Missmom

Thanks tanna very appropriate.

Ok thanks for clarifying, no matter what the diagnosis, the child is always better off with their parents. I am so disgusted by these hospitals and social workers it makes me sick. If they were bad parents to begin with then why on earth would they be at a hospital seeking help for their daughter? The bad parents are the ones who don't bring their children in for care.

I would agree, try to convince your ped to stay on a full dose of augmentin until at least summer then try to taper. Spring is always our worst season around here. Looking back through my records my son use to get strep every spring.

Ok, think what you will about his politics, and we can all agree to disagree about that, but I just turned on my car radio today and caught a teaser about an upcoming interview on the Glenn beck show. I did not hear the girls name but Glenn is set to interview the father of a child that has been taken into state custody in Boston by child protective services. The father is fit to be tied. He says they are literally killing his daughter. The father is breaking his gag order for the first time in over a year because he is desperate to seek help for his daughter. He cannot sit there quietly and watch his daughter suffering any longer. God bless this family. Do any of you know anything about this interview? Is this the child with pandas who was taken away from her parents? I believe the interview is scheduled for Monday. I know others have posted about different rally's and things but I live in the south and can't possibly ever attend any such event. I know several pandas children have been taken away from their parents. This is out of control. I hope this interview can spark more outrage about this abuse of power.

Pik, did you have any other symptoms of pandas when you were in high school? I love to hear from adults who believe that they may have had pandas as children. Pandas is so relatively new that most of those adults probably never received any type of treatment. We know that although pandas is a relatively new diagnosis, it is certantly not new. I like to hear stories of how those adults "recovered" and how their lives are today. Do you remember having any sort of abx. Treatment as a teen?

It might not be the sugar or collision but perhaps the stress/excitement of the game situation. I have noticed my son go from no ticcing at all to constant ticcing starting an hour before game time. I have also noticed ticcing when he has a speech or presentation at school. I don't say anything about it and it will usually pass.

Our whole family had mono last year and throats looked gross. Also, it totally wiped us all out for three weeks. You would need to do the bloodwork for this because not sure if the rapid would still show up since this has been going on now for a while.

What abx. did they prescribe? What is the age and weight of your daughter? In my opinion amoxicillin is too weak of an antibiotic to be given to pandas kids ever. Augmentin is much better if she can tolerate penicillins. Again, for an active strep infection it should be a pretty high dose for her age and weight. I think most of the pandas experts agree that 30 to 60 days of this treatment dose is a good place to start. Once the active infection is gone then dose based on symptoms. If symptoms are gone and you are back to baseline then a prophylactic dose should be considered, especially when strep is spreading in the community.

I would think that it would be a good place to start. I really don't see how it could hurt anything as long as you get liver panels checked if you have a doctor who would prescribe this long term. I would give it at least a month to see if you notice any improvements. Did your symptoms recently appear, or have you been dealing with this since childhood? Do you remember any sort of sudden onset? Do you remember anything specific during your childhood that may have triggered this? Did your symptoms come and go? I am just curious if this started for you as an adult.m I am sure others will chime in, but I would definitely try the augmentin.

I have heard others discuss cellcept but don't know what it is? Is it a supplement?

Just a few more things that we avoid. Others may disagree, but over the last two years all of my research tells me to listen to my instincts and avoid these things. We avoid vaccinations, including flu shots especially flu mist, caffeine, Tylenol, singulair (my son was on this long term before pandas dx), chocolate.

I am always afraid to say when my son is doing well, because as sure as I do then we see a backslide once again. I know everyone's story is different, but I have been going through this almost two years now. I have read and researched so much that at times my brain has felt fried! Anyway, the stories that always fascinate me are the lightbulb stories of recovery. I know it is not typical, but there have been parents who say their children just wake up one day and all their symptoms are completely gone. Just like those of us that had an overnight onset, others have an overnight recovery. I cannot lie, I would just love to one day wake up and have it all be over.

Ha ha.... Pr40.. That would be MANDAS

Have you taken him to get another throat swab? Checked for fever? Asked him if he feels bad? I would think this latest flair would have to be the result of a new illness or virus. You may need a temporary change of abx. My son got a sinus infection while taking augmentin last year and started showing some symptoms. We went and got him switched to a z-pack for the sinus infection then put him back on the long term augmentin once the z-pack was finished. This took care of the symptoms. My son is still on augmentin and it will be two years this march. I hate it but feel it is necessary to prevent any more major setbacks.

Very interested to hear what you learn from these experts. Please keep us updated. Thanks.

I would suspect one of the two abx. before I would the probiotic. Also in case the doctor did not tell you be sure to give the probiotic at least two hours away from any abx. Are there any other symptoms of stomach flu. Like fever, diarreah, etc... I would definitely want my son on a good antibiotic with those results, unfortunately though it just may take a while to figure out what works best. Call the doctor if he continues to be nauseous.

