thereishope
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Posts posted by thereishope
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Here's another link that you may want to read http://www.mayoclinic.org/medical-edge-new...007/oct-29.html.
It describes what reactive arthritis.Just more food for thought.
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I'm not sure what I'm thinking to be honest. That sentence just stood out to me. Now I know you mentioned in other threads she's having other issues to and that you're upping her antibiotics. It'll be interesting to see if her "hotness" goes away aftre the new dosage after a few days.Definitey something to keep track of.
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I was looking up info for something and I stumbled on a sentence that made me think of your daughter.It was in a study about people who had recurrent strep infections then has a tonsillectomy.
"All of the patients gave a history of sore throat. Many whose tonsils revealed S. epidemicus had cervical adenitis, arthritis or arthritic pains. The removal of the tonsils in these patients resulted in marked clinical improvement. " (http://www.jstor.org/pss/30084659)
I guess strep and arthritic type pain can go hand in hand. So I guess one question is if your daughter still has her tonsils?
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dcmom....
Can you tell my inlaws that adults aren't suppose to be cruel?
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How old is he? Age affects how kids see things, whether they'll tease, etc.
In my son's school, one of the dad's of an autistic child held an assembly. He never directly talked about his son, but instead gave info and educated the school on autism. My son came home and just talked about what he learned. He never said anything negative. My son is 8. He was even impressed with the information he learned. It was a very good idea.
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At one point, my son wet his bed for something like 5 out of 7 days of the week. It lasted for about a month. We were trying to decide to take him in for a possible UTI infection when it just stopped. To give a timeline of when it occurred. His last + strep and PANDAS episode was late March. The month long bed wetting extravaganza was April through May. Now, he's back to no problems.
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My 5 year old had his tonsils out to try to prevent strep. He was on antibiotics for only 3-5 days after to prevent infection from surgery. He did end up getting strep again about a month later.He was not on proph antibiotics. Right now, knock on wood, he has been strep free for 5 months. I did not notice any symptoms reappearing shortly after surgery.
Did she have any PANDAS symptoms immediately prior to surgery? And how is she "reacting" to the surgery? Was she overly nervous about it? Is she having a hard time healing? I ask because stress can cause a slight setback.
I have hope that having his tonsils out will benefit my son. I know one PANDAS teen who said she had hers out because of being a strep carrier. She continued to get strep for a long time after having her tonsils out and she said one day it just stopped. She has been strep free for maybe a year and a half now, no proph antibiotics either. Like I said, that gives me hope.
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Here is a list of food that are rated worst for pesticides along w/ a score according to "Consumer Reports"....
Peaches, domestically grown (N. America)- 4,848
Peaches from Chile- 471
Winter squash, domestically grown- 1,706
Apples, domestically grown- 550
Pears, domestically grown- 435
Pears from Mexico- 415
Spinach, domestically grown- 349
Spinach from Mexico- 256
Grapes, domestically grown- 228
Grapes from Chile- 339
Celery, domestically grown- 255
Green beans, domestically grown- 222
For the full story, visit..
http://www.consumerhealth.org/articles/dis...=19990809222752
The Environmental Working Group also came up with a list of the "dirtiest" (and "cleanest") fruits and vegetables, in terms of pesticide residue you'll encounter in foods by the time they gets to the grocery store.
Peaches, apples, sweet bell peppers, celery, nectarines and strawberries top the list of the fruits and veggies to avoid, followed by cherries, lettuce, grapes (imported), pears, spinach, and potatoes; these are the best choices for you to buy organic and keep pesticides out of your kitchen. Incidentally, at the bottom of the list are onions, avocados, sweet corn (frozen), pineapple, mangoes, sweet peas (frozen), asparagus, kiwi, bananas, and cabbage.
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pixiesmommy,
Even though many PANDAS kids do get misdiagnosed w/ bipolar, don't freak out and stop any psych meds on your own. Instead, find a different psychiatrist. If you can't get to any mentioned in this forum, contact pandas network, or do the tedious job of calling psychiatrists and psychologists in your area. I called probably 20 psychologists and a few psychiatrists. You can always leave them a message or request that they be given a message to contact you. It's like a phone interview and you get a feeling of who is willing to help. And it's free. Outright ask them if they know what PANDAS is, if they believe in it, and if they've ever treated patients with it. I even had one child psychiatrist who had to google it when I spoke to them! I had another who said they knew what it was but then made light of the situation with a nervous laugh and poked fun at the PANDAS acronym.Needless to say, I did not send my child to them. Again, the phone calls helped a lot. And, let me add, all but 1 returned my call.
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First, one of the peds in the practice wanted to write off my son as bipolar. He's not and I have others backing me up. I think a lot of PANDAS kids get that. It's an easy out for diagnosis, but it just leads to the child being medicated for an unknown amount of time. If the child PANDAS symptoms get better naturally over time, the psych will take credit or give the meds credit, not realizing the child is actually better on their own. Do you have a known relationship between an infection (like strep) and behavior changes? Does your psychologist and psychiatrist believe in and treat PANDAS?
