ma23peas Posted March 8, 2009 Share Posted March 8, 2009 Thank you all who have prayed for our youngest! It has been a long road of doctors/tests and more tests..we know what she does not have but I have a strong suspicion of what actually happened and we're having to let her body recover. I believe the infection she had at Christmas was actually a strep infection, they treated it as croup and loaded her on steroids, three over 10 days to be exact...the steroids kept her body from fighting the infection and she developed post-strep neuropathies/myalgias whatever you want to call it...she had fleeting pains up to 150 a day that would last 10-15 seconds in a part of her body then move...she was weak and had no energy at times dropping to the ground b/c her legs 'couldn't hold her up'...in the midst of the past 12 weeks she then contracted fifths disease on top of all this other stuff..that took 2-3 weeks to resolve...then 10 days ago she developed strep...they gave her amoxicillin and 10 days later her throat was still hurting....went back in and her throat was still positive for strep. so they started her on Omnicef...I firmly believe that her body has just been racked and her immune system is so low that it's having a hard time fighting this round of strep (she might have had strep one other time in her life, I know one of my children has, just not sure which!)... The good news is that her pains have dropped to about 30 a day but they're more painful and usually more at night when her body is just exhausted. I am seriously considering having an analysis done by Palm Beach Nutrition that gives you a full breakdown of what is going on in your body based on a saliva test..has anyone here dealt with Palm Beach Nutrition or know about this zyto ?? scan they use? It's $100 for the results and of course they recommend their supplements based on what your body needs...PBN is a Christian based group and I appreciate their philosophy...just wanted to see if anyone else had this done?? Thanks for your prayers, we're just ready for her to have her health back, Tara Quote Link to comment Share on other sites More sharing options...
Ottakee Posted March 8, 2009 Share Posted March 8, 2009 I don' know anything about the natural stuff you are considering, but how about having her see a pediatric infectious disease specialist? They would specialize in resistant infections and might know how best to treat this and make sure the strep is GONE. Quote Link to comment Share on other sites More sharing options...
ma23peas Posted March 8, 2009 Author Share Posted March 8, 2009 The ID docs were consulted when she was just suffering from the pains/weakness but they said it was not their specialty, all docs have continued to say (because all her tests come back normal except she has shown some anemia after the parvo) that this is a complication of a post viral nature and there is nothing they can do to boost her immune system....her pediatrician said no one had ever failed this second antibiotic...we'll see...but for her to continually contract these things and her body not being able to combat it, the fifths disease took 3 weeks to get over...I contracted it and was over it in about 10 days...even if she did have strep in December, it's also required to run its course unless she develops rheumatic fever or glomerular nephritis...then they can treat those things, I am a strong proponent of modern medicine (heck, I was a pharmaceutical rep for almost 10 years) but here the modern medicine has hurt my child and I'm doing everything I can (fresh fruits/ veggies/fresh meats) to give her body the tools it needs to restore her...just not very well versed on the supplements these nutrition clinics espouse. Thanks!! Tara Quote Link to comment Share on other sites More sharing options...
Mere2 Posted March 8, 2009 Share Posted March 8, 2009 Ohh your poor DD :grouphug: Yes I would also try supplements and alternative medicines, organic foods etc. If possible I would also place a ''mini quarrantine'' in place, so your DD is not exposed to any more viruses for awhile. Whilst I realise that is very hard for any family, if possible that is what I would do (or have done when my DS gets really sick). If someone in the family has to go out, when they return have them shower and change of clothes before doing anything else (especially going near your DD). I know it sounds drastic but it does sound like your DD body is having to fight too hard to get better and needs lots of rest. Good luck Fi Quote Link to comment Share on other sites More sharing options...
Mommyof4ks Posted March 8, 2009 Share Posted March 8, 2009 I was going to pm you tonight to ask how she was doing, but you beat me to it! That assessment does sound logical, and if the steroids covered up that first strep infection...my goodness it is amazing that she has not been hospitalized. Not trying to be dramatic, but seriously. Hopefully she gets over this completely very soon! Have they checked her IGG levels to see if she needs IVIG to help get her body back up to normal immunity? Her body will probably recover on its own over time, but IVIG could help speed that up if the docs think it is warrented (it is a blood product that comes with certain risks though). I don't know anything about that company or the supplements that they would be offering, but have you checked them out with the better business bureau or looked around for any sites that might have anything negative to say about them? You could always ask the people at that company to provide you with solid evidence that you could check into on your own before committing to anything, but I am sure you already know that. :001_smile: We will continue to pray for complete healing for your daughter and peace for you and your family. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 8, 2009 Share Posted March 8, 2009 Have you thought of taking her to a naturopath? They would probably do tests like a saliva test etc. but would treat her with a combination of nutrition, homeopathic and herbal medicines to boost her immune system and anything else she might need. Quote Link to comment Share on other sites More sharing options...
