Need Advice.....

[EAMom]

Thanks everyone for your quick responses. I had pretty much decided against the vaccinations anyway. My sister inlaw's office is Louisville, KY. I am not sure how familiar she is with Pandas.

 

Hey, if she's willing to be open-minded and learn, and rx antibiotics, that would be a huge step for so many parents/kids! (The podcasts are a great/easy place to start.)

 

There's also a good lecture by Dr. Sue Swedo (from NIMH)MIND Institute conference 11/06 http://www.ucdmc.ucdavis.edu/mindinstitute/events/recorded_events.html . You can get it from Itunes...you have to scroll down from the list of speakers and look for Sue Swedo. I think she mentions urinary frequency in that lecture.

[SarahJane]

Hey...I'm in Lexington! Help your sis-in-law learn & then she can open a satellite office over here. KY could use some good PANDAS docs. Well, KY could use a lot of things...but I'll take more PANDAS docs at a minimum.

 

Go CATS!

[Haileymadison]

Hey...I'm in Lexington! Help your sis-in-law learn & then she can open a satellite office over here. KY could use some good PANDAS docs. Well, KY could use a lot of things...but I'll take more PANDAS docs at a minimum.

 

Go CATS!

 

My sister inlaw actually graduated from UK and has season tickets to all the basketball games. Her daughter (my niece) is actually is premed at UK. I will definitely help her learn. Is there any Pandas docs anywhere in KY?

[Haileymadison]

Thanks everyone for your quick responses. I had pretty much decided against the vaccinations anyway. My sister inlaw's office is Louisville, KY. I am not sure how familiar she is with Pandas. She did mention that she sees a lot of boys with urinary symptoms with strep, but never called it Pandas. I am going to ask a lot more questions tomorrow. I am just wondering why she is seeing so many children with urinary symptoms with strep. I have researched this, and can not find 1 website that list urinary frequency as a strep symptoms (except Pandas). Evidently Pandas is not as rare as these websites claim. I am not sure that my sister inlaw has even made the Pandas connection.

My own thoughts on this is that post strep behavioral/physical symptoms are not that uncommon, but usually mild enough that its just attributed to not feeling well. Of course a sick child wants mommy more, of course a sick child is more irritable...etc. I think its the intensity and chronicity (did I just make a new word?) of symptoms that sets PANDAS apart. But, also, I think your SIL is really on the ball to have made that observation.

 

Yes, my SIL is really on the ball. I actually was going in to get my daughters vaccinations on Oct, 7th, when I told her that we have been having a lot of anxiety issues with Hailey and we were really worried about her. I told her that I had done some research and thought my daughter was showing signs of Pandas. She immediately did a strep culture and sure enough it was positive. She refused to give the vaccinations and put her on 10 days of Suprax and told me to come back in 10 days for a repeat culture. I talked to her on day 8 and told her that she was 80 percent better already. She then put her on Augmentin for another 10 days. I go back tomorrow for a repeat culture. My daughter is pretty much back to normal. I would say 95 percent better. I had parent teacher conference today, and her teacher told me she is showing no signs of anxiety and appears perfectly happy and is one of the brighter children in her class. Should I request more Augmentin or would it be better to push for some Zithromax?

 

One more question.... When you all talk about your children being in remission, what exactly does that mean? Does it mean that they are no longer having symptoms?

Edited October 28, 2010 by Haileymadison

[SarahJane]

There are no KY PANDAS docs on the lists. There are some who say they treat PANDAS patients, but I don't know that they made the dx since they said ds(6) didn't have it despite all signs pointing to yes. (And I'm highly suspect we had early onset.) If your SIL is willing to learn & get herself on a list as a PANDAS dr, that will help KY & IN. Potentially even southern OH and sadly northwestern TN. And to make it even worse...maybe even WV since it's 4 hours from Huntington (where I'm from originally) or 5 hours from Charleston. And if she knows anybody in Lexington and can talk them into being a source, that would be even better. I finally found someone who was very nice & even did some research before our 1st appt even tho' everything didn't go exactly as I planned since ds(6) threw a fit at 1st appt. But, he believes in it, which is great. And I'm coming to him with the dx vs. asking him to make it.

