Kimflow
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Socalmom,
After years of ocd/anxiety that flared every winter and that was always attributed to "autism", due to PANDAS flare versus PANS flares, we finally figured out he had PANDAS/PANS, Lyme, probably bartonella, maybe babesia. After all these 6 years of sending him to school and what I have asked of him already, there is no way I can send him back now knowing that he has all the medical issues. However, I have known for a while that he will learn better if we do it our way. At school, all the federal rules about inclusion....well, much of the day is wasted stressful time for him. We will learn how he learns best at home and with the least anxiety possible. I am scared as I too am overwhelmed but for me, it is just a trade off of different stresses as there was alot of time and stress involved in coordinating, meeting with school, etc. Even if he improves to a great degree from the upcoming IVIG, I don't know how even then I would send him back as school is a cesspool of germs. You are just swimming in germs there. If I get him back, do I really want to risk it all again. I don't.
That being said...I don't what your son experiences during his flares....maybe it is not as severe as my son. I also am able to stay home with him...some moms can't due to family situations/needs.
So no real answers for but I understand your dilemma.
Regarding evaluation.....keep after them. Don't you have an early intervention department or even call the health department to get him evaluated. In my state, they do have medical "school" which is where the child receives 6 hours of home instruction.
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Orion and philamom,
Things change here in a matter of 24 hours. Dr. L's officer calld today to say that he can have the IVIG. I faxed her the hard copy CD 57 of a 24 as well as his tonsil cultures yesterday. Maybe the huge reservoir of bacteria in his tonsils after months of antibiotics changed her mind.
Now I am worried about what to do about the iv steroids. I asked her about this and i suppose she has made her decision on teh new orders that she faxed to infusion company this morning but I have not seen them.
Once again, I have seen two schools of thought.....no steroids if lyme or as the Dad on here wrote.....one or two doses of steroids around IVIG would not be long enough to flare the lyme. The last thing I want is to refuse the steroids or cause Dr. L to drop steroids based on my questions and then have him suffer after IVIG.
Deep breaths.....after years of coping with trying to remediate autism, it has left me less able to stay even with all the ups and downs of pandas.lyme decisions but I am trying hard.
Thanks for your support.
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MMC.....our tonsillectomy was completed on May 30th. Our tonsil cultures came back with heavy growth alpha-strep, heavy growth gramp ositive rods(other wise known as corynebacterium, pseudodiptheria)., heavy growth nonpathogenic neisseria, heavy growth strep constellatus.
Regarding the HI(is that the same HIB that they vaccinate for????) I wondered when the pseudodiptheria showed up. I haven't had much time to research much but this stuff isn't normal flora I don't think or if it is, it takes over in immunocompromised. And heavy alpha strep STILL AFTER 3 months of various courses of uninterrupted antibiotics.
Two questions for you:
Did he flare from the tonsillectomy? We did and it is awful to be in this position again. I even had Ancef 1 gm infused but it didn't treat all the bugs in his tonsils that were released during surgery I guess. The good news is that from the culture we were able to change some antiobiotics to hopefully treat what was released better. So far, not much improvement though. Just gave us loose stools :-( again.
Second, why is Dr. L doing PEX and not IVIG? Do you know what the flowchart for that decision making is....IVIG versus PEX?
thanks
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Many thanks for all of your input. Turns out life steps in.
After I wrote this email, I got a cancellation appt with LLMD and asked her if we could go ahead with IVIG that Dr. L had written for his PANDAS and Syndehams chorea. she said yes, we had atleast treated Lyme /Bartonella/? with 4 months of various antibiotics....He has been on various antibiotics for strep that also treat Lyme since March.
So then I call infusion company to tell them I can go ahead with infusion and they tell me that Dr. L has to sign off again because of the Lyme/Bartonella/?. At the office visit where she diagnosed the pandas and syndehams chorea, she knew of the 2 IgG bands of 41 and 66 and was not concerned at all. She wrote for the IVIG to be infused within weeks of having tonsillectomy.
I was the one who wanted to make sure about those 2 bands so during the tonsillectomy, I got them to draw a Labcorp CD 57 intraop. The CD 57 came back 24. I then got to a LLMD. If it had not been for my thoroughness/worry about Lyme possiblity, he would already been infused with IVIG.
So now, Dr. L wants to see the CD 57 which I already reported to her was 24 and said if he has Lyme, he can't get IVIG. What the heck? So now I have the Lyme person saying he CAN and the Pandas person saying he can't. It almost feels like I am being punked!