As for the eating, PANDAS can be responsible for eating problems, like anorexia.When my 5 year old stopped eating I wasn't sure if it was fear of contamination or just something telling him not to eat. But I knew the not eating was a result of PANDAS. I found websites saying it can be the cause of anorexia and realized I had to be very watchful. Now, his eating problem is different than what your daughter is doing. He would eat nothing at all. Once I started to get food back in him, it slowly resolved, but it took a long time. As of prrotein, it comes in a lot of forms, not only meat. Will she eat peanut butter, eggs, cream cheese. I believe low fat cream cheese has a higher amount of protein. Or you can buy pureed meat in a baby jar and mix that in some food. They sell ones that are strictly meat, no veggies included.
As for the bathroom problems, I have been fortunate not to have those problems, just bedwettng for awhile. It lasted on and off for a month then just stopped out of nowhere.
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When I read your post, I researched SC a little. It does seem like frequent headaches, even migraines w/ vomitting happens with SC. However I could not find anything about them going away. For some, they say it is a permanent headache. In one study it did say that CT and MRI's didn't find anything and they weren't much help, but if you can get one, I'd still go for it. Like you asked...why would they go away when he has a problem w/ movements....
Has he seen an opthamologist?
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I have a contact for, I believe, 19 year old girl who has PANDAS. She never did IVIG. She is doing well now. She has been in a case study, not sure which one, and wrote a story about her OCD for the OC Foundation. If you are interested in contacting her, I will send you her info in a message. Just let me know. She is very opening talking about it and wants to find others who have PANDAS.
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I understand the stance on the Zoloft. It does take I think 4 weeks (?) to take full effect.So, the psychiatrist will probably tell you the same. As for the steroid burst, it will take a few days for you to see any improvement. A neurologist is a good idea. I don't know much about antibiotics, so I'm never much help with that.Please let us know how he's doing later.
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Michele, did you talk to a dr before cutting back on his meds? Have you cut back on them yet? I really wouldn't give up hope. I'm still wondering if the other meds are making things worse. Granted, I can be wrong, but what if they are covering up any progress he is making from the steroid. I guess a question you can throw out there to the other parents is if any of their kids were on any other meds (besides antibiotics, specifically SSRI's) when they were doing the steroid burst. If so, how did those kids act?That's the opinion I'd be curious of. Do you remember how long it took for his bm's to regulate after going off the Omnicef the first time?
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I actually wrote them awhile back asking them to correct their information. Needless to say, they never responded. I don't think they cite that their q and a on PANDAS is directly from the NIMH website either. Copyright infringement.
Is that the website that says that PANDAS is an autism problem and makes it sound like IVIG will cure PANDAS?On the cidpusa website on the pandas page, they write "If you need help in getting IVIG approved CIDPUSA will help at a cost of $50. It is not easy but it can be done."
Does anyone know what they do to help?
Beware of snake oil salesmen.
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Is that the website that says that PANDAS is an autism problem and makes it sound like IVIG will cure PANDAS?
Here is a website that is supposed to help get the IVIG approved. http://www.cidpusa.org/PANDAS.htm It recognizes PANDAS as autoimmune and so does the autoimmune society. http://www.aarda.org/research_display.php?ID=47 It would make no sense a hospital would deny treatment to a recognized autoimmune disorder. Could your Dr. just be using this as an excuse? I know my ped was too afraid to do the procedure. Go to Dr. Latimer or Dr. K they will get it done for you. Good luck.On the cidpusa website on the pandas page, they write "If you need help in getting IVIG approved CIDPUSA will help at a cost of $50. It is not easy but it can be done."
Does anyone know what they do to help?
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My son had a bad setback w/ negative strep test and I was very confused. In hindsight, I think it was caused by an onset of seasonal allergies. A couple weeks after the neg strep test, his eyes were blood shot from allergies. I started dye free Benadryl and an uncanny timliness his behvaior improved as the redness from allergies disappeared. The behaviors can come back even w/ a virus. When he had a simple cold, the OCD and anxiety kicked up a little bit. When I gave him Ibruprofen it subsided. It was like a clock. At the 5 hour mark after giving Ibruprofen, the behavior would start to resurafced. Once the cold went away, the increase in OCD went away.
One other thing to mention is my son has residual OCD from having so many episodes of PANDAS in such a short amount of time. He's seen a psychiatrist and psychologist. He is not on any meds.Since he's 5, the psychologist, after 2 parent mtgs and 2 mtgs w/ my osn, decided to hold off on CBT and go with the "program" I had set up on my own. Each week I tackle a new problem. It is working amazing. As his cuts out more OCD the anxiety and mood swings seem to dying down too. The psychiatrist said the ODD we saw was probably a result of the OCD. I htink she was right. He's is sooooo close to baseline, not there yet, but I can see it on the horizon. In my son's case, I think Zoloft (the med she would prescribe him if we didn't see progress) would have made thiings worse. Have you tried various supplements that are suppose to help? I found them on the OC Foundationw ebsite and listed them under "bag of tricks" thread.
I also think soemone else on a thread said some SSRI's may react different in PANDAS kids.
