dcmom

My daughter has always been a rather healthy child. She has had strep a few times, however, and now I am wondering if one of those times it never cleared. She had strep Spring 2008, then again Fall of 2008, then when pandas started Winter 2009 she cultured positive, but had no symptoms. I guess the probability is that maybe she never cleared from the previous infection? Do you swab your kids even when on proph abs? What type of symptom increase do you wait for to do that, or is it if you hear they are exposed?

Update: Went to school at lunch, and she is fine. Teacher said she is totally fine in class. I am of course, relieved. Thank you all for your support! This is going to be a long year....

I thought they didn't do penicillin injections anymore. I think there is a negative that if you are allergic (or develop an allergy) to penicillin- it is worse in the IM form. Maybe colleen could speak to that. (I am just thinking out loud- as I am also fearful of long term antibiotics). Also, I know that missing a dose can cause you to lose coverage for a day or so. This may not be such a problem now, but when they are older and out a lot.... I occasionally see a NY neurologist who is a well regarded TS and Pandas specialist. He changed dd from amoxicillan to zithromax (when it wasn't working). He mentioned something about it being easier on the stomach (maybe because you only have to take it 2x week as compared to daily). Has anyone else heard this, or do y'all think pen is easier on the gut? I am considering switching (maybe to Augmentin), with being able to keep a prescription for zithromax in my pocket to use if we see any flares. I have had the unfortunate experience of not being able to be in contact with my 2 neurologists when dd had a flare of symptoms- so I hate to be without lots of prescriptions... I guess the other thing is if their strep is intracellular- pen might not be able to get it. Have we totally erradicated any intracellular strep with the zith, or maybe it is best to keep them on zith for a year, and then switch. Oy!

Can you tell me a little about the discussion you had about antibiotics?

Julia is on day 14 of the steroid burst. Tommorrow she starts to taper off for 2 weeks. She had been doing great! No temper tantrums, eating, wearing panties and all types of clothes (still no socks, though), using the bathroom without much stress, very happy. Not 100%- but on her way. She did great the first day of school. Yestarday, the second day of school she whined a tiny bit when we said goodbye- no big deal. Today, day 3, I had to drag her to school crying, and I promised to go back at lunch time and pick her up, if she doesn't want to stay, in order to get her to go in. (This was what we did last year under the guidance of a psychologist. It worked almost every time). Sigh. This caught me so off guard since she has been doing well. When your children did the steroid burst- did all of their symptoms go away by the 2 week mark? When your child has separation anciety, what do you do? I am having a hard time keeping my strength- the mommy in me wants to take her home and spare her the stress and tears. Before pandas, (although we never had this issue) I would have said she must go to school- no matter what. Now it is so hard for me to figure out what is right. Last year, during the worst couple months, she had extreme sep anxiety every day- nothing helped. It was devastating to her. Once she did the 30 days of zith, and things were under control- it was gone. I kind of feel that strategies a parent would use with a non pandas child- are not necessarily helpful in the case of pandas. Any stress seems to throw her over the edge.

Hi everyone. School just started here. The first day went well, but this morning she had a little separation anxiety. I am working on setting up meetings to establish a 504 plan. To round out the pandas, my dd has always been very shy. She has borderline selective mutism, which she was really doing great with, until the pandas hit. Pandas has put us two steps back in that, and also (I think) schoolwork- she lost so much time last year. Oh well, I just wanted to post to ask those that are working on 504's to post the list of accomodations they are asking for. I am thinking: call me immediately if she is suffering higher than usual anxiety- it could be the start of an exacerbation excuse absences and lateness- I will pull her out (or she may be late) if she has an episode, or if strep runs rampant in the class (which it did last year) notify me of strep cases in class, and if there are outbreaks of strep in the school notify me in advance of all assessments pair Julia with her close friends in new situations If possible keep Julia with the teacher, and not aides or parents, during activities I would love any other thoughts.... PS: Last year (mostly before we knew about pandas), I spent so much time forcing her to go to school. This year I can't do it- it puts her (and all of us) through so much stress. I would be open to homeschooling, but she loves school, however if she has an exacerbation, I would be happy to keep her home for a month (or whatever it takes) rather than going through the agony of forcing her to go. Sigh.... I love this forum, and all of the parents on it. It has been my life line for the last 6 months. But, I have to say, I get such a pit in my stomach when a new parent joins....

