dcmom

My dd also had stomach pain at onset, but it turned out to be OCD/anxiety/ pandas based, and went away with abx/ steroid treatment. Just FYI.

Cobbie- this was over 4 yrs ago. Due to Dr issues at the time, we couldn't get any abx or steroids for more than a month- not a good time. BTW at time of T&A she was 100%. When we finally got steroids, they made a huge difference. We ultimately had PEX, due to not being able to calm immune system . I think if we had given adequate dosing of abx and steroids quickly, our results would have been better. She has had her ups and downs since, but has been able to live a completely normal life, with some anxiety and occasional manageable OCD. Good luck- he will get better. We were never sorry we got rid of the tonsils

I would say get on both abc and steroids immediately. My dd had a flare up triggered by T&A.

I think you need to be somewhat honest, if he is to be able to help you. I assume that you are seeing him because despite treatment, your child is not getting better? Maybe it is time to put it all on the table and re evaluate. Otherwise, I don't understand why you are going?

Agree with pow pow- Immune treatments are what worked for my daughters as well- I have no doubt some rogue infection (strep for us) started this- but I do not believe- nor have we found any real evidence, that chronic infection is an issue. We have used PEX, oral steroids and I've steroids - they are what have worked for us!

Also- what age/ weight is your dd- your dosage was low- even when my dd's were 6 to seven, we started at 40mg.

Hi- and sorry, not a great way to start the year. One year when we lived in DC, everyone in my daughter's class had lice, except for her! The lice continued for months and months and months. This is what we did: lice like clean hair. We would wash hair once or twice a week max. I would put leave in conditioner in after washing (they do not like substances on the hair). My dd wore her hair in a braided ponytail every single day. The worst part was playdates- we really limited them at that time Everyone was suspect. I think playdates and sleepovers were the biggest culprits in spreading lice. The issue with lice is that they are hard to get rid of. They lay eggs in the hair, which are very, very hard to see, and they hatch in a couple of weeks, starting the cycle over. I would take the above precautions for the time of a couple of cycles. From what I have seen, the parents who are not serious about getting rid of the lice- end up spreading it, and taking more time. I was honest with my dd, told her it stinks to have to do this- but the alternative of getting lice is just more of a pain. Yuck- mine are both in middle school, hope the lice days are over.

Does he have therapy? I think it's important to hit pandas with medical and psychological intervention at the same time. A lot of these may now be learned behaviors that need a strong push to resolve. I highly recommend the program at USF. We saw most gains fromPEX during the first month- but did not do IVIG with it, which could considerably change your timetable. Hang in there- and you were right to snap- parenting OCD/pandas is all about "tough love"- we should not give our kids a free pass.

Nancy- sure you will figure this out, this year. I find it so interesting how much our kiddos have in common. My older one has been really, really great pandas-wise for a couple of years now- but she still has a "perfectionist" personality, especially when it comes to school work. It is funny because I have to be a little bit of the un-parent: yes you have time to go to the mall after school, no don't redo that paper, who cares if you fail the test, etc. It is a constant discussion with her to have "balance" and keep things in "perspective". (she was SHOCKED when I told her that once you left middle school, NO ONE ever looked at your grades from that time again, ie college). Last year she got an award that our school gives to those students who get all A's in every class, every marking period, on their report card. Needless to say there are only a few of these kids (it includes pe, art, etc). She worked hard, and worried about it all year. So just last week she says to me: "this year I am going to really buckle down in school, and work hard. I didn't do my best last year, could have studied more, etc." WHHAAAT?

Hey Nancy- I am glad you didn't think I was too harsh (being "harsh" with my kids is actually a skill I have learned as an ocd parent, didn't come naturally, so still sensitive to it). From what you are saying, you seem pretty convinced this is an ocd thing- so why not attack it with the usual ERP? I am sure you, or your therapist would be able to come up with some exposures, and this is probably, in the realm of ocd, a somewhat easy thing to beat (?)

tu4four You have seen ocd triggered by strep, you have had a high Cunningham test, and you have not seen positive reaction to lyme treatment. IMHO you need to follow these clues and consider having pandas treatment. This means treating the autoimmune component with something like steroids, pex or ivig. I have known parents from this board whose kids exhibited similar symptoms, for more than a year, and have responded to these types of treatments. My kids are well now, thankfully- but I don't doubt they could be in your daughter's condition if we did not have pandas (autoimmune) treatment. Antibiotics were not enough. We decided to "ignore" some positive Igenex bands (not CDC positive) and continue down the pandas path, as that is what onset and symptoms correlated better with. They are now symptom free. Good luck!