 

And that question about remission...there's no cure. So another infection/exposure may or may not cause an exacerbation. Depends on if your treatment is working (abx or IVIG or with some also SSRIs/mood meds). Hopefully, puberty will bring an end to it but not always. From what I can tell too, you might be in remission but still not be back to 100%, meaning there's no infection/exposure but all tics/OCD/behaviors didn't abate but it's not quite an exacerbation. OR your child may have learned bad habits during the illness that may need to be addressed with therapy.

 

EDIT: There is a pediatric neurologist on one list. Forgot about that. Need to give him props! w00t But other than that...nothing else on the lists anywhere & KY is a pretty big state with lots of tri-state areas too.

Edited October 28, 2010 by SarahJane

[Haileymadison]

Well, It has been a few weeks since my last update. I can honestly say that I was a little embarrassed to post. We finished our antibiotics on the morning of October 28th. She was at 95%. I walked in the office 100 percent certain that I was going to refuse her booster vaccinations, but after a lengthy debate with her pediatrician (My sister inlaw), I caved and we walked out with an MMR, Polio, and chicken pox booster, and no more antibiotics. I felt so defeated, I cried all the way home.

 

I have been walking on pins and needles for over 3 weeks with no antibiotics, 3 new immunizations, 5 friends with strep, just waiting for a bomb to explode. I am very happy to report, that so far, no new symptoms. As a matter of fact, her remaining symptoms resolved as well. She is doing great.

 

I realize her symptoms were more on the mild side of the Pandas spectrum, but I don't really know what I should be doing at this point. I hate to just sit around and wait for another strep infection and hope for the best. I feel like I need to be doing something to protect her. My Sil does not feel she needs prophylactic antibiotics, so what can I do?

[thereishope]

I don't have time read all previous posts, but if you feel intimidated at the appts because of it being your SIL, have you considered swicthing doctors? Yes, she'd be insulted a bit, but she'd eventually get over it.

 

Since the immunizations are done, don't beat yourself over it. Move on. As for proph antibiotics, there's a few ways you can reopen the subject with her.

 

1.Remind her the worst your child was.

 

2.Explain to her with each exacerbation, your child can worsen. Symptoms change, severity changes, length of recovery changes. I will message you a summary of my son's symptoms with each exacerbation if you want to present it with her as an example of how it can worsen and morph.

 

3.Make a compromise for now. Antibiotics during the school year when your child is most exposed. At summer break, you can reapproach the topic.

 

4.Ask her if she prescribes proph for Rheumatic Fever. Compare PANDAS to RF of the brain.

 

5.Ask if she will move in with you and help take care of your family and child if your child gets sick again:)

 

6.Ask for proph until you see more recovery so you can give her brain a chance to heal. Use the words "Her brain needs a chance to heal".

 

7.If you want to stay local and not see a specialist, go to an ENT, immunologist, etc. They can prescibe antibiotic as well.

 

8. Tell her you will give your child PROBIOTICS as well to help protect the gut. Sound educated and she will be more open.

 

Good luck!

Edited November 20, 2010 by Vickie

[Johnsmom]

Please don't feel bad. A lot of us have been defeated by doctors. This is so confusing and we are expected to know what is right and what is wrong.

I read your story. You really did get on top of it right away but now you have to watch closely. If there are ANY signs you need full strength abx.

 

I wish I was aware of PANDAS years ago.

 

Best of luck and I will be praying for you.

 

Johnsmom

 

 

Well, It has been a few weeks since my last update. I can honestly say that I was a little embarrassed to post. We finished our antibiotics on the morning of October 28th. She was at 95%. I walked in the office 100 percent certain that I was going to refuse her booster vaccinations, but after a lengthy debate with her pediatrician (My sister inlaw), I caved and we walked out with an MMR, Polio, and chicken pox booster, and no more antibiotics. I felt so defeated, I cried all the way home.

