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Heard back from the girl running the IVIG study at Yale on Sunday. My son did not get in, because of how well he does on antibiotics. They thought we should continue with antibiotics treatment. Thanks a lot, his pediatrician doesn't agree.

 

After stopping the last round of antibiotics, his anxiety and tics started returning. He has night terrors every night. His doctor thinks he's manipulating me. My kid is smart, but explain to me how a 7 year old fakes night terrors? He doesn't even know he has them, much less know how to time then to an hour and 5 minutes after he falls asleep every night. FFS.

 

Last two days, he'd been complaining of a sore throat. We know where this is going. He's been irritable and ticking away. This morning his throat is burning. Take him to the fast care in a grocery store here, because a strep test at his doctor will run me $140, but at the fast care place its $50. It comes back positive. They prescribe an abx which I don't get filled. I called his doctor and let them know the results (the fast care is theirs, so they can look in the system and see the results). 3 hours later a nurse calls me back and says, oh come on guys you know where this is going - says my son is a strep carrier and we need to see infectious disease specialist. And to give him the 10 day abx prescribed at the fast care place.

 

I don't know what to do anymore. The nearest doctor on the PANDAS treatment list is 3 hours away and I haven't been able to confirm that he actually treats it or is "familiar" with it in the same way our useless pediatrician is.

 

Help.

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Right there with ya, lady! Saw the rheumy this week, as suggested by our pediatrician (but at least ours is a gem!), because my daughter has been having problems with muscle cramps and spasms in her hands and wrists, which improved with a 5 day prednisone burst, rx'd by the pediatrician. That indicated to the ped that it was probably an autoimmune thing, hence the rheumy suggestion. Well, the rheumy said she didn't see any joint swelling (me neither-I don't think its arthritis and said so), so she is ordering an MRI of her hands and wrists, and if it doesn't show arthritis then it "behavioral." Really?!! My child wakes in the middle of the night screaming in pain with her fingers all contorted and its behavioral (psychiatric)??? I mentioned that and she said maybe she needs to go back to the PANDAS specialist. We saw the PANDAS specialist 18 months ago- traveled 5000 miles round trip to do so. The conclusion of the PANDAS specialist?- "Why isn't she being treated for this immune deficiency? Just because someone is developmentally delayed doesn't mean you shouldn't treat their medical problems." I'm not going back, but it looks like the rheumy is dumping us (she seemed so promising in March), unless the MRI shows arthritis-it won't.

On the plus side- my daughter's hands seem to be doing better with TONS of magnesium and some potassium + NSAIDS. Or maybe that's not a plus, because it'd be nice to do the MRI when she is in a flare- maybe it would show SOMETHING!

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Right there with ya, lady! Saw the rheumy this week, as suggested by our pediatrician (but at least ours is a gem!), because my daughter has been having problems with muscle cramps and spasms in her hands and wrists, which improved with a 5 day prednisone burst, rx'd by the pediatrician. That indicated to the ped that it was probably an autoimmune thing, hence the rheumy suggestion. Well, the rheumy said she didn't see any joint swelling (me neither-I don't think its arthritis and said so), so she is ordering an MRI of her hands and wrists, and if it doesn't show arthritis then it "behavioral." Really?!! My child wakes in the middle of the night screaming in pain with her fingers all contorted and its behavioral (psychiatric)??? I mentioned that and she said maybe she needs to go back to the PANDAS specialist. We saw the PANDAS specialist 18 months ago- traveled 5000 miles round trip to do so. The conclusion of the PANDAS specialist?- "Why isn't she being treated for this immune deficiency? Just because someone is developmentally delayed doesn't mean you shouldn't treat their medical problems." I'm not going back, but it looks like the rheumy is dumping us (she seemed so promising in March), unless the MRI shows arthritis-it won't.

On the plus side- my daughter's hands seem to be doing better with TONS of magnesium and some potassium + NSAIDS. Or maybe that's not a plus, because it'd be nice to do the MRI when she is in a flare- maybe it would show SOMETHING!

 

 

Have you looked into TSO at all? The clinical trial is actually for autism I believe?

My daughter is only 16, the study is for adults: 18-40 yo.

How much does this therapy cost out of pocket?

I read your update and I'm glad its helped you feel so much better, but I can not imagine the absolute ###### of having my daughter's symptoms flare for 5 months straight...or actually, I can imagine it, having been there many times in the past.

Edited by peglem
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mamapanda, where do you live again?

 

Do you have other ped's offices you can look into? One day I finally had enough and looked for a new ped. I don't know why I didn't look sooner. Lots of phone calls, but eventually found one. You don't have to transfer records for the first appointment if not wanting vaccinations at the appt, so it's a way to screen the new doc before having all files transfered.

