mom love

Yeah Wilma! You go mom! Keep us updated!

I don't even know what that is Emerson! Only you happenin teenagers know these fun drinks! All we know around here is water and milk! No juice anymore since we found out about the salicylate sensitivity. In your signature note you state you tested pos of lyme in August, but why are you not starting treatment til March? Are you on an antibiotic now for the pandas? Do you have high titers?

Emerson, It does sound like a digestive issue though, happening after you sleep for a while. Hopefully it won't come back! Drink only water after 6 or 7 and maybe that will help. Do drink alot of water.

Thank you for coming on here to share your story. Do you mind explaining what pulse steroids are? I have been considering steroids for my dd 8 but there are such a mix of responses reported, I'm trying to figure out if there is a "best" way to administer them. Thanks oh, and did you have the plas. after the steroids and did that continue the healing, or were the steroids the last thing that really spurred the healing?

Iowa Dawn Who is ordering the ivig through your local hospital and how did that process work for you if you don't mind sharing?

Nancy, Would you mind sharing what brand you use? I have seen so many out there (like at whole foods) many with other ingredients, and have seen querciplex. How would I dose that for dd 8 55 lbs? And that is only symptomatic use right? And can I open the capsule and put in food that you know of? Thanks!

YES! YES! YES! I would get a throat culture today and get the strep titer blood tests, ASO. and Antidnase b. Where are you from? If you are comfortable posting at least the general area, others can chime in to help with doctors. Read the helpful threads pinned at top of the forum. Print out information and bring it to your doctor. Ask if he would consider treating your child with abx because of this sudden onset. Was there an actual throat culture done? Yes, all those natural things can help, but if there is/was a bacterial infection antibiotics are needed! Go and get and read Saving Sammy.

Hi Musicbuff, Did that high fever come after the breathing fear? How long after? Was there a throat culture done with the fever in Nov? If it was strep, azith does not always cover strep, or a longer course would have been needed. If the fever and azith came after the breathing fear, I would say the wheels were already in motion. Let us know what the strep titers turn up. The anti dnaseb always takes longer. I would also suggest getting a blood test for mycoplasma pneumonia (aka walking pneumonia). That can be a trigger as well. I am interested in all the azith given for ear infections and just fever. Most docs in my experience give amox or omnicef for ear infections. I have recently discovered my son is sensitive to food colorings/additives and salicylates. You may want to read up on that and give it a go with an elimination diet for a week or so to see if you see a difference. I have no suggestions for CA but there are lots on here from there. Keep posting and reading. Another new person just posted and is seeing one of the best DAN! doctors in the country in so Ca.

Yes, well your DAN! doctor is one of the best if not the best! Good for you! I thought he was in Florida! And not accepting new patients! I agree with the omnicef 2X a day. If you go to www.drugs.com it gives a dosing chart and does give the option for either once or twice a day but for a more constant blood level I would do the 2x. I am curious about this enhansa. I just read another person's autism/pandas blog and she uses it. My dd is very constipated on the zithromax and any of our old things aren't helping (like fiber one bars, extra water, etc). Can anyone take it? Even on antibiotics? Where do I get it? dosing? etc. any info would be great.

I know a T&A is a very hard decision. We decided to do it for our 8yo and I don't regret it. Couldn't you have the docs check for anemia, monitor it, schedule the t&a and check right before surgery? Just a thought. Have you checked for mycoplasma pneumonia? Are you out east since you see Dr. B? If so, have you checked for lyme? Also, I am discovering a problem with salicylates in my younger. I have removed them and his frequent urination and separation got better. Just a thought to research and possibly try. I think there are lots of triggers for our kids once the damage has been done. I second the suggestion to try motrin dye free.

Hi there, The only thing I would add if it wasn't mentioned here already is checking for mycoplasma pneumonia. Omnicef is very good for strep but not myco p. zithromax or biaxin would be the choices for myco p. It is a blood test IGM and IGG. If you have a good Dan! doctor, stick with them. I think it is hard to find a good one. There is alot written about how DAN! doctors are now looking at PANDAS and PITAND as the new autism or looking at it when children don't respond to the autism protocol.

Hi Stephanie, Our doctor prescribed prednisolone 15mg/ml for my dd 8, 55 lbs and it was 9ml once a day for 5 days. Dr. T had confirmed that, saying he would even round it up to 10ml per day without needing a taper. We haven't used any yet but pharm said it lasts over a year. What is klebsiella? and how do you know they have it?

Our doctor told us that the child will pass if they pass at least 7 of the 14. Our daughter passed about 7 or 8 of them. She has had all her baby vaccines but will never get another vaccine while I am alive, so she didn't have the booster if there is one.

Thanks LLM and Vickie for your replies. Vickie, I hadn't really thought of added motrin, I don't know why. I will do that tonight. No one is sick that I can tell and she has no cold etc. symptoms. She does have two teeth coming in strong now that I thought about though. She does have this white sort of stringy stuff in the very back of her throat. She used to have alot of green post nasal drip back there before her T&A but not since. I wonder if she could still be draining white stuff from up under the adenoids almost 2 months after her surgery. Her uvula did only recently go down to normal size after the surgery. What do you think about the white stuff?

