dcmom

Joan- You should consider trying zithromax if the augmentin isn't doing it. Lots of parents her have found it to be really effective. I would also try a month long steroid burst, it can be a diagnostic tool, and for some jump start healing.

Hi pandas mom- Your daughter needs to be on longer term antibiotics. If amoxicillin is working, stick with it for now. I would suggest daily abx for a few months, then if you like, slowly wean her to a prophylactic dose. Make sure to do probiotics as well. I do need to tell you, most kids on this forum end up needing long term daily antibiotics. You need to find a doc who knows pandas....Email Diana at pandasnetwork.org and Beth Maloney of Saving Sammy.net to get suggestions in your area.

hi kcdc3- My kids are on azith. DD, 36 lbs is on 200mg/day, DD, 54lbs is on 250mg/day. I believe these are treatment doses; not high dose, but not prophylactic. Your son weighs more so I would check to see that it is enough. I believe you can go on zithromax's website and find out the normal treatment dose for strep for that weight. It is certainly ok to do a larger dose for a short period of time. My little one went on zithromax pretty quickly after her first episode. At that point, it took a full 20 days to START to see improvement. She did then improve to about 95%. It def takes time. How long have your kids been on this? After a month, I would consider a steroid burst to possibly jump start the healing.

A bit of good news for now. Took both girls to see Dr L yestarday. She thought they both looked great. She gave me a month of steroids for each. Julia had a great afternoon, and then a great morning- so at this point am holding off on the steroids. Maybe she just had a little one/two day blip because of the tooth, or exposure to something at school. Caroline will start steroids tomorrow. I was so down in the dumps yestarday, but now feel much more positive. I totally felt (as I think mommd said) that Dr L is in this with us for the long haul. She feels each kid is very different, and we just need to do what works at this point. I am hopeful that we can at least get through the holiday season....

mommd- Its funny, I was thinking of getting the kids a tramp this summer, mainly for Julia (pandas). I think physical exercise can only be a good thing- provided they also have enough rest time. Why am I thinking that I saw somewhere that there is some therapeutic value in tramp jumping, also. I'll try to google it later. We didn't get one, concentrated on horseback riding instead (which has also been fabulous for her) maybe this summer. Might I add- what an awesome christmas gift My brother had one as a kid, and even in college- I loved it Eileen

Julia has so far not put her other baby teeth under the pillow. Initially I thought it was pandas related, and thought it was so sad. Then a friend of mine with 2 non pandas kids, told me her kids felt the same way. Whew- maybe it's common Will report back about visit with Dr L today....

Julia did really well with her steroid burst. I have to check the calendar, but she has been off them for a week or two and things have been really good. Yestarday morning she resisted a tiny bit about going to school- a bad sign. This morning she lost a baby tooth, and then had a much harder time going to school. She loves school, and only has issues when in an episode. This is not a good sign. I thought I remembered seeing someone had issues with losing baby teeth. Any thoughts?

Mommd- I have really nothing to add, except that I am so sorry for you and your son. The ocd stuff is so hard. I have seen my daughter counting here and there, and am a little nervous. She has been off of the steroid for a week. It's a really good thing that he is sleeping, though- when they don't sleep and then are so tired, it just makes everything so much worse.. Is Dr Latimer suggesting IVIG? What does she think of the relapse? We are seeing her tomorrow... Keep us posted!

mati's mom- are you in the DC area? We are getting together a mini support group here, planning on meeting in January... Eileen

FYI H1N1 has been a trigger for many pandas kids on this forum...

As you know it is just so heartbreaking- she was so amazing- confident, happy, enthusiastic, brave, smart, etc.. so much of that is gone

mati's mom- has anything worked for him? how does one test for adrenal fatigue (don't tell me - more blood- this causes hysteria, fainting and vomiting in her).

Peg- Here are some random thoughts- I think you should try to push to have it done while you are here- another trip is so much $ and stress. Andrea at Dr Latimer's is really nice- I would talk with her. Maybe you should try to have a phone consult with Dr Latimer to give her your story. She is very compassionate (albeit very busy). Fax her any blood tests, including Cunningham's prior to the phone consult. Have your ped talk to her or send her a letter saying that he recommends pex. At the same time contact the Pediatric Hem Onc group at Georgetown University Hospital. Tell them the situation, and that you would like to have the bloodwork done locally if possible. Don't give up, be extremely nice, but keep calling until you get what you need. Andrea schedules the pex procedures, one patient per week, usually Mondays or Tuesdays. Maybe have a Friday appt- and ask her if she could book you for that following week at the hospital. The other possibility- any top notch hospital that does organ transplants on kids will have an experienced pheresis team. They may not do it for pandas, but they do the procedure. See if you can find anything locally. I am exhausted just writing this