 

Also, you can go to an ENT. They may give you stronger antibiotics and longer antibiotics. If your insurance is bad, as it sounds like it may be similar to mine which costs me lots of out of pocket money, go to an ENT in a hospital in your county. You will be able to file for financial aid when you get the bill. Or you may be able to file for financial aid prior to the appt. Do you have copayments or coinsurance?

Edited by Vickie
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Heard back from the girl running the IVIG study at Yale on Sunday. My son did not get in, because of how well he does on antibiotics. They thought we should continue with antibiotics treatment. Thanks a lot, his pediatrician doesn't agree.

 

After stopping the last round of antibiotics, his anxiety and tics started returning. He has night terrors every night. His doctor thinks he's manipulating me. My kid is smart, but explain to me how a 7 year old fakes night terrors? He doesn't even know he has them, much less know how to time then to an hour and 5 minutes after he falls asleep every night. FFS.

 

Last two days, he'd been complaining of a sore throat. We know where this is going. He's been irritable and ticking away. This morning his throat is burning. Take him to the fast care in a grocery store here, because a strep test at his doctor will run me $140, but at the fast care place its $50. It comes back positive. They prescribe an abx which I don't get filled. I called his doctor and let them know the results (the fast care is theirs, so they can look in the system and see the results). 3 hours later a nurse calls me back and says, oh come on guys you know where this is going - says my son is a strep carrier and we need to see infectious disease specialist. And to give him the 10 day abx prescribed at the fast care place.

 

I don't know what to do anymore. The nearest doctor on the PANDAS treatment list is 3 hours away and I haven't been able to confirm that he actually treats it or is "familiar" with it in the same way our useless pediatrician is.

 

Help.

 

I agree with Vickie to try ENT for longer prescriptions... but in the end I think you need a PANDAS specialist.

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3 hours isn't so bad. I drive twice that but it is worth it! I would call the office of the PANDAS dr. and ask specific questions about how they treat and how many kids they've treated and what their costs are, etc. and how often they typically see a patient and how soon they would move to more aggressive treatment if antibiotics fail. I would also call around for a new pediatrician or family doctor. (something I unfortunately have to do soon) Where do you live? Maybe someone here can give you a recommendation. You've got ten days to get someone lined up. In the meantime, I personally, would search the internet for antibiotics you can buy from another country without a prescription. But that's just me. Thank goodness I haven't had to do that.

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mamapanda, where do you live again?

 

Do you have other ped's offices you can look into? One day I finally had enough and looked for a new ped. I don't know why I didn't look sooner. Lots of phone calls, but eventually found one. You don't have to transfer records for the first appointment if not wanting vaccinations at the appt, so it's a way to screen the new doc before having all files transfered.

 

Also, you can go to an ENT. They may give you stronger antibiotics and longer antibiotics. If your insurance is bad, as it sounds like it may be similar to mine which costs me lots of out of pocket money, go to an ENT in a hospital in your county. You will be able to file for financial aid when you get the bill. Or you may be able to file for financial aid prior to the appt. Do you have copayments or coinsurance?

Kim, I don't know if the Ped ENT in town would even see us, as we included him in our bankruptcy. My son spent 10 days in the hospital to the tune of somewhere between 60-80k when all was said and done. After having a job cut and a house that wouldn't sell, we had to give up. He took my sons tonsils out, though. Didn't care for him much, my son didn't even have swollen tonsils, he just kept getting sick. The guy said it couldn't hurt to take them out. Now I'm wondering because all this strep has started since he had them out.

 

Heard back from the girl running the IVIG study at Yale on Sunday. My son did not get in, because of how well he does on antibiotics. They thought we should continue with antibiotics treatment. Thanks a lot, his pediatrician doesn't agree.

 

After stopping the last round of antibiotics, his anxiety and tics started returning. He has night terrors every night. His doctor thinks he's manipulating me. My kid is smart, but explain to me how a 7 year old fakes night terrors? He doesn't even know he has them, much less know how to time then to an hour and 5 minutes after he falls asleep every night. FFS.

 

Last two days, he'd been complaining of a sore throat. We know where this is going. He's been irritable and ticking away. This morning his throat is burning. Take him to the fast care in a grocery store here, because a strep test at his doctor will run me $140, but at the fast care place its $50. It comes back positive. They prescribe an abx which I don't get filled. I called his doctor and let them know the results (the fast care is theirs, so they can look in the system and see the results). 3 hours later a nurse calls me back and says, oh come on guys you know where this is going - says my son is a strep carrier and we need to see infectious disease specialist. And to give him the 10 day abx prescribed at the fast care place.

