

Ronnas
Members-
Posts
209 -
Joined
-
Last visited
Content Type
Profiles
Forums
Blogs
Store
Events
Everything posted by Ronnas
-
I would also think food is the culprit...fruit roll-ups etc cause green stools.
-
Hi Brenda, I am glad you are noticing an improvement with your daughter. Because your daughter had a positive strep result overall I would recommend asking your doctor for a prescription for azithromycin if she is not tolerating the amoxicillin. Your doctor can determine the dose. My son is 10 years old, and about 80 pounds. He received 500 mg day 1 and then on day 2 to 5 received 250 mg and now we do azithromycin 500 mg once a week. Azithromycin has a very long half life which makes this possible and giving the antibiotic once a day or once a week prophylactically is so much easier. My son can swallow pills...I am not sure if azithromycin is available in liquid at that dose. My son has done remarkably well on the azithromycin since the spring, no side effects and I am not kidding when I say it is the best 6 months we have had in 5 years. Goggle "azithromycin and NIMH and PANDAS" and you should find the lastest research article from the NIMH that you can give to your doctor to support asking for azithromycin. Take Care, Ronna
-
New PANDAS article in Prevention Magazine
Ronnas replied to CKJ's topic in Tourette Syndrome and Tics
Thanks for the post. Wow...I have been reading these types of articles for years and you know this article was pretty good for a magazine article...tho' I would certainly take issue with the title...brutal... Ronna -
Hi there, As far as "strep blood work"...I think it would be unecessary to put the family through each of them having bloodwork. I do think it is a good idea to have throat swabs done on the entire family. In our situation we swabbed everyone and we were SHOCKED when my one year old daughter came back positive for strep...she had no symptoms. As far as milk goes, you can use rice milk (I like it better than soy) and there are many sources of calcium (green leafy vegies etc) or a calcium supplement. I could echo the last post and I totally agree. My son's symptoms come and go. He is on prophylactic azithromycin and it has really been a blessing...his ups and downs are much less compared to the last few years. Although my son does "tic" I really don't care much about them...it is more the emotional ups and downs, weepiness and anger, that my son has when not doing as well that exhaust me. My son is 10 years old now and what I do think (and hope) is that he is outgrowing some of this. Having said this, it has taken a long time for me to accept that the tics, emotional issues etc. are just a part of my son, it is not going to completely go away, and there is no "cure" other than time. We don't go through the highs and lows anymore. At one time if he was doing really, really good...I would just grasp on to this...which would make the lows, even more devastating. By being more accepting of the ups and downs I don't go through the dramatic ups and downs myself anymore...I hope this make sense. During the good times we accept it and during the rough times I have good support set up with family (ie. if I am drained...I will phone my FIL to come pick him up and spend some time with him or my husband will have me drop him off at our business and give him some "work" to do). Take care, Ronna
-
With PANDAS I have read that girls tend to have more OCD behaviors and boys more tics. Did you see an improvement when she was on the Keflex? Could the food colouring etc/additives in the motrin be a trigger? I would have a throat swab done if she still has a sore throat.
-
Please give me your advice on antibiotics for PANDAS...