 

I have been walking on pins and needles for over 3 weeks with no antibiotics, 3 new immunizations, 5 friends with strep, just waiting for a bomb to explode. I am very happy to report, that so far, no new symptoms. As a matter of fact, her remaining symptoms resolved as well. She is doing great.

 

I realize her symptoms were more on the mild side of the Pandas spectrum, but I don't really know what I should be doing at this point. I hate to just sit around and wait for another strep infection and hope for the best. I feel like I need to be doing something to protect her. My Sil does not feel she needs prophylactic antibiotics, so what can I do?

[peglem]

Well, It has been a few weeks since my last update. I can honestly say that I was a little embarrassed to post. We finished our antibiotics on the morning of October 28th. She was at 95%. I walked in the office 100 percent certain that I was going to refuse her booster vaccinations, but after a lengthy debate with her pediatrician (My sister inlaw), I caved and we walked out with an MMR, Polio, and chicken pox booster, and no more antibiotics. I felt so defeated, I cried all the way home.

 

I have been walking on pins and needles for over 3 weeks with no antibiotics, 3 new immunizations, 5 friends with strep, just waiting for a bomb to explode. I am very happy to report, that so far, no new symptoms. As a matter of fact, her remaining symptoms resolved as well. She is doing great.

 

I realize her symptoms were more on the mild side of the Pandas spectrum, but I don't really know what I should be doing at this point. I hate to just sit around and wait for another strep infection and hope for the best. I feel like I need to be doing something to protect her. My Sil does not feel she needs prophylactic antibiotics, so what can I do?

Wow! So glad your daughter is doing so well! I think if a child can be well w/o the abx, then yea! Of course you'll watch closely, and get her in at the 1st sign of trouble, but wouldn't it be wonderful if you nipped it in the bud quickly enough that she won't need any further treatment beyond episodic abx?

[thereishope]

If you don't mind me saying this. My son does not need antibiotics in between exacerbations to maintain remission. Exacerbation #1...realized strep was the culprit 2 weeks post onset. Exacerbation #2 and #3 was caught in ONE DAY of onset. Those exacerbations were bad. #2 involved wanting self harm, severe OCD, eating problems, and more. Exacerbation #3 involved a longer recovery and residual OCD. At that time he was not on proph antibiotics because I could not find any doctor to give them in my city....trust me I tried and I fought for it. In my opinion, if your child can take antibiotics without yeast issues and such, then I would suggest trying all you can to reduce your chance at getting strep with a proph antibiotic. Relying on catching it fast, may help but does not necessarily shorten recovery or make the symptoms less severe. If you absolutely cannot get proph antibiotics, then so be it, but really try to get them and fight for them. Learn from my experience. Like I said, even if it's just during the school year or even just pen vk...try to reduce your chances. Once your child has strep, you can't go back and change things.

[Haileymadison]

OK, I may of spoke to soon. My 19 year old son came home from college for Thanksgiving break. Sure enough, she is acting a little off today, (Drama Queen)!!! She also mentioned that she needed to go to the potty, but she just went. I may just be being paranoid. I don't know. I just checked my 19 year olds throat and it looks pretty yucky. It is really red, with just one piece of cottage cheese. He says that he does not feel bad.

 

I called my Sil, and she refuses to give me any antibiotics without a culture. I read somewhere that you can buy home strep test. Does anyone know where I can buy them? I checked Rite Aid and they don't sell them.

 

Vickie, I just read you post, and am starting to freak out a little. I seriously don't think my SIL will give me prophylactic antibiotics. She actually seems to be getting a little irritated at my paranoia. I don't think she really understands the whole "Pandas" and definitely don't want me trying to tell her how to be a doctor because of what I read on the internet. I can see where that might piss her off a little, but this is my kid and I can't help but freak out a bit.

