JoyBop

Good suggestions. I have a kindle. The great thing about that is you can do a word search and see if certain words are there. Also he adores electronics so that just might solve two problems! He might be more inclined to read that way. His teacher sent home 3 books for me to loon through. I think if I can get him to read one while book without incident we will be in a better place.

Yes. She was on high dose Keflex the ten days leading up to surgery, got IV abx in the hospital, and will remain on preventative dose long term. Knock on wood that it continues!

My dd had her tonsils and adenoids out 2.5 weeks ago. She had sleep apnea and chronically enlflamed tonsils. All I can say is WOW !! Her behavior has dramatically improved! I haven't seen this sweet child in over a year! She's only four and was able to articulate the difference herself. She hasn't stopped smiling since the pain subsided. She said to me , "mamma, my bad brain is gone!" (Whenever her behavior was out of control shed say her bad brain was making her do it/ocd) All signs of anxiety and OCD are entirely gone. Her vocal tics have decreased significantly but I haven't decided yet if they are still present. She has good reason to clear her throat with the scarring back there. We go on Wednesday for follow up and we should have the results of her culture. I wonder how much of her improvement is from finally getting a high quality sleep and how much was from a hidden infection. FYI I was shocked to find she had apnea as she was a quiet sleeper. She would wake a few times a night. The ENT ordered the sleep study just looking for a good reason to pull those nasty tonsils out. Its been so miraculous that were sending DS for a sleep study at the end of the month. He has sleep issue but tonsils are tiny. Its worth a shot! I think his adenoids are enlarged as he can't breath through is nose. Will keep you posted but so far so good!!

I just got on our patient portal at the hospital where we see all of the great PANDAS specialists. Under recommendations it says "due for flu vaccine". I can't tell if Dr G put it there as a recommendation for us or if this automatically appears in everyone's record as part if a public health initiative. In any case, we have flow up next month and I will ask Dr G myself. I wouldn't get the vaccinations otherwise. In the meantime the rest of my family will get vaccinated. DH and I work in the healthcare industry and although we aren't required by law, it is highly recommended and we do get the shots due to the high risk of our work place.

I would not assume that the OCD is not immune related if it didn't dissapear with steroids. The fact that she got better with them is plenty if evidence. It can take a long time for he OCD to just go away. The more connections that are made in the brain the more it changes the brain and how a person behaves and processes things. When someone who has had OCD for a period of time, its going to take more than a short dose if steroids to see the end of it. As far as SSRIs everyone person is different. Ds8 is on Zoloft and while it doesn't make the OCD go away, it does take the edge off so that we can try to work on his coping strategies. He has not gained any weight on these meds but again, every child is different. If your doc is offering a solution, I would be inclined to try it. You can always stop taking it if it doesn't give the best results. I hope you are getting the answers and help you need. Glad to hear there has been good progress.

The bottom line is, you need to find a doctor that knows how to deal with PANDAS. There may be a bit of a wait to get in once you find one, so best to start looking. My kids did get some improvement after about 10 days of abx but 14 will not do the trick, in my opinion. My son also takes meds for anxiety and OCD and he can not be without them, so every child is different. He was suicidal on Prozac but responds very well to Zoloft. It takes the edge off of his incessant chewing on his hands and toes and makes his life just a bit easier.

Miss mom to answer your question he tested at a fourth grade reading level last year but has serious adhd and is a bit if an underachiever at the moment. Magic treehouse would most likely be perfect but he won't read them bc he said all his friends read them in kindergarten or 1st grade. The self conscious bug is wreaking havoc. He read all the whimsy kid books last year pre pandas. Now that you mention it, that could be where the gum phobia came from. Isnt there a big gum story line in that ?