Pixiesmommy One of my daughters major issues during her initial pandas episode were urinary. She started with having to go frequently and/or never able to get a dry feeling when wiping. This got worse, until she would sit on the potty and wipe for 40 minutes after urinating. This eventually led her to avoid urinating at all expense, including many accidents. She eventually wanted me to wipe her (for some reason this relieved her from having to struggle to get dry), I would wipe, and she would yell that I don't do a good job, but then she could get on with her day. She is much better now, but still has me wipe her if I am available. Public bathrooms are very difficult to her, although she is doing better with that as well. I know at least one other pandas girl that had almost the exact issue. I also saw a write up in a pandas study that many of the kids had "excessive toileting issues".

Vickie- do you think the chlorine could apply to the ocd as well. (Our lovely city water is treated with chloramine- so dd bathes in it all the time...)

Thank you for your post, Vickie! My daughter is doing well right now, but she still has hair issues. If I touch her head, or hair, she gets mad and has to shake it around and rub it to fix it. This is new for her. Forget brushing it- she freaks out- I now only do that on bath night. At her worst, she would go to the market in her pjs (yes, sometimes with a stain on the front), hair not brushed, and very short tempered. (Good thing I am a confident mom- because this was humbling). It is so great to be able to connect and share with other parents going through the same stuff! BTW, a couple of weeks ago, I told my dd that I knew another mom who had a daughter with pandas, and that she had the same issue with wiping after urinating. I could see the interest and almost joy in her eyes when she knew she was not alone....

Caryn, I have been thinking about the gut/brain connection, and the association of autoimmunity and food intolerances for a while. My dd, age 6, was diagnosed with pandas this year. We have spent the last few months trying to get her well. She is doing much better right now from antibiotics and a steroid burst. I now feel I have a somewhat clear head, to start looking for more answers. She has always been a mostly healthy child. She has, however, suffered from chronic constipation since she was in diapers. She is much shorter in stature than her sister, and most her age (although I am not tall, and the ped is not concerned). And she tends to be a pretty picky eater. So anyway, I am wondering about gluten, and/or dairy. My new DAN doctor is having me do a stool test, hopefully that will be helpful. Can you recommend any websites to get me started if I want to try a gluten (or grain) free diet? How long do we need to do the diet, to figure out if we are getting results... Thanks!

That is awesome! I have been anxiously awaiting my copy of Saving Sammy, which I pre ordered from Amazon. Hopefully, the word will get out, and pediatricians will be less resistant to prescribing antibiotics, and exploring pandas as a diagnosis for some kids. The wasted time spent dealing with resistant doctors is unbearable, and, I think, makes it harder to treat our kids. My only concern: I think that Beth's son was "cured" by a year or more of high doses of antibiotics (amoxicillan, I think). I am not sure if there was any more medical intervention involved, possibly puberty was a factor. I am just hoping this doesn't paint a picture that this is an easy fix with antibiotics. For some kids, maybe it is, and for some I think it is not. I just think I would like to see some info out there about IVIG and PEX, and how these procedures also cure kids. But all in all, ANY publicity would be great- especially for those yet to be diagnosed... If anyone thinks of it- post a reminder to watch the show a day or two before...

Well, we did the blood draw yestarday for the Cunningham test. DD is not at baseline, but not at her worst either. I don't want her to have pandas (but I know she does), but if the test were to come back negative, I would be LOST. This seems like it is a definitive test. I guess if her numbers come back normal, we would re- run it if she were to get worse? We are also on the first day of a 4 wk course of steroids (2 wks/ 2 wks tapering off). I guess by the end of all of this, we will have some answers. I am a nervous wreck, and we are going on vacation!!!

Can you describe the molluscum? My pandas dd has small, skin colored bumps on her knees. This is relatively new (this winter). They do not bother her. When I look up molluscum online- the pictures look much worse than what she has. From a distance, you wouldn't notice hers (in fact I think I am the only one who does, however I notice everything now- post pandas). I keep meaning to buy Eucerin to see if that clears it up...

I emailed the researching doctor, and just rec'd an email back! She said they have been contacted by many other families as well. Right now, they hope the study fosters awareness, which will lead to future research. She said they are hoping at some point to have the budget to work with children, but right now do not. They are continuing to work with Dr Swedo and the NIH. Nancy- maybe this study could be what you need to get some TV interest. I have an aquaintance who works for NPR, I think I will contact her...

Thank you Colleen! It is so great to see researchers studying pandas. I just hope they take the next step in working on treatments. Of course, to us it is a no brainer that it exists. I kind of wish the $$ could go toward researching a cure. I know it is one step at a time- I am just short on patience.