Now we cannot get in to see Dr. L to discuss in person until July 31st and we sit in a full fledge PANDAS OCD syndehams chorea facial tic and grimacing Anxiey urinary dribbling FLARE going on since June 4th! We have an appt. to see her July 31st. Our vacation recently was pretty much stress filled and ruined. This is what prompted us to go to LLMD to get her okay on going ahead with the IVIG for PANDAS/chorea.
I just have to trust that things will work out as they are intended and what is best for my son will happen.
On another note, our tonsil cultures came back. I'll post separately about that but we are in horrible flare after the tonsillectomy that was recommended even though we got IV ancef. The bugs in his tonsils even after months of antibiotics were numerous.
Kim
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Hi,
When this whole PANDAS started for my son and he had exacerbation of choreiform movements (severe after the first several hours of zithromax) moms told me to consider lyme and other TBI. This may be just one explanation for you. Has he been tested for Lyme/TBI?
Second, the air hunger I believe is one of the symptoms for lyme, babesia, or bartonella as these are the lists that I have been reading...I just cannot remember which one.
Or it could all just be OCD related but something to think about.
I would think that if you are seeing this though it may very well mean that you are killing off "something". see what others say.
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Bulldog24,
I added the augmentin AFTER the tonsillectomy PANDAS flare.....so the adding of the augmentin does not seem to be causing any herx. It is just the tonsillecotmy that started our second pandas flare.
I did see die off when we added diflucan but only two days and it was very mild.
Thanks.
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Thank you Orion. I am beginning to lean that way.
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orion.....this is encouraging to me. Thank you for writing.
regarding Steroids and IVIG and Lyme......I just meant that in Lyme, they say to never give steroids but with IVIG, they usually DO give steroids. I hope that makes sense.
Thanks.
Editing: forgot to say that one Mom has written me to say that for her child, IVIG caused 4 months of herx. I do not believe they knew the child had lyme at the time.
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Hello,
I posted this also on PANDAS board....need help to make decision by tomorrow.
Our history in a nutshell:
autism age 2, PANDAS diagnosed March 2012, Dr. L prescribed IVIG which is approved and was to be for this week. He has syndehams chorea. Still does. We did the tonsillectomy May 30th which even though we gave IV antiobiotics, he is now in a full fledged flare. The chorea is extensive again as it was for the first pandas flare. The OCD, the need for repeating things he says, the motor sensory triggering, it is all back. Our vacation was so stressful this past week.
It took 3 months of various versions and courses of antibiotics that would work and fail before the first flare settled down....to about 75% back to his baseline. And now we are back to pretty much where we started.
Lyme bands 41 and 66, CD 57 24, no other coinfections through testing but Bartonella might be suspected.........saw LLMD who treats pandas, lyme, autism. She said that it was lucky we didn't do the IVIG yet as it may not have worked. We have been on Rifampin for weeks, Diflucan and Nystatin for about 2 weeks, and zithromax for months. I added back in augmentin finally this week as the flare was getting worse.
However, last night, my husband approached me to ask questions and I have my wheels turning now. Have I made the right decision postponing IVIG. We have something that may help very much with the PANDAS flare. I also know the risk of steroids and IVIG with Lyme......but on the other hand, my son only presents with PANDAS that does not respond well to antibiotics, a low CD 57 (which another mom told me that two doctors have told her that more than the 5 things I have seen listed here can lower a CD 57 So this also does not say for sure he has Lyme). He does not have fatigue, joint pain that I can tell. True, alot of his ocd stuff revolves around his feet..(bartonella suggested).
My point is I am wondering if we can survive PANDAS flares like this while we are treating the lyme for months/years. Maybe I should go ahead and do his approved IVIG.
It is the riskng the lyme herx, or the need for repeated IVIG's. The chorea as I said is atrocious again. The eye squinting bad, and who knows what else as he is only somewhat verbal.
My ponit is that he is not clearcut LYME but he is clear cut severe PANDAS. I have read probably 50 posts on this dilemma.....it has not really helped me figure it out because everone's experiences are all different. It is like rolling the dice unfortunately. Any thoughts woudl be appreciated.
I would love to hear from someone who had clear cut LYME and PANDAS and they went ahead with IVIG...what were your results. Bascially all the 4 months of various antibiotics have been treating lyme all along anyhow, right?
Thanks.
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Hello,
Our history in a nutshell:
autism age 2, PANDAS diagnosed March 2012, Dr. L prescribed IVIG which is approved and was to be for this week. He has syndehams chorea. Still does. We did the tonsillectomy May 30th which even though we gave IV antiobiotics, he is now in a full fledged flare. The chorea is extensive again as it was for the first pandas flare. The OCD, the need for repeating things he says, the motor sensory triggering, it is all back. Our vacation was so stressful this past week.
