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feeling so helpless right now.........


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So my son has been off antibiotics for 7 days. It is all coming back and now we have what we didn't have before which is the choreiform movements. His lips are a mess again and I think this has to do wtih mouth breathing which by the way, his lips looked so good while on antibiotics. So what I am thinking is that the mouth breathing reflects strep swollen tonsils and adenoids. I feel like his mouth even smelled a little bit like strep this morning. I went in for repeat cultureon Monday on the 5th day off antiobitic and it came back negative. Toying with the thought of going back for throat culture today again. No one will give me the daily antibiotics. Only maintenance 1 time a week from DAN doctor.

 

I have to send him back to school tomorrow and I don't know how I will do it. He has already had several meltdowns over things I have said and I think carefully what I say and know how to bring him down from anxiety/ocd issue.

 

If I don't send him to school, he'll lose the aide that knows him so well.

 

I tried to call Deborah McCabe but can't get in there until May. And I have to leave 100 dollar deposit to hold the appt.

Latimer I have appt. August 15th. I am both of their cancellation lists.

 

I emailed Dr. K asking for him to let me know if he could help me. I just called the office. They are not in until 1030 or 3 pm, the answering service said.

 

I just feel so stuck and don't know which way to turn.

 

I know you all can't do anything but just needed a vent. maybe it would help me focus myself.

 

Kim

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Kim --

 

Sorry I don't have a whole lot of concrete advice to offer, but just wanted to offer some support. Hang in there . . . you are NOT alone, even though I know it feels that way!

 

I would try taking your DS back for a new culture, and do what you can to insure they're really swabbing correctly and deep enough back; it seems there's a tendency for false negatives when the swab isn't done correctly. If you can't get into your ped, you could maybe even try a doc-in-the-box.

 

Would your DAN! or ped give you a prescription for ASO and/or antiDnase-B blood tests and then potentially prescribe daily abx if/when those come back demonstrating high titers? I think you're on the right path, with appointments scheduled with McCabe and Latimer, but from the sounds of it, you need better medical support more immediately. Unfortunately, I know Dr. K. is frequently out of the country, and his appointments are usually booked a ways out, as well, but that is worth a try, too. Basically, I would dial for dollars until you get someone to help you sooner rather than later.

 

Have you taken a look at the list here on the forum for Doctors Who Have Helped Us? Perhaps there's someone else within driving distance that could/would see you more immediately, even.

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Nancy,

 

Thanks for writing.

 

Did those blooddraws on Sat. and this Thursday I have DAN appt. to review labs. Maybe I could convince him but he is pretty set in his ways.

 

I guess I go in for another culture with him today. They'll soon think I am wacko. The first pediatrician was no help at all. I wondered if her son was in a similar situation whether she would have been so cavalier.

 

Doc in the box is another option. Maybe they might actually be more informed about PANDAS.

 

Trying to wolf down some breakfast and will call to see if I can get in to get him reswabbed. I think it is time to invest in some of those over the counter rapid strep test kits.

 

Kim

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When I was in your shoes, I was able to find a sympathetic nurse practitioner at a CVS Minute Clinic who felt swollen glands and was interested in Pandas and I got a 10 day script. I think I did this twice while searching for a new pediatrician. It helps if you go in the evening when you can say your pedi is closed and forget to tell them about the negative throat swab last week (after all, for all you know, they didn't swab in the right place - swabs aren't exactly precise).

 

You might also post on the lyme forum and ask about natural alternatives for antibiotics. It's not my area of expertise but I know there are certain things that are antimicrobial and may help. Some of the lyme moms have gone this route and may have ideas for you.

 

I know you're not sure how you're going to make it until your first appt. but hold on. You can also focus on anti-inflammatories (motrin, resveratrol, curcumin, tumeric) and detox (charcoal, bentonite clay capsules, milk thistle, epsom salt baths, transdermal glutathione, alpha lipoic acid) to help the body get rid of the toxins associated with fighting chronic infection. These may not give you the same level of relief that abx gave you, but it's at least something.

 

Also use this time to document his symptoms and maybe take some videos or collect a handwriting sample. These can be very powerful when meeting with a doctor.