EA mom- I did talk to one mom from Swedo's study. Her daughter was cured with pex- never had another problem. She kept all four of her kids on proph abs until her pandas dd went through puberty. I don't know if this was Swedo's idea, or someone else. When she finally took them off the abs, one of the younger ones came down with pandas. He ended up having pex, as well, with Dr Latimer. It is a hard decision! Hope you start to see lots of improvement!!

What is it with the inlaws? Mine were here last weekend. If you ask them my daughter was always a difficult child, and I am sure I am too indulgent. Sigh. I try to let it roll off....

Anne- I totally understand your dread about the start of school in a few weeks. My daughter is starting first grade. She does not have tics- but does have other issues that come up at school. I know the older she gets, the more other kids will take notice. Have you seen a psychologist with your son? I did last year with my daughter. She was extremely helpful in guiding me, brainstorming, and just talking out issues I was concerned about. Often, she confirmed what my gut was telling me to do. It was a huge help and support to me. If you feel the bus ride home will be the worst, would you consider driving him home? I am a bit of a softy, others may not agree with that as a solution. I just know that kids can be so cruel- which is something we, as adults, don't have to deal with. Good luck- I hope all goes well...

My dd, age 6, had bedwetting, along with daytime accidents (even some at school) during the worst of her pandas episode. She had never had any issues before. It did pass with time and antibiotics. She hated going to the bathroom at that time, because of the need for excessive wiping to feel dry (ocd). We blamed that on her accidents- but it seems many pandas kids have these accidents- so maybe it was somewhat unrelated. I would not necessarily worry about a bedwetting program yet. I think it will resolve, when the pandas is under control. (My dd's issue lasted a couple of months- which is very long when you are in the middle of it, I know.)

Hi Emma, This is where we are right now. Pandas dd, age 6 had her first pandas episode this winter. We treated her aggressively with antibiotics. She returned to baseline after a month. We enjoyed a month of no pandas symptoms. We then had her tonsils removed (as per 2 neurologists, and and ENT). Exactly 1 week later, the pandas came back. She did full strenght antibiotics 10 days before, and 5 days after surgery. I haven't had her cultured, yet. She is now at about week 6 of this episode, and things seem to be turning around. I definately feel this episode was due to either: anasthesia or physical stress of surgery opening the blood brain barrier, or exposure to strep in surgery. I am still glad, however, that we had the tonsils removed. If it can prevent one or two strep episodes in her future- it is worth it. I wanted to have it done before we considered IVIG or PEX. If I had to do it over, I would keep her on full strenght antibiotics for about a month post surgery. Unfortunately, at the time when we needed the antibiotics, both of her pandas doctors were unavailable for a month. Luckily, though, it is summer- so many of her issues were not as big of a deal not having to go to school. How long ago did your child have surgery?

pixiesmommy- Did you tell us what area you lived? Maybe someone on the forum could recommend doctors helpful with pandas...

Lisalou- It is def true that kids get transient tics. But with the strep connection, i would consider that route first. It seems most pandas kids need a longer course of antibiotics to get things under control. There are MANY pandas symptoms, but many times the sentinal episode is milder. Would your doctor consider 20 to 30 days of a treatment dose of zithromax? The dr could give it to you in 10 day intervals. (It took my dd 20 days of zithromax to see a huge improvement in her pandas symptoms). This seems like a pretty simple first line type of intervention. My daughter had ocd- no tics. Post on the pandas board to find out how long antibiotics took to help for kids with tics. Best of luck!

My dd had her initial pandas episode this winter, age 5. Urinary issues were initially the most prominent issue. She refused to go to the bathroom, always waited untill it was an emergency and was having a lot of urinary accidents. When she did go, she had to wipe incessently, and never could get the feeling of being "dry". This took over her life (and mine). She also became very restrictive with what she would eat. She lived on pancakes for about 2 weeks. Zithromax, patience, and time (in that order) helped her get over these issues. Hope this helps- good luck.

I am sorry about the puppy! I know it is a lot of work. I have to admit, I think I want one as much as the kids (it's the dh that needs convincing). I totally agree about being through the ringer though. I feel we haven't had much of a summer- it has been very hard on non pandas daughter. Just hoping to bring some happiness.... Maybe santa will bring one!!

How do you tell/ what happens if strep is hiding out in the gut? Older non pandas daughter had strep in the winter- we had to cut short her antibiotic treatment because of an allergic reaction. She has not been feeling right since (done the whole GI route), but the doctors can't find anything. Could she have strep in the gut? (could this be aggravating pandas dd)