Posts posted by SEAMom
My DS15 had his 7th IVIG on Tuesday & Wednesday this week. He woke up yesterday (Saturday) with a migraine like headache which he gets about every other infusion. We got the headache manageable and then in the afternoon he started to complain about his body hurting. Then he was complaining about being hot and cold. I checked his temperature and it was 100.8. I called the immunologist on call. He thought it was a "sub-clinical latent infection/virus" that was triggered/irritated/awoken by the IVIG. My DS was already on tylenol and aleve. The aleve was just about out so I switched to Advil. It did nothing. His fever conintued to climb to 101.5. Finally gave him 2 extra strength tylenol a little early and that seemed to stop the climb and his temp slowly started to decline. When I was able to get his fever back to normal he was really struggling and had one of his worst flares I have seen in months. Some of the most dramatic chorea movements I have seen in the past year since he went on his first antibiotics a year ago I continued to wake him every 5 hours through the night and give him more tylenol to keep the fever down. He is ok this morning. Just extremely tired and wiped out.
Has any of your children experienced this post IVIG?
Hey would love some help from seasoned mold experts. We have a cabin that we purchased last year. After purchase we suspected mold or mildew in the bathroom because of the smell. We finally got a contractor to look into in. Sure enough the toilet was leaking and there was black mold everywhere underneath the carpet. Another reason to never put carpet in a bathroom!! Gross!
The contractor says he is going to treat the mold properly to irradicate it and make sure it has not gone into the drywall.
Is this enough? My DS15 who has PANDAS was tested for mold and has a sensitivity but really has no exposure at our home so it has not been an issue. We don't go to the cabin except in the summer. I can get an air purifier set up in the cabin after the clean up to rid the air of any spores. Is this enough or do I need to hire in a professional mold team?
DS is one year on Augmentin 875mg x 2day. Monthly IVIG. but my boy is 132 lbs - Dr. says he has to stay on this dose until symptom free for a year and then she will decrease.
The Dr. also ants to also put my dd on abx. My dd does not have PANDAS but catches Strep all the time which is a huge problem for my PANDAS son. She has brought strep home 4 times in the last 11 months! Dr first talked about a weekly Zirthromax but then was talking about a weekly Amoxicillian since that was used to treat her strep. It was my understanding that Amoxicilin stays in your body for such a short time that it would not be effective as a one dose weekly. Is anyone doing this?
What prophylactic antibiotics are your doctors prescribing for STREP and at what dosage and frequency?
Any advice as to when was a good time to switch from a full dose to a prophylactic dose?
My DS15 who has had PANDAS since March 2015 has used the screen as his coping mechanism. When he is most symptomatic he had used screen time - video games/tv and building LEGOS as his escape from his frightening reality. Paralyzing anxiety being his worst symptom. The screen or a lego at times have been the only thing that have helped pull him out of terrifying episode.
I too have worried that he spent way TOO much time on a screen. What has helped is that during his periods of healing following IVIG his screen time decreased. I also listened to a lecture from a PANS conference on YouTube. The speaker was a pediatrician who specializes in PANS. Her daughter also had PANS. She said all our patients for the most part are addicted to screens as a coping mechanism, her daughter included. The reality they face without it at times is too scary. As our kids heal this attachment will lessen. This gave me some comfort and less worry. I know that some of my extended family members think that if I just take away the video games my son will get better. Or if they take him away on a trip he will get better - like our house and the screens are the problem.
Of course I know better and ignore these requests.
The IVIG is slowly working and he is back in school part time. The only thing I had to cut out was some of the violent more mature video games - they tended to provoke anxiety. This Is probably not an issue for most of you with younger kids.
I just got the results back from our ND. She in not in the office and I don't have an appt until next week. The test was for the IgG31 kDa Epitope test.
We did this specific test because IGeneX recommended this additional test because my DS's results for the Western blot were ++ 41, +58 and indeterminate for 31 and 39.
The results are below:
Non-specific antibody for B. burgdorferi - NEGATIVE
Specific antibody for B. burgdorferi - POSITIVE
So what does it mean? Does that mean he has lyme?
Also his IgM Western Blot which was done with the first tests was 41- indeterminate. No other results.
He tested negative for all co-infections except he tested positive for HME (Ehrlichiosis)
IgM - 80 (anything <20 is considered negative)
IgG <40 (anything <40 is considered negative)
Would love your help and wisdom!
it sounds like the augmentin is not working and it would be worth trying a different antibiotic. You usually get some relief in about 48 hours. I would give the prescribing doc a call and see if they will write you a new Rx.