Hey Nancy- good advice from above. I continue to wonder if my dd has some eye issue. She also is an avid reader (for pleasure), and has great comprehension and retention. BUT she really prefers to read with a bookmark as a slider, or sometimes she says she loses her place. Our "mainstream" eye doc did a thorough exam and felt she was totally fine. So for now, I am in a wait and see. My older dd, who sounds very much like your son in so many ways, honor student, perfectionist, etc- did go through a period (when she was not as well pandas wise) where she really wanted us to read her homework (novels) to her. I felt the same as you- great, but sometimes (most) I didn't like the book, and obviously while only in 6th grade at the time, I know how these things become crutches or habits. We required her to read the chapters on her own first, and then if she wanted we would re read the chapters aloud. She was always afraid she would miss something, and her class was very (ridiculously) challenging. So, my thought to you is this- your son is doing awesome, his grades are awesome- let it go for a while? I mean, in today's time, most parents are WAY into their kids business like our parents never were. With us having kids that have had some "issues", we are hyper focused. I do think we all have challenges- and I know you want to help him, but I think the way to do that, is as you do, move toward him having absolutely no accommodations. If possible he should read the fiction work, and then use the audio book as reinforcement. A slider is a great idea- he can use that the rest of his life. Tell him, he obviously knows, that you notice this issue, you see where it could eat up a lot of time, and cause stress- and then maybe let it be unless he really wants the help. I guess if it is an ocd thing- you know what to do- and that is to NOT re read (by using LLM's method)- and if that means grades suffer a bit so be it. So- I am not meaning to sound harsh- just giving you food for thought. I am so glad you stay around on the board, as the moment I see a post by you, I know I am in for insight or a little humor! Keep us posted.

tu4four My heart goes out to you. I suggest you to follow your gut and heart, and in the end always do what will keep your family safe- that is priority number one. I read your story, and I wonder if your daughter was diagnosed with pandas? If so, does she see a pandas specialist? And has she ever had treatment for the autoimmunity component of pandas? (steroids, solumedral, ivig, pex) I just ask, because the theory behind pandas, and what has held true for my kids, is that chronic infection is not necessarily the culprit, but it is the autoimmunity triggered by any ordinary infection. This autoimmunity may go on and on, like you describe, if not treated. Both of my girls have had similar behaviors to your daughter, specifically ocd, clothing sensitivity, anxiety, extreme irritibility, temper tantrums, and cognitive inflexibility (fixating on something they want, or want to do). Thankfully, ALL of their symptoms resolve relatively quickly when they are treated for the autoimmune component. To me, if your daughter has pandas, it sounds like her immune system is extremely stirred up, and she will need a combo of treatments (pex and monthly steroids) along with highly effective therapy (I strongly suggest the USF program for childhood ocd). Hang in there,

Beesknees- Sorry things have been rough. My only suggestion is to figure out what you are treating, before throwing all the meds at it. I know this is the million dollar question, but I think it is important. If you are treating autoimmunity (perhaps the ivig stirred up his immune system this time?), all the antibiotics are not really going to help. You would need steroids or the like. If you feel you have some chronic infection- that may be the reason for the flare with ivig, and you should work to figure out the infection to target it more specifically with meds. I don't mean to sound cold at all- just that for us, we have found that what our kids have is definitely autoimmune, and all the antibiotics in the world don't touch it. Yes I know some have mild immune modulating features- but there are MUCH better options if that is what needs to be done. We are able, thankfully, to see results with steroids, solumedral, pex, etc. And yes, apparently minocyclene is the best antibiotic for immune modulation and crossing bbb- so might be worth a shot. There are other families on here who have found chronic infection to be the culprit- and therefore needed to go a different route. My personal opinion is you need to go with your gut on this, what do symptoms, onset, and test results all point to. What treatments have worked. I know you have been at this a while, and you are really smart, you are going to get your little boy well- hang in there!

Normal adult dosing- normally two tablets, 3x per day. The effect is cumulative, so don't miss a dose. Wean off after 5 - 7 days. When PANDAS is just starting to flare, we have seen this be very helpful- when already in midst of a flare not so much. Give it a try, it may at least take the edge off...