 

As for school, one idea is to send him but pick him up early. Sometimes when teachers see what you see, it helps.

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You might also post on the lyme forum and ask about natural alternatives for antibiotics. It's not my area of expertise but I know there are certain things that are antimicrobial and may help. Some of the lyme moms have gone this route and may have ideas for you.

 

 

Good idea! I know many folks swear by X-Clear, a nasal spray that contains both xylitol and, I think, grape seed oil? Also, we use olive leaf extract and while our track record isn't perfect (DS just came down with his first cold virus in over a year last week :( ), it kept us all healthy through the winter and primary "strep season."

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Hi ,

It is true that Dr. k. Is often out of the country, but in my experience he always emails back within 24 hours. We have emailed him several times and he always helps. I know you haven't seen him yet, so not sure if he will first want a phone consult, Skype, or appt in his office, but you are on the right track. I agree with trying to get abx in the meantime if possible.

Please let us know what happens. My thoughts are with you and your family!

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When you're begging your ped, or whomever, for antibiotics, do you have a copy of the new white paper from dr Swedo in hand to give them?? Also print off the newly updated NIMH page and bring that also. Did your child have sudden onset? If so, stress this. It could also be PANS, if strep neg. Most Drs are kust uninformed on the issue and especially on all the new stuff out of the NIMH. Go to pandasfoundation.org and click on providers, maybe someone listed is closer and beg for quick app, explain your situation, or maybe they could recommend a Dr to get in sooner to get treatment started.

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I have the white paper....just went and googled it and downloaded it.

 

I need something that says the 1 time a week antibiotic is not enough...that it needs to be administered for more than a 5 day z pack. Does that exist?

 

Long story but I can't get in to McCabe until May 15th. Then this afternoon they called back to say that I can see a Dr. Freeman. I said do they know PANDAS. The receptionist says that she will schedule a meet and greet call and I can go from there because the goal is antibiotics. At any rate, I am also finding the olive leaf extract and x lear spray. Thank you for all those suggestions.

 

So I look up the doctor and it turns out he is a SHE and would you believe this....I just sat in a weekend seminar with her not 10 days ago. I call that a Godwink or higher power wink, maybe.

 

And Kiera, my son has autism and I see now he was having PANDAS activations every winter but this winter, about Feb. all his OCD stuff coincided plus a bunch of sensory issues blew up. I knew something was different. Rapid tested just to rule out and he turned up positive. Now he has choreiform movements.

 

I'll keep you all posted. It is just like I tell my daughter....things that feel horrible right now will eventually not feel so horrible. It just may take a while to survive through. Thanks for all of your support, everyone. I am blessed to find this board.

 

Kim

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I have the white paper....just went and googled it and downloaded it.

 

I need something that says the 1 time a week antibiotic is not enough...that it needs to be administered for more than a 5 day z pack. Does that exist?

 

Long story but I can't get in to McCabe until May 15th. Then this afternoon they called back to say that I can see a Dr. Freeman. I said do they know PANDAS. The receptionist says that she will schedule a meet and greet call and I can go from there because the goal is antibiotics. At any rate, I am also finding the olive leaf extract and x lear spray. Thank you for all those suggestions.

 

So I look up the doctor and it turns out he is a SHE and would you believe this....I just sat in a weekend seminar with her not 10 days ago. I call that a Godwink or higher power wink, maybe.

 

And Kiera, my son has autism and I see now he was having PANDAS activations every winter but this winter, about Feb. all his OCD stuff coincided plus a bunch of sensory issues blew up. I knew something was different. Rapid tested just to rule out and he turned up positive. Now he has choreiform movements.

 

I'll keep you all posted. It is just like I tell my daughter....things that feel horrible right now will eventually not feel so horrible. It just may take a while to survive through. Thanks for all of your support, everyone. I am blessed to find this board.

 

Kim

 

 

 

Hey Kim, I just wanted to say that I highly recommend the Olive Leaf Extract. It has been our Saving Grace! We have been using it for 15 months as a prophylactic. Last week, my dd7 started complaining about her clothing, socks were feeling funny, tags bothering her again. She was starting to show signs of low level anxiety. I swabbed her throat and sure enough it was a faint positive. I decided to double her dose of OLE and within a day, symptoms were gone. I swabbed her again today and it was negative. I am going to continue with high dose Olive Leaf for another week or so and then swab her again.