MJN Posted March 8, 2009 Share Posted March 8, 2009 That's exactly what I was going to say, Jean. Have you thought of taking her to a naturopath? They would probably do tests like a saliva test etc. but would treat her with a combination of nutrition, homeopathic and herbal medicines to boost her immune system and anything else she might need. I would have her autoimmune system checked out as well. I have Hashimoto's, suffered from IBS and low adrenal/low thyroid all summer, and now lung cancer. It's suspected that because my body was so low in the adrenal/thyroid area, then the IBS came on, caused my immune system to crash and my gut wasn't working properly, that the cells mutated wrong and allowed the cancer to come in. A healthy gut means a healthy body. My heart goes out to you and your family. I hope you can find someone to help analyze what's going on internally. Keeping up the good veggies, low glycemic fruit, healthy protein sources, no red meat, no sugar, no refined carbs, nothing white and lots of good water and supplements would be what I'd be doing. I hope this doesn't sound bossy, just helpful. Many hugs and prayers for you all - Molly Quote Link to comment Share on other sites More sharing options...
Lovedtodeath Posted March 8, 2009 Share Posted March 8, 2009 I am a strong proponent of modern medicine (heck, I was a pharmaceutical rep for almost 10 years) but here the modern medicine has hurt my child and I'm doing everything I can (fresh fruits/ veggies/fresh meats) to give her body the tools it needs to restore her...just not very well versed on the supplements these nutrition clinics espouse. Thanks!! Tara I would consult a lawyer about a malpractice suit. Really. Treating Strep with steroids has wracked her whole system and many people can take years to get over this type of thing, sometimes being disabled with Chronic Fatigue type symptoms. A settlement from those responsible could help you to pay for your alternative treatments. I am not familiar with the natural health company you are referring to. My Natural Doctor can do an Electrodermal scan based on saliva. Is that what they are doing with it? Quote Link to comment Share on other sites More sharing options...
Ummto4 Posted March 8, 2009 Share Posted March 8, 2009 Homeopathy is my suggestion. I have a friend who had a food poisoning when she went to vacation in India. She basically became helpless and the doctors at US couldn't help her much. Finally she had consultation with a homeopath in Calif and she recovered pretty quickly. I have an asthmatic daughter who was pretty much uncontrolled by her med (asthma in combination to allergic rhinitis). The change was like day and night for us. She literally had bad asthma attack every 6 weeks or so. After homeopathic treatment, she almost never has any attack anymore, and when she got one they were mild. This same daughter also suffers from eczema which kept on coming every week or so even with steroid ointment. When we combine this with homeopathic treatment (with a homeopath specializing in skin condition), the frequency of eczema is much reduced. I did phone consultation with Deborah Olenev of http://www.homeopathyforhealth.net for my asthmatic daughter. My friend who had food poisoning also saw her. You should give her a try. HTH, Quote Link to comment Share on other sites More sharing options...
kalanamak Posted March 8, 2009 Share Posted March 8, 2009 Just a thought on the night time pains. I had some horrible bug as a 20 year old. Nights were the worst. I was racked with pains and spasms. When I woke up, I'd call out to my two roomates, and they'd come down and give me arm and leg massages (that is where the pain was). I was tired enough that with that little relief, I'd go back to sleep. If I felt I'd woken them too often, I'd try a quick hot shower first. Just a thought. What about a warm bath and massage before bed? Quote Link to comment Share on other sites More sharing options...
Lovedtodeath Posted March 8, 2009 Share Posted March 8, 2009 Oh I see, Zyto is a brand name of the electrodermal scan. I would not have gotten better without homeopathy. My body could not absorb the nutrients from food or vitamins, which is why I was deficient. If PBN has homeopathy as well as nutritional supplements then it seems like a good idea. If they don't do both, I would recommend going with Dian's suggestion. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted March 8, 2009 Share Posted March 8, 2009 One simple thing that has helped my girls---who both have IgG deficiencies and one also has IgA deficiencies is a good probiotic. I give them Suprema Dophillus EVERY day. I can't say for sure that IT is what has helped them so much but since starting this we have only needed 1 antibiotic (for a bladder infection) vs. the nearly constant antibiotics. I order mine on line but you can find some good ones at a local health food store. I also give them http://www.omegabrite.com but I can't say that helps with the immune stuff but it certainly helps brain/mood stuff here. Quote Link to comment Share on other sites More sharing options...
