mom24
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Posts posted by mom24
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Hi! I have had JRA (currently in remission) since I was three and I have to tell you that sounds like a very high # for a child. I would strongly urge you to consult a Rheumatologist. I have heard that There is a good ped Rheum in NYC if you are in the area. I have LYME now too and its interesting to note that my SED rate is currently a 10 (I am a 40ish) and have joint pain totally attributable to my LYME. Is there one particular joint involved or several? Hang in there it will eventually get better :-)My daughter's Sed Rate has been elevated since November. In November it was 96, then 92. In December it was 94, along with elevated c-reactive protein. In March it was 80. Anyone else have an elevated sed rate for months? How much elevated? Normal is below 20 for my daughter's age.
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I am blessed (sometimes it doesn't feel this way) that I can stay home with my 4 kids. @ of my DS have PANDAS and LYME (One severe w/ bartonella). He is our 4 YO and I can relate to what you are saying. We are unable to go out unless we have one on one coverage for him. I leave him at home with our fantastic sitter. It is hard because I want him to learn how to behave, but when he is sick it is hopeless. It is very difficult when the whole family goes out since my husband lacks patience with the 4yo. He can often be aggressive and irrational---due to the OCD and PANDAS. It is extremely stressful and I keep hoping that we are tracking on the right path. We are fighting for IVIG for him now---which will mean 2 in IVIG if we are lucky. Stay strong and know that you are not alone (I tell myself this while people stare at us when he make a commotion while we are out at times). People that don't understand are ignorant and better hope that nothing like this comes there way, It is definitely a sign of immaturity. The sports thing is hard and we still deal with it often here (with my 9 yo and my 4 yo boys) . I have found a special soccer program for my 4 YO where he will have a one on one AND it is FREE!! I can't wait for him to start and to meet some of the other parents in this program. Hang in there!!
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HI! We are in need of a behavior therapist to go into our school for our 4 yo son. Thanks.
Found one
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Did my other post go up, sorry if I re-post this.
They discovered strep in DS1 again and drew him @ IVIG. WE were back and forth with the Dr but he finally agreed to clindamycin after we insisted 2 ENTs said it was "the drug" to treat strep. This helped DS1 and DS2. Myco has been another story here. We had a drug resistant strain here. DS 2 had IGM level of 2000 so Dr referred us to LLMD. Last check we went down to 1300 (baby steps
) when he was switched to clindamycin and bactrum (for LYME and bartonella). We will see when we take him to the Dr next time. DS 1 now has a IGM of 940 but is just on Clindamycin since he had a reaction to cipro---careful with that one if you take it long term. We just found out he has LYME too so need to re-evaluate his meds. Good luck and I hope for better health in your home.Bulldog24-can you really catch infections from your dog? If so what kind? Ironically our whole family of 6 here (except for a baby so far) has tested + on the Western Blot-----dog's frontline has kept her Lyme free. Pretty sure that she brought the ticks into the house though.
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If you go to the "helpful threads" at the top of this forum page, you will find several links to articles that explain the different bands and their significance.
I can understand your frustration. But knowing that you have a chronic infection to fight can acutally put you on the (long) road toward sustained improvements. I know it's not what you want to have to deal with, but the lyme dx was a blessing in disguise for my son.
Thanks so much. Just so frustrated. 5 out of 6 of us test positive for some form of LYME and 2 kids also have PANDAS one going through IVIG and one on a path to. I guess the important thing is trying to find the correct path! I will check out the links. It is hard for me to discern, at times, what symptoms are PANDAS related and what are LYME related. Hope your son is improving!
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So frustrated. I just found out that my son and I are testing positive on the western blot. Between us we are + for bands 23, 66 39 & 93. That means that out of a family of 6 the only person who is negative so far is our infant and our dog who we will be testing soon. DS also has a current Myco Plasma infection has PANDAS and has been undergoing IVIG. Sorry to vent.
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Hi! We are in need of a behavior therapist to go into our school and make an assessment as to whether or not the school is able to meet our 4 year olds needs. Thanks!!
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HI! We are in need of a behavior therapist to go into our school for our 4 yo son. Thanks.
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We had one family get their DS's IVIG covered through Anthem BCBS in California after contacting their Senator to intervene on their behalf. That's about it. But I believe there is more and more precedent for it and for pushing for it.