Ronnas replied to CKJ's topic in Tourette Syndrome and Tics
I am sorry for what you are going through. It was exactly 5 years ago that my son had the onset of tics, along with a dramatic change in behavior, and regression in school. I was a RN and for about a year and a half I was not online but worked with our neurologist and pediatrician who were both good doctors that I had actually worked with and trusted. Over that first year my son regressed quite dramatically and his tics were severe so we were referred to a metabolic geneticist to investigate neurodegenerative and metabolic disorders. My son was admitted to the hospital for nerve, muscle and skin biopsies. Following the surgeries my son developed a post op infection at the nerve biopsy site and was started on Keflex and we were discharged home from the hospital. Within 1-2 days on the Keflex my son was DRAMATICALLY improved, I just could not believe the change in him, it was stunning to say the least and I can still feel my relief at seeing his body still, and his behavior stabilized. I was extremely perplexed and typed into the computer for the first time "tics and antibiotics" and up popped information on PANDAS. I was absolutely floored. Once my son's 10 days on the Keflex was done within a few days all of his symptoms returned. I returned to our neurologist with information about PANDAS and he agreed to another course of Keflex and again we quickly saw improvement. However, if we discontinued the Keflex he would quickly deteriorate again. Our neurologist suggested trying pen VK (penicillin) prophylactically and my son showed no response to this antibiotic therefore, we switched back to Keflex. Over time this antibiotic was less effective and we switched to clindamycin with good effects. However, during that time I also found braintalk, and lattitudes and although antibiotics were helpful they were not the complete answer. We did a food elimination diet and found that he did better without milk, corn, eggs and chocolate. Milk by far was the biggest trigger. I nearly went crazy during that year looking for answers. I made so many changes all at once that I didn't know what was helping, what was making no difference and what was actually not good for him. In the end I found a naturopathic doctor, a pediatrician I felt comfortable with and I stopped everything and started from scratch...SLOWLY and realized this was going to be a marathon, not a race. I discovered that my son reacted badly to fish oil, but did better with a combination of omega 6 and 3 supplements. As far as probiotics go, my son reacted adversely to several before we found the right combination. My point in telling you this is that what necessarily helps one child may not help another child. I remember one mom posting that if her son was "raging" a glass of milk would instantly calm him down whereas in our situation milk just made my son go nuts. Even in the last few years so much has changed and doctors for the most part are more informed about PANDAS and there is at least now some good journal articles to show your doctor from the NIMH. You are in good hands with Dr. Murphy. Was trying the antibiotic azithromycin an option? I am not sure if it would help but it may be worth a try and you would know one way or the other if your daughter has PANDAS, given that if she does not respond to either the augmentin or the azithromycin positively then PANDAS can be ruled out. In my experience with PANDAS, part of it, is the dramatic improvement with antibiotics. I suspect Dr. Murphy is talking about antibiotics causing a problem with yeast and this being a trigger for tics and rages...it can be a vicious cycle. My suggestion would be to ask for a prescription for NYSTATIN to see if this helps reduce at the very least some of the rages if in fact yeast has become a problem. Have a look at your daughter's tongue, is it kind of "furry, and white"? Nystatin is a very, very mild safe medication. I worked for years in NICU and it is given safely to newborns. There are several yeast treatments that you can do using natural alternatives, we tried several and to be honest my son reacted badly to most of them, I know about the "die-off" effect but my son could just not tolerate it. I myself, tried threelac and seriously it threw me into a tailspin and really if that was "die-off" I'd rather have yeast! My son did fine with the nystatin. Are you using liquid antibiotics or tablets? If you are using liqiud I would also wonder if the food coloring used in it could be a trigger for your daughter. In summary, I would suggest... 1) Looking into azithromycin and asking your doctor about this. 2) Start thinking outside of antibiotics and PANDAS...read Shiela Rogers book, "Tic and Tourettes" 3) Consider nystatin to treat yeast, although this also has food dye and it is "sugary" so not good if these are a trigger for your daughter. 4) Look at doing a food elimation diet, I found doing a single food elimination diet the easiest. Basically, eliminate one thing for a week or so and then reintroduce and see what you notice...kind of a basic description...the book, "Is this your child" by Doris Rapp is very good at explaining more about food elimination diets. Remember, think of triggers as pebbles in your daughters shoes, if you remove 5 out of 10 pebbles she will feel better but it is best to remove as many as possible or all of the pebbles. I would suggest removing milk (casein) first, this included ALL dairy products. 