peg- I don't envy you the trip- but am so glad you will see Dr L. Are you hoping to have plasma pheresis done while you are here? Did Andrea arrange everything? The pheresis team typically does an exam and lots of bloodwork, prior to the patient being able to make a "reservation" at the picu. Do you know for sure they are fast tracking all this for you. Would it be possible to have the exam and bloodwork done for you by a local HemOnc doctor so you could skip that step while here? How old is your daughter- is she full grown? The kids need to have a central line done for pex, but I think the attending mentioned to me that adults can typically have it done through a normal large catheter. I would inquire about that- it would eliminate that big first step, and the need for sedation. Eileen

Thanks for the responses- I will try to answer them all if I remember. The GI doc did not do a stool test. She has been swabbed prior to and and after her bout with strep in February- all others negative. Mom and Dad have been swabbed a few times over this past year. All negative. I never noticed the chorea- Dr Latimer did about a month ago at her first appt. We eliminated ALL dairy for almost a month at one point- no help. She is very regular as far as bowel movements go, usually once a day. Interestingly, a new ped we saw thought the abdominal pain was more a sensory issue, which he said he used to term anxiety (lightbulb moment). We did pepcid, prevacid and bentyl- no help. Caroline is almost 9 1/2, in fourth grade. I don't see any signs of developing yet. She is my oldest, so I did (sometimes do) chalk the emotional issues up to growing up. But the fear of germs, throwing up, and not wanting to do stuff (like go to the movies) because her stomach might hurt just doesn't seem normal. I don't know the eating thing- I think she just doesn't enjoy eating because she is afraid it will make her feel sick. She is eating adequately, but somewhat reluctantly. For breakfast and lunch, she eats the same thing every day. She doesn't like anything I offer for dinner (and she used to LOVE dinner). Like last night she requested spaghetti and meatballs- so I made it, but when it came time to eat she had about 1/2 of meatball and two bites of pasta. There is very little joy for her in food- which is so opposite of how she was.

Okay- I needed a little time to get my act together and post this. I am looking for some opinions and direction from y'all. My younger daughter Julia had a clear cut pandas onset concurrent with a positive strep test this February. It has been up and down for her since then. We see Dr Latimer, sometimes Dr Trifiletti, and are considering going to Dr B in CT. At the same time, her older sister Caroline, had the same strain of strep (no typical symptoms or pharyngitis- just had her cultured when she complained of a stomach ache). I don't believe she had it long or is a carrier, because when Julia was diagnosed I had Caroline swabbed- culture was negative. A week later when she was tired and complained of a tummy ache she was swabbed again, this time postitive. She did a course of amoxicillin, and got a bit better, but not completely. She was back to school for a week, and then home again for a week with stomach aches and fatigue. Did some blood tests, strep test, mono test, flu test- all negative. She did seem to get better, but the stomach aches never went away. Proceeded to the GI doc, did more bloodwork, urinalysis, and x ray, he found nothing and though it was functional abdominal pain. In the meantime, Caroline begins to be extremely anxious about the stomach aches (I mean it bothers her, but she is not doubled over in pain, has no diarheea or gas) she no longer enjoys eating or going out, and starts saying she dislikes a lot of foods she previously enjoyed. She quits ballet- something she has loved and been serious about since the age of 3- but like quits immediately she hates it and cannot go. She becomes generally more anxious and emotional, occasionally having some temper tantrums where she has a hard time calming down. She starts to have issues with kids at school- saying they are being mean. So- basically I have a new kid- she was extremely confident, shiny, enthusiastic, happy, kid who enjoyed eating and going out, and was my easy reasonable child. Now she is full of general anxiety, along with anxiety about stomach aches, throwing up (which she never does), germs and illness. She is very moody and doesn't like to eat out or go out much. As I type this its a no brainer right? She has pandas? I mean I had been attributing this all to getting older (she is 9) and the stress of the sister with pandas- but it is too much right? So anyway, her cam kinase was normal ? Where does that leave me? It was done about 8 mos after strep infection. All of her other Cunningham numbers, however were at the absolute highest number in the normal range. Dr Cunningham thought they were high but nothing conclusive. Dr Latimer thinks pandas is a possibility for her, she does have mild chorea. She started on daily zithromax (200mg- don't know if that is enough for a 54 lb kid) a few weeks ago. I don't really see any change yet. Am hoping to start a steroid burst this week. Oh and BTW, Saturday night we could not get her off of the toilet. She sat there for an hour. We finally had to physically take her off, and hold her in our bed. This went on until midnight. She said if she got off the toilet she thought she would throw up- there was no reasoning with my once smart reasonable sensible kid. Finally I put her in the shower, and brought her down to watch TV with me laying next to her hugging her for the next hour, at about 1:30 am she fell asleep. This is not normal, right? This is pandas isn't it- just milder than my other one? So what dose of zithromax should she be on? How long should I give it? If I switch, to what? She actually may have penicillin allergy...and possibly cephalosporin allergy...so I might be stuck with zithromax. Sorry this is so long. I needed to share with people who will understand....

