Ataloss12
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Posts posted by Ataloss12
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Well my child's case is extreme and not "typical". She does have immune deficiency as well. It could be that she was left untreated for so long- IDK. I do hear about some children being cured by IVIG, we seem to need more than that.
Sorry to hear that. According to our daughter's bloodwork, she is immune deficient as well.
We didn't know until Dr. T ran bloodwork to detect PANDAS. We saw Dr. K and he didn't seem to think there was anything to worry about regarding the immune issues and stated it was "good" in our case because insurance would cover the IVIG if we proceeded. We will be going to see Dr. B next month to address any potential allergy/immune issues or triggers. -
I don't know what to advise as far as IVIG, but when we need to nip an episode in the bud (and who doesn't need that?), we do use abx to help w/ whatever might have triggered it, but we also use prednisone to slow down/halt the autoimmune reaction. Even with IVIG every 3 weeks, my child still has flares.
Thank you for your response. You still have issues with flares, even after IVIG?? Dr. K told me that IVIG "was the cure". Is this dependant on how long the child went without treatment for PANDAS? If IVIG isn't 100% going to cure it, I am not sure it a risk worth taking in our case. We do have an appointment with Dr. B to get him on board as well, making him the third PANDAS specialist that we have been dealing with.
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Hello everyone!!
I thought we were out of the woods until this Tuesday. My DD5 was diagnosed with PANDAS and started on Augmentin 400mg bid and was on it for about 40 days. Dr. K told us to finish her last round and wait for a few weeks to see where we were. We stopped the last round and she didn't have ANY intrusive thoughts for well over 4-5wks!! Then on Tuesday, she complained of a sore throat (was very red), so I started her on another round of abx that afternoon. Lastnight, she told us that she had a "bad thought" and stated she thought they were coming back.
My question is this: Should we continue abx and see where she goes with it, or just jump right in with IVIG? Dr. K feels like she has been dealing with PANDAS since a toddler, but we really noticed it March 5, 2012. She didn't get started on abx until around the second week of May. Can anyone chime in and assist me with this decision?? I am terrified of possible IVIG reactions.........
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Totally off topic, and you didn't ask, but have you ruled out metabolic disorders as part of the puzzle? Our doc kept saying my son's symptoms and behaviours sounded so much like a metabolic disorder, except that he was not vomitting. Your comments about vomitting just made me recall that. FWIW
She had the thyroid panels done, but nothing more than that for a metabolic panel. I will add that to my list of testing that I want done to rule out any underlying conditions. Dr. K said that he believes our daughter developed PANDAS as a toddler and that the vomiting would be a symptom. We have an appointment with Dr. B to have him look into the issues that showed up on her bloodwork and I will address the metabolic issue with him to see if he can rule that out or refer us to a doc that will look into it. Thank you
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[Who are your PANDAS docs?
Sorry, I must have overlooked your previous post regarding MTHFR. We are being treated by both Dr. T and Dr. K. We have never had the MTHFR testing done and wondering if we should request it.
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Hello everyone!
Please excuse my ignorance, however I have seen alot of topics regarding MTHFR and really would like someone to comment on this matter in layman terms. Is there any correlation with PANDAS? Should one have their child tested for it? The only thing that I know that is definite in our situation is our DD5 has been officially diagnosed by 2 PANDAS docs, had immune deficiencies show up on labwork as well as low Vit D levels. She was born premature, was colicky as a baby, had frequent allergy/sinus/colds/ear infections throughout her life and unexplained vomiting (since a baby) and weight gain (within the past 2 years) and ezcema. One of the PANDAS docs thinks that the vomiting/weight gain are symptoms related to PANDAS, a GI Specialist thinks that it is an acid reflux issue or Cyclic Vomiting Syndrome. We are taking her to Dr. B, in August, to see if there are any underlying allergy/immune issues that need to be addressed and now this MTHFR has me wondering if that would fit it somewhere. If anyone could chime in, I would greatly appreciate information on it. Thanks
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I am posting this in desperation.....our Ped. is NOT on board. He thinks that we aren't dealing with PANDAS because we didn't have a positive strep connection and essentially got our diagnosis/treatment via email/phone consultation. All bloodwork and symptoms are consistent with PANDAS and we have already been dx by a PANDAS Specialist. Our pediatrician thinks we could have a psych issue (schizophrenic or bipolar). I am not sure how that is a possibility at the age of 5 and her symptoms were sudden and have slowly gotten better. He wants to refer us to a Children's Hospital to have a "team" evaluate her for everything from psych, GI, Immunology, Infectious Disease, etc. Almost all of her symptoms have gotten better, esp. while on abx, steroids, however he is persisting to get this work up done. I feel that it is NOT necessary as we are almost back to her normal self. We are also going to another PANDAS specialist next week for a second opinion. My question to everyone is - can we get in "trouble" for not following our pediatricians suggestions/referral? Is this a State by State issue? I am distressed by all of this and not sure what to do. If ANYONE could give me some advice, I would really appreciate it. Thanks and God Bless......
