MSmom
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Posts posted by MSmom
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My son got traditional metal braces at 14. He did worsen considerably. He pushed through it and he now has beautiful teeth. He homeschooled much of that time, so it wasn't as bad a time as it could have been.
My daughter has tried to wear Invisalign for the past two years, and we officially gave up on them a few weeks ago. She worsened every time she tried to wear them. She has several physical autoimmune issues as well, and those flared each time also.
Both of my kids have had PANDAS for years though (went undiagnosed), and they are both physically ill with immune issues, so they may be a severe case with the braces.
The orthodontis did say that the microtrauma from the braces has triggered flares in the immune system illnesses in some of his other patients as well. He was very understanding about the whole thing. (My daughter's was the worst case of that he's seen, though.)
MsMom
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Wow, thanks for this. This may explain why my daughter reacts so badly to long term abx (mentally) and to HD IVIG (physically and mentally.) She has many physical issues (autoimmune (Sjogren's antibodies) and metabolic), and we know for certain she has methylation issues (from DAN doctor), but I never connected this with the abx and IVIG problems. I did suspect that high dose IVIG was too much for her body. My daughter (and son) have been ill for over 10 years. They are young adults now. They have many issues going on, and we are beginning to lose hope. We don't know what else to do, since we've tried both abx and IVIG. Both of my kids are on many supplements, and we know for certain they are detoxing slowly, which the DAN doctor is addressing. They do improve on the supplements, but we need more. Winter is the worst, because they pick up infections. (They react with PANDAS symptoms to ANY infection now, not just strep. My daughter could not even wear invisalign braces, because the microtrauma in mouth from it set off her immune system. Not sure if there is hope for this severe of an issue.
MsMom
You may want to ask Dr T about methylation and transsulfuration pathways and get his thoughts on detox. If these systems aren't working properly, you could end up giving your son's body more than it can handle with a HD IVIG. The only reason I mention this is that it's possible that what you saw with the biaxin may not be a reaction to the abx but to the body's struggle to detox the die-off toxins. I know this sounds like a postcard from nut-ville, but I've come to appreciate that in kids who have been ill for a long time, there's probably more than one thing gone awry. Untangling the mess probably requires a slow and steady support program as a precursor to any aggressive treatments. Something to consider while you navigate the IVIG avenue.
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There is a huge body of evidence that says that autism is rooted in autoimmunity. Some autistic kids do recover with biomedical treatment. (Recover is the wrong word--more like improve dramatically. But will probably always need biomedical treatments.) It's all a mixed bag of autoimmunity---call it what you wish--PANDAS, autism, sensory integrations disorder. Just depends which symptoms they are unlucky enough to develop, and which form the autoimmunity takes on.
P
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No, we haven't done steroid treatments.
Yes, we tried several other antibiotics. My daughter (and son) both have quite a few physical ailments (immune and metabolic.) They are older (teen and early twenties), so the late diagnosis has probably hindered recovery. The autoimmunity has just gone on too long I think.
MsMom
Forgot to answer the second part of the question--yes, we use Motrin all the time for some relief (but doesn't help much.)
I wish there were a simple answer like antibiotics or IVIG. We've done both, and both worsened the condition for us.
MsMom
Have you tried any steroid treatments? If so, did your DD improve with that?
I think this is the first time I've seen somebody say that neither abx nor IVIG have helped at all. So you tried abx other than Augmentin? Does your DD have any other conditions that could further complicate the PANDAS or its treatment?
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Forgot to answer the second part of the question--yes, we use Motrin all the time for some relief (but doesn't help much.)
I wish there were a simple answer like antibiotics or IVIG. We've done both, and both worsened the condition for us.
MsMom
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My daughter's OCD got progressively worse, the longer she was on Augmentin. She improved tremendously when we discontinued it. I don't think it was a herx. It continued and worsened over a long period of time. We are unable to use abx for our kids' PANDAS.
MsMom
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I'm with you---my kids also have every one of those diagnoses, minus the rare anaplasma infection.