Oh yes HPV for a boy. It is recommended for all boys now because the boys carry the HP virus. If the boys are not carrying it the girls won't catch it.
My bottom line is to steer clear of that vaccination and teach your daughter's to get their regular PAP's and they should not get HPV or cervical cancer. I would have never given any of my children the HPV with what I learned about it after it was done and too late. It is not medically necessary nor required.
Thanks for all the referrals. Nice to have so many options!
Nickelmama - disregard my question about the plasmapheresis - not enough coffee this morning and I got my messages mixed up.
Thanks for the info on the IVIG - that makes more sense to me now.
I was reading some previous posts about lyme and I am starting to put the pieces together. The ND and me always clung onto the PANDAS diagnosis because my ds older sister kept getting strep and my ds kept flaring every time she did. His first onset was two weeks after my dd had strep the first time but it was also 4 days after my ds had his 2nd HPV vaccination. I called it the perfect storm. But he never had very elevated titers. The ND and I think the Lyme and the ehrlichia were dormant up until this point and then all broke loose.
It makes sense why the IVIG won't stick. What treatment did you use that has been successful for ehrlichia and lyme? Did you do the plasmapheresis before the lyme diagnosis or after?
he has been tested for the other co-infections and they all came back negative. Thanks for the video link! I will check it out.
Hey has anyone's child been diagnosed with Lyme and/or Ehrlichiosis and only had neuropsychiatric symptoms only? My DS tested positive for Ehrlichiosis and we are waiting for a second test for Lyme as the first one was inconclusive.
My DS has PANDAS for sure but his recovery has been slow and does not seem to stick. He had his 3rd IVIG at the beginning of December and he made about a 95% recovery that lasted about 28 days and now he is about down to 25%.
He never had a known tick bite or rash. However he did have exposure to tick areas and outdoor activities and he did have really weird memory, auditory processing delay and vertigo after a camping trip in Montana. I blamed the symptoms on a fall the week before he left. We thought he had a concussion that we missed. But looking back at it now it so easily could have been something else...
He has never had joint pain or muscle aches.
What about false positives on these tests too? IGenix said that my DS just had to have 2 weeks since his last IVIG before the blood draw - we had one month in between. What is the chance that he received Lyme and Ehrlichiosis antibodies from the IVIG? What is weird is that he only tested positive for IgM (current infection) for Ehrlichiosis (HME) and negative for IgG. He should have some IgG (past infection antibodies) because he has not been outside at all the past 10 months since he got sick. The first possible tick exposure was 14 months ago.
This maybe just a wild goose chase!
Would love to hear some of your wisdom on the subject.
Thank you - he is on my list.
I am looking for recommendations for a LLMD in the Seattle area. I received 2 names from lynenet.org and have a request out to ILADS but I would love to hear from parents in the area who have seen a pediatric LLMD in the Seattle area and would recommend them or would steer clear.
My ds15 first IVIG had 1mg/kg and he did not have side effects during the infusion but 36 hours after he had a migraine like headache for 3 days which was just . His PANDAS symptoms did not improve but two weeks after IVIG flared even more! 4 weeks later he had his 2nd IVIG - 1mg/kg and this time no headache. It did not cause him to flare more and maybe there was a very slight improvement.
The 3rd IVIG treatment 6 weeks later at the higher dose (2mg/kg - done over two days) which I begged for since the lower did not appear to be working was like a miracle drug! Within about two days afterwards he was about 90% symptom free. That lasted for a month. Now he is about at 50% as the IVIG is wearing off. We are waiting to get more IVIG approved. The higher dose really did the trick for us but we did not have any fevers, vomiting , etc. However, I read that the lower dose can just stir things up for the kids and not provide any benefit. Our doctor almost talked me out of the 2mg/kg because he thought it might just make mu ds flare more and get a bad headache. Luckily I followed what all the literature said and what they are doing at Stanford (2mg/kg). My son's neurologist and ND were also pushing our Immunologist to make the dose change.
It is so hard to make these decisions for our kids with these risks involved. Hang in there. I hope your son feels better soon.