 

I don't know what to do anymore. The nearest doctor on the PANDAS treatment list is 3 hours away and I haven't been able to confirm that he actually treats it or is "familiar" with it in the same way our useless pediatrician is.

 

Help.

 

I agree with Vickie to try ENT for longer prescriptions... but in the end I think you need a PANDAS specialist.

 

I replied to your PM. Thank you.

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Kim, I don't know if the Ped ENT in town would even see us, as we included him in our bankruptcy. My son spent 10 days in the hospital to the tune of somewhere between 60-80k when all was said and done. After having a job cut and a house that wouldn't sell, we had to give up. He took my sons tonsils out, though. Didn't care for him much, my son didn't even have swollen tonsils, he just kept getting sick. The guy said it couldn't hurt to take them out. Now I'm wondering because all this strep has started since he had them out.

 

I replied to your PM. Thank you.

 

Mama - did the doctor put your son on antibiotics before the surgery? I am just curious as some docs are now doing heavy antibiotics before surgery and / or IV antibiotics during surgery for some PANDAS kids to "sterilize" the tonsils and reduce the risk of disrupting the strep.

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Kim, I don't know if the Ped ENT in town would even see us, as we included him in our bankruptcy. My son spent 10 days in the hospital to the tune of somewhere between 60-80k when all was said and done. After having a job cut and a house that wouldn't sell, we had to give up. He took my sons tonsils out, though. Didn't care for him much, my son didn't even have swollen tonsils, he just kept getting sick. The guy said it couldn't hurt to take them out. Now I'm wondering because all this strep has started since he had them out.

 

I replied to your PM. Thank you.

 

Mama - did the doctor put your son on antibiotics before the surgery? I am just curious as some docs are now doing heavy antibiotics before surgery and / or IV antibiotics during surgery for some PANDAS kids to "sterilize" the tonsils and reduce the risk of disrupting the strep.

 

Kim, he didn't. He barely spoke to us. I wish I hadn't of gotten his tonsils out, I had no idea how it would help his reoccuring infections (pre-strep).

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Kim, he didn't. He barely spoke to us. I wish I hadn't of gotten his tonsils out, I had no idea how it would help his reoccuring infections (pre-strep).

 

Ok- well that is good information for the next doctor and also helps to justify antibiotics. I am not sure what the requirements are in your area, but I know my ENT automatically sent my kids tonsils in for testing. See if you can get a copy of the pathology report on your son's tonsils. See if there was strep isolated. It could help to justify a longer course of antibiotics for you. Some kids have had trouble after tonsillectomy - especially if there were no antibiotics beforehand.

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If you can swing it, is there another ENT in your area, even if it is one that isn't soley pediatric? Have him/her look at your child, make sure everything was taken out that was suppose to be and the surgery was performed correctly as it soudns like this other guy isn't all that great. They may be able to help you. Some ENT's see adults and children. Just because you cannot go to the only ped ENT, doesn't mean all is lost.

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Hi MamaPanda--

Where do you live??? Maybe someone can help you with a doctor suggestion so you can actually see someone who knows about and is able to treat Pandas.

 

Please consider just driving asap to see someone that can help you.

 

Three to 6 hours away to drive to see a Ps specialist is nothing! (I have made such trips numerous times--)

 

You need to find someone who knows about Pandas to see what a knowledgeable Ps doctor will say re: what could help your son next--

 

If you end up going to someone out of town, ask them (upon leaving that appt.) to develop a very specific flow-chart of what to do if this happens..and then this happens....and if this happens next...so you have a plan in the child's chart at the office and the nurse for the office can then refer to it if you need to call in information, request a refill prescription, etc.

 

Did you say that you could not get into the IVIG study because he had a good reaction to abx? I would be surprised if this is standard protocol for not including subjects -- especially if he has not been on abx for some time! If I were you I would call/email Dr. S. at NIH to clarify.

 

How about calling Dr. L. (at Yale) and asking who he suggests you should go to then for treatment--to at least get antibiotics to "try" for a month!

 

A long drive for correct treatment is worth the hassle in the long run, believe me!

Edited by T.Mom
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Yes, it sounds crazy, doesn't it? He does wonderfully on antibiotics. But his ped won't prescribe them anymore.. and when she did the longest dose she did was 14 days.

 

 

So he responds well, which I assume means his neuropsychiatric symptoms abate with antibiotics, correct? Despite this, the doctor you are seeing won't prescribe longer treatment dose--to at least try for a month? (Find another doctor.)

 

I am really sorry you are going through this--really. Keep pushing, until you find someone to treat him. (--I encourage you to call NIH to get further clarification.)

Edited by T.Mom
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