colleenrn

I would think the ENT would want to take an xray of his sinuses and should be able to see the size of his adenoids.

I am so glad you can take your son home! Please let us know how he is doing when you get a chance. Colleen

I am so sorry for what they are putting you and your son through. I still think what they are telling you is not correct. What state do you live in? You do not put a 9 year old child in a NON padded locked room. If he was banging his head against the wall, he could have a head injury. It makes me sick that they let this go on for an hour. This is very dangerous. That should have never happened. It blows my mind that his physician did not have time for you yesterday. If they will not let you take him home today, I would call an attorney. I would find out who the Nurse manager is for the hospital and insist you talk with her/him this morning. Don't be above threatening to sue them. Maybe they will cave. I am so sorry this is going on. This should not be happening to our children and it infuriates me. It infuriates me as a mom and as a nurse. How dare a nurse tell a little boy she is "disappointed" in him for returning so soon. That is why she is working in a psychiatric hospital. Please let me know if there is anything I can do to help. You can PM me if you want. Take care and stay strong. He is your child and you have the rights, not the hospital. Colleen

That is just not true what they told you. He is your son, you checked him in there voluntarily, and you can check him out. You are his mother and you have that right. I know that there can be that "threat" of insurance paying or not with AMA's, but I have not seen that happen. I am not in any way trying to tell you what to do, I just feel they are giving you the run around b/c the doctor does want to deal with it tonight. It happens a lot. Colleen

One more thing. In Virginia, and I assume it is this way in most states, the ONLY way they can hold you against your will if is you are a danger to yourself or others, in which case they do a TDO (temporary detaining order) and a magistrate has to hear the evidence and then decide if they have enough reason to keep you. IMO, there is no way they can keep your son tonight.

I hope I catch you before you go! I am a registered nurse and worked in a psychiatric hospital for years, specifically with children and teens. What the nurse is telling you- that she can't contact the doctor, is a huge load of BS. A physician is on call 24 hours a day. You can and should insist he or she be paged and that you are not leaving the hospital until you talk to the physician. The head ache and rash could very well be from strep. Along with his increase in PANDAS symptoms, I am definitely thinking he has strep. My daughter had strep that penicillin never got rid of. No matter how long she was on it. If your son is not a danger to himself or others and you can deal with him safely at home, IMO, take him home tonight. If they won't let you take him home, sign him out AMA. He needs to start a different antibiotic at a higher dose asap. If need be, get Dr. K on the phone with the hosptital tonight. I am praying for you . Just be strong and demand what your son needs regardless of what anyone in that hospital says to you. Colleen

How much does your son weigh? Unless he is very light for a 9 year old, cephalexin at 250mg 3x/day is a lower dose. Is he still inpatient? If so, you can deal with his attending physician at the hospital and bypass Dr. K if you do not hear back from him. If you have to do so to get him on antibiotics today, tell the hospital that you just found out his close contacts recently were just diagnosed with strep and you want him on zithromax or high dose Augmentin today. Colleen

7upmom, 250mg of penicillin/day is a small dose. He could very well have strep while on that dose. The treatment dose for strep for an 80 child would be 300-600mg of penicillin given 3 times per day. If he has strep, his current dose will not get rid of the strep. Can you ask/request/then insist he be put on something else ? Colleen

MDMom, My kids are on Zithromax 250/day and when they are exposed to strep still have a flareup in PANDAS symptoms. When I know they have had prolonged exposure (slept in the same bed with cousins with strep- did not know cousins had strep at the time) I have increased my older kids (85 lb. and 120 lb.) to 500mg/day for 3-5 days. How much does Carter weigh? My sister's pediatrician puts her 65 lb. and 80 lb. children on 500 of Zith when they have strep and she is a very conservative physician. Also, when my children have strep, their rapid test rarely comes back positive. I have no faith left in rapids. I do them just to see if we can get a positive before waiting for the culture, but never rely on a negative rapid. Good luck with the next IVIG! Colleen

I am so sorry you and your family are going through this. It is so very hard. I read back over some of your old posts and did not see where he is on antibiotics. Is he on any right now? If not, I think it is completely warranted, given the severity of his behavior right now, to put him on either a high dose of Augmentin or on Zithromax. If he currently has strep, this may be why he is worsening. Can you also get themn to give him Ibuprofen? If he is 9 he could take 600mg evry 4-6 hours. Colleen

I recently got copies of all my children's lab results over the past several years in preparation for my 3rd child's ENT evaluation for possible T&A. I was shocked when I saw a lab result on my youngest child when he was 11 months old (he is now 3 1/2). My recollection was that he was very ill- high unexplained fever. We did a rapid strep which was negative. We also did a culture, which turned out negative. The physicain I saw that day was not my regular one. He wanted to do a urine culture just to rule out any infection in trying to find the cause of his high fever. I never heard back that there was any infection in his urine so I assumed (BIG mistake that I no longer make) I did not call to confirm this. It turns out that the urine culture came back positive for beta hemolytic group B strep (25,000 colonies). This is the same child that we have gotten 2 upper respiratory cultures that are positive for group B strep when I saw PANDAS symptoms. I also found an old lab result on my oldest child for a positive upper respiratory culture for group B strep and the physician who reviewed that finding wrote "do not treat this strep", so no one ever even let me know it was positive. I was GBS positive in all my pregnancies and also on 2 upper respiratory cultures during the same time my children had big flareups in their PANDAS symptoms. I am wondering if anyone has gotten any positive streps on urine? Any input would be greatly appreciated. Colleen