My DS15 has an elevated IgE of 600. Normal range is 1-200. His doctor understands this has to do with some type of allergy but does not know to what, and has not explored it other then put him on Claritin. The Claritin has not decreased his PANDAS symptoms. I just recently read that IVIG is not very effective with an elevated IgE. We have had two at 1gm/kg with little success, and will have our 3rd at an increased dose of 2gm/kg right after Thanksgiving.
Has anyone else's child had an elevated IgE? Did you treat it and if you did IVIG was it successful?
Our immunologist says that 1-2mg/kg IVIG is considered high dose? What dosage have other kids had success with?
Has anyone had succes with 1mg/kg? I am so frustrated if this dose is too low that all it is doing is stirring things up more .
my son was given Benadryl and prednisone before the IVIG was administered. He was also still taking prednisone daily. After the initial prednisone taper - it was so effective and he was such a complete disaster previous to it that they put him back on 25 mg daily so he be could be functional vs dysfunctional.
I am worried we will have the 4 day headache from again with no results from the IVIG.
We are working on the other pieces - vit/minerals/leaky gut but there is still more we can do.....
I was really hoping IVIG was the magic bullet.
My DS15 had his first IVIG 3.5 weeks ago. We saw no results except a terrible headache for 4 days. His second one is scheduled for tomorrow. I feel that in the last 2 weeks he has actually regressed back to the early months of his diagnosis - his eyes are really dilated again. His chorea movements are coming back. The suicidal talk remerged and I am having to sit with him to sleep again! We fought so hard to get IVIG covered by insurance but it was supposed to help!! Not make things worse!!
Has anyone experienced a regression first after IVIG and then success?? We had such unbelievable success with a high dose prednisone 50mg taper that my DS's immunologist felt very positive about doing IVIG.
My son's IVIG dosage is 1mg/1kg over one day. I have questioned our doctor about this dose but he has assured me multiple times that a higher dose would not be more helpful but just make my DS's headache/side effects worse.
I would love to hear your experiences. I really need to hear some success stories.
My DS15 just had IVIG for the first time on Tuesday, 48 hours ago. He has a monstrous headache that is making him miserable. Did others experience this and how long did it last? What did you do to help manage it?
I am working on our second appeal and fighting hard against Regence. Has anyone out there gotten Regence / Blue Shield / Blue Cross to cover the cost of IVIG? If so what state do you live in? And if you did get coverage what diagnosis did you use?
Ok - I heard back from my DD pediatrician's office and they said that PANDAS is not typically associated with Strep B so she does not need to be treated with abx since she is feeling fine now.
I then heard back from my DS PANDAS doctor and she said my DD absolutely had to be treated with abx and that the whole family had to be cultured in case we were carriers. Now I don't know what to do. My son is still having a really rough time today. I don't know how long it should take for his immune system to calm down from this strep exposure.
My daughter has juvenile arthritis so I hate to tax her immune system anymore and put her on abx if she really does not have to go on them. I should have just put her on abx at the beginning of high school because she is the one that brings all the bugs home - she is the one that brought home the initial strep that infected my DS.
! I HATE THIS!!!!
My DS15 has PANDAS and we are waiting for insurance approval for IVIG. This past week my normally healthy DD17 went to the doctor with a sore throat and fever. They did a strep test and it came back negative. My DS symptoms have been flaring all weekend yet my daughter seems to be almost feeling now at 100%. Yet this morning I got a call from the pediatrician's office saying that the culture came back positive for Strep B. They said they usually don't treat this and that this is not the strain usually associated with PANDAS. My DS's PANDAS doc is not in on Monday's. Has anyone else had a past experience with Strep B and PANDAS? Do I need to worry? Should I get my daughter on abx? My son is still on Augmentin 875mg 2X a day.
RASH - did/does you child have one?
in PANS / PANDAS (Lyme included)
My DS15 has had a rash that comes and goes. It always shows up during IVIG but it is kind of like a hot flash.and in that it only stays for 1-10 minutes and then goes away. It is not raised - just red and has presented two ways. It is on his chest, shoulders and neck. It is is large red splotches or it is a weird non uniform outline (kind like the grout in a walk way flagstone. The rash also shows up occasionally in between monthly IVIGs. It showed up yesterday and it is 28 days post his last IVIG. My son's immunologist and neurologist do not have an answer for the rash. My son has had some great success with IVIG and steroids but nothing is holding. I feel like this rash has to be a clue but I don't know for what so I thought I would ask if anyone else's child has experienced this rash and know what is means? Thanks for your help. Also - he has been tested by IGenix for Lyme and co-infections and was negative.