Missmom

Ok, so, I am really starting to freak out. We live in Mississippi, one of only two states that doesn't allow for any type of vaccine exemption except the medical exemption for school vaccines. My son is entering the seventh grade in the fall and is required by law to get another vaccination. I believe it is the Tdap vaccine. The only other state that doesn't offer a religious or personal exemption is West Virginia. I have already asked my pediatrician about giving my son an exemption but he declined saying that the shot should not do any harm. We do have an apt. With a ped. Neurologist in July, and I will beg her for an exemption but I don't know what I will do if she declines. Getting a medical exemption seems like a very long complicated process. Do any of you have any experience with this? Any suggestions about what information I could print out and bring with me in July to try to convince a doctor to sign off on this? What can I do in the meantime? Should I seek out a DAN dr. I was thinking they may be more receptive to this type of thing, although my son is not autistic. If there are any other Mississippi moms on this forum who have any names of any doctors please pm me. Any advice is appreciated... Have any of you gotten this vaccine for your children after the pandas diagnosis and not had a problem? Maybe I am freaking out over nothing... Just more to worry about.

Penicillin does not work most of the time. Augmentin is a much better alternative. I would try calling the dr. who gave you the penicillin and explaining to him that it had not worked and ask him for at least a ten day trial of augmentin. You should know after about a week if the augmentin is working.. If you see improvements on augmentin then call him back and ask for more and let him know of the improvements you are seeing. Then if he won't give you the augmentin ask for another strep test and culture or even the strep blood test which will test his titters. Hopefully you can get him started on something until you get into a more experienced dr. Also, if you sign up for the pandas resource network they will e mail you a list of treating doctors in each state. Most of those should take insurance. We are pretty new to all of this as well so I don't have too much to offer you but that is where I have started. Good luck.

Maybe try asking for a different antibiotic that can be given daily in the morning before school. I don't know about azyth. as a prophylactic because of its long half-life. My son is back at school and taking a daily keflex. I know nothing is guaranteed to prevent re-infection but I do feel better about him taking something daily until he hits puberty. I am also prepared to start full strength abx. the second I suspect a flare. Also I have been giving Motrin once daily before school. We are all trying to figure this out.

It seems to me like the B vitamins play an important role in overall health. Good article.

I live in Mississippi, and believe me I was not expecting there to be any docs on the list from Mississippi, I thought maybe new Orleans or Birmingham Alabama, but I was surprised that there were actually five names listed on the list from here. I decided to start with the ped. Neurologist in Jackson. We will see how it goes. Are you close enough to any big cities that does have a dr. Listed?

I live in Mississippi, and believe me I was not expecting there to be any docs on the list from Mississippi, I thought maybe new Orleans or Birmingham Alabama, but I was surprised that there were actually five names listed on the list from here. I decided to start with the ped. Neurologist in Jackson. We will see how it goes. Are you close enough to any big cities that does have a dr. Listed?

What state do you live in? I signed up for the pandas resource network and requested their list of treating doctors, they e mailed it to me the next day and I called to get an appt. with one of the dr's. on their list. She is not one of the top pandas specialists and she still had a three month wait but at least she is about 90 miles from me and takes insurance. We are hoping for the best.

So I am confused, are you saying that folic acid and Pepcid would compliment each other or that they would counteract each other. I can't imagine that taking both of these supplements together would do any harm, but if I am wrong please let me know.

I would still try the ibeuprofin at least two doses a day, because the hope is that it will help with her appetite and she will begin to eat. It is good that you at least have a prescription for two weeks a month but if you are planning on sending her back to school I would be worried about the other two weeks a month that she would not be "protected". As you know strep is rampant in elementary schools especially this time of year. I have also wondered about the genetic aspect of this illness. I know as pandas moms we are all on such high "alert" as watching and waiting for any new personality changes, etc.... I would just keep an eye on your son and if you feel he needs to be tested by all means you could do a strep culture or blood work, but it could also just be more of those typical hormonal changes going on. My son always gets tics when he is having an episode so that is my first indication of recent exposure. It sounds like you are on the right track. Keep us posted.

Thank you for posting... I did a simple test today with giving my son few pieces of chocolate and within 5min noticed an increase in pandas symptoms. I will definitely store that away in the back of my mind from now on.

Great suggestion.... Thanks I will use google. It has been very frustrating for me as well.

Thanks, I just wondered if I was doing something wrong.. I have not had much success using the search engine on this forum. Someone else said they had success with folic acid so I may look into that as well.

Do you supplement with magnesium? If so how much? My ds weighs 95 lbs. I bought some sunflower seeds and have been encouraging him to eat them because they are high in mag. But can't get him to eat them regularly. Go figure. He says he likes them.

