colleenrn

A BIG Happy Mother's Day to a wonderful bunch of moms!!!!!!!!!!!!!!!!!!!!!!!!! We will prevail! We will find the help our beautiful children need and we won't stop until we do! Colleen

He has been on Omnicef the past 3 times b/c he had been on Zithromax so much and my dr said they had good results with omnicef. Now, given his symptoms the past 19-20 days, I am sure the omnicef never resolved the strep and he had a horrible strep rash while on it. He is now on Zith. I am not sure what I am doing at this point. I am so stressed. I would never dream of letting my older 3 kids not be on any antibiotic, but that is what I have been doing with him. I guess I was just thinking he is too young to put on prophylactic antibiotics, but I can't just keep letting him get strep. Now, my 9 yo and 13 yo, who are on zith, have a scarlatinaform rash on their backs and abd. Just found it today. Do you think it could just be a reaction to living in the house for weeks with someone who has strep (and he is 3 so he grabs their drinks, kisses them) or do they have strep? I have bumped them up to 500 and will keep them there for a while. This is too stressful. Thanks for listening. Colleen

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My son has a head to toe hivey looking rash now, as well as a perianal strep rash. Wondering if anyone can comment on his labs- just got them back and worried. HGis WBC was 5000 2 weeks ago and now is 8,800 CBC normal, BUT liver enzymes elevated AST 74 (normal is less than 40) ALT 101 (normal less than 40) CRP (C reactive protein is 0.3 (normal 0.0-0.5) ESR (sed rate) is 34 and Dr says normal is 0-20, but most parameters are 0-13 I was wondering if anyone has any thoughts for a vry worried mother. Wendy- I IM'd you. I appreciate talking to you last night. Before I brought up the possibility of Kawasaki disease, after my dr saw the rash, she was convinced it was an allergic reactioin to the Omnicef. He finished 10 days of Omnicef with last dose Wed. morning. Over the past 3 months he has been on omnicef with no problems. Has anyone's child had an allergic reaction to antibiotics, and if so, when would the rash get better? Rash has gootn much worse over the day. TIA. Colleen

OMG. It did a few days ago. Now it is rough and dry.

My 3 1/2 yer old finished his Omnicef for strep yesterday. He has had this rash for a few days, but now I am wondering if he still has strep. His culture came back negative, but I know he had strep b/c he started wetting the bed oput of the blue, behavior regressed, swollen lymph nodes in neck, and scarlatinoform rash al lover abd. He still has dilated pupils, but stopped wetting bed, lymph nodes significantly smaller, behavior a little better, and abd. rash gone. His bottom and under his scrotum is bright red, rough and dry. Two days ago he had significant skin peeling where it is red now. No changes in detergents/soaps/ etc... I also just discoverd a few minutes ago hive like itchy bumps all over his side. I have him in an Aveeno bath now. Any thoughts would be appreciated. TIA. Colleen

DPT is the old vaccine and should not ever be given anymore. The newer DTaP, the a stands for acellular, and is supposed to be less dangerous than the old Pertussis. Colleen

Vickie, I forget, has your son had IVIG? My sister lives in Ohio and wants to start figuring out how to pursue IVIG for her son who will be 12 this month. Is it really true that IVIG has to be done by age 13? Colleen

I was wondering if anyone has had IVIG in Ohio and if so, whose protocol did the doctor use? If they use Dr. K's or Dr T's protocol, do yo have to first do a phone consult? TIA. Colleen

Thank you so much for posting! You are a brave young person and I am so happy for you! Colleen

I believe the status of "carrier" to be misused by many physicians and will eventually be a thing of the past. IMO, if you carry strep, you have strep, it just may be assymptomatic strep. So many docs say the "carrier state is benign". In a PANDAS child it is never benign and I believe that to be true in non-PANDAS people too. I think that when docs see a person testing positive for strep yet there is an absence of "typical" strep symptoms, they label the person as a carrier when in reality they have strep and need to be treated. I would vote for switching to Zithromax given that your child may have had it for a while. Zithromax would be more efective. Colleen

You have goten some great advice already on here, but I just wanted to reiterate the need to do another throat culture and treat with something other than Amoxicillin due to the high failure rate of Amox with strep. You would not want to sit it out until June. I love the picture of your son. He is beautiful! Hang in there. I am thinking of you! Colleen

My oldest child, who by far has had the more severe PANDAS as compared to my other three children, received all her DPT vaccines. In 1996 when she was to receive her 2 month DPT, my physician talked me into giving her the old DPT rather than the DTaP, which was the recommeded at the time . The reccomendations at that time said to stop giving the DPT and use the new DTap. I was clueless as to the diference and trusted my DR at the time. My daughter literally screamed and cried and thrashed for the next day. I can't "prove" it was that, but I know it was. My next three children have not had it at all, nor will they. IMO, the DPT or DTap is one of the worst vaccines for children with PANDAS. I rank it up there with MMR and varicella (chicken pox). My three children who did not have the DPT, all had pertussis two years ago and did fine. I think dyptheria sounds scary and so does tetanus, but I thought the same about pertussis until we went through it. BTW, my fully vaccinated teenage daughter ALSO got pertussis when my 3 sons had it- GO figure... Bottom line is that you have to do what you think is right for your child/children. I just truly feel my daughter has suffered much more from PANDAS b/c of allthe vaccines she received. Colleen