MBM Posted March 8, 2009 Share Posted March 8, 2009 Wow. Your poor daughter has been through the ringer. I would also suggest seeing a naturopath or MD who is knowledgeable about integrative medicine. After taking such strong antibiotics, I'd definitely get her started on probiotics. (Culturelle is a good brand.) Also, a diet high in soluble fiber should help the probiotics colonize; insoluble will help remove bile and toxins. http://www.drweil.com/drw/u/id/QAA262128 http://www.drweil.com/drw/u/QAA400246/the-point-of-probiotics.html Avoid sugar and refined grains as much as possible. Taking vitamin D3 might help, but if you do, work with an MD who can safely monitor her. Check out the chart regarding pain and D3 here: http://www.mayoclinic.com/health/vitamin-d/NS_patient-vitamind I think one of the best MDs who practices integrative medicine is Mark Hyman. See if you can get his books at the library. Most of them explain the process he uses to help his patients get well. Here is his blog: http://www.ultrawellness.com/blog Good luck. I hope your daughter feels better soon. Quote Link to comment Share on other sites More sharing options...
Remudamom Posted March 8, 2009 Share Posted March 8, 2009 I don't know what to add except my prayers. Quote Link to comment Share on other sites More sharing options...
Terabith Posted March 9, 2009 Share Posted March 9, 2009 I would definitely ask if IVG could help. Has she seen a neurologist? A good probiotic would definitely be a good thing. At this point, I probably would start looking at various alternative therapies. Homeopathy/ naturopath, accupuncture (can be decent for pain). Quote Link to comment Share on other sites More sharing options...
Paz Posted March 9, 2009 Share Posted March 9, 2009 My ds had a severe infection of some sort one summer that left him sick for about 6 weeks. We began using a product called immpower. This is a brand name. The active ingredient is AHCC. It activates killer cells to fight off infection. It has been used for cancer and those undergoing chemotherapy. We use it any time the kids are sick and run down. It is the best thing I know to activate the immune system. http://www.betterhealthinternational.com/productDetails.asp?prodID=AB1001 Quote Link to comment Share on other sites More sharing options...
ma23peas Posted March 16, 2009 Author Share Posted March 16, 2009 This has been such a struggle to deal with, but everyone here has been so helpful and I truly feel your prayers and good wishes when I come here...hoping someone may have had this issue and can encourage me... Daughter has been dealing with chronic post-infection issues since Christmas..the latest round is a strep infection (I am almost convinced she has rheumatic fever, going BACK to cardiologist to take a close look at her valves and heart)....with rheumatic fever it says you will have recurrent strep (my daughter has had strep maybe one time 4-5 years ago..but at Christmas I'm certain it was strep she had but they treated her throat closing off with steroid after steroid and never tested for strep)...well 3 weeks ago she got strep...my son also had it...so I had no reason to suspect they had not got it from the same source...my son was better in 2 days, my daughter is still sick...after 8 days on amoxicillin she tested positive again and her pediatrician said he had never had a patient fail on omnicef (I even made him knock on wood b/c I knew it would fail)...so we were at the ER last night b/c she crumpled on the floor in abdominal pain and her throat/low fever (99) were back..it was the last day of a 10 day course of omnicef..sure enough, she STILL has strep! So now she is on clindamycin....I am concerned about it causing issues with her colon b/c of her being on antibiotics for 3 weeks..has anyone been on clindamycin? After only 2 doses (she has to take 3 doses a day for 10 days) her tummy is hurting...so not sure if it's the medicine or the strep.. Anyone take clindamycin (may be spelling it wrong..) Thanks for your help!! Hopefully, tomorrow I'll have definitive answers!! Thanks! Tara Quote Link to comment Share on other sites More sharing options...
Only me Posted March 16, 2009 Share Posted March 16, 2009 I can't imagine what you are all going through. You and your dd have been in my thoughts and prayers. Please keep us posted. Quote Link to comment Share on other sites More sharing options...
newlifemom Posted March 16, 2009 Share Posted March 16, 2009 Tara, Thank you for the update so I can know how to pray. My heart breaks for you and your family. Be assured that my family and I will continue to pray for your dd. Quote Link to comment Share on other sites More sharing options...
Michelle in AL Posted March 17, 2009 Share Posted March 17, 2009 Hi Tara, just wanted you to know we've been praying for you both. Clindamycin will hurt your tummy, but it's a good course of treatment in this situation. I feel for your dd, all she needs is to hurt some more and I know as a mom you just want to take that all away. Many hugs :grouphug: to you both. Quote Link to comment Share on other sites More sharing options...
Remudamom Posted March 17, 2009 Share Posted March 17, 2009 Just adding more prayers for your dear one. Blessing her little heart. Quote Link to comment Share on other sites More sharing options...
Aggie Posted March 17, 2009 Share Posted March 17, 2009 No help from here, either. Many, many prayers. :grouphug: Quote Link to comment Share on other sites More sharing options...
unsinkable Posted March 17, 2009 Share Posted March 17, 2009 Have you looked into PANDAS? She is in my prayers!!! Quote Link to comment Share on other sites More sharing options...
elise1mds Posted March 17, 2009 Share Posted March 17, 2009 Make sure she gets some good probiotics since clindamycin is such a broad-spectrum antibiotic, but it should help. At least, I hope it does. Bless her heart and yours! Quote Link to comment Share on other sites More sharing options...
