vermontmoms

My son is on several meds but I wanted to know if anyone's kids started having hives as a result of prolonged antibiotic use? My son has been on zithro since May and is now on Omnicef for 2wks together with the zithro. Yesterday after his zithro dose he started getting hives. We gave benedryl and oatmeal baths and he did much better last night. This morning I gave him zithro again and the hives are starting to get really noticeable. Has this happened to anyone? We called the doc and are waiting to hear but was just curious if this was a typical reaction for some. Thanks, Jen

Our son has been having arm tremors for two and a half weeks and we are getting very concerned. This is not like any tic that he has ever had. To me it is not a tic it is a tremor. I have made a video and posted it here: http://www.youtube.com/watch?v=ktsFiyL7QYA Please let me know if your child has had something similar. If they have, what did it mean and what did you do for them? How do you know if your child is having mini seizures? We have never had a CT or an EEG done on our son and none of our 3 pediatric neurologists ever suggested that we have one. We are ready to demand one. Can our Ped order a CT or an EEG or do we have to get one ordered through a ped neuro? Thanks for your help!! Jen Ps. In the video you will see his muscle in his arm twitching and then you will see his normal hand tremor towards the end of the video. He has this tremor more in his right hand but can have the tremor in both hands.

Yes he always has a full stomach for both antibiotics. One is after breakfast one is after dinner. Thanks!

Well he is doing better so far he hasn't thrown up again after we made changes. The script was written for two smaller doses AM and PM we are now combining both doses into one larger single dose before bed and giving the zithro in the AM. So far it is working.... Keeping fingers crossed!

Please don't worry about her tics in kindergarten. Just talk with the teacher and the nurse so they kmow whats going on ahead of time. My son ticced like a champ in kindy and 1st and no one said anything. The other kids didn't notice at all. My twins are in 2nd now and my one still has significant tics. He has almost finished 1 week and so far so good... The teacher is aware of his tics and why they happen. We also gave her strategies for coping with his tics. We will see how this yr goes as we are at a new school so it is a major learning curve for the school. That said our kindy and first grd teachers were awesome!!! Good luck! Jen

He had the zithro at 6pm and the omnicef at 8pm then he had the omnicef next AM at 8ish. He threw up at 10:30 at school after recess. I took him to the peds office at 11am; she said that the double dose can cause nausea. She also said to give him both omnicef doses at night and the zithro in the AM. We are going to try that tonight and see what happens. If he gets nausea and vomits tomorrow she recommended we switch him off the omnicef. Now about a bug... I really don't think he got a bug as he was fine before and after. I think if anything he could have been overheated from recess or dehydrated. Thanks... I guess we will just wait and see! Jen

Has anyone's kids reacted to zithro and omnicef antibiotic combination? We have been on zithro since May and just added Omnicef/Cefdinir to my son's antibiotic protocol. He has had two doses and yesterday threw up 3 times after the second dose. Has anyone else had this reaction? His stools are normal but he has had nausea. Any insight would be great! Jen

My boys have been tested and both came back negative on two diff tests. That said, they have tested positive for Myco, Strep, and some others.

Also, dcmom...As much as I would love to get on her cancellation list my father was dx with stage 4 pancreatic and liver cancer and we are in Colorado taking care of him. Getting to her isn't as easy as it was when she was right down the road.

I am not trying to talk badly about Dr. L, I just needed to know how to contact her. Thanks for all the replies!!! Jen

Would love these questions answered too!!! Thanks, Jen

I would lo e to know these anwers too!!! What is an anti-inflammatory abx and how do you know if yeast is causing tics? Thanks! Jen

Ok, I am getting pretty hot and need to vent and to get some help... My sons are being treated by Dr. L, we are on abx zithro but it is NOT working anymore!!! I called Dr. L's office 3 times now and have still not heard from Dr. L about my sons treatment/meds. My one child has gotten drastically worse over the last week and tonight he was almost seizure like. His arms were shaking like someone with Parkinsons his tic were so bad. I don't know how else to contact her and have made it very clear to the staff the issues we are seeing. Can anyone help? Is she always like this in returning calls? Do you know of another way for me to contact her? Thanks, Jen

I posted last week and my sons tics keep getting worse! His movement tics are now turning into trembling. His arms shake! This is very new as thi tic has never happened before. His tics are also becoming more painful! Is there something going around that could be causing this? We are in Colorado (Denver) and are patients of Dr. L, I am at a loss for what to do next! Do we try to ask for a steriod burst? Should I video his tics? Will steriods make him worse? So far my other twin is still doing ok. He has started finger smelling again but his tics (motor/vocal) haven't returned. Please help! I am at a loss but hate that his tics are increasing so much...they will start a new school in 2 weeks and I hate that he could be a tic machine by the time school starts if this keeps up! Thanks!!!! Jen