But this is what i want to know - if one of those girls from LeRoy ends up needing IVIG, with all that press attention - do you think there is ANY WAY their insurance would deny that coverage???? That's what I'm waiting to see.
Yes, I do believe they may refuse to cover it, because DENT is still claiming it's all conversion disorder, and with all the PR that DENT did, and convinced the press that the huge number who had high strep, mycoP and lyme titers supposedly means nothing, I suspect it is going to be just as hard, if not harder (but I hope I'm wrong.)
Anyway, as far as the question about getting IVIG. I would try the following:
1) Submit documentation showing how IVIG helped (before and after.) Include observation, and titers (if the numbers went down, that helps show evidence.) Has your child gotten sick less often since getting the IVIG? Is he starting to get sick more often since not getting the IVIG? That's the type of information you need to prove.
2) Include studies that show that IVIG works (the 1999 Lancet study is the primary one, and the NIMH is now working on a 2nd one.)
3) Speaking of the NIMH, I would include a copy of the website, and highlight the part where they talk about IVIG helping these kids, and also where they mention that an ongoing study is occurring.
4) What is your child's dx? Is it PANDAS or is it some kind of immune deficiency. If you can get verification (from an immunologist) that there is immune deficiency, you have a much better chance of successfully fighting this. If that's the case, then look at your policy's specific requirements to get IVIG for that specific dx (they do list it.) If not, you will have to fight it based on "off-label" use, and that typically requires 2 studies that have been documented in major publications (they're just working on the 2nd now, but the NIMH website might help you.)
We too have BCBS ---PPO. My DS is diagnosed as immune deficient. We get approved for a few then have to go for re-approval. Total approved is about 8 or 9 so far. Good Luck!!
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hello guy
no she meant ProBugs
It is kefir made by Lifeway for kids....I found it on their website
Shows what I know!
Thanks Chemar! My son LOVES Pro Bugs and I did not want to have to restrict them.
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Ooops I had wanted to post on this blog. Does a
nyone know if there is strep in "pro-bugs" ? They are a Kefir drink manufactured by Lifeway and I purchase them at Whole Foods. I emailed the company and they haven't gotten back to me. It is not listed on the ingredients, but I want to be sure since Dr T told us way back to avoid yogurt because of this. Thanks !! -
Anyone know if there is strep in "pro-bugs" ? They are a Kefir drink manufactured by Lifeway and I purchase them at Whole Foods. I emailed the company and they haven't gotten back to me. It is not listed on the ingredients, but I want to be sure since Dr T told us way back to avoid yogurt because of this. Thanks !!
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I would definitely give some ibuprofen.
Here is what I saw in the first few infusions- there would be a worsening and then he would get better. Yes I saw this happen more rapidly with each infusion, however the highs and lows were not as far away from each other so not as steep a roller coaster ride if that makes sense. Then, it was just improvements and evening out of all his symptoms and normalcy. Sweet, sweet normalcy.
If it is happening each day by the afternoon it sounds like he is tired and just can't hold it together. I might think about shortening his school day? This really helped my son. But then it just got so hard that we pulled him out. It was almost as if he needed all of his energy to recover. Just my thoughts. I began to think of my son like a rubberband. He would stretch far away and snap back (the highs and lows) and after being stretched all day or across the days he can't hold his shape any more. How many times could he be stretched before he didn't snap back? Taking the demands off of him really helped him heal in my opinion.
Penny
Thanks everyone. I really appreciate the feedback.
He did much better today(did not need to come home even with his teacher absent). The difference, I think, may be that the school nurse and I decided to keep him in during recess. He is VERY allergic to tree pollen which happens to be terrible here right now. I also think that he caught something post IVIG-came home and told me his classmate had strep his 1st day back . It probably doesn't help living with a little brother who has Myco #'s in the 1600s. We will continue to monitor. We have decided to start allergy shots and will do so this week.
I must say that tonight has been wonderful and it feels like DS is back much more today!! That being said I know that we have to take it day by day.
