Missmom

So glad you found this forum and that the lightbulb went off. I was reading an article in the paper one day and there was an article about another pandas child and that was my lightbulb moment. I felt like I could have written that article myself. I was lucky. My pediatrician was hesitant and had never treated pandas before but was willing to consult with another doctor who had and we began antibiotic treatment immediately. After infection was treated we got prophylactic treatment until we were able to see our neurologist. My son now has long term abx treatment and is doing well. First of all you should request augmentin instead of amox. I am not sure why it is so much more effective but it really is. Also Zithromax is another good one but definitely more than just a five day z pack. I don't know your child's age but just be very cautious in giving vaccines. It is a tough decision but in some children it can make pandas worse. We now stay away from all vaccines. I will only give a vaccine if it is absolutely necessary like tetnus or something if my child were to get cut. If you are from west Virginia be sure to check out the laws in your state regarding vaccine exemptions. I think WV is like Mississippi (where I am from) in that the only school exemptions given are medical exemptions by doctors. I also have eliminated caffeine in my sons diet as that can sometimes elevate his tics. There are plenty of lists out there about pandas friendly doctors. Try to get into see one of them as soon as you can. Wishing you the best of luck and welcome to the forum.

Thanks my throat is feeling better now. Good to know for future.

My son with pandas also worries constantly, even during the times when he is mostly symptom free, however when he flairs the worrying climbs to another whole level. It also hinders sleep. He also tics when he is sick or exposed. A lot of sore throats. My son takes augmentin and it keeps his tics away. It sounds like you are on the ball and ahead of the game as far as pandas goes. Get the labs run, but those numbers don't always rule out pandas.

I have noticed several posts where your children take bactrim as part of your protocol. Is that for strep or Lyme.... Just curious, I am taking Bactrim DS for a UTI, but now my throat is a little sore today. I don't know if it is the beginning of strep or just sinus drainage, but don't want to risk being too close to son anyway. I was just wondering if the bactrim DS would prevent strep at all. I know it is not listed as a preferred drug for strep but has it helped any of you. Thanks

I brought this topic up last week because I thought I remembered reading that Tylenol has an effect on the bbb (blood brain barrier). I know I find myself making an effort to give ibeuprofin as well instead of Tylenol because of something I read about a year ago. I just don't want to chance anything anymore. If anybody knows how Tylenol affects the bbb please chime in. Thank you.

Does Motrin help at all?

Thanks md mom, great article. I also gave my children Tylenol after childhood vaccinations which was reccomended by the pediatrician...uggggg! Anyway, all we can do is move forward from here. I have been avoiding Tylenol with my son as much as possible and will continue to do so. I just have not seen any postings on this topic in a long time and just wondered what the implications are when giving Tylenol. Sometimes at the school they like to give Tylenol if child has a fever or headache.

Can someone please remind me about why pandas kids should avoid Tylenol if at all possible and take ibeuprofin. The problem is that almost all of the over the counter cough and cold type medicines have Tylenol in them not ibeuprofin. Should I be concerned about giving these multi symptom meds and break it down and just give Robitussin for cough and something else for congestion. I remember reading a thread about Tylenol but don't remember details. Anyone have any new info. Thanks

Knowing what I know now this is probably just the beginning of pandas. Looking back my sons first couple of episodes were mild tics only which went away within about a month or so and I am sure it was related to an illness of some type and was treated with abx. The problem was I did not know enough to link it all together. I did not even know what my son was doing was a tic. I assumed nervous habit or eye irritation. Looking back I know better. He was also younger at the time. Also some of the other pandas symptoms can be easily ignored or missed in a child so young. Your friends child may fully recover from this and never again get another strep infection and may be fine. She should just be aware that as he gets older each subsequent infection may bring about more complex symptoms. After reading this forum for a couple of years now, i know that many of us on here most likely missed our children's initial pandas episodes. It was not until it got more severe that we were like "what the heck".... So that being said, sounds like your friend is way ahead of the game. I think as long as she can treat any strep or other infection immediately and aggressively her son will probably be fine.

Not really a flair, but my sons tics increase with stress. They can be almost non-existent for weeks then when he has a speech or something he is nervous about he tics.... Since school starting coincides with fall allergies, have you considered it may be allergies causing the flair and not stress. Just curious.

I would give the abx anyway and finish it. As long as your daughter is not allergic to pennecillin then it won't hurt her. It will give you something to go on. Look for improvements in tics but also improvements in just her general personality and demeanor. You may notice just slight improvements but it may be enough to know you are on to something. In kids OCD can take on many forms. It is not just the textbook OCD that you might think of where a person is very neat/clean, etc.... It can be simple things like your child saying mom..... Mom..... Just to be saying it. It can be touching things, smelling things, etc.... If you have time google kids and ocd.. You might be suprised at what you may have thought was just quirky behavior was ocd. I know i was suprised. Tics can sometimes be compulsions or OCD, it is just hard to know sometimes. My son also started with tics, worry, anxiety, and mild OCD. All were manageable but got so much better with just a trial of abx. We now see a great neurologist and have him on augmentin. I feel like I can call this doctor at any time and she would help me. I know tics are awful, not because it bothers the child but also because you worry about other kids making fun of the tics. Best of luck. Oh and also I just wanted to say my son had two negative throat swabs and a negative culture, but I convinced the pediatrician to run the bloodwork( he was very skeptical) he only ran it because I insisted and begged. Sure enough bloodwork came back positive... He was shocked and although he had never treated a pandas kid before he did diagnose my son and referred us to a neurologist who got us on our treatment plan. You have to be strong with these doctors and advocate for your child. If I had not gotten that bloodwork done I can't imagine how my son would be now. The pedi would have just sent us out the door with a diagnosis of transient tics. Hope you find answers too.