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I know some of us mentioned we’d start a thread on the possible toxins that can affect our children and cause such things as autism, PANDAS, autoimmune disorders, etc. Keep in mind, most children may have already been genetically predisposed for an autoimmune problem, but when you add in all the toxins around us to that predisposition, the result may be what we have all seen.This is what I am contributing to that discussion for now. I know the majority of the things I am mentioning are food related, but let’s face it, there’s a lot in our food. Overall, I guess I would just say to read your labels, know that posting “natural” on products is not regulated by the FDA, High Fructose Corn Syrup (HFCS) will appear on the ingredient list of “natural” products, and sugar free a lot of the time means aspartame or Splenda have been added instead.
“Linda Birnbaum, director of the NIEHS, said while the causes of autoimmune diseases are not known, emerging research suggests they develop after one or more environmental exposures in genetically susceptible people."
Food dyes
http://www.cspinet.org/fooddyes/index.html
Center for Science in the public interest
“Important new research has shown that commonly used food dyes, such as Yellow 5, Red 40, and six others, are linked to hyperactivity, impulsivity, learning difficulties, and Attention Deficity Hyperactivity Disorder in many children. The Center for Science in the Public Interest has petitioned the Food and Drug Administration to ban the use of these dyes, many of which are already being phased out in Europe.”
Effect of mercury on the brain
http://www.facebook.com/group.php?gid=9963...&topic=9585
HFCS
This is one blurb I found
HFCS, neurological development, and autism
http://civileats.com/2009/01/29/one-more-l...p-chain-autism/
“There has been a previous association made between diet and autistic functionality — and specifically HFCS has been singled out as a cause for worsening the disorder. This means that there has been a growing body of evidence relating mercury to autism for some time, in which HFCS is only a new development.”
Genetically modified foods-if you have choice, choose an item that says “no GMO’s”.
Additives
http://www.cspinet.org/reports/chemcuisine.htm#fooddyes
List of additives and what happened in studies.
Effects of aspartame and Splenda
http://www.shirleys-wellness-cafe.com/nutraswt.htm#kids
Just because it says sugar free, doesn’t mean it’s good for you!
Autism and enviormental exposures during pregnancy
http://www.niehs.nih.gov/health/topics/con...utism/index.cfm
National Institute for Environmental health
“Twin and family studies suggest an underlying genetic vulnerability to autism, and a growing area of research indicates that the disease may be caused by an interaction between genetic and environmental factors. One hypothesis is that the disease may be triggered during early fetal development, and that environmental exposures during pregnancy could cause or contribute to the disorder”
Now this is just some of the toxins, imagining adding things like pesticides on foods, pesticides around your house, air pollution, etc. It makes you wonder how any of us are healthy.
Finally, I have signed The Safe Kids Chemicals Act and here’s a link if you wish to do so as well…
The human race is now polluted with hundreds of industrial chemicals – with little or no understanding of the consequences. Babies are born pre-polluted with as many as 300 industrial chemicals in their bodies when they enter the world. Please sign The Safe Kids Chemicals Act now.
http://www.ewg.org/kid-safe-chemicals-act-...-chemicals-act/
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All I can say is a person can have strep w/o a fever. To rule out diaper rash, try Bodeaux's butt paste. It's awesome and should clear it up if it's a bad rash. Here's a link to rectal strep symtoms. It includes a pic of what rectal strp looks like.
http://www.aafp.org/afp/20000115/391.html
With just having IVIG, I think he should just do swab and rule it out anyway.
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the doc that told us about pets carrying strep suggested a gerbil or a hamster.
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Does he have any cuts or bad scratches?
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Our doc said the same thing about dogs and other pets. A 3 week course of steroids is what they give for poison ivy. I believe it's not the same dose throughout. It gets lowered every week. In other autoimmune groups I've visited, they have had side effects like not being able to walk well, but they are on long term. Just keep your eyes pierced and bring up any concerns if things should change.
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I just wanted to make a comment about amoxicillan...
When my son got sick the second time, they once again put him on amox. His symptoms were not getting better in the same timeline as the first time. I called the peds office and told them I didn't think the amox was working. Well, after a few docs talking and the infectious disease doc saying he'd wait out the amox longer, The peds office, in order to shut me up, finally offered to change up the meds to Omnicef if I wanted. I took a couple hours to think about it. I asked if I switched if that meant they'd always start w/a stonger antibiotics for all infections now (something I learned w/ my daughter). They said yes. So, I decided to give the amox more time. Well, it did end up clearing up the infection. I would have jumped the gun too soon I think, in my case, I'm worried that he's going to become resistent to stronger ones. He's only 5. He has a long life ahead of him. I didn't want to gamble w/ that happening.
So, I think what I'm trying to say is to the new parents out there is to try the weaker antibiotics out there first. They do work for some. A lot of the parents on here who are giving stronger ones, tried the weaker ones first. Each child is different.
Echinacea
in PANS / PANDAS (Lyme included)
Posted
Is anyone giving their kids Echinacea to try to prevent strep? Since my son is not on proph antibiotics, I am trying to find other ways to ward off strep.