It took 3 months of various versions and courses of antibiotics that would work and fail before the first flare settled down....to about 75% back to his baseline. And now we are back to pretty much where we started.
Lyme bands 41 and 66, CD 57 24, no other coinfections through testing but Bartonella might be suspected.........saw LLMD who treats pandas, lyme, autism. She said that it was lucky we didn't do the IVIG yet as it may not have worked. We have been on Rifampin for weeks, Diflucan and Nystatin for about 2 weeks, and zithromax for months. I added back in augmentin finally this week as the flare was getting worse.
However, last night, my husband approached me to ask questions and I have my wheels turning now. Have I made the right decision postponing IVIG. We have something that may help very much with the PANDAS flare. I also know the risk of steroids and IVIG with Lyme......but on the other hand, my son only presents with PANDAS that does not respond well to antibiotics, a low CD 57 (which another mom told me that two doctors have told her that more than the 5 things I have seen listed here can lower a CD 57 So this also does not say for sure he has Lyme). He does not have fatigue, joint pain that I can tell. True, alot of his ocd stuff revolves around his feet..(bartonella suggested).
My point is I am wondering if we can survive PANDAS flares like this while we are treating the lyme for months/years. Maybe I should go ahead and do his approved IVIG.
It is the riskng the lyme herx, or the need for repeated IVIG's. The chorea as I said is atrocious again. The eye squinting bad, and who knows what else as he is only somewhat verbal.
My ponit is that he is not clearcut LYME but he is clear cut severe PANDAS. I have read probably 50 posts on this dilemma.....it has not really helped me figure it out because everone's experiences are all different. It is like rolling the dice unfortunately. Any thoughts woudl be appreciated.
I would love to hear from someone who had clear cut LYME and PANDAS and they went ahead with IVIG...what were your results.
Thanks. I am going to post this on Lyme ACN board too....I hope that is okay.
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ptcgirl,
Would y ou share wtih me how you proceeded with treatment? You mentioned PANDAS, tonsillectomy, Lyme, IVIG???? In what order did this all transpire. We had pandas, were scheduled for iVIG but came up with low CD57 and now in Lyme/Bartonella treatment *very early....and to top it off, after tonsilectomy May 30th, are in huge PANDAS flare. It has been recommended to treat the lyme/bart. but this flare is horrible...the syndenhams chorea is back very pronounced, as all the other pandas symptoms. On Rifampin, zithromax, added back in Augmentin tonight, and also diflucan and nystatin going too.
Thanks for sharing.
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Hi,
Two things jump out to me with your post based on our experiences with PANDAS, then lyme, bartonella all in 3 months time:
1. Did they test for Bartonella when they tested for other coinfections. Did they do a CD 57 through Labcorp? Alot of feet "things" in my son.......plus an extremely low CD47 were clinically suggestive of Bartonella. Although I would have no idea why the bartonella would only come out in April. Probably not likely.
2. The lyme practitioner we are seeing said that sometimes it is only after treatment that you start testing positive for coinfections.
3. Finally, several other moms have shared and I have read that bartonella can look like PANS. I suppose this is probably true of other coinfections like Myco....hence, PANS.
4. I wonder if you can have dormant mycoplasma that is activated by a stressor in April....maybe allergies stress immune system in spring and myco. comes out.....other moms familiar with Myco will answer.
Not much help but some things to think about.
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Hi,
I just happened to look up Nystatin becasue we are supposed to start this after the diflucan and it says DERIVED from streptomyces?
SHould I be concerned that this will cause PANDAS flare as I found the streptococcus thermophilus did in the VSL3?
Thanks.
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hug2day...
Just wait until I add in the Diflucan on Monday...oh my...... Yes, I am betting we have a little of both going on...PANDAS and bartonella die off. However, even when he had strep and I did not know it, it was definitely not the same level and length of time he stays in panic re: OCD/anxiety.
he eats ALL day long....little snacks. Blood sugar should be good and I am happy to say that he is now eating meat again so I guess the throat is feeling pretty much better day 8 postop.
clostridia.....good point. When Ryan had high DHHPA, I always questioned whether he had clostridia because he never fit the picture. WIth Vanco. the levels did come down though. During that time with high DHHPA, he was definitely not like this. His poops today are formed and dark. I have been giving Culturelle since the beginning. A little bit of steatorrhea ...I have been feeding him more fats since the coconut and egg yolks got removed due to food sensitivity testing. He was hungry.
The augmentin really messes with his poops....I have to say I hope we can stay away from that abx forever.