 

Where am I going to get antibiotics without changing doctors? It is a touchy situation when your husbands sister is your pediatrician. I love her to death and do NOT want to offend her in anyway. She has been my kids pediatrician for 20 years and have always trusted her.

Edited November 20, 2010 by Haileymadison

[peglem]

If you don't mind me saying this. My son does not need antibiotics in between exacerbations to maintain remission. Exacerbation #1...realized strep was the culprit 2 weeks post onset. Exacerbation #2 and #3 was caught in ONE DAY of onset. Those exacerbations were bad. #2 involved wanting self harm, severe OCD, eating problems, and more. Exacerbation #3 involved a longer recovery and residual OCD. At that time he was not on proph antibiotics because I could not find any doctor to give them in my city....trust me I tried and I fought for it. In my opinion, if your child can take antibiotics without yeast issues and such, then I would suggest trying all you can to reduce your chance at getting strep with a proph antibiotic. Relying on catching it fast, may help but does not necessarily shorten recovery or make the symptoms less severe. If you absolutely cannot get proph antibiotics, then so be it, but really try to get them and fight for them. Learn from my experience. Like I said, even if it's just during the school year or even just pen vk...try to reduce your chances. Once your child has strep, you can't go back and change things.

Vickie has a very good point based on her experience. I guess I'm just fantasizing how nice it would be to not be on this crazy treatment treadmill.

[SarahJane]

Hey neighbor! I just read thru this and have make it quick becuz we are on our way home from Chicago after IVIG. (Has gone well, btw...will post more on that later. ).

 

1. Your kids win over your SIL. I have no problem cutting people out (family or friends) when it comes to PANDAS. She's the 1 who told you about PANDAS, so I think her reluctance is weird. Consider a new doc but try not to burn the bridge in the meantime.

 

2. Go to an urgent treatment for abx for both kids. They seem to treat a bit more aggressively to keep you from coming back.

 

Good luck! I'll write more later.

 

P.S. The MMR is 3 vaccines, so you got 5 vaccines. Not trying to make you feel worse...just being accurate. At least ya didn't do a flu shot too.

[thereishope]

I can feel how torn you must be with your ped being your SIL. My BIL is a doctor and I have heard the whole C Diff problem a few times from him and the number of kids who had to do surgery on and remove something (can't remember what) because of overuse of antibiotics. But, even he understood when I made the RF comparison. Now, I just don't bring up the subject of antibiotics or vaccines (another hot topic between us). But, unlike you, he doesn't live immediately by me and he is not my children's doctor.

 

As for your son, I say get him tested. If you need to, go to urgent care and tell your SIL (if she finds out) that you didn't want to bother her being that it was the week of Thanksgiving. You need to get the ENTIRE family checked for strep. This is one way to help your daughter strep free.

 

Now, does your SIL agree your child is PANDAS? This can change everything is she doesn't. Everyone's suggestions will also vary depedning on if she agrees it is PANDAS.

Edited November 20, 2010 by Vickie

[GraceUnderPressure]

While our family dr is not a family member, our solution - modified where needed to fit your situation - might be helpful to you.

 

We did not tell our family dr that we were going elsewhere or consulting another dr - we just kept things more or less business as usual, & whenever something came up that made it necessary for us to mention the PANDAS dr, we simply talked about a specialist that we were seeing for our son's immune issues. (My ds18 has Tourettes with OCD triggers, but we simply vaguely refer to his impaired immune system)

 

[We have used the specialist/impaired immune system as our excuse for not immunizing, but we homeschool, so fortunately, it's not a major issue for us.]

 

If you have to address the subject with her, you might even word it in such a way as to discretely make it sound as though you were concerned about continually imposing on her or presuming on the family relationship or something to make it sound like you were acting out of concern for your relationship with her rather than mentioning your dd's treatment. But the less information you volunteer, the better, IMO.