What part of the country are you in? I had a great work from home job with a very legitimate company in Atlanta. If you are in a big city pm me and I can maybe give you a few suggestions.

She may be just experiencing some hormonal changes. I see you posted that she is only nine years old so it may not be menstral just yet but hopefully just some type of growth changes. My dd who is also nine and non-pandas also has those kinds of weeks but so far it has not been anything to worry about. Fingers crossed for you.

Only happened once to my dd and it was a unitary tract infection. It took twenty days on bactrim to clear the infection.

When my son was that age he liked the magic tree house series. I remember reading some of those with him and I don't remember specifically any vomit scenes or any gum scenes. Stay away from the wimpy kid series as those are full of adolescent boy type humor.... I don't know what reading level your boy is on but maybe if he is a little above the magic tree house level, I also remember my son liked the Theodore Boone kid lawyer series by John Grisham. Hope this helps.

Could you get them to try a prescription of Zithromax. Long term if possible. My son uses augmentin, but if he were allergic to amoxicillin I would want to try zith next. I think it works well for a lot of pandas kids.

Yes, it is definitely a possibility. Although pandas/pans are relatively new diagnosises(sp?). Strep has been around for ages and none of these symptoms are new. It has only been in the last 20 years or so that research has been done linking all of it to strep and an autoimmune reaction to strep and other illness. I hope you find some answers that you are seeking through the bloodwork that you are having done, however don't be discouraged if your tests come back negative for strep. You have been dealing with this for a long time and I am sure your body has adjusted to a lot of it over the years. Most of us here are constantly trying to learn more and offer advice/support for others in the same situation. If you have children there has been a lot of discussion on these boards indicating a genetic link as well, so you may want to check that out so you can be aware of some of the symptoms in children and if you see any indication get prompt treatment for your children. It seems those who start treatment fairly quickly see results more quickly. I know others adults will chime in and hopefully point you in the right direction. Good luck.

I know what you mean I am 42 and my face feels like I am 16 some days. Ha ha. Thanks.

Thank you, I was wondering if it was just a standard warning just there to cover themselfs legally. I really appreciate your quick response.

Ok, my ds13 has been doing pretty well. I even stopped all abx for about six weeks over summer and he remained at about 98 %.. Yay.... However, there have been a few documented cases of strep at his school and I noticed his tics starting up mildly again so I started him back on his augmentin a few days ago. My son had his annual dermatology appointment today and our dermatologist wants him to start with some clindamycin cream for some pimples he has on his forehead and chin. I don't know how this will react with his augmentin. Also, I am confused about the doseage on this type of cream. How do you determine how much to use and how much of the antibiotic is getting into his system? The label just says to apply to affected areas twice daily. The label mentions c-diff as a possible side effect. Just wondering how this type of cream would get into digestive tract and cause c-diff. Should I really be concerned or am I over-reacting about nothing? I did tell the dermatologist he takes augmentin daily. He said he could also prescribe minocycline if the cream does not help. Anybody else use this cream? Thanks

It sounds to me like dd25 has something going on. I would ask her to go to any clinic and get them to run a strep rapid and culture even though she has no symptoms. I think if she explains that she thinks she may be a carrier and this is affecting others around her that they would at least be willing to run those simple labs. If she tests or cultures positive then they will start her on abx and hopefully you will see improvements in your dd11. I don't know why they just did not do this when they ran the bloodwork.

I have not read all the comments so I apologize if this has already been mentioned but I was prescribed acid reflux meds due to a long lasting sore throat. I can't remember which one because I never filled the prescription. I started researching the side effects before taking it and realized the acid reflux meds could actually cause c-diff as a side effect. I had also had c-diff last Christmas and did not want to risk a reoccurrence so I never got it filled. Flagyl is one of the worst abx. I have ever taken so I did not want to go there again. If I were you I would keep the appointment for the tonsillectomy. Hope you feel better soon.

Just remember to take probiotics at least two hours apart from antibiotics to protect your gut. Many of our children are on long term antibiotics and do fine with it as long as we give probiotics and check liver function periodically.

I also am no expert, but I have a theory that some bacteria can hide inside of the biofilms that the body makes naturally as a defense mechanism. My thoughts are that if an active infection is living inside a biofilm, it may not show up on any sort of culture or rapid test but it is still there reaking havoc on our child's immune system causing a constant flair of child's symptoms. So as time goes by and the long term abx slowly break through the biofilms the bacteria is then released into the system and killed off by the antibiotics at a slower than normal rate. Some children who have had their tonsils removed and cultured have found a lot of biofilms and hidden nasty infections. Also, my sons symptoms have gotten worse at times when he has taken a biofilm buster such as mucinex or Robitussin. I also think that some antibiotics have an antiinflamitory component in them thereby reducing brain inflammation and reducing symptoms over time. Again, I am no expert but just wanted to throw that out there for others to comment.

Doesn't sound like a tic to me but maybe joint pain like you said. Have you asked if she is having any pain. Also could check for vaginal yeast or maybe UTI.... Antibiotics can cause yeast infections. I remember the last time I had a UTI, I was so uncomfortable it probably looked to others as if I was walking funny. I guess it could be a tic, but when my son has a tic it will happen randomly throughout the day and it will intensify during times of stress.