I think it could be her tooth. Anytime my child goes to dentist or his gums bleed from flossing, etc it causes a flair. Usually only lasts a few days but he is on abx as well so that probably helps shorten the duration. If she is not already on abx, try get her some so that it will help the body fight any foreign bacteria that may be entering her bloodstream through the hole where the tooth is coming in.

Most gastro doctors won't treat c diff unless you show symptoms of c diff. I am surprised your son got that much flagyl without symptoms. If there is no diarreah I would not worry too much about it. Everyone carries a small amount of c diff in their intestines, it only becomes a problem if all the other good bacteria is killed off by antibiotics without probiotics. This allows the c diff to take over and cause problems. Most labs refuse to test solid stool. So as long as your son is not showing symptoms don't worry too much, just be sure to give probiotics daily.

Be thankful you have a doctor willing to prescribe the antibiotics. My son also has tics that started overnight. Looking back he had other little flairs but I assumed these things were nervous habits and they did subside after about two weeks. We have never had any other diagnosis other than pandas, but from all I have researched that is definitely a good possibility for your child. I think it is easy to label pandas children with autism, touretts, sensory disorders, ADHD, etc.... But, as many of the parents on this forum have found after treating all infections, and inflammation these children can live totally normal lives. You are in the right place and on the right track. Most of us have very different stories but we are all bound together trying to help our children. If you search this forum there is so much information hopefully you will find stories that give you hope and relieve your anxiety.

I don't know what infection I had but after 20 hours of labor I started running high fever with vomiting and shaking uncontrollably. They took me in for c-section and took my son in the neonatal ICU for observation after he was born. I don't know if they had to treat him at all with abx. I then went on iv abx. I did not nurse him with all the antibiotics in my system so he was formula fed. He had a bad case of strep when he was 13 months old and it lasted for a month, I believe that was when this truly started for him.

I am so happy for you that your son is doing better now and I hope you never have to go through any of this again. Just wanted to say though that what I have found with my son is that with each flair-up his symptoms worsen. The first few pandas episodes got 100% better after a 10 day course of abx and the symptoms were relatively mild or unrecognized. Now it seems that each sickness the symptoms get more severe. That is why many of our children take prophylactic antibiotics which help prevent future infections and therefore keep this all in check. You just never know what new symptoms the next episode might bring. You need to have a good doctor who understands this and is ready and willing to prescribe antibiotics the second your child starts to show symptoms of a flair. Even if your child is well right now I would keep talking to doctors about all of this and so if you ever see any symptoms again you have a plan in place. Looking back my son had a mild episode at age 8 a tiny bit worse at age 10 then at age 12 the worst one yet. Now he takes antibiotics as a preventative. I feel very blessed to have a great doctor who understands what needs to be done and is willing to help. Your son is definitely lucky to have you because you are really ahead of the game. Just remember to be happy that he is well, but also be prepared if things start to slide. Oh, and get on those waiting lists now while he is well so you are not desperately searching for help if this happens again.

I know it could backfire, but if maybe you ask him to make notes or if you make the notes initially. He needs to learn to keep all of the racing thoughts, worries, fears straight in his mind. I believe you when you say he does not even know the truth by the end of it all. The initial story should be confirmation to him. So even he does not think he is going crazy. My friend was married to a habitual liar. He convinced himself and everyone around him that they were crazy and not him. They are now going through an ugly divorce and he has been caught lying in court. The counselor has said that lying is one of the most difficult behaviors to correct, most counselors just don't even know where to begin. Again, my thoughts and prayers are with you.

I don't know how old your son is but maybe you could either have him write down these incidents or you could record him telling you what happened. That way you have it documented what his initial story was. It will keep him accountable to that story. The story cannot change in his mind because it is documented. If he tries to change the story tell him no, that is different from what the first story was. Let him know that the first story that he tells you is the only one you are going to believe and even if it is bad that it has to be the truth. As you said, by the end of it all maybe he does not even know the truth... This may help him not get confused about what he has told you. It should help him organize his thoughts. I am not sure if what I am trying to say is making much sense, but I know that lying can be one of the hardest things to control with kids. He really needs to be held to what he says so the lying does not become a habit.

I don't know about holding it for that long, but last year i was having cramps and loose stools but nothing terrible. I also was only going every couple of days and sometimes it was relatively normal looking. I thought it was irritable bowel. I went in for a colon scope and they tested for c diff.. Sure enough it was positive. After all I have read about c-diff I would never have suspected that as I never felt that bad. I guess mine was a pretty mild case. Anyway, I took flagyl and it got better in a couple of weeks. I think depending on each individuals gut I think it can be controlled and sometimes not recognized. I would ask his doctor to test for it. It is a pretty simple test and I can't imagine a doctor saying no. You just provide the stool sample. Wait until he has another incident and take that stool sample in. Often times they won't even run the test on solid stool. I sympathize with you and your family. Living with OCD is difficult for everyone in the household. I hope things improve.

Has anybody heard any updates about the Leroy girls. Are they recovering? I hate when the media hypes up certain things then never follows up on any of it. I really hope those girls are doing better.