Jean- So sorry you are going through this during what should be such a magical time for your family. I am definitely a proponent of testing the kiddos for everything, esp other autoimmune issues. But, I will also say that what you describe: pale/gray complexion with bags under eyes, slow build of behavior issues, and losing/ not gaining weight have all been symptoms of pandas for my younger dd. They have all resolved with immune modulating treatment (pex or steroids). There have been a couple times where dd has gotten off the school bus, and before she says a thing to me, I can see her pandas has suddenly flared because she is pale, has bags under her eyes, and her eyes look like she is in a fog. (she had been fine sending her off to school). We can almost always SEE pandas in her appearance (not so in my older pandas dd). Eating/ weight has also been a more scary issue of pandas, which also resolves for us. You are lucky (as we are) that you have an original strep trigger. Unfortunately, post initial exacerbation pandas can be triggered by anything. For us, searching for infection has not helped us (I know it has helped others)- dealing quickly and agressively with the autoimmunity has kept my kiddos well. What has worked previously?

My daughter had heartburn, stomach aches, fatigue and severe fear of vomiting (and thinking she was going to vomit) as her major pandas symptoms. It ALL cleared up with aggressive and appropriate PANDAS treatment. Sometimes ocd/anxiety can appear to be physical- but can really be anxiety based. I am all in favor of ruling out illness- we did- but in the absence of positive testing on any other illness or disorder, I would feel comfortable treating these as pandas symptoms, and seeing if the pandas treatment takes care of it all.

Stay calm My daughters both got strep while on multiple antibiotics (zith plus augmentin). My ped (not great with pandas btw) promptly put them on clindamycin. Clinda is the recommended antibiotic for strep. Your daughter is young- but I would ask the ped if they would consider a round of clinda. For my kids it clearly resolved the strep (they were culture positive). Resolving the resulting autoimmunity (pandas flare) was a separate thing, for that our neuro gave us steroids, which stopped the flare up. Hopefully your daughter does not have strep- there is a summer cold in my area (daughter had it) that starts with a sore throat (no fever though). Our focus for the last two years has been to not try to prevent pandas, rather to manage it. We have learned that we cannot (nor would it be healthy) prevent all illness in our kiddos, BUT we can be prepared to react quickly and aggressively (as needed) to halt the pandas in its tracks. Do you have a pandas doc you work with?

Hey Jag- I feel your frustration- but so glad things are going well! We are in a similar place (although neither of my girls have ever had high titers, even after strep!) in that both of my girls are happy, social, blossoming, academically achieving, etc- but I do still see some minor issues here and there that I attribute to pandas. I know we are not out of the woods- but feel more and more confident that we can manage this- and they will be ok, really ok. In some ways, it is a luxury to stress over the last 1 to 5 % - for there were so many times we were just "surviving". Kay- so sorry things are tough now- we haven't talked in a long time. I am sure the steroids will work again- as I know you have had great luck with them in the past.

julie- I do know one pandas doc that says that kids with active infections do worse with ivig- have sometimes bad reactions. That being said- hindsight is the only way to know what to do with pandas. I would certainly suggest that you give the antibiotic treatment longer. Follow your gut. My feeling is that you NEED to do what works. Give the abx two months without expecting to see anything- after two months I would expect improvement, or I would question our path- this is just me. I would try several options before going to the big guns (pex or ivig)- but that being said, I would move to the big guns if I did not see continued improvement (we did and it was great for us- no lyme). Let your ocd benefit you here- approach treatment methodically, change one thing at a time, and give it at least 30 days to see improvement. If you see major worsening, pull back or discontinue. Good luck- she will get better

Hey T- Hang in there! I would say our experience mirrored Pow pow- we saw some immediate changes, but most improvement took place by the end of first month. We did therapy during this month to help dd let go of ocd. Therapy was SO easy at that point, but I do think needed.

I will have to read the article- thanks LLM and EA! I have been wondering about the possible unintended effects of probiotics, both negative and positive. Research seems to be bearing out that our gut flora can have a major impact on our overall health, and probiotics may be a powerful tool. Things that are so powerful tend to have the capability for both positive and negative effects. I have started to give probiotics only during the times my kids are on antibiotics. We have been trying to pull back on all meds and supplements during the last two years... We really see no effect from the probiotics, negative or positive.

mary m- I do think that is a big part of it...

Wow! I would contact Dr Rahman directly, and also contact Aetna. You certainly should have the right to know what you will be responsible for prior to going!

HT's mom- do you know if a doctor's note is enough? (in NJ- a doctor's note was NOT enough to exempt my kids from vaccination- I was forced to take a religious exemption_. Thx!