Thanks for the thoughts on Yeast also. We treated for that quite a while ago with a DAN. I think I will ask if we can re-visit the Nystatin (although I do give him high potency Floristar 1x a day) :-)
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ANY feedback would be really helpful:-)
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I'm new to this and here's my story. My son is now 3, but 6 months ago he had a sudden onset of tics plus behaviour after a response to a viral infection of the throat (did not test positive for strep). The past 3 months his tics + behaviour waned and he got an infection, a very high temperature a couple of weeks ago and now we are having the same episode. He has not been himself for the past 3 days, very hyperactive, sleep disturbance, defiant, physically aggressive, repeating the same song, which his baseline is not himself - happy, calm and precocious. His neurologist said to sit tight as it is to be expected with a tic disorder and it has happened before. I feel so helpless and to just wait it out and do nothing doesn't seem acceptable. I don't know where to begin. We got a second opinion from another neurologist and said the same thing about waxing and waning. What other doctors should we be talking to? I'm very worried.
I have 2 sons w PANDAS 9 and 4. My 4yo is what you describe and has been running a low grade fever (I didn't even know). Have you also considered checking for Lyme disease and myco plasma? DS4 has bartonella which is VERY similar to what you have described and we have been dealing with this since he was 3 and had no idea of what was causing the symptoms. It waxes and wanes. Our immunologist referred us to a Lyme Dr to treat that and he treats the boys who both have PANDAS. Also, some antibiotics have helped both immensely. You just need to find that right mix. Hang in there! Good Luck :-)
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So we are a few weeks off of our third IVIG. DS was doing great, but seasonal allergies seem to have kicked in and I think that he may have caught a bug also when he returned after IVIG. He was doing so well that we took him off of cipro (prior to this). He was still on Clindamycin though.
This is what I am noticing with his symptoms: He is good in the mornings, but as the day goes on school reports that he is getting "silly, hyperactive, and is clearly in a fog. Yesterday I got the call that I needed to pick him up. He was curled up in a ball on the bed in the nurses office no affect whatsoever. They were concerned about his motor skills (getting down the stairs safetly and the brain fog which was painfully evident---he has been having trouble since last week). His voice was also failing and eventually he stopped talking for a couple of hours (this was a first). 3 hours later he was "back" punchy, not "flat" and playing better than ever at his piano lesson. So I am finding that the peaks are high and the lows are low, but the difference is that he seems to be cycling in and out of this much more rapidly (and at times more severely) than before IVIG. Has anyone else seen this?? I am hoping that this is a good sign. The transformation was amazing.
Please excuse the rambling. I am very frustrated, but hopeful :-)
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I would treat it anyway. Find the strain, and get him on some antibiotics, and have him re-cultured in a few weeks - don't assume the short course of antibiotics they give you has taken care of it.
His tics could be the result of an underlying chronic infection or immune condition. Its may just be giving you a little peep at it with this culture being positive. Have his tics flared with this illness? Maybe you will see some tic improvement on the antibiotics - personally I'd get the antibiotics and start to chart if you see any tic or other symptom changes on the antibiotics. It would take at least a few days to see anything, sometimes a couple weeks, but if you start to journal now, you can compare.
Good luck. My daughter had this happen (she is non-pandas, but my son has pandas) - it was 3 days before leaving for a school trip and a camp (in France and England) so both the doc and I didn't want to take any chances with it and got her on the antibiotics.
This type of strep does not (at least is not documented to) result in post-infection disorders (like Rheumatic Fever, Dialated Cardiac Miopathy, syndenham chorea, and others)..."regular" strep can - which is why they give antibiotics for it on a regular basis.
I recently was treated for Strep C. It is an odd strain that even shocked our Dr. I have no idea where it came from. I did read that it is common in cattle....yuck. I eat mostly organic everything too. Thankfully my PANDAS sons did not contract it from me.
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My son has rages ...among every other symtpom of pandas.
His rages are...something is difficult or something doesn't work right and he stands up put his arms straight out in front of him and growls, screams, grunts, it's not pretty.
So is this a rage? he is 4 , 4 year olds are known for many things
He lives in a very calm, happy, loving home., so I'm assuming rages are just not a learned thing... Most of his symtpoms have appeared randomly thru the past two years., night terrors etc.
My son is also 4 and lately has been very volatile. if something does not go his way he makes fists and starts swinging. Our Dr said that combined w his rash that comes and goes, & increasing seemingly antibiotic resistant myco plasma # (current infection#) he thinks he is a Bartonella kid too, so we are in the process of exploring that route. Things have improved slightly during the 2nd week of Bactrim! Hope your son gets better soon.