They eat frequently throughout the day, protein with every snack, lots of complex carbs. Also, fat at bedtime.
MsMom
Thanks, this is all super helpful. I am working on trying to feed him smaller meals throughout the day. Super interesting how all of these things come into play for our kids. Never in a million years did I dream I would ever say that my son has an autoimmune disorder, an immune subclass deficiency, a mycoplasma infection, a rare anaplasma infection, suspected lyme disease, and suspected hypoglycemia?! He seems/looks so healthy sometimes, all of his symptoms are psychological... except for the hypoglycemia, he is starting to say he feels awful physically now when I suspect his blood sugar is low, he just cries and can barely walk sometimes.
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Both of my kids have been diagnosed with both hypoglycemia and yeast issues.
MsMom
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Well said, Nancy. I believe immune and metabolic issues are at the core of all of this stuff, whether it's called autism spectrum, PANDAS, sensory integration disorder, etc. and that there is plenty of evidence of that. Many resarchers believe "autism" is truly an autoimmune and metabolic illness. Kids' "autistic" symptoms often improve with immune treatment, just as PANDAS can improve. All of these disorders probably occur in kids from a similar genetic subset. Different parts of the brain and body, different manifestations. I don't think the label really matters. I'm NOT saying PANDAS kids are "autistic." I do think they all have autoimmunity in common. They are all immune and metabolically challenged kids.
Just my opinion.
MsMom
Okay, so I find the glutamate thing interesting, but this is about the 10th time in less than two weeks that Ive seen PANDAS grouped together with Autism and PDD. This distrubs me so much. They are very different diseases. Autism and PDD involve dysfunction of the cerebellum, lack of understanding emotions and no language development, vaccine damage. PANDAS involves dysfunction of the basal ganglia... now the basal ganglia has an effect on speech, so there can be problems in that area but THEY ARE NOT THE SAME!! Im sorry but it really royally urks me to see these grouped together and I really think its wrong to do so. You can have PANDAS, you can have Autism and PANDAS, you can have Aspergers and PANDAS. 3 seperate entities. If glutamate is involved in all of them, so be it but dont group them together based on that alone.
First of all, nobody, including me, is saying that if you have PANDAS you are autistic or vice versa. But there DO appear to be points of commonality, and to ignor those is to ignor possible avenues of treatment, IMHO.
Secondly, I personally would not refer to either PANDAS or especially autism as a "disease." Autism is just a label slapped on a bunch of regressive behavioral symptoms when no other identified diagnosis exists. It's a "default," and it doesn't accurately speak to anything, really, given the very wide spectrum evidenced under that title. PANDAS, meanwhile, seems to be well-defined in terms of it's being an auto-immune disorder, but pretty much everything else outside of that appears to be up for grabs currently. Again, not unlike autism, you have this very wide array of associated behaviors, patterns of regression (from debilitating to none, as noted by dcmom), comorbidities (again, none to a lengthy, exhaustive list), differing responses to identical interventions, etc.
Thirdly, my son, along with several others of my acquaintance, WAS diagnosed with PDD in the depths of a PANDAS exacerbation, but those PDD behaviors have all disappeared with PANDAS -- not autism, but PANDAS -- treatment! So some behavioral relationship would appear to exist, however tenuous.
I hear the indignance in your response, and I get it. I've heard it elsewhere, too, when I've noted something that appears to be concurrent or coincidental between "regular OCD" and PANDAS. And it's not just PANDAS parents who don't like having their kids likened to "regular OCD" kids; some "regular OCD" people bristle at the mention of PANDAS, too, as though you're insinuating they've missed something in their treatment regimen and you're blaming them for having OCD rather than taking an antibiotic and making it all go away.
None of that is ever, ever my goal. Here's the thing. Each of these disorders -- PANDAS, OCD, autism, TS, etc. -- has this "unknowable" quality about it. Yes, they each now have some "standards of treatment," but everyone's still struggling to understand the full genesis of each disorder, the temporal relationships, triggers, full range of symptomology, behavioral expression, recovery versus remission, failure to recover or remiss in some instances, impact of physical and/or mental maturation, etc. And then there are the commonalities that continue to surface, glutamate being one of them. So is it such a stretch to consider what these disorders share, as well as what sets them apart? Couldn't we learn something from one another in that regard? If, instead, I stick to my side of the street and you stick to yours, we'll never know what we might've had in common or learned from one another because we're running on parallel courses.