Personally, I would not add the steroids. I would do 21 days of augmentin and then keep up OLE. Have you used steroids on them in the past bringing them to 100% I am curious about using steroids myself and wondering how kids react on them, particularly with tics.

In case you don't know what the blood tests are, the strep titers are ASO Antidnase b Amoxicillan has a high failure rate for strep, like 30% when compared to zithromax and omnicef. I would try to get a second round of an antibiotic like augmentin or omnicef after you finish the amox. Print out some information from here, buy a copy of Saving Sammy and give it to your doctor and tell them you definitely think PANDAS is happening here and at the very least get the blood tests. If they are high, most doctors would continue to treat for strep I believe. Go to pinned links at the top of this forum. You can also post another topic here asking for doctors in your area.

Hi Wilma, I know you have been doing so much for your daughter lately since working with Dr. Trifilleti. I can tell you are desperate for answers and healing. I understand that. I am by no means an expert at any of this and have so many questions about my children's healing. I would say first of all, give it all time. Healing from anything takes time. I think Dr. T is a very good doctor and very thoughtful. I would also suggest doing a FULL immune system workup with someone like Dr. Bouboulis in CT. You can go to both Dr. T and Dr. B. Perhaps you will discover something about your daughter from the results. I would suggest going to Dr. Bouboulis' office to see him in person and become his regular patient because you are out that way. Having a neurologist and an immunologist could be very good for your daughter. You have to find answers. You could also consider a DAN! doctor who similarly is very thorough with testing. Google DAN! doctors for your state and go from there. Search autism on google and search www.generationrescue.com for information. Even if she is not diagnosed "autistic", DAN! doctors are thorough, similar to lyme doctors. A last thought I have for you is to make sure your daughter is engaged in "work" like projects and crafts etc. Much of that in your face annoyance can come from spirited children who are bored and need to be engaged, either with you or a friend or with a project. Make sure she gets outside to run and play to use some of that energy. Keep searching Wilma. It sounds like you have seen some improvement. Keep digging and try to be patient and confident that you will find answers.

I have been reluctant to try steroids on my child. She has a long lasting tic that has recently gotten worse again. We have added omnicef to her regular zith in case of strep exposure (tons of strep at school) but have not seen an improvement. At onset she was positive for myco p and strep titers rose with last exacerbation. I am curious about the "miracle" steroids have been for many on here but realize some do not last and others have negative reactions. I understand if there are yeast issues steroids can make it worse. Any experiences will be appreciated in helping me make my decision. Thanks. Mom Love

Denise, That looks like the ASO and yes, that is low, but it doesn't rule out pandas. Strep titers rise over time, like 4 to 6 weeks at least. Also, some people's titers do not rise even after a proven strep infection. Dr. B has stated this. I am sure the antidnase b was probably ordered if Dr. B is involved in her care now, and that one does take longer to come back. Also, remember that this is all really PITAND, infection triggered neurological disorder. It could be strep, mycoplasma pneumonia, lyme, virus etc. Your pandas doc just has to figure out what works for your child over time. Dr. B will order all the bloodwork you will need if he hasn't already.

That is a very interesting article. He is a nobel prize winner for co-discovering HIV and he received alot of backlash and doubt back then for it. There is a movement within the autism community reseaching more about PANDAS/strep and its role and likely link/cause of autism in many cases, especially for non responders to the DAN! protocol. My guess is that his study will show that antibiotics will show a significant improvement in the autism cases. Hopefully he will do all the microbe testing first for strep, lyme, myco p to know what the abx are helping.

Cristo, she was on the highest strep dose at onset, and has been for 4 months. We recently have lowered to 250mg per day. She is also on a second ab for a possible strep exposure exacerbation but so far not getting better yet.

thomasmom, biaxin is good for myco p I believe, and good for some streps, but not all. My dd had an exacerbation while on full strength zithromax (same family as biaxin), pandas doc recommended 3 weeks of augmentin for possible strep exposure, and she did get better, and her strep titers did rise after that so I believe the zithromax was not covering the strep. I do not believe augmentin covers myco p. sptcmom, we were pos for myco p as well at onset of this latest very bad motor tic. Really surprised us. So how is your child doing? Are there tics you are dealing with? How has your treatment changed now with a llmd? How does one get rid of intestinal parasites? How does one get them??? Eating meat??? What has gotten better? Does your insurance cover the llmd? Sorry to bombard you with questions.....

sptcmom, did you go through a llmd for all that testing? Who is treating your child now? a llmd? Thomasmom, we have a tic that has not gone away for 4 months now. Previous ones have disappeared either with abx or with time. I have to figure out what else is going on like you. This is very complicated. What is released in the brain when a person is excited or anxious? Her tic certainly gets worse at those times as well sometimes.

Dr. Bouboulis is in Ct and has an emergency phone number on his website.

Good for you! Persistence pays off! let us know about your other children? Didn't they have strep symptoms as well but not treated by the other doc??