5) Start looking in your area for a good naturopathic doctor if you are interested in vitamins, hopefully a doctor with experience with children with tics, rages etc. If you do look at vitamins it can be overwhelming and I would caution you to go SLOWLY, keep a diary, and only add one thing at a time. Do not add another until you determine whether something is helping, doing nothing or causing an adverse reaction. 6) More recently at night I have been having my son soak in the tub with 2 cups of epsom salts added (I bought a great big bottle of it at Costco for $6 dollars)...and my son really likes his nightly "soak" and is asking for it so I am thinking the Magnesium from the epsom salts must be heping him and I do think he is more settled in his sleep at night. 7) I almost forgot, certainly for many of us, we found that in the beginning eliminating "screens" was helpful. TV and even to this day, video games are a trigger for my son and he does tend to have an increase in rage type behavior if he has been playing on our PS2. At one time, I wondered how I could ever, "turn off" the TV and let me tell you our house did seem alot calmer without it, and the TV was not missed. 8) Ok, this is the absolute most important thing I can tell you...take care of yourself...this is OVERWHELMING, ask for help, lean on people close to you and although "researching" online and educating yourself is very important, take lots of breaks, limit your time on the computer, and know that with time this does get easier. -
Interesting chart! As always you are both in my prayers, I hope all is going ok. I wanted to post really quick our experience with "teething" and my boys. Really with Kurt I don't know if it is a trigger or not...certainly when he was 7-9 years and he was getting several teeth so many things were a trigger for him that I may not have noticed that getting a tooth caused any waxing. HOWEVER, I also have a son who just turned 8 and has been losing and getting teeth for about a year and teething is a trigger for him...now this is my son who does not have tics (ok, obviously he does, but they are soooo mild and if my older son did not tic I would NEVER in a million years know that my 8 year old has a tic while teething). He has one where he moves his top lip over his top teeth like he is stretching his nose, and may do a quiet HMMM, HMMM sound. So maybe it is possible that many, many kids tic while getting teeth and most parents do not even realize it is a tic.
-
Can it be PANDAS without strep or elevated strep titers?
Ronnas replied to Jordansmom's topic in Tourette Syndrome and Tics
"PANDAS" is an acronym for "Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections." Another acronym that appears less frequently in the literature is PITANDS (Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorders). The terms "PANDAS" and "PITANDS" may not be not wholly interchangeable. A. J. Allen, MD, distinguishes between PANDAS and PITANDS, where PITANDS includes triggering by bacterial or viral infection. In his usage, PANDAS would be a subset of PITANDS [personal communication, November 25, 2000]. While research has focused on bacterial infections, there are clinical reports of viral infections also being associated with acute onset or dramatic exacerbation of OCD or Tourette's Syndrome [see, for example, Budman et al., 1997]. Although the majoity of the research has been into strep (I think due to the ease of testing for it re: throat cultures and titers)...with time I do think that PANDAS will be shown to be a subset of PITANDAS. Given your son's positive results to the azithromycin the first time, hopefully he will follow with much the same this time. -
how to let a 5-years old girl agrees to draw blood?
Ronnas replied to firm believer's topic in Tourette Syndrome and Tics
The EMLA cream works well. Seriously...the more calm and matter of fact you are about the blood work the more your daughter will take it in stride. The whole thing takes just a couple of minutes, ask for a technician who works well and has experience with kids and in the end offer to take her to Wal Mart or wherever after and the whole time they are doing the blood work don't let her see the needle or ANYTHING...just tell her to look into your (very calm) eyes and talk about what her favorite thing is and what she wants to pick out at the store etc. The key is...the more calm you are the better she will do. -
My PANDAS story (another new PANDAS Mom)
Ronnas replied to CKJ's topic in Tourette Syndrome and Tics