Incidentally, as you probably already know, some cases of so-called autism have already been found to have auto-immune origins, too, so I can't help but think that any sense of "separation" on that basis is on shaky ground, as well. Consider:
Peace?
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I am so confused---I have been reading about sucrose levels in the different brands of IVIG. As I understand it, Gamunex does not have sucrose. I also read that Gammagard S/D does NOT have sucrose but that Gammagard Liquid DOES have sucrose. Which Gammagard is more commonly used--S/D or Liquid? Doesn't sucrose supposedly cause more side effects? And, if that is the case, wouldn't the fact that Gamunex is flushed with dextrose (another sugar,correct?) cause side effects too? Help! I'm going cross eyed trying to figure this out!
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I completely agree. My son is gifted with learning disabilities. It was very confusing for a while, until we found out about the LD. He functions MUCH better cognitively when he is feeling more physically well and when the PANDAS symptoms are milder. I think SOME (not all) of his diagnosed learning disabilities were actually from PANDAs. Daughter is gifted too, I'm sure, although she hasn't been tested, as she didn't exhibit any signs of LD. She was a model student, but then when her PANDAS hit HARD in 6th grade (she had actually had the symptoms on and off for several years), she presented like someone with severe ADD and also completely lost her short term memory to the point that she could not repeat what someone said immediately after they had said it.
I just wanted to throw something into the mix here, especially for any parents sitting on the sidelines of this discussion thinking "well, I feel my child is "gifted" and talented, but they are also exhibiting learning disabilities......."
Many kids with extra ordinary talents and abilities & IQs also can have LDs, especially when they are impacted with illness!
So "giftedness" does not exclude kids who also have LDs, or put another way, kids with LDs are not "un-gifted"
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I am curious about these same questions. My daughter had IVIG (1.5g) a little over a month ago, and she is worse than she was before. I know that sometimes things can get worse before they get better, but I'm getting nervous that the IVIG will not work for her, or will not work at that dose. We trust our PANDAS doc very much. There are just so many variables, and my daughter has had this for quite a few years now. She is quite physically ill as well, so may be a difficult case.
Hello everyone..please forgive me for bringing this topic up again as I know it has been discussed several times here and I have been advised from some of you so kindly but I am confused. I dislike feeling this way especially if I am trying to help my son heal.
Some parents here have said high dose IVIG is more effective than low dose IVIG.
Some parents have said low dose IVIG can make or made their child worse.
Some have said high dose is anti-inflammatory and low dose is pro-inflammatory.
Some doctors only do high dose IVIG.
Some doctors start low dose and gradually increase to high dose.
Please help me understand this...It's hard enough understanding PANDAS, well now I find myself wondering..if I am helping or hurting my child with this IVIG issue.
Do I see improvement from just 2 IVIG infusions so far? Yes, baby steps..but I see it and he feels it. Four more IVIG infusions to go...so I want to believe I'm helping him.
So please..any information will be greatly appreciated.
Oh one more thing...Is there proof, such as on paper that says high dose IVIG is more effective for PANDAS than low dose IVIG?
Thanks and best wishes to all..
Maribel
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My daughter (16) has had definite, measured vision changes, which began shortly after the PANDAS symptoms began (about 5 years ago.) I didn't really believe her at first, although she kept telling me her vision was getting worse. It was confirmed by the ophthalmologist (and then I felt like a bad mom!)
