Missmom

Unless you are very lucky it may take several months to get an appt. to see a specialist, most of them have long wait lists. So my advice is to get on the list but in the meantime print out as much pandas info as you can and get into see another pediatrician. Show them your info and explain this history with them. Maybe you can find one sympathetic enough to give you some trial antibiotics.. Amoxicillin does not work well for most of us so ask for augmentin or Zithromax. Augmentin seems to work better for us. You need to try find someone local who will listen to you for times when you can't get into see one of the specialists... Good luck.

I agree with hopeny. I would run in another direction. Your kids will probably be disappointed if you cancel so maybe you could quickly plan a few days somewhere else until you reschedule. Even though they may be on abx they may not be vigilant in changing their toothbrushes, etc.... and they could keep reinfecting themselfs. Also like hopeny said the parents or dog could also be infected. We have to be paranoid.

I don't have any real advice to give, but just wanted to say my thoughts and prayers are with you. Sometimes we (as parents) try to sit and think of the best way to approach these types of situations and then it all completely backfires. I probably would have approached it the exact same way. I hope that the minocycline works, I bet it will.

Has stopping the abx. helped at all? Just curious.

This is interesting as I'm sure a lot of our kids are exposed especially during dental visits. I read the article but am not exactly sure how to take the results as it relates to the b-12and folic acid in our children. Does this mean we should supplement more before surgeries or dental visits? If anyone who is better versed in medical lingo can explain in basic terms, it might be helpful. Thanks

I have also been wondering the same thing although I am constantly second guessing myself and all of my decisions. My ds12 was tic free for two years and then this past march was taking a very low dose of amox. for an eye infection and on about day seven of that started with a slight winking tic. That lasted a few days then a really bad head nod started every 2-3seconds. We started on augmentin and things improved to about 70%. But then regressed again. We increased doseage several times and with each increase the tics got worse before they got better. It took about three weeks before he was finally at about 90%. We then started a daily prophylactic keflex. He remained between 80-95% for about a month and then started flairing again. I started him on full dose biaxin and then things really went bad. He started with a really hard blinking tic and head nod which was bad the entire ten days. I did not want to stop giving the biaxin because I was afraid the infection would not go away so I stayed with it. Anyway now we are back on the daily keflex and things have improved to about 90% again. The tics have never fully gone away though since march. I have also noticed a little bit of an increase within two hours of giving him the keflex. I wonder if I took him off of everything if things would improve but I am too scared to stop the daily keflex because strep is still going around in my area. I am curious about yeast as well because before I found this board I did not know to give probiotics. So that could be an issue. Don't know how they test for or treat yeast but it may be something for me to look into. I am pretty sure Lyme is not an issue for us as he has never had a tick bite. Never been the outdoors or camping type. I don't really have any answers for you other than to say I have been thinking the same thing. Antibiotics are suppose to stop tics not make them worse. At least that has been the case for us in the past. Anyway, I will watch this post also and look to see what others might say. We just had a bunch of labs run on Monday when we had an apt. with neurologist but have not gotten any results back yet. I will post if i learn anything interesting from those.

Get some rest, you will need it. It does seem to run in families. It is difficult to stay away from pools and stuff in the summer, but personally I think watermarks are way more nasty than pools. So many more people go to them in one day and with all the people in and out, walking on dirty bathroom floors then getting back on a big slide over and over again. Since all of this pandas stuff I look at everything differently now. It's almost as if I can see the germs everywhere especially handrails, elevator buttons, etc... Etc... Stuff I never would have thought twice about before. I find myself thinking "I wonder if that has ever been cleaned". Paranoid right?

Maybe if others on here have their own chlorine pool they could chime in and say if their children react to their own pools differently than they do public pools/water parks. We have a salt water pool and my ds does fine. In the salt system pools, the salt is broken down into chloride-chlorine which sanitizes the water. I am not exactly sure how the system does this but apparently it is just as clean and sanitary as the regular chlorine. I don't know if it is just the difference in private vs public pools or salt vs chlorine but an interesting thing to consider. Maybe others will chime in.