He has always responded negatively to H1 antihistamines...however, after reading pandas thread on pepcid, I want to try it. Only thing is LLMD, said give it once a day at bedtime and I can't as the rifampin must require stomach acid for proper absorption. What is it with kids with PANDAS ...alot of them are high histamine, low vitamin D. Is it all immune related/poor methylation related, I guess.
Anyhow, thanks for all the ideas.
Kim
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Oh my gosh, thank you both for replying as I have been almost out of my mind lately with trying to figure out what has happened.
he was almost 75% better and then we did a tonsillectomy. For three days after tonsillectomy, he was fine. Day 3 the night, he slept 12 hours and then all heck has broken loose. It looks like PANDAS flare adn I thought well maybe even IV ancef didn't prevent flare. But maybe the stress of the surgery has allowed the bartonella to come out or more likely from what you are telling me, it is die off. We were on Rifampin 2 weeks before tonsillectomy and it seemed grand. Switched to Augmentin as per PANDA doc for 2 days until I saw Lyme person. I told her that Rifampin was so much nicer and so we went back on it. PLus she suspected bartonella even though he tested negative.
The panic that he experiences with OCD now is such a higher level and there is little that I can do to make it better. And because the panics related to OCD were happening at regular times, I was leaning towards die off.
He has die off a few hours after his zithromax 250 mg in the am but he has been on this dose for months. I give him Rifampin at night....did you know it can make you sleepy? I did not. Didn't seem to make my son but lyme pract. said it does and give it at night. This doesn't seem to cause die off at all. or maybe it has a different half life, absorption. I don't know. The witching hours seem to be at 830 and 330 but I cannot figure out what the 330 time relates to. I give him nothing before this.
This is some serious escalation in the "pandas" symptoms. I really have to talk to myself during them to keep calm even though he is full blown panic. I get so anxious myself because I can no longer "talk him" through the upsets these past days. Even though i do and say what I used to, he is still screaming the same thing over and over. he just has to work through it.
Charcoal is what we did today as well as epsoms salt bath.
I also note that there are times he can't find his words and he mumbles and this is happening in the mornings. Pretty bad separation anxiety again. okay, well in a way I feel better if this means we are killing off bartonella.
My son has limited expressive communication even though I know it is all in his brain. We had an incident on Day 4 after tonsillectomy where he was screaming in pain....pointing to his seemingly fine big toe joint. I know think that was burning pain that the bartonella people get. If anyone has insight on this, please share.
one thing after another is sometimes how it feels...since we just started this journey with autism and then Pandas. Within weeks later, we added lyme and bartonella.
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WOuld anyone share what bartonella die off looks/feels like for their child/themselves?
And what relieves it?
Thanks.
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ooops. WROng forum....I read both. Sorry.
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I am wondering if anyone can share examples of different kinds of bartonella die off.
What did you do to ease the die off too if you have any suggestions?
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Son had tonsillectomy. Day one through three were great. Day four we switched to augmentin as was the plan and all heck broke lose. I thought it was the augmentinbut apparently it is flare. Day 6 we went back to Rifampin. This is Day 7 and he is having so much anxiety related OCD, choreiform movements. This is horrible. We are pretty much back to square one except we dont' have the ankle touching and tops of feet bilater pinching. We had an incident at playground and all of us came home crying. My daughter, myself, my son with tears and my husband would have cried but he held it in. It is draining.
I just have to hope that by treating the Lyme with Rifampin, antifungals, and antiparasites, this flare will go away sooner. And no we can't do Ibuprofen due to post op tonsil. or steroids due to lyme.
So how long will this be.....same as the strep throat flare? I know no one really knows....I just needed to share that this sucks all over again. I feel so bad for our son, my daughter, our family.
Just keep going. Just keep going is what I just have to say and I look forward to bedtime each night as I am so exhausted.
If I sleep beside him, he will go right back to sleep when he wakes and for that I am grateful..
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He started back on rifampin last night. and I have a bunch of other medicines to start treating Lyme/bartonella?. I am very hopeful. And it doesn't stop us from getting the IVIG for the chorea,pandas....in fact she said that if you don't treat the Lyme first, then there is the potential for the IVIG not to work as well as it should/could. I am not sure sure how long we treat the Lyme before we can go to the IVIG.
Regarding tonsillectomy...yes, it could be flare but weird that the flare didn't start until Day 4 postop and it was the first day off of Rifampin and on Augmentin. I tried to think of everything I could. He was at the end of 3 weeks of clindamycin and 2 weeks on rifampin during tonsillectomy and the rifampin is the ABX that seemed to clear the strep as best of all the antibiotics. They gave him a gram of Ancef which is a whopper dose for a 50 pound kid and Ancef is what the PANDAS doc. suggested. His tonsils were not that large but I have heard it mattters also about the crypts in the tonsils too.The culture is pending.