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Kim, I don't have much advice for you for local medical help in your area, but I wanted to lend my support! My daughter,age 16, has had several bouts of rheumatic fever illness following untreated strep, as well as PANDAS issues. It has robbed her of much of her childhood, as we didn't know what was happening until her last bout in 2009, but even when I figured it out, it was extremely hard to find help locally. Your son's illness does sound much like rheumatic fever, based on the symptoms and labwork--It's interesting that they changed his diagnosis. At least the doctors have realized your son needs abx until age 21 (although I agree that they may want to change it to a more effective one.) Our local docs were clueless and worse, a bit cruel, practically accusing my daughter of school avoidance (as she sat on the examining table, pale as a ghost, barely able to stand for 5 minutes at a time! I think they they thought Munchausen mom for sure!) She takes months to recover both physically and mentally following these bouts (close to a year.) In addition to the extreme fatigue, fevers, nausea, etc., she has to deal with the persistent thoughts and worries, confusion, lack of conentration, loss of memory, separation anxiety, and just anxiety in general. Thank God for this forum and the good medical help I have found because of it. I have felt in the minority here, having a child that is so physically devastated by strep, in addition to PANDAS. She just had her first IVIG a few weeks ago and is on Augmentin. I am praying this will be the turn around for her. She is beginning to give up. We have to travel for appropriate medical care, as there are no experts close to us. I hope you will find medical help close to you! (but if you can't, traveling is well worth it.)
P
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Nancy,
The dose is intended as both ongoing PANDAS treatment and prophylactic I believe. (She was just switched from Zithromax to Augmentin----She was on Zithromax for a couple of months as both a treatment for mycoplasma and prophylactic for strep.)
My daughter's dose sounds a bit lower than I am seeing on the forum. And I did wonder about the XR vs. the regular Augmentin.
Thanks for the food for thought. I guess I need to bring these things up the next time I speak to the doctor.
875 mg of regular Augmentin, twice a day. Does this like enough for a 155 lb sixteen year old girl?
Pam --
Is this dose intended as a response to 1) a current infection, 2) an ongoing PANDAS treatment or 3) prophylactic?
I think if you look up 875 mg. Augmentin, 2x daily, you'll find it is probably adequate for treating certain infections, including strep. There's a lot of anecdotal information out there, though, that suggests that perhaps either the XR (time-related) formulation of Augmentin or Zithromax are more effective at treating PANDAS. It could be because regular Augmentin's half-life is quite short, whereas Zith's half-life is very long (something like 73 hours, if I recall correctly), and the time-released formulation of Augmentin (XR) would theoretically leave the drug active in the body longer than the regular form, also.
On the other hand, I understand that some find the regular Augmentin to be more effective against PANDAS, perhaps because it actually has a higher clavulanic acid component than the XR version.
Lots of bodies of thought, unfortunately, and none of them necessarily applicable in every case; all our kids seems to respond differently to medications. You might search here on the forum for "XR" or "zith" or "clavulanic acid" or similar terms to get a broader perspective on the topic.
Good luck!
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875 mg of regular Augmentin, twice a day. Does this like enough for a 155 lb sixteen year old girl?
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Ok, thanks for the info!
Pam
We will be doing the Cunningham test soon. Would antibiotics affect the results? (We are getting ready to start them. Should we wait until the blood is drawn?) Would a 5 day Prednisone burst that ended on June 25 affect it? (We plan to have the blood drawn this week.)
Pam
A pred burst would lower the results. Let Dr. Cunningham know that your dd recently completed a burst.
Antibiotics shouldn't affect results.
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Both of my kids are going to have Igenex testing (Comprehensive lyme panel and co-infections.) I have antibiotic prescriptions for both kids, but I called Igenex today and was told to have the lyme testing prior to starting the antibiotics. This is the same advice I had received previously from an informed parent. One of my kids is also on Plaquenil, and the employee at Igenex told me to have her stop the Plaquenil for 14 days prior to testing as well. I'm going to comply with this, as I figure the purer the test, the better. (But it is killing me to have these abx prescriptions in hand and not be able to start them yet!)
Pam
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We will be doing the Cunningham test soon. Would antibiotics affect the results? (We are getting ready to start them. Should we wait until the blood is drawn?) Would a 5 day Prednisone burst that ended on June 25 affect it? (We plan to have the blood drawn this week.)