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I have 4 year old twins with congenital LD. One child had OCD, rage behavior at 2 1/2. Dr. K, "PANDAS Dr" gave this particular child a preliminary diagnoses of Aspergers/PANDAS prior to discovering he had Lyme/Bartonella/Babesia/Mycoplasma/Viruses/KPU, etc. Both of the twins had immune deficiencies in their IgG 1s, 3s, overall serum, strep pneumo titers and elevated CAM Kinase. All these deficiencies were getting worse over time as we tracked them for a period of 1 1/2 years. I actually was pursuing hdIVIG for one of the twins but Dr. K was unwilling to administer due to age and lack of sudden on-set. When we eventually made it to an LLMD and discovered chronic infections it was his position that many of these things would resolve in time with treatment inclusive of immune deficiencies without the use of hdIVIG. Our twins are now 4 1/2 years of age and everything is improving as promised even the immune deficiencies. I do not take the potential of pursuing hdIVIG off the table 'if needed' for my twins but so far it looks like it will not be necessary in their course of treatment. Our older DS originally diagnoses with PANDAS then Lyme et al did benefit from hdIVIG but its been over two years since his last treatment.
I am attaching some notes from a recent Lyme conference. Dr. Ann Corson spoke at this conference and is a well respected pediatric Lyme practitioner. In the notes you see some comments on her perspective of PANDAS/Lyme/hdIVIG.
http://betterhealthguy.com/joomla/blog/257-bioresource-2012-conference
Wishing you all the best in getting your son well.
Thanks all for your thoughts. We see Dr. J this week and have many labs, rash pictures and behavioral videos (people can't even believe the rage until they see the video). Hopefully Dr. J will have some good insight and maybe like you, SF Mom, we can avoid IVIG and get our son back through the proper antibiotics. He is a chronic myco guy whose #s keeping going up (1600+) with probable Bartonella . Looking forward to having the appointment! I will also check out the links. THANKS :-)
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My 5 year old had IVIG and it went fine. If your PANDAS doctor recommends it, I would think it would be ok.
Thanks! We see Dr B and we are currently in the pre-approval process (the numbers show that he needs it). He may need treatment for a lyme co-infection first so we will consult the Lyme specialist first. How many rounds did these kids have? I know how hard it is for my older DS and it will be hard to watch my little guy suffer the side effects.
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We are considering IVIG for our 4 year old Pandas diagnosed child---possible Lyme coinfection. Has anyone done this with a child this young? He is VERY immune compromised and is constantly sick and symptomatic. We understand how it works and are currently on round 3 with our eldest. Any thoughts would be much appreciated. Thanks!
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Hi! I tried to PM msg you but could not. Have some info for you can you tell me how to send it? Thx
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Thanks!
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Hi all! Has anyone done IVIG on a 4 year old? This is something that we are in the process of getting approved for and are currently doing IVIG with our older son. Any feedback w/b much appreciated.
) when he was switched to clindamycin and bactrum (for LYME and bartonella). We will see when we take him to the Dr next time. DS 1 now has a IGM of 940 but is just on Clindamycin since he had a reaction to cipro---careful with that one if you take it long term. We just found out he has LYME too so need to re-evaluate his meds. Good luck and I hope for better health in your home.
Tourette's + Bipolar diagnosis for 6 year old
in Tourette Syndrome and Tics
Posted
Wow, you are dealing with a lot. What you describe reminds me of a combination of my two boys. Both have Pandas---bedwetting in the evening...sometimes accidents during the day and the baby talk are two red flags that they are in exacerbation (oh and some tics too). Both are BIG mycoplasma kids (one is also affected by strep and allergies). The rage --reminds me of the other son who will spin out of control at the drop of a hat and can be completely irrational. He is can be very rigid also. Dr J told me that this is caused by the Bartonella and Lyme.
I would try to have your Dr test for the following to start if you have not already:
Myco plasma IGG and IGM
ASO titer
Western Blot (the boys both test negative on the regular Lyme test---thank goodness our Dr does the Western Blot anyway or else we never would have known they were sick)
This is a great place to share your feelings since we are all going through/or have been through difficult times. Hang in there!!