colleendonny

Oh, I'm to hear about Ian, but now you may have a.reason reason why the IVIG wasn't working. As much as I like Dr.B and think he is really helpful, he has a lot of patients, and I think some things that he means to say sometimes slips his mind. He did tell us no vaccinations for DD, and my other children as well. But I do think I had to ask him. And the only reason I knew to ask, is because of what I read on here. Also, he never mentioned for me to give probiotics. But again, I knew from looking here. I hope you start to see some improvements soon! We need more PANS specialists so the 4 specialists now wouldn't have their hands so full.

I know the future is unpredictable. I need to just live in the moment and stop worrying what the future holds. I find it is hard hard getting me into that mindset, though. I read stories here of many teenagers who are having such difficult times and I can't help bit to imagine our future and times ahead with illnesses. And I still have 8 more years till DD is a teenager! I went to her school yesterday to register her for kindergarten. Her nurse was looking over her immunization records and was talking about if she needs any special utilizations for her autoimmune disorder. I told the nurse she has PANDAS, and she had never heard of it. I found myself trying to explain it, but I couldn't really express what is going on. I know lots of kids have letters sent home if there was a strep infection going on, which is great, but my DD's sudden onset wasn't from a strep infection. I can't ask for a note to be sent home for any and every illness that goes around. Thanks Laura, reading about your kids makes me excited that I will be using the same doctor as you . He does seem great and I am very much so looking forward to our appointment with him.

Just wondering, does anyone have a PANDAS child who has started and remained mild to moderate with symptoms? Or do exacerbations tend to get worse each time? And for those who have been dealing with this for a while, the sooner you treat symptoms with exacerbations, does it usually lessen the intensity/ length of them? Just curious. I know each kid is different and I cannot predict my DD's future, but was just looking for experiences. I just feel like it can get better, but then again I read so much of things not getting better, even worse. I feel as if my family, even my husband, doesn't get the seriousness of PANDAS, because my DD is not in a bad place right now.

I think we'll start the Prednisone tomorrow and keep at that for a day or two alone, then add in another and so on... We did call the LLMD today to see if there were any cancellations. There is not and I am still on the waiting list. They mentioned that for new patients, they are booking out until December!

Thanks Laura, I was thinking... Dr. B said the azithromycin was for the ehrlichiosis. I was thinking of possibly keeping her on the azithromycin for that and phrophylactic of Augmentin... I'm not sure, so confused. I think I will call the LLMD today to see if we can get in sooner. I'll have to check out the CDC link. It seems whenever I look into ehrlichiosis, all that ever comes back is virus like symptoms. But after watching Under Our Skin, I'm really freaked out about all this. I'm nervous to have my kids be outside this summer! Dr. B's office suggested I reintroduce the previous meds one at a time. I think I will start with the prednisone first, since that is when her sickness started. Although I do not think it was from the medicine. My DD 9 months, is dealing with the same illness.as above. Vomit and diahreah with no fever.

Thanks Laura, I was thinking... Dr. B said the azithromycin was for the ehrlichiosis. I was thinking of possibly keeping her on the azithromycin for that and phrophylactic of Augmentin... I'm not sure, so confused. I think I will call the LLMD today to see if we can get in sooner. I'll have to check out the CDC link. It seems whenever I look into ehrlichiosis, all that ever comes back is virus like symptoms. But after watching Under Our Skin, I'm really freaked out about all this. I'm nervous to have my kids be outside this summer! Dr. B's office suggested I reintroduce the previous meds one at a time. I think I will start with the prednisone first, since that is when her sickness started. Although I do not think it was from the medicine. My DD 9 months, is dealing with the same illness.as above. Vomit and diahreah with no fever.

So, following advice from Dr. B's office, we had to stop our meds. DD was on Augmentin and Azithromycin since January. We added prednisone about 10 days ago for a persistent throat clearing turned throat hacking tic. The day after we started the prednisone, she started to not feel wee. She had bellyaches, vomiting on Sunday and Tuesday night. Throat hacking was significantly decreased though Then diahreah started on Wed through Sat, none today. ( Although my 9 month little one has been sick since Friday!) So with the advice, we stopped all meds. She hasn't had an since Thursday night. And she is doing well. She even told me she hasn't had as many bad thoughts and bad words. I'm supposed reintroduce her meds one at a time after she is symptom free for 24 hours. I need to call them back to see if it necessary. I'm thinking of asking for a new rx of prophylactic dose instead of treatment dose...? Any suggestions? Good idea?

My daughter sees.Dr. B too. She is 5 and is 53 pounds. She is on 600 milligrams 2x per day. This a a treatment dose, and not prophylactic. I do think we will be switching doses soon though to being prophylactic.