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Can anyone recommend a doctor that is well versed in OCD/PANDAS with children in Indiana or Illinois? Please PM me. Thank you!!
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Has Dr. B mentioned what the IgG Lyme band 41 is all about? Our daughter had that too. It showed present, abnormal non specific. We will continue to keep your family in our prayers.....
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Has anyone's child experienced a low grade fever while on the Prednisone Steroid Burst?
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Yes, our dd has severe intrusive thoughts...she was spending all day pacing and talking to herself. She had a IVIG a couple of weeks ago and they have started to decrease some.
Thank you both! I found another mother that was honest about what her child went through. It has helped me a little, knowing that we are not alone in this. Would you guys be opposed to a phone call from me?
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Anyone have any experience/advice on how to handle the intrusive thoughts that can present with PANDAS? My DD5 has improved since initial onset and we recently started antibiotics, but I heard these thoughts are the last to leave. Has anyone elses children had these issues?
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I agree on Inositol being the "safest' but yes, one has to start slow and low and gradually reach optimum
When my son's OCD was at its worst, and he had extremely severe side effects from SSRIs, the doctor suggested 5HTP and it really was remarkable
But it is not for longterm use
some people prefer the L-tryptophan version
Please excuse my ignorance, but I am confused. Will the OCD symptoms still be an issue, even after antibiotic treatment? Our DD5 just started Augmentin today and takes a total of 800 mg daily for 10 days. Alot of her symptoms got better before starting the antibiotics, but we are still dealing with the OCD stuff
I sent the doctor an email addressing my questions, as hubby spoke to him during the phone consult and didn't think to ask these things. Can anyone chime in?? -
My daughter has recently been diagnosed with PANDAS. We live in Indiana and I am curious as to how many forum members live in Indiana? Perhaps we could exchange contact information, as a form of additional support! I am new to this devastating disease and could use support, advice
I live the Southern Indiana, about 20 minutes from Louisville,KY. My dd7 had 1 exacerbation in September of 2010. We caught it quickly and is doing great almost 2 years later! PM me if you get a chance.
We live in Southern Indiana, as well! Our 5 year old daughter was just recently diagnosed by Dr. Trifiletti. We have a consult with him tomorrow to discuss treatment plans. I am hoping that we caught it early enough, as her onset was two months ago. I will send you a message
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My daughter has recently been diagnosed with PANDAS. We live in Indiana and I am curious as to how many forum members live in Indiana? Perhaps we could exchange contact information, as a form of additional support! I am new to this devastating disease and could use support, advice
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Have any of your chldren showed low IgE and IgG4 on any of their blood work? Dr. T said:
"After analyzing hundreds of children with PANDAS, I've noticed patterns of changes in the immune system in some kids. Skylar seems to show one of these (low IgE and IgG4); it's a pattern that I only discovered recently by looking at hundreds of kids' data. I only got to analyzing Skylar's data yesterday so this is why haven't contacted you sooner.
It's important that we do a follow up visit to discuss, this could be very important to why she developed OCD."
Just thought that I would add to this. We received information on our daughter's bloodwork today and this is what Dr. T stated:
"4. Immunoglobulins IgG, IgA and IgM are normal. However, several immune quirks are seen
A. IgG4 and IgE are both very low (for example IgG4 - expected 36, found 7)
B. IgG2 is relatively low (expected 267, found 205)"
Not sure what all this means, as we haven't had our consultation regarding these yet.....
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Hmm, yes ours our similar but DD has a positive IgG for ehrlichiosis. I don't think Dr. T tests for Lyme and co-infections, does he?
If your DD hasn't been tested, I suggest you do so through IgeneX. It could be her trigger...
There have been parents here whose kids have gotten PANDAS/ PANS/ PITAND from viral infections and vaccinations. Did she recently get a vax? Did Dr. T advise you on no more vax?
Where do you live?
No recent vaccinations. We live in Indiana, but lucky to have found Dr. T. She is a little better, but not 100% yet. She hasn't been on antibiotics yet. We just got results back today and will have a consultation to discuss everything in detail. I will address the IgeneX/Lyme/Trigger with him. I am thoroughly confused with all of this!
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All testing was ordered by Dr. T and done through LabCorp. He just sent us those results and we scheduled a phone consultation to discuss. I was just curious if anyone else had these type of results.
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We received lab results back on our 5 yr old daughter. I have attached the info. that we got from our doctor. Can anyone help me interpret this? ---------
1. Streptococcal titers measured three ways are normal. However, see below.
2. Mycoplasma titers are negative
3. There is no evidence of Lyme disease. The p41 on Lyme IgG is non-specific.
4. Immunoglobulins IgG, IgA and IgM are normal. However, several immune quirks are seen
A. IgG4 and IgE are both very low (for example IgG4 - expected 36, found 7)
B. IgG2 is relatively low (expected 267, found 205)
This cluster is seen in 70-80% of children with PANDAS/PANS and I call it the "PANDAS/PANS immunophenotype (PPI). When children with PPI encounter an infectious trigger, PANDAS/PANS symptoms may result.