I am hoping that it has more to do with coming off Rifampin. Crossing my fingers or else we'll just have to wait until the flare is over again.
Alot on my plate again. When you get more answer/more of a new plan, it feels good but then reality sets in and you have to get yourself pumped for the path ahead again. Does that makes sense? I am tired this morning....thinking too much. :-)
Kim
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Emily,
I was in your position. I just drove to any doc I could find that would help me. I drove to New York doctor and got zithromax 250 mg every day for immunomodulation because my DAN would only give it 250 mg ONCE a week. I drove to 90 minutes to an LLMD when I needed someone to order LYME bloodwork. Look at PANDAS network for their list of doctors....or you can also ask here for doctors in your neighborhood that are PANDAS friendly.Or could you show the doctor a paper on teh zithromax that is immunomodulatory such as Dr. Schulman's article.
I don't know what things you can take that will not disqualify you from the study.
There is dye free ibuprofen but unfortunately all brands generic that I have found contain some type of sorbitol, etc.
Good luck. Like I said, I don't know what are the binders on admittance to the study.
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SF mom,
our story is convoluted, that's for sure. With the Clindamycin followed by the Rifampin, we were treating PANDAS that would not respond to other antibiotics. The Rifampin seemed to be the charm. We are under care of PANDAS Dr. L and in the mean time, I got Lyme and coinfections done. Came up only exposed but immune to Parvo and lyme bands 41 and 66 positive. I saw LLMD and asked for CD 57 to rule out Lyme before we went on to IVIG end of June for PANDAS.
Today I see lyme, pandas, and autism person at NIHA. I hope she has some answers and yes, I hope she puts us back on Rifampin. He also takes zithromax 250 mg as immunom. of pandas symtpoms. This too seemed to really help. maybe she will have us on that on higher dose??? I know that Rifampin is not to be given long term singularly or you set up resistance.
Thanks for you reply.
Kim
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Cobbie,
Sorry it is a tough time right now. As I am trying to keep my head above water also lately, I would say....look for some of the blessings that remain. that is what I do. It is difficult to watch your child suffer. I know. And I too know that sometimes as a family, you feel forgotten. Force yourself to look for your blessings that remain. Help your son to do this too on the days that aren't so dark for him.
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Well, riding the rollercoaster again. After multiple failures with different antibiotics, something about the Rifampin seemed to work a miracle or maybe it was the combination of going through the "die off" with clindamycin and then the rifampin. By the end of this 5 weeks, our son has many of his symptoms diminished.
Now we did the tonsillectomy and day 1 and 2 he was the same. By day 3, he seemed to go downhill. slept 12 hours. This was the last day of the rifampin. Day 4 postop of tonsillectomy, we started liquid augmentin. Verbal triggers, choreiform movements, everything is back to the way it was on the clindamycin.
Is this PANDAS flare from the tonsillectomy even though we did IV Ancef intraop?
Is this Lyme die off? Someone said that we could be experiencing die off form Rifampin but he was best he had been over 10 weeks on Rifampin after hte clindamycin?
Keep in mind that initially zithromax and later first go around on augmentin caused increase choreifrom movements within hours of dosing. I am seeing that he seems to have "dieoff,reaction" several hours again after dosing augmentin. It is just stronger this go around on augmentin. And to make it even more confusing, he gets another dose in the evening as we do not see this type of reaction. I have no idea what is going on.
Our CD 57 came back at 24 so we are most probably dealing with Lyme. In addition, I think I am suspecting bartonella even though he tested negative. Why......feet things going on. When PANDAS came, my son began pushing his soles into the back of the carseat so much that eventually the carseat back broke. I also note that he doesn't like to walk on wood floor. PRefers to scale furniture as much as possible. This also seems more prominent in the morning. Finally, after the first dose of augmentin yesterday, he had a "crisis" where he was crying real tears of pain down his cheeks.....c/o toe joint pain it would seem. This was about 2 hours after his dose.
Please help if you have any guesses on whether the augmentin is helping or not or maybe we should go back to rifampin. It sure was nicer for him adn everyone on that antibiotic and alot of his symtoms had lessened.
Thanks.
Cardiac involvement in children with PANDAS.
in PANS / PANDAS (Lyme included)
Posted
so if you are diagnosied with pandas, syndehams chorea, does that mean that someone should have sent us to cardiologist?????
Should I pursue this?
Thanks.