I am sorry for what you are going through with your daughter. With time most of this gets easier to deal with. The really good news is that your daughter is seeing Dr. Murphy. Seriously, a few years ago I would have given ANYTHING to be involved in the research at the University Of Florida. Finding a understanding doctor, who understands even a bit about PANDAS is a challenge for just about everyone dealing with PANDAS and to be seeing a doctor specializing in PANDAS and actively researching it is truly a blessing. I think the University of Florida has 2 studies underway right now...not sure which one you are involved in. Is the study dealing with antibiotics at all or is it just tracking strep infections throughout the year? In our own situation my son did not respond to Pen Vk but when he was on Keflex for a post op infection we noticed a DRAMATIC improvement very quickly. Over time we switched to Clinamycin with good results and he now is currently on azithromycin with really great results. In the beginning doing a food elimination diet and eliminating milk, eggs, corn and chocolate was VERY helpful, we began supplementing with Bonnie's vitamins and the elimination of alot of TV and video game time was helpful. As a side I see that your daughter is on an omega 3...my son never did tolerate omega 3's but did well on a combination of omega 3's and 6's. He did tic more with just the fish oil and overall I don't think I personally react well to just omega 3's either so you may want to consider other factors as well outside of PANDAS, I hope things improve in the next few weeks and that your doctor's appt goes well. Take Care! Ronna -
WOW!!! On June 13th I set the goal for myself to run in a 10K marathon on Sept 23 (Saturday). I worked very hard all summer. Everydat I pushed the baby and my 5 year old daughter in a bike trailer and the boys rode their bikes while I ran. It was hard and every time one of the kids complained about "running" with mommy...I told them that when I set a goal I finish it, even if it is hard. I am in pretty good shape now and an awesome benefit has been that the kids are also in great shape at the start of the school year...Kurt is doing awesome at cross country running! Boy, oh boy if the dad in that video can do what he did...I can certainly suck it up this weekend and do 10K! Thanks for the lift! Ronna
-
Did you notice any difference while he was on the antibiotics for 2 weeks...what was the antibiotic? Ronna
-
Thanks! I have missed BT and I can't imagine what has been wrong for it to be down like this for so long. GREat pic...I am a visual person so I love seeing a picture... Ronna
-
Hi Allison, I have meant to reply to your question re: titers for awhile and today's discussion reminded me and I thought I would post the info here as it may help others in understanding titer levels. Ok, so when you see the doctor the most likely response to your question as to why your son's titers remain high will be...and I know that this sounds overly simple... when you are looking at "normal" levels...well you have to take into account individual variabilities. Some children do have chronically elevated titer levels which is normal for them. I have posted in the past and will do so again...the most significant part when looking at titer levels for strep is whether the levels are climbing (indicates more recent infection) or declining (recovery). If the titer levels are staying relatively stable regardless of the number then you can assume there has been no infection. A quote from the NIMH... [b]It is important to note that some grade-school aged children have chronically “elevated” titers. These may actually be in the normal range for that child, as there is a lot of individual variability in titer values. Because of this variability, doctors will often draw a titer when the child is sick, or shortly thereafter, and then draw another titer several weeks later to see if the titer is “rising” ? if so, this is strong evidence that the illness was due to strep. (Of course, a less expensive way to make this determination is to take a throat culture at the time that the child is ill.) [/b] In our own situation we can certainly look back and be fairly certain when my son had strep and the resulting PANDAS symptoms. However, once the immune system is primed to over react it will, for example one of my son's biggest set backs over the last few years was with the chicken pox. As well, even this summer we all had a viral illness and for Kurt he did have tics with the illness, the first we had seen or heard in awhile and they disappeared as the illness passed. However, as you know Kurt is on prophylactic azithromycin and doing well with this. It is my feeling that although viral illnesses etc do cause an increase in symptoms it is nothing compared to him getting another strep infection which we really want to prevent if possible. I hope this makes sense as I seem to be chronically tired lately and to sum things up...I would not get caught up in the actual numbers but look at their pattern instead. Ronna
-
Hi there, I sent you a message...I hope it worked...let me know if you received it. Ronna
-