Pam
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Yes, this was the time frame for us too! My daughter's first devastating event was in late 2006-early 2007. She had a VERY rheumatic fever like illness with migratory joint pain, fever, abdominal pain and nausea, nosebleeds, heart murmur, palpitations,confusion, sensory problems, handwriting deterioration, and SEVERE fatigue. She was sick with this for many months. It happened again in 2009, but our new pediatrician figured out she had strep after it had been happening for a few weeks.
P
Us too! It was the fall of 2006 when all three of my children had strep and then 10 days later "WHAMO"! my son who was 13 at the time-goes off the deep end! Dr. T said once to me that there were a huge flux of PANDAS cases in late 2006-early 2007 which many believe was a terrible strain of strep going around.
Anybody else manifest on that timeframe??
Interesting! In the fall of 2006, my son suffered what appeared to be a series of three different infectious illnesses: (1) upper respiratory, (2) joints/muscles/"can't-walk," (3) nausea, "can't eat." Then January 1, 2007 all @*! broke loose. The joints/muscles/"can't walk" bug was nasty, but we just assumed it was a passing weird germ (like one my husband and I both caught years ago, that prevented us from lifting our arms for a few days). Hm....
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Thank you and good luck to you and your son! Keep on persevering.
Pam
Sorry you guys are struggling. I wish I had answers for you but I am trying to figure it all out too?! This is all completely confusing to me and I worry more and more each day too that I will not find the right solution for my son. Good luck and don't give up!
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Thanks JAG.
My daughter takes Plaquenil---it is a drug that is often prescribed for Lupus. She does not have full blown lupus, but does have some kind of autoimmune connective tissue disease/chronic fatigue health issue, so the rheumatologist she sees put her on Plaquenil. I'm not sure that would interfere with the steroid burst though. She fits all of the criteria for PANDAS, and also had a rheumatic fever type illness 3 times. along with the PANDAS, following strep.
It's wonderful to hear a story like your daughter's.
I will take your advice and remember to be careful of blanket statements.
Pam
hi PamFirst disclaimer; there are many brrrrilliant parents on this forum, several who do or could do this (bio-research stuff) for a living. I'm not one of them, I'm smart enough but most of this microbiology is too advanced for me to analyze with my (lack of) background knowledge.
Yes many PANDAS kids have lots of commonalities, at least one major run in with strep being the doozy, but the journeys; medical histories, immune system status, co-infections, symptomology presentation, cognitive status, access to treatment, age of onset, length of illness prior to accurate diagnosis and treatment, elevated titers/not, sudden onset/not, wax and wane/chronic, severity, ect., ect....... any broad statements about PANDAS children and therefore their effective treatment are going to be problematic.
My dd10 was taking two psychiatric medications when we did the 5 day burst; Focalin XR and Strattera. She took these meds because I could not send her to school without them. Is your child on any medication? By day 6, my girl was reacting differently to her medication; it was too much for her, making her anxious and jittery, so I started to cut it back each day. Her psych meds made a clear ah-hah response to the burst difficult to interpret. She had a few really great days, but I probably made too many changes to her other medication too fast and things went south and then improved again after her other meds stabilized again. So, she did have a positive response, but it wasn't without hiccups.
She is now 6 weeks post ivig and doing better and better each day. I know she is far from out of the woods. She's been healthy the whole 6 weeks. She's off all psych meds for the first time in 4 1/2 years. She physically looks healthier than she has in years; no longer pale, her skin looks healthy, her pupils are not constantly dilated like before; she was chronic and probably developed this over 8 years ago. She looked like a sickly kid, but was never sick, no long hx of strep infections, she's a fantastic distance runner, seemingly healthy except for behaviorally. She didn't fit the "published criteria" for PANDAS, probably bcs she's had it so long and at such a young age.
I pray her positive response continues. This has been her entire childhood. My best advice would be to beware of the blanket statements.
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Thanks Fixit. All interesting questions.