Thanks so much for the suggestions! I will have to look in to those resources. Many great ideas! We are in the midst of ERP and it isn't going well. Its a long story but our therapist, who was great, after only 3 sessions has to take leave to take care of his sick wife. We were referred to a partner who refused to work with my child. The. Out local psychiatrist took over CBT and ERP but she just had a baby. We were left to go it alone. Now we are listening to one second audio clips of vomit sounds and it has totally traumatized him and made of worse. There are no others that do CBT for kids in our area. However I now have the opportunity to work with a very well known therapist who worked with dr G for 20 years and dr g just put me in touch with her. She's willing to come to our house!! But she doesn't take any insurance and is $175 per session. Tying to swallow that one and hoping that our insurance will make an exception and reimburse us. Until then wed best stay clear of stories with boy humor, as you so eloquently called it. Thanks again for the many suggestions!

Only here could I post this question. DS 8 in third grade has OCD and fear of vomit, diarrhea, chewing gum and anyone even saying they feel nauseous. Here's our problem...he is now developing a fear if reading bc all the books he has enjoyed reading contain scenes of someone throwing up or getting gum stuck in their feet. Virtually any book starring young kids have a vomit scene. Does anyone else have this problem? Can anyone recommend good reading choices or a way to deal with this? He's getting board of all the animal books. At home he's been reading baby books to his little sister but the. Is afraid to write the. In his reading log for fear of embarrassment. Great, something else to obsess over....help

Omg brilliant article!!! Thank you for finding this. This is the same article I was looking for from one of my previous posts. I couldn't figure out where I saw that info a out catching it within the first 30 days gives you the best chances of completely irradiating it. I'm bookmarking this one for sure!!!

Well I suppose that if the majority of people got the flu vaccine, the idea would be that it wouldn't be as rampant, so long as it was an effective vaccine to begin with. Its like MMR. At one time measles were completely irradiated bc everyone got vaccinated and now we are seeing deadly cases of it again. Of course, its a free country and we all get to choose what's best for our own children and I'm not implying we should all vaccinate. All I'm saying us I do understand where the medias message is coming from, not that I agree with it.

Is everyone saying their problems started when theirs kids got vaccinated? Or when they contracted h1n1? Sorry, feeling airflow brain dead today. My dd was born in 09. Ill check DS medical records to see but I'm fairly sure he did get it. Interesting connection!

My sons story is almost identical to yours, so much so, that it gives me the chills. Only we have had positive strep tests that have made it easier to confirm. My son had mild obsessive thoughts and anxiety since 2010. It was there but it didn't ruin anything for him and he managed just fine. Then after Christmas time he had 5 says of fevers with no sore throat or any symptoms. We finally took him to the dr and he tested positive. He was treated with 5 days of Zith and we thought that was that. Then 5 days later pandas struck and he had the exact same symptoms you mention with the ADHD, hyperactivity, trouble at school, ect. Looking back we realized that he had his first documented strep in 2010. I am a believer that pandas can start off slowly and get significantly worse with each exacerbation. Looking back I can see it so clearly. But as it was unfolding it was at first, just kid quirkiness. Then it was just strange behavior. Then it was like being hit with a title wave. There are those that do not have documented strep with pandas. There are also those that have PANS from Lyme or mycoplasma. You really need to be looking in those directions. I second the idea to see a pandas specialist, even if you have to travel. But sounds like you have a gem of a doctor treating you now. Just look for other causes, it may not be strep at all.

Chrissy, thanks for the eloquent answer. I will read those articles. Great information!!! So I'm getting the message that no one here vaccinates. I have some decisions to make!

Who here gives the flu vaccine to their PANDAS kids? Im on the fence on this one. On one hand, I want to protect them from getting sick if I can. But on the other hand, Im afraid the vaccine is going to set off an auto immune reaction. Who gives the vaccine? Has anyone had a bad experience causing a PANDAS flare? In the past, I have given it to my whole family and none of us got the flu. But I do think my daughters vocal tics began right around that time.

We used the "picky one" and it was expensive but a life saver after we tried everything else. Spent more on all the lots that failed. See my previous comment. Even the pros that come our to your house don't give a magic cure. You still have to follow a rigorous plan or they come right back in full force in a matter of weeks. Seems licw is always rampant in September. Tis the season?