Hi there, Chemar is right. Azithromycin/Zithromax is given once a day for 5 days if you go on it for strep etc. The half life for this antibiotic is very long...like 3-4 days...I'd have to look it up... which is why 5 days on azithromycin is the same as 10 days on another antibiotic. We actually fell into azithromycin for other reasons. Kurt was initially treated for a secondary staph infection due to a rash on his face from we think was a contact dermatitis from sunscreen last spring. After having kind of a topsy-turvy spring he did remarkably well when on the azithromycin for the staph and therefore we began to really consider it prophylactically. My doctor is concerned that over time he may not respond as well to the azithromycin as per our experience with keflex and clindamycin but so far azithromycin has been such a blessing and he has just been soooo stable these last few months...I guess time will tell...with experience I know just to take one day at a time! We did do a 5 day course of azithromycin and then went to 500 mg once a week as per the NIMH research paper. I would say our experience closely mirrors the conclusions found in the paper. Ronna
-
Hi Allison! I just got home last night...two months at the lake with the 4 kids...I'm A BIT ready for school to start! I am catching up on everyone and wanted to add our experience this summer...funny as you were stopping the prophylactic antibiotics we were starting again! Based on the newest research for the NIMH (I think I posted this article last June) we started Kurt on 500 mg azithromycin once a week based on him having kind of an unsettled spring...for along time we treated him as necessary with Keflex and for a few years this worked well but over time he responded less favorably to it. I showed the NIMH article to my doctor and she agreed we should go back to prophylactic antibiotics and I was pleasantly surprised to find that she was much more informed and supportive of a PANDAS dx that ever before in the past 5 years when it felt like she did alot of things to kind of "humor" me...anyways, she seemed to be much more on board now. THE RESULTS: (knock on wood)...Kurt has had his best summer in fve years...no kidding! He has had really minimal tics (only a few days of minor tics during a viral illness we all got a few weeks ago), and most importantly to me his behavior has been really stable and predictable and very age appropriate. Interestingly at one point this summer I missed the dose one week and I really did notice a big difference in terms of his behavior (weepiness etc)...once I realized we had missed it and gave it to him he improved noticeably within two days. The absolute best, best part of using the azithromycin is that it is once a week and therefore easy to do the probiotics, vitamins etc...though I have been a little lax on this...I'm going to work on this now that we are back from the lake...what a big difference from giving the antibiotics every day! He has not had any side effects that I can see. I hope your son continues to do well...I will find the article from the NIMH and post it again on this thread for anyone who has not read it and are interested. A link to the article I mentioned. Ronna http://intramural.nimh.nih.gov/pdn/pub-9.pdf Snider, Lisa A; Lougee, Lorraine; Slattery, Marcia; Grant, Paul; Swedo, Susan Antibiotic Prophylaxis with Azithromycin or Penicillin for Childhood-Onset Neurospychiatric Disorders Biol Psychiatry 2005; 57: 788-792
-
In our case we saw a DRAMATIC improvement within 48 hours. When we first discovered PANDAS my son had severe tics and was being assessed for neurodegenerative and metabolic disorders and had skin, muscle and nerve biopsies. He developed a post-op infection at the nerve biopsy site and was started on Keflex. We were shocked and AMAZED at the improvement we saw with the keflex. He went from a kid whose every waking moment was spent ticcing and he was begging me to make it stop (he was 6 years old at this time...he's 10 now) to his tics almost completely disappearing within 48 hours...it was stunning. I typed antibiotics and tics into the computer and was stunned when I read about PANDAS/rhuematic fever/sydenham's chorea. Since that time antibiotics have always helped tremendously when he has tics, which in our case are ALWAYS in combination with weepiness (emotional lability), separation anxiety, and oppositional behavior and his response is always within a few days.
-
Antibiotic Prophylaxis with Azithromycin or Penicillin for Childhood-Onset Neuropsychiatric Disorders BIOL PSYCHIATRY 2005;57:788-792 A very good article and well worth reading as a parent dealing with PANDAS and a good article to print off for your doctor. I am once again considering prophylactic antibiotics given the outcome of this study. http://intramural.nimh.nih.gov/pdn/pub-9.pdf
-
A good place to start... http://www.enzymestory.com/PANDAS.html http://intramural.nimh.nih.gov/pdn/recent_publications.htm
-
A possiblility could be...guttate psoriasis. Guttate psoriasis often comes on quite suddenly. A variety of conditions have been known to bring on an attack of guttate psoriasis, including upper respiratory infections, streptoccocal infections, tonsillitis, stress, injury to the skin and the administration of certain drugs (including antimalarials and beta-blockers). A streptococcal infection of the throat (strep throat) is a common guttate psoriasis trigger. Strep throat can be present without symptoms and can still cause a flare of guttate psoriasis. Talk with your doctor about getting a strep test to determine if you have an underlying strep infection. Guttate psoriasis may persist despite clearance of the strep infection. Some doctors prescribe antibiotics to help prevent an occurrence of an infection that can cause the outbreak of guttate psoriasis.