Thanks for all the comments! As far as changes, there have been plenty!!! We moved across the country in June. My father-in-law moved in with us, we found out he has stage 4 pancreatic cancer, and are now dealing with his care too. Traveled via plane in June and in July, go swimming 3-4x a week, etc. That all said, the boys did fine for two months with all these changes and remained tic free. Now all of the sudden they are back...when things are starting to get back to normal. Now about myco, lyme, etc... My boys tested positive for myco before Dr.L put them on abx. She sent us for blood work and gave us the script at the same time. They came back neg for everything else (lyme, bart, etc). I am just so beside myself...we had 2.5 tic, behavior free, ocd free months and now we are in it again. I am going to try the epsom baths, and may try kids calm vitamin too. We have not tried any new vitamins or any dietary things ( we are on feingold diet) so I am pretty strict about food. I am at a loss where they picked it up! For me I can handle the behavior issues, the ocd but the motor and vocal tics are just so hard for all. They make me feel helpless and for him by the end of the day he is a mass of muscles, so tense and so sore. Quick question....has any ever tried accupuncture? Well, I hear the boys up.... Thanks again!!! Jen Ps. Do u think I should double the zithro to see if that helps till I get Dr. L on the phone next week?

My twin boys (8yrs/60lbs) have been on 200mg of Zithro since May. Once it was started symptoms dropped totally and it seemed like recovery started. My boys have been free of tic,ocd, sleep issues, etc. Which has been wonderful!!!! However, since last Friday I have noticed the tics coming back along with the inflexibility, poor behavior etc. Today my one twin had vocal & motor tics constantly from 4pm till he passed out at 9pm. He had them earlier in the day but not as severe. The other twin has not had any tics return but he does have nightime fears again & wanted to sleep in our bed tonight. Background...both boys tested high in the Cam K values and have tested positive for strep (rapids only), have had scarlettina, had H1N1 & H1N2 and recently had blood work for Dr. L and came back pos for MycoP. She gave them both an official PANDAS dx this past May but we have been in and out of Neuros/Peds offices since they were 4. Now for my questions..... 1. Do abx lose strength or effectiveness? Should I increase dose to 2x a day to see if it helps? 2. Should we change abx? 3. Should we ask for a steriod trial? 4. What do I do? I can't have this come back like it was last yr from Oct -Mar. Please help!!! Thanks for all your advice! Jen

I know this topic is over a year old but I thought that I would add that both my twins had plagio (one had scaphocephalic shape so badly we were referred to craniostenosis specialist at 9mths at a children's hospital an hour from us to determine if he needed cranial surgery...the other twin just had mild plagio shape but both qualified for helmets). The twin with the severe plagio also had severe torticollis to the point they considered performing a surgical release but after several months of PT and craniosacral therapy they decided the release was not necessary. To me my twins still have mis-shapen heads and the one with tort still leans to one side especially when you look at him from behind or side. The twin that had the severe symptoms also is the same twin that exhibits more disruptive/exacerbated PANDAS symptoms. Twin A (severe plagio/tort) was also stuck at 0-station sunnyside up from 28wks till he was born at 34wks...on the otherhand, his twin had all the room b/c he was transverse and up much higher in utero. Just thought I would add my two to the list... Jen

I found this article very interesting and was excited until I read worriedmomma's most recent post regarding relapse after a tonsillectomy. Dr. Latimer has recently (a day ago) referred us to Georgetown for tonsillectomies and Adenoidectomies for my twins. She thinks the strep bacteria could be hiding in my one twins tonsils b/c it was enlarged and ugly looking and his lymph glands were swollen. On the other twin she said his adenoids were enlarged and that the strep bacteria is more than likely hiding in his adenoids because his glands were also enlarged. I found this new information very encouraging b/c the one twin w/ the enlarged tonsils has a throat clearing tic and the other twin has a sniffing tic she said both could be caused by these enlargement. In addition to the tonsil and adenoid issues both boys are considered by Dr. L to have PANDAS and are on a 3mth round of antibiotics. Both have tested positive for Mycoplasma in addition to several strep infections including scarlettina last year. I finally feel like we are getting somewhere but am very cautious b/c I don't want to get my hopes up... So....can anyone tell me if they too saw a drastic reduction in symptoms post-tonsil/adenoid removal? Did the symptoms return if yes, how long till they returned? If your child suffered from vocal tics did this help reduce the vocal tics? Thanks for your input!!! Jen