I don't want to harp on this- but remember a negative strep culture does not necessarily mean it is not pandas. H1N1 has caused many pandas kids to have exacerbations- and, there are many definite pandas kids on this site that never had a positive strep culture.

Courtney- A couple things for you: Yes, get an immediate strep test. Go to a minute clinic or urgent care, lie and say his bf has strep and his throat is sore if you need to. These symptoms clearly sound like pandas. The thing is, even if the culture is negative it could be pandas. He has had strep, which may get the pandas ball rolling, but very mildly- then H1N1 could cause an exacerbation. An initial pandas episode triggered by strep could be as simple as some fatigue, separation anxiety and urinary frequency that could be stopped immediately with antibiotics. Many kids on here, including mine, have had subsequent pandas episodes triggered by H1N1. My advice is not to waste your time with docs that do not treat lots of pandas kids. There are only a handful unfortunately. Contact Diana Pohlman at pandas network. org and Beth Maloney at savingsammy . com for the most comprehensive lists. If this is pandas, you need to get your son on a strong antibiotic - and it may take over a month to see results. After a month on antibiotics, you may also want to consider a steroid burst. I wish you the best!

Megs Mom- I read your post, and can tell you I have the same fear. Julia ate very little during her exacerbation, and while she didn't lose weight, she didn't gain any weight from January to September (she did grow a couple of inches though). My bigger fear now is for my older daughter however, who we are now pretty convinced is also suffering from pandas (when I have a little distance from it, I will post her experience). She eats very little now. For her, it is all wrapped up in fear of stomach ache or throwing up. She eats ok at breakfast and lunch- but almost no dinner, and very little snacking (this is very out of character- before strep she LOVED eating, and ate a very varied diet). So I laughed (thank you for that) about the sprite, and being a "normal mom". When my kids ask for ice cream- I almost break my neck running to the freezer to get it for them. Rules about eating have also gone out the window here (although yes, we are healthy and organic- but also push ice cream, yogurt, bread and olive oil, and juice- yes juice. My dh used to complain that they drank too much juice- not enough water- now I really push the juice just to get the calories in). Yikes- pandas brings you to your knees as a parent, and makes you really realize what is important.

I have never seen a difference with advil- but also haven't given it on a regular basis. I am wondering, for those who think it helps- do you think it has a cumulative effect?

Hi Harmony- Sorry you are going through this. I also had an ID doctor read to me from a book once- thanks, I could do that! A few thoughts/questions: Is your son sick now/ infected? If so, I would think hold off on the surgery- that is a mommy gut feeling suggestion, no more. Is he currently on antibiotics? I would suggest (regardless of this current issue): 10 days of daily antibiotics prior to and post T&A (at a minimum) and IV antibiotics while in hospital. (My daughter had a pandas episode post T&A.)

I really don't know what you are talking about. Whether you agree with all of their tactics or not- all of the moms you are talking about are moms who are trying to make a difference. I mean, Beth is an attorney- I am sure she would make more money if she wanted focusing on that as a career, than one book. I for one, enjoy her updates on face book. Obviously, if one writes a book- they need to promote it. I am sure this is a contractual obligation, and I am sure they need to sell a certain amount to make up somewhat for the time they spent. Anyway, our strength is in sticking together, and not in tearing each other down. We are all human, all are not perfect, but we all love our kids and have been devestated by this illness.

Well said Worried Dad! I am with you 100%

Hi Stephanie- My daughter has reacted three times from exposure to strep. For her, I believe it is immediate- as someone stated "like a peanut allergy". All three times, she would start having a quick increase in symptoms (esp the emotional stuff). A day or two later, I would find out her friend, or a boy in the class, or her sister had strep. The increase would go away pretty quickly also- like over the weekend when she wasn't around this person. I guess I am saying, look at who/where he has been that day. My dd would come home from school tired and a wreck- before the friend was even feverish, etc. Good luck figuring this out... Did you know you would grow up to be a medical detective?

...just to add, I think several kids on this board have had episodes post H1N1.