MBH Posted March 17, 2009 Share Posted March 17, 2009 Tara, More prayers on your behalf. God bless you. Quote Link to comment Share on other sites More sharing options...
Mommyof4ks Posted March 17, 2009 Share Posted March 17, 2009 Continued prayers for your family. I second probiotics with clynd. It is very hard on the tummy even with probiotics. :grouphug: Quote Link to comment Share on other sites More sharing options...
ma23peas Posted March 17, 2009 Author Share Posted March 17, 2009 I'm clueless, what are probiotics?? I have a consultation with a pharmacist who makes up a bunch of formulas based on your needs (family physician referred me to him)..couldn't believe I had to wait 2 weeks to get an appt. with a pharmacist!! I did buy some Nordic berries (multipurpose vitamins) that I've been giving her, but gosh, they recommend 4 berries a DAY! That would cost me $100 a month in vitamins alone! We've been upping her system with fresh whole foods/lean meats and she loves spinach salad with strawberries and almonds..she's been eating a lot of pistachio's (as much as you can popping them out of shells) and a variety..I buy organic milk and make sure she gets some a day...but I haven't a clue what probiotics are....thanks for your help!! Tara Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 17, 2009 Share Posted March 17, 2009 probiotics are acidophilus and related organisms that are beneficial to your digestive system. If you take antibiotics, the good flora in your gut is killed off, so it is necessary to replace it by taking a supplement. You can get probiotics at a health-food store or a pharmacy or even your grocery store. A health food store would probably have the most choices. It is best if it is a kind that has to be refrigerated as they are usually the most powerful and most "fresh" - I'm not sure if I'm putting that well but I've been told at my health-food store that the kind that needs to be refrigerated are the best. Quote Link to comment Share on other sites More sharing options...
Goldfinch Posted April 9, 2009 Share Posted April 9, 2009 Wanted to give an update!! She was on the clindamycin for 7 days when her stomach started cramping very badly and her stools were turning black and runny...immediately stopped it and after 3-4 days off the antibiotic she began to have her coloring return. Her activity level has gone WAY up and when we went for her annual physical the doctor said he did not even recognize this was the same child...I am CONVINCED she had an untreated strep, a symptom of that is recurrent strep infxns (this last one took almost 4 weeks to resolve) and she might have had one case of strep in her 9 years. She's still having odd little pains every now and then and sometimes she gets weak but more like 10% of the time rather than 80-90% of the time. I just want to urge parents to please demand a strep test if there is any question it may be strep...her doctors treated only the throat closing off and it was not 'their' experience that strep would ever do that, but I truly believe she had two things going on at the same time...all the steroids they gave her allowed the strep to make it's way through her nervous system and with all the chest pain she experienced I believe she was pre-rheumatic fever...it's the only thing that would explain her pale (very pale) coloring and lethargy...plus her heart rate would race up to 140-150 just walking around the couch, then in 2 minutes it would be 70... This has been a very hard three months for her but she's a trooper and to see her be able to jump up and around again is amazing. Thank you all for your prayers and I so appreciate your kind words! Tara (I had to change my username, they banned me b/c they said I logged in as a different user..I've been around these boards since the 2nd year they started them, remember the old format? When they made the new format I changed my moniker to ma23peas b/c the old one was my email address and for security my husband didn't want me using that anymore (software engineer)...with all the goings on, when I came to log in a couple of weeks ago, I guess I absentmindedly put the first username I had and they ban me?? I wrote to them 3x but the only response was that I was banned for having duplicate names?? I am hoping they can consolidate my accounts?? ) Quote Link to comment Share on other sites More sharing options...
MJN Posted April 9, 2009 Share Posted April 9, 2009 I have wondered how things were going, so I'm glad you posted good news. Molly Quote Link to comment Share on other sites More sharing options...
Lovedtodeath Posted April 9, 2009 Share Posted April 9, 2009 Thanks so much for the update. I don't remember "signing in" to the old boards at all. Wierd. Quote Link to comment Share on other sites More sharing options...
Mommyof4ks Posted April 9, 2009 Share Posted April 9, 2009 Glad to hear your daughter is doing better! I have been praying for her and wondering how she is doing. Hopefully from here on out she only gets better. Quote Link to comment Share on other sites More sharing options...
Aggie Posted April 9, 2009 Share Posted April 9, 2009 Thanks for the update! I'm so glad she's feeling better. When you post now, will you remind us who you are? I'll forget!:lol: Quote Link to comment Share on other sites More sharing options...
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