Darlene, Thanks so much for your post! We will get them tested for Lyme. Twin A, the one with symptoms longer has joint pain almost every night. He has to have his back rubbed and his neck muscles are always so tense and tight. For a 7yr old you should not see this...his neck is also full of tension which we attributed to his severe torticolis from birth and his tics which are so tiring day after day. But it could be Lyme pain but we never thought of it this way. Now about the negative feelings...this occur more freq then I put above but that was the first occurance. For example, tonight again he mentioned that he wish he were dead...it is so hard to hear this from such a small person. He had another huge meltdown/ragey attack tonight. It was horrible...uncontrollable crying, fetal position, rocking, hitting head, rapid neck movements, negative comments, total fixation on a comment and couldn't let it go, couldn't catch his breath, etc...etc...Twin B was also in tears; he kept saying over and over that his twin couldn't help it...it was an hour of pure pain! Finally they passed out from exhaustion...I attribute tonight's episode to the antibiotics that we started back up on Monday...it always brings out the exorcist behaviors. We are still way below Twin A's max levels that we saw on Augmentin but the Zithro still brings out all the bugs... Now about dealing with 2 with PANDAS...it isn't always fun but at least we are learning why this is happening and are hopefully on our way to treatment and relief! Thanks again, Jen

No...nothing has been said about Lyme testing. Although, I suggested it to our ped and she said it may be a good idea to get this done. She is aware of PANDAS but we are her first confirmed case; she is trying to contact Dr. L to see what steps we should take. I am going to call tomorrow and get new cultures done on the boys just to rule out strep with these new symptoms (especially in Twin B since he has never had vocal tics and now all of the sudden has two that are very freq). Do all their symptoms sound like PANDAS? Do you think Dr. L will think they are PANDAS cases? Can anyone explain what the Anti-D1 does and how the values could translate into tics/OCD symptoms? Thanks, our heads are spinning and just a little overwhelmed. Jen Ps. yes they did have all the strep/ASO titers done at the same time, I will get those results tomorrow from our Ped's office. At the time, the ped said all were w/in normal limits but I don't know what the actual values were.

What does it mean when you have a anti-dop 1 of 4000?

No that should be cam k II =149 Sorry!