5. Pneumococcal titers are low for 4/7 serotypes - this suggests she may be a "low strep responder"
6. Ferritin is low .This can be treated with supplemental iron
7. Vitamin D is very low at 15.6 . This can be readily treated with supplemental Vitamin D
Thyroid testing is normal, and there is no evidence of autoimmune disease.
Overall, her labs are consistent with PANDAS with a silent strep infection.
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We had all necessary testing done and currently awaiting to hear back from Dr. T. Does anyone know of any SAFE, natural remedies to give children to relieve some of the OCD symtpoms? Thanks again for this forum.....this has truly been a god send!!
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Thank you everyone! I am truly blessed that I found this forum!! Since my original post, I have been in contact with Dr. Trifiletti. He has been a blessing!! He ordered a series of blood panels to be done today. Hopefully that will give us some answers. Correct me if I am wrong, but if these tests come back "normal", can this still be PANDAS? I have read alot of information, but some is conflicting! We need alot of prayers right now.
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Hello Everyone.
I hope that I have posted this accurately, as I am new to this forum. I am at a loss and need some advice/direction. Around 4-5 weeks ago, our 5 year old daughter literally went to bed "normal" and woke up with "OCD like symptoms". This started as an emotional meltdown, saying that she thought she had drank bleach. My first reaction was panic and I questioned her, but she couldn't remember when or how she drank it. I was immediately on the phone with the on call pediatrician and we came to the conclusion that it wasn't possible for her to have drank bleach, or there would have been obvious evidence. Over the next day or two, she started crying and asking odd questions, such as "What would happen if I stuck a worm in my nose", she watched a cartoon where the character threw a ball at another cartoon character and broke down crying, asking "what would happen if I threw a ball at someone". She was going to the bathroom every 5 minutes, so we had assumed she had an infection going on and took her to the ER. They did a urinalysis and sent us home, saying that they couldn't find anything. We then took her to the pediatrician and they did an in office strep test and sent us for bloodwork (ASO Titer was done as well as toxicology to ensure there was no bleach drinking). We took her back 2 days later for a follow up and her regular pediatrician stated that all of her bloodwork came back "normal" and he could refer us to a psychiatrist if warranted, but he thought that "she was going through a developmental stage and was questioning things around her to see where they fit in her life". Her behavior progressed with constant "confessing" to things that she had thought she might have done, saying that she was having bad thoughts and didn't want to think those things. At one point, she told me that she "thought she hated me, but really didn't and didn't know why that thought popped into her head". We don't want to take her to a psychiatrist unless that is our last resort. We reassured her repeatly and have been very caring and informing her that all of these thoughts are normal (we don't want her to think that there is something wrong with her), we have been welcoming the "confessions and bad thoughts" and explain to her that these are clouds and for her to allow them to come into her head and let them float out. With this process, her crying spells have long gone, but she is occassionally coming to us for "confessions". I put on a smile when she is awake, but break down when she is asleep. I don't want my child to have to deal with all of this. I don't know what to do and not sure where to turn without having to take her to a psychiatrist and have her FEEL as if something is wrong with her. My question is - CAN THIS BE PANDAS, EVEN THOUGH ASO, STREP CAME BACK NEGATIVE? If anyone could please point me in the right direction, I would greatly appreciate it. Thank you and God Bless!!
We didn't know until Dr. T ran bloodwork to detect PANDAS. We saw Dr. K and he didn't seem to think there was anything to worry about regarding the immune issues and stated it was "good" in our case because insurance would cover the IVIG if we proceeded. We will be going to see Dr. B next month to address any potential allergy/immune issues or triggers.
Tests to request?
in PANS / PANDAS (Lyme included)
Posted
Hello everyone!!
We decided to get an Immunologist on board to check for potential triggers, so we have an appt with Dr. B in two weeks. I have received information on labs to request, but thought I would post to see if anyone else can add suggestions? A little bit of background - DD is 5, here are the deficiencies that showed up on Dr. T labs:
VIT D, IgA, IgG2, IgG3, IgG4 were ALL low, in addition to low pneumoccocal titers, abnormal P41 Band on WBlot. The only remaining PANDAS symptom that we are dealing with right now is an occassional intrusive thought (maybe 1-2 per week), and we have had other issues such as: weight gain, vomiting, small bumps all over body (like ezcema). I feel like we might have some allergy issues going on, in addition to PANDAS. Please forgive my ignorance, my head is still spinning from all of this. If any of the forum experts can chime in and tell me what I should request, I would appreciate it! Thanks and God Bless............