerbation with out of control rages, when he started to get better he went on a big carb diet. He ate so many bagels and bread at that time!Then I read that..."Complex carbohydrates increase the release of serotonin, which has an entirely different purpose. Serotonin alleviates depression, calms your nerves and induces sleep. A snack of complex carbohydrates in the evening will enable you to get a more restful sleep." ...So his body knew what he needed.

I hate the innocence IT stole from my child. I hate how it changed me from a forgiving person to one that now has deep resentment and hold grudges. I hate having all this info in my head and when friends speak, I have to hold back what I really want to say to avoid sounding like a know it all or a live PANDAS forum I hate knowing people really don't care. Yet they think they have shown support. I hate that I can still cry at the drop of a hat when I talk about my son and what he went through. I used to never be a crier but those memories are so fresh. I hate that I feel I have been through so much "stuff" (not the word I would have used but it's a clean forum) yet God decided that I needed more "stuff" to happen and at the expense of my CHILD. I wonder what have I done to deserve so much struggle and sadness. I've wondered if I've done something horrible in past life and this is part of my punishment. I hate the reasoning of some doctors.

About your question about switching to a prophylactic at this time.....In an ideal world (but doctors don't follow what moms say), the child would have improved on full dose before switching to a prophylactic. Even if one says that the infection could have cleared and you're now waiting for the antibodies to lower, I would want to see some improvement on that full dose without a spiral down when switching or at the tail end of that two weeks. If you think it may be a sinus infection, have you seen an ENT? Sinus infections can be very hard to get rid of. It could take rounds of antibiotics, more than one antibioics at the same time (my one son had Zith and Augmentin at the same time), some get a steroid as well to take down the excessive swelling in the sinuses so it can start to drain or a nasal spray to help take down the swelling. If you haven't seen an ENT, I'd make that appt too. Have you checked family for strep?

I'm sorry! The hardest thing to do sometimes is to realize it might get better, but that's the only things that can help you keep your sanity. PANDAS can just hault life and ruin it for the time being. Believe it WILL get better and time will heal the family. The kids will not forvever blame their sibling for changing things or for the hard times. Keep strong. Keep fighting.

Emerson, it's similar from the parent point of view. Friends who occassionally ask how things are going, but don't really want to know. Having people who complain about their problems like where they should go on vacation or having too many social activities lined up that they are just so busy. Then you have others who treat your child/talk about them like they are an object with "the PANDAS". I don't really have advice for you except to say the corny ole phrase that "it will make you stronger". But, you know what, it's the truth. It does. But then, I sit there on some days and ask God why I have to be so darn strong! It'll pan out. Believe it. It may take a while and there will be ups and downs, but it will get better. Then you will look back and ask yourself how the heck did you ever do it and realize what an amazing, strong individual you have become.

Oops! I'm sorry. I mixed things up.

Thanks!I've heard good things about colloidal silver before, then when I read your post it really sparked my interest, especially when you said it didn't taste bad:) I saw they have colloidal silver sprays too. Have you tried that on your dd's rash?

Both OLE (Olive Leaf Extract) and Colloidal Silver have been mentioned on here. Which one do you think would be the better to give? I read that Colloidal Silver boosts the immune system....is it okay to boost a PANDAS child's immune system? Also, those that are giving these, can you please post what brand you are using, where you find dosages, and how you give it to your child (swallow capsule, liquid, etc). I am looking at this from a preventative stand point. Thank you!

Welcome. If your doctor is willing to listen, ask him to switch the penicillin. Did you see improvement in behaviors/tics while on the Keflex? Ask if you can swicth to a higher dose Augmentin or Zithromax. Those are the 2 antibiotics that seem to help kids on here. Some have sucess with Keflex as well, but switching back to that depends if you saw any improvement the first time.

Welcome. I agree with everyone that YES other things can worsen PANDAS symptoms even when an infection is not present. This would especially be the case if your child is still not fully recovered. Hopefully, once remission is achieved, things like excitement, anxiety, etc won't be such an issue. What I'm saying that it may not always be that way.

Welcome. There are some on here with younger children. I'm sure they will chime in once they check the forum:) Otherwise, you may be suprised to learn that many parents realize their children had their first exacerbation at a very young age that went undetected and undiagnosed. It's just harder to realize what one is seeing is PANDAS symptoms at a very young age if it isn't extreme or their children had their first onset occur at a time when PANDAS was non-existent or rarely known (more rare than now). My son had his first exacerbation surface on his 5th birthday. I, too, would like to know what antibiotic your son was given for active strep infections. If it was penicillin or amoxicillin each time, it may not have cleared the strep. How close together were the 3 infections?

You're right, there aren't many DAN's (if any) in our neck of the woods. I once called the only one listed in my area and it wasn't the best conversation. For those that are Dr K's patients, he is the one who provides the antibiotics scripts post IVIG, correct? If a steroid burst is needed post IVIG, does he write the script or do you need to have a local doctor write the recommended script? My point is how much does your local doc need to do for you post IVIG? When I call peds offices, I ask them about their PANDAS knowledge, but ultimately you don't learn everything about them until you meet them in person or you actually need something. However...for initial appts, you do not need to transfer all records so you can meet them first before going through all of that.

My son had neither.

My son had amoxicillin. The only reason he got the antibiotics at all is because I lied and said he had a sore throat. He had no symptoms of strep. The rapid came back negative, but the culture came back positive.

I also suggest reading Stephanie's posts about OLE. Her child had impetigo for quite some time and it wasn't until she switched to OLE that it finally started to get in check.

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Have you discussed with an ENT having her tonsils taken out to try to prevent strep? That helps with some carriers.

How long do they decrease for? Does he run a fever post vaccination? Do you give pain meds after vaccination? Asking since there's a chance either of those things play a role.

I agree. If the child can go off antibiotics for a long enough time (not sure what the timeline would be) and no PANDAS symptoms resurface, I would think that indicates infection is gone and antibodies lowered.

Yes, we were lucky to catch it quickly and then identify each subsequent exacerbation pretty much on day of onset. My son was the opposite of yours in that he wasn't aware what was going on. Oddly, it was only a little over a year ago and he has no memory at all of those feelings, mannerisms, etc. every so oftn he'll recall me saying something to him during that time, but not much. Just a little over a week ago I sat and talked to him about it and explained how he gets if he contracts strep. I thought this was important so he understands he needs to come to me if he feel different or has odd thoughts. He needs to know I may be able to help. He really had no memory.He remembers the good things that happened during that time like trick or treating but doesn't remember how "lost" he was while we "guided" him trick or treating or what we had to go through in decisions about costumes or just getting him out the door.I guess you can say he has a selective memory of that time.

For my son, some of qualities that they considered "autistic like" (at least enough to warrant a screening according to them) started to really fade and go away maybe around 3 months into recovery. Makes one wonder if it's an age thing correlated with their onset. Again, my son was 5 also.

I'm suprised you never had these things done before with a neurologist, esp catch/throwing and the nose/finger thing. Did they do anything like tell you three words at the beginning of the appointment and at the very end ask you to repeat those three words back? Another one is asking what year it is and who the president is. Well, at least this one is doing some basics. I hope you continue to be happy with her!

Well, my son had to be screened for autism or Aspergers because if all the issues that were present. By the time the appt came up, he had recovered more and many of the issues had self-resolved and it was no longer a concern on the part of the doctors. I always knew the issues were due to PANDAS since they developed during an exacerbation. He was age 5.

I think we all agree that it is all PITAND, don't we