I just started watching and got about halfway through. It's pretty scary. It makes me scared for the future And we live in a Lyme populated area.

I still haven't talked to Dr.B's office yet. She vomited again Tue night/ Wed AM. Now today she has felt better but has had diahrea 6 times! Poor kid. I'm nervous to give anything without talking to one of the PA's.. Thanks everyone.

Thanks dcmom- I remember last time she was on Orapred. I believe the prednisolone is the generic for the Orapred... Last time she was more hyper and had no stomach issues. Also last time around she was on Augmentin with it. This time around she is on Augmentin ands Azithromycin, treatment dosage. We do dose with food. So for the steroids, it is not necessary to break it up a little. I am also going to call Dr. B's office today as well to see what they think. Thanks

Hi all DD5 just started a steroid liquid taper of prednisolone. She started Friday am. We are starting with 2 1/2 teaspoons per day for 6 days then going down. I have broken it up to 1 1/2 am and 1 in the pm. She awoke yesterday not too hungry with a bellyache. And actually asked to go to bed last night. But she was still herself throughout the day. Maybe with a little less energy. She woke us up @ 12 to go to the bathroom and complained of her belly sweating, it wasn't. Then she woke me up at 430 vomiting. Could this be a side effect or more likely a virus?

Kara- I might be able to go! If my husband isnt't working that day I will be there. Could you send me the info?

Hi Kara- She was on Augmentin when we tested for IgeneX. At the time she had been on Augmentin for 5 weeks and Azithtromycin for a few days. I wonder if that did make a difference in the lab results. Interesting what you said about the Lyme cyst theory. I have never heard of that. Back in December/ January for your son, was he on abx when you retested through IgeneX? And, when you test through IgeneX for repeat tests, do you usually just check for the Lyme or co-infections as well? I have heard the regular tests that Dr. B run can usually detect co-infections just as well as IgeneX, but for Lyme it is the best to test for it through IgeneX. 1tiredmama- Thanks for sharing your experience. Having a sick child definitely rocks anyones world! You know, I feel like everyone around me, even my husband at times, thinks I am crazy. I just dissect every little behavior and research too much on the internet. But hey, if I didn't, then who knows what would happen, you know? Maybe I will just try the Augmentin on him for the 30 days. We will see if I notice any difference in any of his behaviors. I already find myself dissecting my 8 month old as well. Ah, PANDAS sucks

Well, we had our 3rd appointment with Dr.B yesterday and I feel as if I am more confused than when we first went there.... I'm wondering if I can get a little advice/ insight/ suggestions from anyone. I would appreciate it! DD started with overnight onset of symptoms in October when she was 4. Started off with saying "bad words" in her head then intrusive thoughts. Then some jaw/ lip smacking tics. These symptoms are still present, although the jaw ones aren't as much as they used to be. Then she had a period where she had some quirks that kind of went in phases, like waxing and weaning of symptoms: Few days of wanting to pull out her leg hair, a week or so of wanting to scratch objects, some sexual thoughts, A few nights of separation anxiety, although we never had to sleep with her, regression in her coloring ability, babytalk, lots of confessing,some ODD here and there, about a week of frequent urination, a few days of excessive handwashing and talking about germs, she always thought she touched things "too hard" although she wasn't, tempertantrums,she didn't want to go near some people because she thought she would hurt them,she would always mutter "sorry" and "excuse me", because she she thinks she farts or hurts people, always thought she did things on purpose when they were an accident. Brought her to the pedi, said nothing was wrong. Lab tests including ASO, DnaseB rapid were negative. Was sent to get an EEG, negative. Saw a neurologist. She had an MRI, negative, and a spinal tap to check for NMDA receptor encephalitis, which was also negative. Had our first with Dr. B in December, about 7 weeks after initial onset. When we first saw him she was at about 85%. The only things were really the intrusive thoughts and words, which don't really make her anxious or scared, and some jaw/ lip tics. We drew her blood and we were sent off with an rx for a steriod burst and abx of Augmentin. So, I couldn't really tell how well the Orapred was working because by the time we saw Dr. B, many of her symptoms had faded. We saw Dr.B again in January and he explained her lab results. Her Ehrlichiosis IgG was positive. Normal titers are 1:64, her were 1:128. Also, her C3D immune complex was high at 50, when normal is 2-25. And her vitamin B12 was very high at 1,568 when normal is between 243-894. Also abnormal was her Ganglioslide GM!, Triple Evaluation Asialo-GM1 Ab. Hers was 25 when anything under 25 is considered normal. We added Azithromycin with the Augmentin for the Ehrlichiosis. We then went with IgeneX testing. All co-infections came back negative. Lyme results were for IgM were IND on bands 39 and. For IgG bands were IND on 31 and 39 and + on band 41. Dr, B is convinced she has PANDAS, and I believe she does too. I can't think of anything else that would cause such overnight symptoms. When I asked if he thought it was the ehrlichiosis that triggered it, I didn't really get an answer. He never suggested we see an LLMD but I scheduled one and we don't see him until April. She had a period of stuttering after starting the Augmentin that lasted a few days. The she had a period of moderate ODD for about a week. She had her teeth cleaned on Feb 15, and started her on fluoride tablets. Starting the 16th, she started a throat clearing tic. It is pretty frequent, at least once every two minutes, usually more than that though. He said he nasal passage looked a little infected so to give her saline and it may stop. We are also doing another steriod burst to see if anything changes. Her and her brother were also sick in mid Feb. Her brother had a fever for 2 days and ear infection. Kayleigh had a fever for two days then they both got coughs. And I also had brough her 2 1/2 year old brother. Maybe I'm just super paraniod and notice every little thing, but I was suspecting something could be up with him. It also seems that many parents have multiple PANDAS children. Around the initial onset of DD's symptoms her little brother started to cry at night wheich he never did. Also I do notice dilated pupils on him often and he has been sensitive to light for some time. Mostly in the car when the sun hits, but then again, that's annoying for anyone. I also nitive that sometimes he opens his mouth wide, and that could be a tic. Dr. B didn't run any labs on him because of his age, but suggested him for a 30 day rx of Augmentin for mild PANS... I'm not so sure. I feel like his symptoms do not necessarily have to be PANS.... Ugh, I'm just confused and frusterated.