 

I am not exactly sure why it works so well, but for whatever reason, it works great in our family.

 

I just ordered my 2nd box of Rapid Strep test and highly recommend those as well.

 

 

Good Luck,

Edited by Haileymadison
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Hey Kim, I just wanted to say that I highly recommend the Olive Leaf Extract. It has been our Saving Grace! We have been using it for 15 months as a prophylactic. Last week, my dd7 started complaining about her clothing, socks were feeling funny, tags bothering her again. She was starting to show signs of low level anxiety. I swabbed her throat and sure enough it was a faint positive. I decided to double her dose of OLE and within a day, symptoms were gone. I swabbed her again today and it was negative. I am going to continue with high dose Olive Leaf for another week or so and then swab her again.

 

I am not exactly sure why it works so well, but for whatever reason, it works great in our family.

 

I just ordered my 2nd box of Rapid Strep test and highly recommend those as well.

 

 

Good Luck,

 

What's "high dose" OLE? We give twice daily and credit it with keeping our whole family pretty healthy overall, but if "high dose" would help nail fresh germ or virus, by any chance, I'm up for trying it. Thanks in advance!

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Hey Kim, I just wanted to say that I highly recommend the Olive Leaf Extract. It has been our Saving Grace! We have been using it for 15 months as a prophylactic. Last week, my dd7 started complaining about her clothing, socks were feeling funny, tags bothering her again. She was starting to show signs of low level anxiety. I swabbed her throat and sure enough it was a faint positive. I decided to double her dose of OLE and within a day, symptoms were gone. I swabbed her again today and it was negative. I am going to continue with high dose Olive Leaf for another week or so and then swab her again.

 

I am not exactly sure why it works so well, but for whatever reason, it works great in our family.

 

I just ordered my 2nd box of Rapid Strep test and highly recommend those as well.

 

 

Good Luck,

 

What's "high dose" OLE? We give twice daily and credit it with keeping our whole family pretty healthy overall, but if "high dose" would help nail fresh germ or virus, by any chance, I'm up for trying it. Thanks in advance!

 

 

I give it twice daily for prophylaxis, but if my daughter starts to get a stuffy nose or something, I give 2 capsules 3 x a day and within 12 to 24 hours she is always good as new! Last week, when my daughter tested positive on the home strep test, I decided to try the high dose Olive Leaf instead of antibiotics and it seemed to pull her right out of it. Sensory and low level anxiety vanished, and she is now testing negative on the rapid.

 

I will continue with the high dosage and retest again in a week or so. I'll admit, I was really nervous about not placing her on a regular antibiotic, but EVERYTIME she is placed on antibiotics, she gets a horrible sinus infection 3 weeks later, only to be placed back on antibiotics, and within 3 weeks she is sick again.

 

I have had much better luck with the Olive Leaf Extract. It seems to strengthen her immune system, whereas regular antibiotics always seem to weaken it!

 

I am NOT recommending that everyone ditch their antibiotics for OLE, but for those who are fighting to get antibiotics, I swear OLE is the next best thing!

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Kim-

Where do you live? If you live near MD our old Ped knows about PANDAS and is willing to do a 10day trial. She will also order any blood test you ask. She is very willing to learn and help. She is at Clarksburg Pediatrics in Clarksburg, MD. Dr. Rahman is her name.

Hope this helps!

Jen

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okay, things change daily around here. It really is living day to day. Last night, at 6 pm, he starts taking his finger sticking down his throat. Wanted me to do something in his mouth. I didn't figure it out. DUH! His throat probably hurts. Also, his lips are a sight again which I think I am now connecting to him mouth breathing due to strep infected tonsils and adenoids. When on the zpack, his lips were almost perfect. he is now about 12 days off Z pack now if I calculate that right.

 

So then at 1145 pm, he wakes coughing, sounding like he needs nebulizer. I gave him one and then it looked like he was going to go right back to sleep. Unusual. So I marched right out to the kitchen and gave him 1 olive leaf capsule. He slept untnil 530. When he woke, he showed no signs of cough and seemed to eat fine. (also the illness from out the blue is similar to the time in preceding weeks he only had a runny nose for 2 days and then there was a 2 day period of a fever, no other symptoms that resolved also overnight) To me, it tells me the strep is there and the body is trying unsuccessful to fight it off.