Maybe that explains the frequent urination issues.... Your body is getting rid of fluids which would lead to the excessive need to urinate and then registering as dehydration. Wierd pattern. Then the more fluids you take in resulting in more urination. Huh... Don't know just thinking.

That is a great idea about finding church members to help with babysitting. I just wanted to add to that. In our area, many high school are requiring students to do community service hours as a part of their curriculum. You could try to get in touch with someone at your local school district to see if any students would be able to help you out. Also, Before we moved I had a job working part time from home. Many companies are finding this to be a great way to save costs on office space, supplies, etc. It may take some creative searching to find some of these companies but there are legitimate companies that are doing this. If you would like more info regarding this please pm me and I will ltry to give you some ideas on how to find these companies. Good luck.

Sorry, but I cant answer either of your questions regarding California, or chiropractors, but if you care to list some of your dd symptoms maybe myself or others would be able to help you find some direction. I am curious what spine issues your dd is having. It is good that you have seen improvement with abx, and hopefully you can continue with that until further testing can be done. Good luck and try to stay positive and focused.

My son takes everything literally as well, like because a tube of toothpaste says call poison controll if swallowed then he is afraid that he is being poisoned if he swallows a drop of toothpaste. He needs reassurance that he is going to be fine. I tell him that that label indicates it can be dangerous if you just eat a whole tube of toothpaste like candy, but swallowing a little bit when you brush your teeth is not harmful. Then he asks how much is harmful. I tell him to stop worrying. Just one example.. I think it is related to the OCD. I am trying to teach him to reason with himself, and I say when he asks again and again for reassurance, "what do you think?". My son has always been a strict rule follower as well and he quickly reminds me if I am breaking a rule. Ughhhhh.

Have you had her tested for ADD. It does not sound pandas related to me because there does not seem to be any sudden onset or triggers... Unless she gets drastically worse when sick. I have a friend who's daughter sounds just like your daughter. She is ADD and is taking meds.. They keep increasing the dose because she just can not seem to focus. She is also very creative in the way she expresses herself and has a unique answer for everything. I am often asking her mother "where does she come up with this stuff?" she seems very mature for her age because of her vocabulary and stuff but at the same time she does not focus at all on what others are saying to her. Anyway, just a thought.

I am no expert but should start by making an apt. with either a specialist or someone listed as a treating doctor by someone recommended on this site or others like pandas resource network or Beth Maloneys site. Just find someone to make an apt. with. If the wait is long then they could go to an urgent care and demand a strep culture and the strep blood test. Hopefully that would get them some antibiotics to try in the meantime. I got a diagnosis from our pediatrician in march but can't get in to see someone with more experience until July. It has been hard waiting but at least my ds is on prophylactic antibiotics until then and hopefully we can get more testing done and start a good treatment plan. I can't emphasize enough how helpful it is to get started on treatment early. From what I have read here and on other sites the longer this goes on the longer it takes to get better. My son is finally doing well, but I can't wait until the day when he is completely healed from all of this mess. I know others will chime in but without a doctor totally committed to treating this there is not much else you can do.

I like hearing stories like this because it reminds me that there are many other avenues to explore should we strike out with antibiotics, etc.... Please don't hesitate to post positive stories here because it gives us all hope. I still think there should be a thread of positive stories and stories of healing on this forum, as we all need to read these things in times of desperation. It sounds like you are working with a great homeopath and that has put you on the path to healing. Unfortunately, as with doctors the good ones are hard to find. Take care and God bless.

If the vet won't prescribe them for you then you could try talking to someone at your local pet store. I remember reading something about being able to buy amox. At pet stores over the counter, because fish can take amoxicillin and it is the same as the human variety. I am not sure how this relates to dogs but maybe a manager at your local pet store might know. Just a thought. If that doesn't work maybe the dog could spend more time outside and somewhat separated from your son. Oh and one more thought you could also try your local farm store or feed and seed, they might know more as well.