Can anybody tell me the best way to search this forum? When I try to enter words like tic, or lab work, or many other small words it will not let me search saying the words must be longer. Am i doing something wrong or is there a better way to search? What I have been trying to find out is if any of you have had any success with tic tamer or any of the other natural tic relief formulas. My ds had tics which went away while on full dose antibiotics now he is just taking prophylactic daily keflex and the tics seem to be returning at a milder rate. Just trying to figure out what to do until we have our apt. With a specialist in July. The pedi who originally diagnosed my son has pretty much written us off at this point and just wants to pass us off to the specialist. I would like to read past posts about tic relief but can't search it. Thanks for your help.

I think you should stick with the aug. my ds was on it and improved about 50% initially, but the dose was too low. Then after we found the correct dose for about the first five days on the higher dose he seemed to be getting worse, but then day 6-7 saw some improvement, days 8-9 saw even more improvement etc.... I know it is hard but try to be patient. I don't know your sons weight but try to make sure the doseage is high enough to get the job done we wasted about two weeks on a dose that was not adequate.

On second thought keep it up as long as you can. Again it is so good to hear good news.

I did that, I had the 875 and cut it in half and did two times a day.

Great news! Maybe after the 30 days runs out they could give you a smaller doseage to try and slowly decrease the the zith for another 30 days. So glad you have found some relief.

She is a very good friend and I feel comfortable talking to her about it because we talk about a lot. She tells me about her frustrations. I want to help her but I also don't want to cost her extra expense of more doctors unless she can really be helped. In the past she talked to psychiatrist about add/ADHD issues, urologist about urinary issues, and teachers about math and handwriting issues. Etc..... I just have a feeling now it is all related. It Will help to have other posts to show her as our two boys are both very different with very different symptoms. It would be hard for me to say that they both have the same underlying cause of it all. Thank you I will share this with her.

My ds12 is I guess what you would call a classic pandas child ( if there is such a thing). He is has just recently contacted strep and experienced his third pandas episode of OCD and tics but has greatly improved with antibiotics. He is currently taking a daily keflex in hopes preventing another recurrence. He was pretty easy to diagnose as his symptoms came overnight and were directly linked to a strep infection. Here is my dilemma though, one of my best friends also has a 12 year old son who I am starting to suspect may have something else going on. She can't seem to find the answers even though she has consulted many doctors and specialists. I don't really know what to say to her because I don't want to lead her down a wrong path. Here is what is going on with her son. He has consistently wet the bed almost every night since birth with the exception of about one year when he was about 5-6 years old. When she figured he was finally trained. Then it came back and has continued he is now almost 12 years old. His mom seems to believe he is not getting a signal from his brain to wake him up during the night. He has been treated for add and ADHD. His handwriting is a total mess and he often gets words on his spelling tests wrong because his teacher can't read his hand-writing. Even though he knows how to spell the words. He struggles in math. And he also seems to withdraw (shut down) socially when something makes him upset. He does get pretty moody at times and does not want to talk to her about stuff. When he was smaller the family did not have medical insurance an so many times he would have a cough or a cold and they would just try and let the illness run its course. Unless it got pretty severe. The thing that makes me un-sure what to suggest to my friend is that he does not display any typical pandas symptoms such as OCD, he does not worry excessively- in fact he does not worry at all. And he does not display any verbal or motor tics. I know she would appreciate any advice I could give her as she is sooooo tired of washing and changing sheets on his bed daily. Until I learned about pandas I would have never guessed that all of these types of symptoms could be related in any way, but after reading so many of your stories it seems that they can all be related. She has already addressed these issues individually with a variety of doctors including urologists, pediatricians, psychologists, and family docs, but I am not sure if she has mentioned all of these issues as a whole. If you all have any advice for her I will let her read your responses. Thank you.

I was just wondering if the dr. Who ran the labs and suggested pandas has given you a prescription of any antibiotics at all just as a trial to see what if any improvements are noted. It would need to be a full strength dose as I have noted most pediatricians seem to start out on the low dose which in your case may not lead to any dramatic improvements. Maybe this would help you start to figure out how many of your sons behaviors are pandas related. This is so sad to see how many children are suffering due to a lack of knowledge in our medical communities. So glad you are on your way to finding answers.

Congrats, I really appreciate any suggestions and helpful ideas.. Just one question though. Did your dd tics subside with the frolic acid as well? You mentioned the anxiety but what about the tics? Because in my ds case the tics are causing quite a bit of extra anxiety in front of his friends. Thanks

You bring up a good point. I wish I had an explanation for you. Maybe someone else could reply their thoughts.