-
Hi there, I actually can't imagine a time when I had so much time to reply to posts, it has taken me days to reply to your post just by working on it a minute here and there! so if it doesn't make sense please forgive me...now...I need to saythat I don't want anyone to think that I am a PANDAS expert...I'm not! I have read alot about it, talked to doctors, but mostly I am just an expert on my son, not on PANDAS or TS. Two good journal articles about PANDAS are: http://pediatrics.aappublications.org/cgi/...ype2=tf_ipsecsh http://www.cmaj.ca/cgi/content/full/165/10/1353 The clinical value of PANDAS rests on the promise of antibiotic treatment, and here the results of controlled trials have been, at best, inconclusive. Penicillin prophylaxis in one controlled study didn't prevent exacerbations of tics and OCD, but it didn't prevent streptococcal pharyngitis either. For now, the most compelling case for the value of antibiotic treatment comes from an uncontrolled study of 12 kids who met PANDAS criteria and improved with antibiotics, and from the testimonials of clinicians and investigators who have seen tics and OCD symptoms disappear in individual children treated with antibiotics. But clinical observations of this sort, convincing as they might appear, mislead at least as often as they point to useful information. Clinicians who have given antibiotics to children who meet PANDAS criteria have not been uniformly impressed. However, it is expected that soon Swedo will publish a study that says that the antibiotics do make a difference, although I would be surprised if this study supports the use of prophylactic antibiotics. Many doctors believes that PANDAS does exist and when they sees a child with acute onset of tics or OCD, they should get a throat culture (do not rely on the rapid test) and check antistreptolysin O (ASO) and anti-DNase B titers. Elevated ASO and anti-DNase titers in association with exacerbations of tics is suggestive of PANDAS, however, serial anti-DNase B levels are needed to observe "trends" ie. are they increasing ( it's the change in titers that reliably indicates recent infection) vs. decreasing (recovering from an infection). Of note: In Canada the ASO titers can be done but it is difficult to get the anti-DNase B titers done. Nevertheless, when these lab tests are elevated it raises the possibility of recent or current streptococcal, and antibiotics should be prescribed. Neurologists have, in general, been more critical of the PANDAS concept than pediatricians and child psychiatrists. Part of the reason may be that neurologists see more children with tics than with OCD. Typical OCD has a gradual onset and a stable course and is quite resistant to treatment. An acute onset or exacerbation of OCD, as described in kids with PANDAS, is different from the usual OCD course. But the course of PANDAS tics is not all that different from that of ordinary tics. As Roger Kurlan, MD, a neurologist at the University of Rochester School of Medicine, points out, tics have a waxing and waning course and get worse with any sort of stress, including that of illness. That tics worsen in the context of streptococcal infection doesn't necessarily mean that the pathogen has a specific etiologic role. More than likely genetics and the environment may ultimately be found to play a role in disorders such as obsessive-compulsive disorder, Tourette’s syndrome, and PANDAS. As others have described already, antibiotics for sure helped my son tremendously but in the end they were not the magic bullet. We needed to address diet, and vitamin def. as well and help to build his immune system. My son now is not on as many vitamins and we are more free with his diet, however, I still believe strongly in essential fatty acids, probiotics and in our case limiting casein (milk) and there are still times that reducing "screen" time is helpful. In our experience it is most illnesses that will trigger a "PANDAS" episode and I have read that once the immune system is primed to "overreact" it will. I know for us one of my son's biggest setbacks a few years ago was with the chicken pox. Although the focus is mostly on PANDAS and strep you may also want to read about PITANDS. What to do if you suspect your child has PANDAS Contact your pediatrician. Advocate for your child by being clear about what you want