Your post makes me happy to read :)

I had a good time meeting you all. Thanks!

Thanks for the suggestions. It has lessened today.... Not sure why? We were out last night and didn't get to the pharmacy in time to pick up the rest of her Augmentin. Didn't pick it up till lunchtime today. I noticed her throat clearing was less.... Coincidence? I'm not sure... I do notice that she does it less when she is well occupied or concentrating on something. She is at preschool now and I'm anxious to see if her teacher mentions it to me. I'm going to look at the suggestions from above. I read somewhere though to not talk about not ticcing with people because it makes it worse for them. What I read said that trying to suppress tics is like trying to not blink for a long period of time.

Hmmm, ill definitely have to look into it. Thanks!

DD just started thick tic last week. It is her only tic, but she does it so often. Like, once per minute. Does anything help this??

Thanks My DD had a.neurologist appointment the other day. He said be wouldn't recommend foxy for a young child because it stains teeth. Anyone know about this?

For Lyme and co infections testing, you can have any doctor test for them. But they are not always reliable. The most reliable way to test for Lyme and Co is through Igenex. There is also a new test that I do not know about so someone else may chime in. You can call or go the IgeneX website. You can request a kit. You have to have a doctor sign off on the kit. Your doc will draw blood. You have to decide on which tests to test for. And its not cheap. We paid $740 cash for our test. They will send you back paperwork to.submit to your health insurance. Hopefully you would get some or most reimbursed. The results will get sent to the md who ordered them. Then if anything comes back positive you will have to go to an LLMD, Lyme literate medical doctor. More than likely, LLMD's do not accept insurance either. You could always just have your sons doctor test through their labs, and see if anything comes back positive first.

Hi all. My PITAND DD5 tested positive for.ehrlochiosis through Dr. B's test. Other co-infections were negative through IgeneX. Her Lyme test through IgeneX.did look a little suspicious. We do not see a LLMD until April. Currently DD is on augmentin and azithromycin. For any who have ehrlichiosis,.what abx are you taking?

Hi. It sounds to me like it could be PANDAS. The Lyme correlation coincides with PANDAS. It is also called PANS and PITAND, pediatric infection triggered autoimmune neuropsychiatric disorder. Meaning, hey, its not just from strep infections. It could be triggered from Lyme and coinfections of Lyme like Bartonella and Ehrlichiosis. Or mycoplasma to name a few. In my case,my DD5 was diagnosed in December after sudden onset in October. Hers wasn't triggered strep, but from ehrlichiosis. I would suggest you find a PANDAS specialist and make an appointment as soon as you can... Where do you live. There are only a handful of specialists. At the top ps the PANDAS page there is a thread of helpful links, one is doctors who have been helpful. There may be one in your area. Good luck with everything! You'll find a lot of helpful information here.

Great article. I will definitely show this to our non- PANDAS believeing pediatrician. Maybe he will be less likely to kick us out of his practice I have chatted with Dr. Jenike. He is great. I e-mailed him out of the blue one day and he responded within the hour.