My two oldest children had a T&A, but as far as I know, nothing was cultured. The ENT that removed them has retired, but I do have a copy of their medical records. I will try to find them and see if they may have been cultured. I took my 3rd child to an ENT yesterday and she agrees he would benefit from a T&A. We will most likely schedule it is the next 2 months. She was not that knowledgable on PANDAS, but I don't really need her to be I guess. I will make sure his tonsils and adenoids are cultured. My BIG question is do I need my son on 10 days of Clindamycin prior to surgery or is the 250mg of Zithromax daily sufficient?? If anyone has any information on that I would greatly appreciate it! Colleen

Allison, I thought I would answer you based on my personal experience (BUT you better not tell my 13 year old daughter!!!) I was a PANDAS child/teen and I definitely drank my share of alcohol at times when I was a teenager. It never affected me any differently than it did my friends. That is just my 2 cents. With that said, I am having a small coronary just thinking about my daughter getting into any alcohol/drugs. I want my baby to stay my baby! Colleen

I truly feel that if NIMH would get around to updating their very out of date web site this may not be so much of a problem. I feel is is extremely unfortunate for the children that physicians seeking guidance look to the NIMH web site and see that antibiotics are not warranted. Colleen

I am also surprised they omitted IVIG, PEX, and steroids. Not really the complete picture. Colleen

EAMom, Sorry!!! Emptied! Colleen

If you have mono (EBV) and take Amoxicillin/penicillin you can break out in hives. I am not saying this is what is the case with people who have posted about rashes with amox/pen, but just wanted to throw that out there in case. My daughter developed hives while taking Augmentin when she was younger. She had been taking it for months without any problems, then bam- head to toe hives. We immediately stopped giving it and had her skin tested to see if she was allergic to it. The tests came back that she was NOT allergic to it. I just had a major "light bulb moment" as I am typing. Maybe the reason she developed hives after being on it for several months is b/c she was exposed to EBV, thus causing the rash reaction. I have always wondered if she had mono b/c she did go through a period of time when she was so exhausted. This was about 5 years ago. I wonder if we did EBV titers if it would indicate if she had it back then. Does anyone know? Thanks. Colleen

dd13 pitocin b/c doctor ruptured my membranes at 37 weeks without my permission or even telling me the second prior to rupturing them that she was about to do it (never went back to her again!) dd9 no meds at all- he was 11 days late dd7 no meds at all- he was 9 days late dd3 no meds at all- he was 7 days late I had IV antibiotics with all due to being GBS poisitive.

Treatment dose is 14mg/kg/day which would be 343mg/day for 54#, so close. Colleen

If you want to post her lab results I can help you figure them out. Colleen

Yes, even on daily abx they react when exposed to strep, especially if it is someone they are exposed to a lot. My 3 oldest do have PANDAS and I was still hoping my youngest would not, but this clinching it for me. I believe there is definitley a genetic component b/c I was a PANDAS child, my kids are, and two of my sister's kids are. Colleen

How much does Pixie weigh? If she is less than 50 lb., 300mg is a treatment dose. When my kids have had an active infection while on prophylactic antibiotics and we need to add 10 days of something else, we were told not to discontinue the prophylactic one, but to give both. I am wondering if anyone else has had that experience? Colleen

Your description of what his throat looks like, IMO, sounds 100% like strep. I would ask them to grow the cultre for a full 72 hours if the rapid comes back negative. It takes that long for some cultures to turn positive. If he has strep I would ask them to switch him to Zithromax. If the strep is intracellular, Zithromax is effective in reaching the strep. Colleen

OK, here is our history: I am 99.9% sure I was a PANDAS child. Of course, back in the 70's and 80's when I was going through this, we did not know about PANDAS, so having a T&A was never an option. I did get strep a lot and pneumonia 3 times. My husband had his tonsils out for frequent strep. I am not sure in the early 70's if they were removing the adenoids also. His mom passed away last year, so I can't ask her. Colleen

Hi. I am so sorry that you and your daughter are going through this. It is so hard. Why did they initially put her on penicillin? If it is PANDAS, and it certainly sounds like it could be, she would need a stronger antibiotic at this point b/c she may have had strep for a while and it may be intracellular, in which case, penicillin will not work. Has she had a strep culture done? If not, that is a place to begin. If they do a rapid test and it comes back negative, insist they do another swab and culture it out for 72 hours. If your physician is opposed to doing a throat culture (which they should not be given her symptoms) you could always tell them she has a bad sore throat and you want it done. If the culture comes back negative, given her symptoms and possibility of PANDAS, IMO a course of antibiotics (not amoxicillin or penicillin at this point) is fully warranted. If your physcian feels it isn't, you could tell him that the side effects of a course of antibiotics are far less serious than the side effects of the psychiatric medications she has been on. Is there any way you could get her put on Zithromax asap. How much does she weigh? Given her age, unless she is super tiny, she could really benefit from 500mg of Zithromax for 10 days, then you could bump her dose down. What other medications is she currently taking? The physical symptoms you described (joint pain and constant ear pain) are also consistent with PANDAS. You could also rule out mycoplasma pneumonia which can also cause these symptoms in children with PANDAS. Interestingly, ear pain can be a sign of mycoplasma pneumonia. Some infectious process, IMO, is definitely going on. You do not get ear pain and joint pain for months for no reason. What did your physcian say about the ear/joint pain? Dr. Rosario Trifiletti is a pediatric neurologist who may be able to further advise you. Also, Dr. K that someone mentioned in an earlier post may be helpful. Bottom line, IMO, is get a throat culture immediatley and go forom there. Colleen