Yes, two docs have told me not to do the IVIG. These are integrative physicians I trust very much, but neither are well known PANDAS docs. One is a DAN doctor, a very brilliant man who is very much a PANDAS believer. He thinks that the risk of IVIG is not worth the possible benefit. (But he also doesn't use antibiotics for PANDAS--which in our case I believe has been a mistake. Had my daughter been on prophylactic antibiotics, I think we could have avoided her last episode of, not only PANDAS, but rheumatic fever, which stole her first year of high school last year (which was going so well--straight A's, friends) and has threatened to take away her entire teenage life.) The other doc is a very brilliant integrative medicine doc. He thinks that the IVIG benefit will wear off. Obviously opinions vary, so I have to weigh everything. But it does make my already confused mind much more confused.
Pam
if the burst doens't work....it is less likey the ivig will work..doesn't mean it wont....but those who do well on the burst may not do we;ll with the ivig
i wonder if those who failed the burst are just more likely to not do it and it messes with the ratios
i wonder if for those who had a delay in burst response aslo have to wait longer for the ivig to kick in..
ie ..if you see response to burst quickly...you see response to ivig more quickly...
so you've had 2 of these docs say it won't work?
just playing advocate.....maybe because the reality as we go forward with info....it seems like 2 ivigs are required at minimum.....
again.playing adovcate....just like when you read reviews....more people are likely to make a complaint about a product than write in when the product is great...
that being said...this is not a product..this is childrens' lives...and it would great if all the success stories were to be manditoryly posted
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Her primary symptom is obsessive worry about everythng she has ever said or done. There are many other symptoms (doesn't want me to leave her room at night, nightmares, anxiety, very concerned about cleanliness and order and germs, and other things) but that is the main one. She only does these things during PANDAS attacks. I don't mean normal worry. It is extreme worry that tortures her. She doesn't like to go anywhere or do anything, because when she returns, the worry consumes her. She worries about things she said 5 years ago.
When I gave the burst, they were pretty severe. Not the most severe she's ever had, but still very severe.
Pam
What were her symptoms and how severe would you say when you gave the burst??
Lab result questions
in PANS / PANDAS (Lyme included)
Posted
Vitamin D--- While mainstream medicine is still saying 30 is normal range, many many medical professionals would say 50 is a more appropriate minimum. Our DAN doctor supplements with D3 if under 50. And it takes a LOT of D a day to get the numbers up (we take 7000 per day, but you need to have it tested before you take this much D. Please have it checked before supplementing above the recommended dose, and use D3 only.)
Low IgG--my daughter's is in the 400 range, and the DAN doctor believes it is too low. He does not like the idea of doing IVIG to get this number up, but is treating her immune system as a whole.
TSH--My daughter's TSH was in the borderline "normal" range as well. Mainstream endocrinologist did nothing at that point. My daughter was gaining weight at an incredibly rapid rate and had all symptoms of an underactive thyroid--dry skin, extremely low body temp, in addition to the weight gain. Our DAN doctor did additional testing and found that, although daughter's body was making enough thyroid hormone, her body was not converting the thyroid hormone properly. He addressed it with supplements, and it corrected. All of the symptoms corrected, and she returned to a healthy weight.
Many PANDAS kids have severe immune issues that affect many parts of their bodies, in addition to their brains. My daughter and son are extreme cases, with severe chronic health problems. The immune systems and methylation pathways of these kinds of kids are typically a mess.
Dr. B is very knowledgeable about PANDAS, and very kind (we have seen him also, and my daughter did IVIG there. He was not the physician we needed,though, as my kids have had PANDAS too long, and their PANDAS is too complex (both were teens when diagnosed.) Dr. B was very helpful to us though, in that he detected daughter's mycoplasma infection, low IgG, and positive ANA, which no other doctors had found. Antibiotics and IVIG made my daughter's PANDAS worse, however. (I do believe IVIG can be helpful if the PANDAS is diagnosed early and young.) We now see a DAN doctor exclusively for the PANDAS issues, and he has been the most help of any physician we have seen.
Pam
(I am NOT a medical professional, and this is NOT medical advice. Always check with a trusted doctor before you try new things. And yes, finding a doctor you can trust is the tricky bit.)