 

So I think I am going to try the olive leaf and I also bought the xlear last night to use. It is worth a try. Then maybe we can wait to see McCabe in May and Latimer in August.

 

This morning he went back to school, still having adventitious movements, still holding his pants legs up so they don't touch his ankles (I sent shorts along too), still touching the backs of his ankles(OCD since strep throat). He also had several anxiety upsets over words so far this morning...One example is my daughter said his name (R, do you want to ride scooter. then he gets stuck on repeating his name. If she would have just handed him his scooter, then he would have had no anxiety at all).

 

I find that the 5htp does seem to take some edge of of his anxiety, reactivity, but not his adventitious movements, ankle touching, OCD stuff. Do you all find that?

 

 

One question: Is olive leaf extract same as Olive Leaf supplement. I bought Gaia OLive Leaf (I think it said 2 capsules 720 mg)

The only issue I may have is he is not tolerant of phenols and I bet Olive Leaf is highly phenolic. It builds up. Will be doing epsoms salts baths to help with moving the phenols.

 

Thanks again for all of your words of advice and support. I am sitting here praying he is having a good day. It almost pains me to send him off but if I don't, he will lose the assistant that knows him so very well and has taught him so much. If I didn't have her, I coudln't send him to school. I have to say lately, I have had several conversations that he may be a homeschool kid soon. It was hard enough for him to jump through all the hoops at school but add on PANDAS, sometimes you have to say enough is enough and let his life be slower pace and less stressful on him. Kim

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okay, things change daily around here. It really is living day to day. Last night, at 6 pm, he starts taking his finger sticking down his throat. Wanted me to do something in his mouth. I didn't figure it out. DUH! His throat probably hurts. Also, his lips are a sight again which I think I am now connecting to him mouth breathing due to strep infected tonsils and adenoids. When on the zpack, his lips were almost perfect. he is now about 12 days off Z pack now if I calculate that right.

 

So then at 1145 pm, he wakes coughing, sounding like he needs nebulizer. I gave him one and then it looked like he was going to go right back to sleep. Unusual. So I marched right out to the kitchen and gave him 1 olive leaf capsule. He slept untnil 530. When he woke, he showed no signs of cough and seemed to eat fine. (also the illness from out the blue is similar to the time in preceding weeks he only had a runny nose for 2 days and then there was a 2 day period of a fever, no other symptoms that resolved also overnight) To me, it tells me the strep is there and the body is trying unsuccessful to fight it off.

 

So I think I am going to try the olive leaf and I also bought the xlear last night to use. It is worth a try. Then maybe we can wait to see McCabe in May and Latimer in August.

 

This morning he went back to school, still having adventitious movements, still holding his pants legs up so they don't touch his ankles (I sent shorts along too), still touching the backs of his ankles(OCD since strep throat). He also had several anxiety upsets over words so far this morning...One example is my daughter said his name (R, do you want to ride scooter. then he gets stuck on repeating his name. If she would have just handed him his scooter, then he would have had no anxiety at all).

 

I find that the 5htp does seem to take some edge of of his anxiety, reactivity, but not his adventitious movements, ankle touching, OCD stuff. Do you all find that?

 

 

One question: Is olive leaf extract same as Olive Leaf supplement. I bought Gaia OLive Leaf (I think it said 2 capsules 720 mg)

The only issue I may have is he is not tolerant of phenols and I bet Olive Leaf is highly phenolic. It builds up. Will be doing epsoms salts baths to help with moving the phenols.

 

Thanks again for all of your words of advice and support. I am sitting here praying he is having a good day. It almost pains me to send him off but if I don't, he will lose the assistant that knows him so very well and has taught him so much. If I didn't have her, I coudln't send him to school. I have to say lately, I have had several conversations that he may be a homeschool kid soon. It was hard enough for him to jump through all the hoops at school but add on PANDAS, sometimes you have to say enough is enough and let his life be slower pace and less stressful on him. Kim

 

Sending PM

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