Ok, we have most of our results back from Cunningham and I am so confused. I have been reading older posts today trying to figure this out but can't...please help!!! Do their symptoms/onset/etc. indicate PANDAS? If yes, what steps should we take? We are going to see Dr. L. in a few weeks...Do you think she will say they have PANDAS? Thanks for any insight you can offer...I am spinning after reading tons of articles and post after post today...just need some answers even if it is just your opinion!!! Jen Now he is the history for each twin and their results: TWIN A - Current age 7 > Sudden onset of tics at age 3.9yrs (May 2007) > The tics were blinking and facial grimace and deep breathing almost to the point of passing out (had us very concerned). > Also at this time he tested positive for active strep and was put on antibiotics. > Around this same time, we were camping and he slipped in a bathroom and hit his head (didn't take him for any formal CT/Xray exams but did ice and called ped who said we should monitor him...we also checked pupils, and normal head injury protocol and all were findings were fine). > All his tics motor/vocal started w/in a week or two of these above incidents. > Never really had terrible twos but vividly remember the constant battles with him during his third year. He became very rigid, literal, very ragey type behaviors, inconsolable, had to have his way, extreme problems with temperature changes, became very hard to parent, etc. > 4yr old check-up 7/07 - we mentioned all of the above and they brushed it off as transient tic syndrome. > 5yr old check-up 7/08 - changed peds this time the Doc said how long has your son had Tourette’s? We said, what? Got informed about Tourette’s he thought we should try meds...I said no give us a referral to ped neuro. He did... > 10/08 - Confirmed Tourette's dx from ped neuro. > Started researching Tourette’s, started dietary changes, and started watching symptoms did this for over a year. > 10/09 Joined PANDAS FORUM…started watching for PANDAS . Our new ped started treating more freq w/antibiotics as we started to notice trends in his tics vs. illness or exposure to Strep. > 10/09 – dx with H1N1 – zithro given (tics all the sudden stopped) > 3/10 – Started making disturbing comments about death and how we would be better off w/out him. Consulted school psych. > 4/10 – dx with Scarlett Fever (Tics started again in early April) Once we noticed rash we called and were seen…tested positive for strep and was dx w/ scarlet fever. After strong antibiotics, tics were again gone and this time remained absent over summer and through early fall and minimal OCD issues were present most I would say are just normal childhood behavior). > 7/11 – Deer Tick found on child in right ear w/in 24hrs; removed tic took it to ped again started another course of antibiotics but Lyme test was not given. His tics and ocd were still not present. > 10/10 – exposure to Strep from best friend – Tics started w/in 48hrs, took for rapid strep test, result neg. no antibiotic given. Tics and OCD climb rapidly and new tics emerge. Tics are very noticeable in school and teacher was really concerned things continue to get worse over next month. > 12/02/10 – Ped order labs (we run Cunningham Test) > 12/07/10 - Ped orders Augmentin, tics surge to never before seen levels and OCD is high. Tic every 2 seconds and had difficulty breathing. Gave baths of Epsom Salts just so he could breath (4 or more a day). Almost took to ER. Day 6 of antibiotics finally saw a reduction of tics and ocd. He could go back to school. Tics remained mild for next month. > 1/10/11 – Contracted Flu (Type A) confirmed by culture > 1/20/11 – Given Zithromax for secondary infection from Flu. > 2/11 – 99% Tic reduction and OCD almost gone. > 3/1/11 – Tics increase and OCD behaviors are back. Request the results from Cunningham to see what next steps should be… > RESULTS FROM CUNNINGHAM: CAM K II – 156 ANTI-LYSO – 160 ANTI-TUBULIN – 1000 ANTI-DOP 1 – 4000 ANTI-DOP 2 – 4000 > Cunningham Results indicate PANDAS range, ped starts boys on Zithro for 5 days and is now consulting w/ Latimer on further treatment. TWIN B: Current age 7 (May 2007) > Tested positive for active strep and was put on antibiotics. > Tics were not noticed until June then he started with a swishing noise and pushing hair up in front. > 7/07 – mentioned to Ped at 4yr check-up > Tics gradually go away over next few months. > Focus mainly goes to twin brother since his issues are very noticeable and dramatic. > 10/09 - Tests positive for H1N1 – gets secondary infection (antibiotics are given) > 3/10 – Starts finger sniffing, and swishing noise with mouth, continued bedwetting, extreme fear of the dark, very hard on himself, calls himself stupid and says he can’t do anything, extremely sensitive to any criticism or when he gets in trouble, can’t stand certain textures, can’t stand anything wet on hands, can’t stand tags, etc. > 4/10 – dx with Strep begins antibiotics > Tics remain absent for summer, OCD/SPD behaviors still remain but not nearly as bad (remaining behaviors: bedwetting, extreme sensitivity, extreme fear of the dark, etc. > 10/10 – exposed to strep - took for rapid strep test, result neg. no antibiotic given. Finger sniffing returns and is a daily occurrence, start smelling everything, would touch different objects just so he could smell it on fingers. OCD/SPD behaviors begin to rise. > 1/10/11 – Contracted Flu (Type A) confirmed by culture > 1/20/11 – Given Zithromax for secondary infection from Flu. > 2/11 – 99% Tic reduction and OCD almost gone. > 3/1/11 – New vocal tics emerge and these new vocal tics happen every 3 seconds (clicking noise and throat clear with a hum). Finger sniffing increases and OCD behaviors are back. Excessive crying on the rise and bedwetting accident occurs. Request the results from Cunningham to see what next steps should be… > RESULTS FROM CUNNINGHAM: CAM K II – 149 ANTI-LYSO – 1000 ANTI-TUBULIN – 1000 ANTI-DOP 1 – 2000 ANTI-DOP 2 – 4000 > Cunningham Results indicate PANDAS range, ped starts boys on Zithro for 5 days and is now consulting w/ Latimer on further treatment.

That is great news...we are with Anthem BC/BS and hopefully we will get the same coverage as you and get most of it back. Did anyone have BC/BS go to Dr. L? Were you able to get reimbursement? Thanks! Jen

We have our initial appointment w/Dr. L in a few weeks for our twin boys. I was wondering if anyone could tell me what to expect? What will she do, review, etc.? We were told that we would be there from about 1-5pm with both boys? Will they do any testing on them during this time or is it all just history collection, etc? If they will do testing, what will be done? Now about payment...I know the person I spoke with in the office told me the upfront cost of this appointment for the boys but was wondering if anyone got this fee reimbursed from their insurance? If yes, who was your insurance company and what paperwork did you file to get reimbursed? Did Dr. L’s office provide you with any of this paperwork? Thanks for any info on this appointment!!! Jen