your doctor to do. In some cases, you may have to find a sympathetic doctor who is willing to learn about PANDAS. The PANDAS Clinic at NIMH may be willing to consult with doctors. Have your pediatrician do a throat culture of group A B-hemolytic strep. Ask that the specimen be cultured, not just the rapid test. Your doctor may also do a blood test to assess elevated streptococcal antibodies (Anti-DNAse B and Antistreptolysin titers (ASO)). You and/or your doctor can get information and treatment guidelines from the National Institute of Mental Health (www.nih.gov); type in PANDAS to access the appropriate link. Contact the OC Foundation ot the TS foundation to help locate an expert in OCD in your area. Have your child retested if there is a resurgence in OCD symptoms/tics. Treatment focus: The first line of treatment for PANDAS is antibiotics to cure the strep infection. Sometimes repeated antibiotics may be necessary. Treat all strep infection aggressively with antibiotics. * Be sure to complete the course of antibiotic treatment to avoid development of resistant strains of bacteria. * Make use of proven therapies such as cognitive/behavioral therapy and serotonin medication (SSRI's) as are utilized to treat the more usual forms of OCD. * The "quick" strep throat culture is not accurate enough for demonstrating the presence of streptococcal infection. The older method of incubation of a throat swab on agar for 48 hours is far more accurate. * In addition to throat cultures, there are blood tests that the pediatrician can request to help identify the association of strep infection and exacerbation of symptoms. These include anti-streptolysin O titer and anti-streptococcal DNase B titer. Let me know if you have any questions, although I don't have much time to post I always read everyone's posts and I try my best. Ronna
-
I had an email from a mom inquiring about plasma exchange info. I have had some computer problems lately so I could not reply and now I do not have the email you sent. I have read alot about Plasma Exchange...not sure what to say. Very controversial. It would not be a choice for us but for others it has been. In Canada certainly you will not find a doctor who would approve of it and in the states it is hard also to find support for this and it is not recommended by the NIMH. It is a very drastic procedure with risks but Itruly understand the reason why a parent would consider it...at one time I was there myself. I hope you see this and when I have a minute I will try and round up some info. Ronna
-
Hi there, My computer has been broken (a power surge thingy ) but it is finally sort of fixed...anyways...my son's ears always turn red after eating dairy. Doris Rapp talks about this in her book..."Is this your child"...this book is worth the read. Ronna
-
Sunshine: It sounds like you are on the right track. Your son is lucky to have you! My goodness it is a rollar coaster ride! I do read the posts just about everyday and try to reply when I can...I am pretty busy with the kids and just life in general (I am an overachieving volunteer addict and it keeps me busy ). Allison, hi there! We did put Kurt back on antibiotics in January. Everyone in our family was sick off and on for about 6- 8 weeks...it was constant for awhile. We had the flu and STREP! My 7 year old son and I both had strep. My son's has cleared up...just this week I became sick again...yep, strep of all things so I am on my 2nd go with antibiotics. Anyways, interestingly Kurt was the only one to NOT get sick with the flu or the step...however, he did have an increase in tics, and some behavioral stuff...we stepped up the supplements, more strict with diet, and the antibiotics and he seems to have weathered the winter not too bad. Though for me I was just exhausted for awhile and quite concerned when Kurt's tics worsened with a few new ones thrown in...however, like I said in the other post my worries are so much less than they use to be because I knew with time they would subside and to be patient. It has never been the tics that have bothered me the most...more the emotional liability...he is MELLOW right now and it is so nice to hear, "ok mom" instead of crying and complaining about EVERYTHING from wearing mitts to going to bed, etc...anyways, take care everyone...although I don't post as much I am around! Ronna