I definitely see irritability as one of my children's main symptoms. Colleen

Melanie, Check with your physician first, but for Danny's weight, 250mg is not a big dose and he could take 500mg of Zithromax per day, even if just for a few weeks. IMO, upping the Zithromax is safer than upping the Klonopin. I agree it is not always safe to follow "Internet advice", however you are consulting with parents who live and breathe PANDAS everyday and unfortunately have far greater knowledge in treating it than most physicians practicing right now. Colleen

The NP showed me the labs when we were back in there on Monday and said it looked viral b/c his WBC were 5,000. I am still wondering, if he has strep which I believe he does, why was his wbc count only 5,000? Is it similiar to some PANDAS children who don't get elevated strep titers with strep? Colleen

The appointment went better than I thought it would (we were seeing someone we don't usually see). We did a 72 culture and she said "I'll give you antibiotics. What do you want?" I almost fell on the floor! On Monday he had all his "typical" symptoms of strep except for the rash he usually gets on his abdomen. As we were waiting for the NP to come in the room, my son laid down under the bright lights, and sure enough, thre was the rash- very faint, but there. Today is two days later and the rash is much more pronounced and his behavior is horrible. He is only 3 1/2, but he is usually laughing, playing, so happy. Today he is screaming, throwing fits, crying, etc.. My questionis, did it take until today for the antibodies to increase to a high enough level for me to start seeing these behaviors? It was a week ago today that he woke up with 103 temp. TIA!! Colleen

My 9 year old son had the H1N1 flu in October and 2 1/2 weeks later he had the seasonal flu. With both flus, my other children got it too, but not as severe as my son. Both times my son started showing symptoms of the flu, I immediately started dosing my other 3 kids with oscillococcinum and that is why I beleive they got a much milder case. I did see any flareup in their PANDAS symptoms. My kids, so far and fingers crossed, don't react that much to viruses. They have had pertussis and chicken pox in the past few years with no noticeable PANDAS flareup. They are also on zithromax daily, which modulates the immune system, so maybe that is why they don't react as much to viruses- not sure. Colleen

Yes, for 110 lb. child who gets exposed to strep, 2x/week zithromax is not enough. My 3 oldest are on daily zith and they weigh 55lb., 80 lb. and 125 lb. I can't even drop my 55 lb. son to anything lower than 250/day or he has a flareup (he is constantly exposed to strep at school- it is everywehere!). None of my kids would do well on only 2x/week zithromax, especially if they are around a lot of strep. Can you increase him to 500mg for maybe a week, then drop back down to 250/day? Point out to your dr how well he did on daily zithromax. Why is your daughter on much higher doses? Colleen

It is an autoimmune disorder triggered by strep and it causes any or all of these symptoms: tics, OCD, anxiety, behavioral problems, separation anxiety, night time difficulties, changes in urinary patterns, loss of math skills, poor handwriting, dialated pupils, anorexia,. I am sure I have left some out, but I would suggest going to the PANDAS section on this forum and reading some posts. Has he been sick recently? You could begin by getting a throat culture. Never rely on a negative rapid strep test. If it is negative, make sure they follow up with a 72 hour throat culture. Colleen

I was also wondering if you were treated for strep b/c of the positive rapid test? I hope so b/c a positive rapid is positive strep no matter what the culture comes back as. Sometimes the nurse swabs two swabs at the same time and the culture swab just may not have been a good sample. If you were not treated I would do that asap so you are not a source of exposure. It also doesn't matter if your strep titers were normal, that sometimes happens. Have you had everyone in the house cultured (72 hour culture). If not, I would do that also. Colleen

IMO they could react to just being around strep, but I would take the very cautious position it it were my children and increase the antibiotics, even if just for 2 weeks. I want to make sure I have this right. Your 10 year old (Jordan) is on how much Zithromax 2x/week? Did you see a big improvement when he was on zithromax daily for 3 weeks? I would definitely increase his zithromax back to daily. How much does he weigh? If he is over about 70 # you may want to consider giving 500mg to begin. He could have strep with taking zith only 2x/week. Your 7 year old (Gabrielle) is on how much zithromax per day and what is her weight? Colleen

I would begin with either a high dose of Augmentin or zithromax. There are a lot of parents on here with children on both that may be able to help. Three of my children are on 250mg of zithromax per day and have been for 18 months. I like zithromax b/c it has a very long half life so it remains in the body for longer and you don't have to give it at exactly the same times everyday like you do with augmentin. Zithromax also has anti-inflammatory properties (helps the brain inflammation), it is an immune modulator so it helps with autoimmune disorders like PANDAS and it can reach the strep if it is intracellular. Sometimes augmentin is not effective with intracellular strep. Vickie just posted some good links to good info too. Good luck. Colleen

Hi. I just wanted to make sure that you are aware of PANDAS and have ruled that out first. My children's first PANDAS episodes were tics. Colleen

I am wondering if anyone's child has ever had a CBC (complete blood count) done when their child has strep? If so, were the WBC elevated or normal? OR did it stay normal like sometimes happens with strep titers? TIA. Colleen