I just wanted to add that my friend has a son In second grade in Wisconsin. There was a recent outbreak of pertussis and due to classroom possible exposure the state made all of the children in the classroom go get tested and take a prophylactic dose of abx, even though the test came back negative for her second grader and he had been previously vaccinated. She was not happy about this to say the least..... Why vaccinate in the first place if the state dept. of health is going to make everybody with possible exposure get treated anyway. Oh, and my friend also had to pay for the co-pay visit and the abx.... It is mass panic out there.

Yes, the strep titers will probably still show up high even if the strep infection is gone. I asked that exact question at my last visit. Our pediatrician said Usually takes a couple of months for those numbers to get back to normal ranges for your child. The important thing to remember is that even if the infection is gone and the pandas symptoms remain you will need to treat the symptoms just as much as you did the original strep infection. I also want to find out what the baseline number is for my son so I will ask for another strep titer test in a couple of months.

You could go ahead with the work-up and again my find other important/relevant info. in the process, as long as it does not cost you too much out of pocket. I just would be weary if they start trying to prescribe any anti psych meds. I would definitely follow the recommendations of your pandas docs though.

Not sure if anyone posted this or not, but here is a link for your states exemptions policy. It does not specifically state the medical conditions approved. Hopefully a willing doc will know: " The child's pediatrician, family practitioner or internist licensed in Mississippi must write a letter to the District Health Officer for the child's county of residence, requesting an exemption from specific vaccines for school entry. The letter must contain the child's name and date of birth, the specific vaccine(s) for which the exemption is requested, as well as the medical reason for the exemption request. The District Health Officer will reply by mail, and supply a Medical Exemption Form 122 for the physician to provide for the child." My link I think this is going to be an uphill battle for me!!! my ped. is refusing to give my son the medical exemption. I will go to as many dr's as necessary in hope that one of them will listen to me. what else can I do. It specifically states that it has to be a dr. liscensed in MS otherwise I would just do a phone consult with dr.k or someone and get their signature. It really hacks me off that there is one guy sitting in an office somewhere making decisions for OUR children.

I wish we had a religious or personal exemption. In Mississippi and W. Virginia. the only exemptions available are medical. I don't know where to find the list of conditions that apply for the exemption. This is so unbelievable. I am so frustrated with this whole process.

No there is no religious or personal exemption. Only a medical exemption... I am researching online right now and feeling helpless and screwed.... I called our district representatives office in the state dept. of health and they said that they have to receive all of the relevant information from our treating doctor and then will make a decision based on the circumstances. I am just highly perturbed right now that there is some beaurocrat sitting in his desk somewhere deciding who is worthy of his exemptions....why should the health and well being of our children ultimately be decided by one man. My son seems to be doing ok right now and is recovering from a recent strep infection, so if I take him into see a new doctor they would look at him right now and figure he was doing fine. I even asked if an exemption could be written by a doctor from outside of Mississippi and she said no it had to be a physician licensed in Mississippi. I had thought about paying for a phone consult from dr.k or dr.b. but that would be useless now as well. My options are very limited. I could not live with myself if I made him get this vaccine and it ultimately caused major damage. Especially knowing what I know now. I did get him fully vaccinated before kindergarten but that was before I knew of the pandas.

Ditto. A DAN doctor would be a good bet. Even though your child is not Autistic, DAN docs are regular docs (ours is a Family Practice), but they practice the DAN protocol for Autistic kids. They understand the medical complications of all these things that affect our kids' immune systems. Alternatively, is the neurologist a PANDAS specialist? I believe those are good options. I can understand your pediatrician's hesitancy, because this is out of his/her realm of practice, but the other 2 should be able to help you. The neuro is not a pandas specialist but was listed on the pandas resource network list as a treating doctor, we had a three month wait to get in to see her so we will have to wait and see how it goes. I just checked the autism sites and the only Dan dr. Listed in ms is not a MD. So that will not work for us. The state requirements for exemptions seem very strict. I may call our district rep. And see what I can do.

I will ask about testing his titers, but I don't think his ped. will even do that because he was pretty close minded about it. Is it just a simple blood test?

Ok sorry just figured out it is the Tdap vaccine not the DTaP vaccine although basically the same thing.