thereishope

Char, what ever happened with Dr Latimer? Did she eventually call your son's doctor? How is everything going?

That reminds me what my reaction was when my son ate carrots a couple weeks ago. Since his PANDAS episodes, he hasn't eaten a vegetable. He became even pickier than he originally was and I kind of gave up offering him certain things even though he is recovered now.Then one day my older son asked why he has to eat veggies but his brother doesn't. Before I knew it my PANDAS son said "I don't know if I like carrots". He picked one up, ate it and said he kind of liked it. He continued to eat a whole serving. I ran from the table to call my husband and tell him. I'm telling you, as a parent who has lived with PANDAS, you find such joy in such simple things. Now if I can just get him to eat meat other than chicken nuggets....

Both my 6 and 8 year old get around 11-12 hours of sleep a night. I don't think it's too much. That's with having to wake up my 8 year old so he can get ready for school. Actually in kindergarten, the teacher tells the parents that 5 and 6 year olds should be getting 12 hours. My 3 year old sleeps about 12 1/2 hours. I don't know if what I have changed makes an actual difference but I don't want to stop it and find out! He's doing well right now. He has not had IVIG or PEX.

I use Benadryl when my son's allergies start. PANDAS behaviors surface with his allergies. I have no problems with Benadryl. It stabilies his allergies and, in turn, his PANDAS behavior stabilize as well. He is tired only on the first day I use it, but no rages, no hyperactivity, etc. Honestly, you may just have to try it to see how your child reacts.

I have also heard that meds may do more harm than good. What OCD problems is she having? There are therapies that can help her that do not include SSRI's. Maybe see a psychologist instead of a psychiatrist. A lot of times psychiatrists will want you to try therapy only first anyway. You really need to understand OCD to help deal and overcome it. I read the book "Freeing your Child from OCD" and it helped me develop strategies for my son. He doesn't have any OCD now and I feel I have more knowledge of what to do if PANDAS and OCD should resurface again.

My son had the flu surface on Sat. Just yesterday I was saying how happy I was that PANDAs did not resuface at all like it did when he had a cold earlier this year. Well, I jinxed myself. Last night, I saw a PANDAS behavior resurface. I totally freaked out. It didn't last long, but my heart sunk. He got extremely upset over something trivial, hid under the Little Tikes slide in the basement then when I tried to pick up the swing to talk to him , he ran to his room and cowared in the corner like he did in a previous PANDAS episode. I decided I would just ride it out and keep giving him Ibruporfen even though his fever was gone. Today I kept him home from school just to give him an extra day to recoup from the flu. I have not seen any more PANDAS come back except for one similar bout this afternoon. it was mirroring yesterday's except this time he didn't run and cowar after hiding under the slide. I am hoping after the remaining congestion is gone and his body is no longer fighting any virus, I won't see anymore PANDAS. His body has also been through a lot in the past few days including a very hgh fever. When he had a cold earlier in the year, the behavior went away when the cold went away. Also, when his fever reached 105, I did take him to urgent care to get checked out and had his swabbed just in case. I knew it wasn't strep, but I figured I was there anyway and I didn't want any regrets. His brother was at the dr earlier in the week for the flu and I had him swabbed and all was negative. Anyway, my PANDAS son strep tests were negative so I am sure his small PANDAS blip was due to the flu. I would recommend giving Ibruprofen to keep any inflamation down right now. Also, just give some space. I know I am finding myself questioning him and testing him. He's sensing it and I'm annoying him. I'm now just leaving him be and he's doing better.

My son had his expressive language tested a few times as part of his speech evals and it is fine. He does have a phonological speech disorder. Many parts of the brain are affected when a child as any speech disorder. It is also common for kids w/ speech disorders to have other disorders too like sensory.

I admit I do not really understand the human immune system. So, the immune system will produce strep antibodies for things like a cold even though it's not strep and that's why some of us are seeing setbacks with viruses? Why does the body produce the wrong antibody or does it produce extras just in case?

If you suspect soley ADD or ADHD, a psychologist or psychiatrist can diagnosis that. But ADD and ADHD is also a symptom that many PANDAS kids have while in an episode. I believe Sammy from Saving Sammy has ADD but Beth said she doesn't know if that is a result of PANDAS. I remember reading that somewhere.

When my son is in a full fledge PANDAS episode w/ a + strep test, he has a lot of OCD. If it is a precursor to a virus (not strep), he doesn't show OCD, but extremely short tempered, cries easy, etc. So, if the strep test does not come up +, maybe he's getting sick with a cold or something. You'll learn his own patterns as time goes on. Did he have OCD with his last episode?