Oh have I been there done that!! 2 summers are ago all 6 ofus had it and it was a nightmare! After spending way too much money on all kinds of shampoos and insecticides I finally broke down and called a professional lice picker. (Gasp) she was a lifesaver!! I will never buy a lice kit again. I can email you the calendar she gave me if you pm me. She gave me all the directions and a calendar of what to do on which nights. After a while month of accomplishing nothing, she ride our lives if lice in a matter if 10 days. For starters, use either olive oil or a cheap conditioner and thoroughly coat the head. She used a spray olive oil from stop n shop but time me she uses conditioner in her own home. Put a shower cap on and leave on for 8 hours. This immobilizes and eventually suffocates the live lice. They're the easy part. The hard part is the eggs, or knits. You MUST but a high quality metal lice comb. We have the lice meister. The plastic ones that come with kits are useless. The good ones cost $15 or so but are worth their weight in gold Next comb out the entire head. You will comb everyday, on dry hair for a week or so after. You wash all the bedding and throw a sheet over the couch or wherever kids sit. Every night when they go to bed toas the sheets into high heat dryer. I can give you more details if you need but please know that the lice are now immune to our pesticides. Its not worth making our kids sick. I don't envy you! Happy combing.

I think Beth Mallonys reason for tapering off gently was to trial going off the abx in a more gentle way, preventing a major crash. She said she would taper Sammy off slowly to see how he responded because stopping cold turkey was unbearable if he was not going to tolerate going off it. As far as growing resistance to an abx, I would think you would have a better chance by not going off it completely rather than stopping and going back on later. But I only heard if this technique in PANDAS radio and have not had a doc prescribe in this manner. I just thought it would be an interesting and potentially helpful idea to pass on. You can listen to the podcast. I believe it was the first episode of Marcel Cairos first episode. She was very inspiring!

By the way here's a great articak that addresses post nasal drip http://www.entnet.org/healthinformation/postnasaldrip.cfmy thought is this ... If it is truly post nasal drip that is causing your tonsilitis ) simply swelling of the tonsils) you will not be solving the overall problem by just removing your tonsils. True, some of your suffering will be minimized, but the post nasal drip will continue to eat away at the back of your throat.

Unfortunately, the science behind allergies hasn't progressed much over the years. Many times you will never find the source if the allergic reaction if it iisn't an IgE response. My child suffered from life threatening non IgE mediated allergies. We were fortunate that we were able to figure them out through an elimination diet and there were no environmental allergies. However, symptoms that affect the respiratory system most often ARE IgE mediated. If it were me, I would continue to try to figure out if there is an environmental or food allergy at play. You can do blood work, skin prick and patch testing to evaluate. If you really want to be sure its reflux you could get a PH Probe test where they can actually measure the amount of acidity and reflux in your system. That way you would know for sure what was causing your symptoms and you would have a better idea if how to treat. Best of luck with your tonsillectomy.

Now it sounds more like post nasal drip irritating your throat. I thought initially you said it was more from reflux. If reflux meds didn't help then its probably coming from somewhere else. Are you having your tonsils taken out? If so I recommend you find a way to control the post nasal drip first. Words can not describe the excruciating pain my DS is in. We are on day 9 post tonsillectomy. If she had post nasal drip it would be like pouring acid in here open wounds. Have you seem an allergist? It could be an environmental allerergy or food related. Have abx helped? I'm no expert but the only association I know of with the throat and PANDAS is strep. However, if you are on abx its difficult to get a positive culture. Sorry I can't be of more help.

That's not surprising. Foods like potato chips and cereal also go by weight not volume. As long as the manufacturers seal was on it I wouldn't worry. Either a foil seal on the inside or the plastic wrapping on the outside is proof it wasnt tampered with.

I think if its a legitimate experienced person its certainly worth a try!

Did you count the tablets in the bottles and compare that the bottle says it has in it? There is often empty space in bottles.

Wait, wait, wait!!! Did you say your reflux is better? First, thats awesome! Secondly, I have two theories. One is that perhaps the Pepcid is starting to work. My other theory goes back to H. Pylori. Multiple abx are used, but one of them in vancomycin. Have you done the H. Pylori test yet?