My son has the flu and even though his fever spiked to 105 w/ Motrin AND Tylenol, his PANDAS symptoms did not resurface, that was such a sigh of relief because we've experienced resurfacing of symptoms w/ a cold and allergies before. He got sick on Sat.

My kids and myself have the flu too. Congestion is part of the symptoms for 2 of us and that is causing headaches. Can you hear any congestion? Also, if he had that annoying cough like my 8 year old had that would cause a headache from the constant forceful movement. As for the length, the doc says on average it lasts 5 days. However, for my 8 year old, the fever lasted 3 days, the overall tired and hacking cough lasted 5 days, but he still has an on again, off again cough 8 days after the onset of symptoms.

It seems like kids have different experiences w/ a steroid. Some have only temp relief. Some go back to 100% themself and stay that way. Also, the timeline in which the steroid begins to helps varies child to child. For my son, he got it rather shortly after contracting strep. He started prednisone 5 days after starting antibiotics. Since it was his second PANDAS episode, we recognized the behavior changes quickly and took him for a strep test. For him, I noticed it helped him plateau and stop spiraling down. Then he began to recover. He only had the steroid for 5 days. It did not bring him back to 100% himself, but it helped hault him from getting worse. He did not backslide after going off the steroid. Overall recovery for that PANDAS episode was 2 1/2 months. He did eventually go back to 100% himself. I then compare that to his 3rd PANDAS episode where he did not get a streoid at all. With that one, it took him 5 months to recover and his behvaiors weren't as bad as the one in which he received a steroid. That shows me, for my son, a streroid given early on is beneficial. I am hoping if he ever gets strep again, they will automatically give him a steroid. If they won't, I will religious about giving Ibruprofen for a few weeks.

My son continues to recover w/o antibiotics. Right now, our pattern, if he has strep, is he gets 10 days of amoxicillan. Usually by the time the script is done, I see some improvement. Maybe not great strides, but I can tell something is going on. After the script, he will continue to slowly improve over the course of months and eventually get back to himself. During that time he doesn't usually have dramatic setbacks. If he does, there is an underlying reason. It may be a cold, allergies, high stress, or another strep infection. When he had back to back strep infections and we didn't get improvement during the course of antibiotics, we needed a steroid to help jumpstart recovery.

So, you can compare some of what what my son has experienced compared to yours... My son had a big setback in in his behaviors when he had seasonal allergies this year. I took him for a strep test, convinced it would back +. It didn't. A week or so later his eyes were bloodshot. I couldn't see any white. That was his only sign of allergies this year. I started giving him Claritin and it helped at first but then made him very hyper. I switched to Benadryl and as soon as the red in his eyes subsided, his behaviors stabilized too.

I've really become more conscious of what I put in my children's bodies. I have tried to go more organic, I try to avoid food dye, high fructose corn syrup. They all get a multivitamin now, which I did not do before. I give my PANDAS son DHA, Omega 3's. He gets some DHA in the morning in his multivitamin and then the Omega 3's and extra DHA at night time before bed. I figured it was a good idea to give him some at night when a lot of the processing occurs in the brain. He's a kid's kid. He will only eats gummie vitamins. But I have found some at Walmart, Target that are not expensive at all and do not have food dye in them. I've tried to get my 8 year old (non PANDAS) to take the Omega 3's and he won't. I find he doesn't drink a lot of dairy. I'm not limiting it, but not forcing it on him either. I guess you can say I'm trusting his body to tell him what's good for him right now. He'll drink a small glass of milk maybe once or twice a week.

Hopefully as they become adults and are no longer in a school setting or areas where there are a lot of youth, they will get less strep infections. Do you find her getting less infections now that she is a teenager and understands hygiene more? I'm curious because I have a 6 year old w/ PANDAS. I also have a 3 and 8 who no matter how much you tell them to cover their mouth, wash their hands, etc...they don't.

My son did not get an upset stomach from his steroid. I do not remember his dosing. It was only for 5 days. I would wait and see if he has an upset stomach with the lower evening dose too. Then see the pattern tomorrow too. At that point you'll know if you need to contact the doctor and change the plan a little.

Take comfort in knowing the brain isn't done completely developing until mid 20's so keep up with supplements that help with brain development. It will help her recover. Symptoms were fairly acute but he want misdiagnosed as OCD/tourettes (treated with psych. meds, no abs) for a year. Though this is my first time posting, I have been reading daily since July. I feel a need to chime in. I agree with both EAmom and Buster concerning long term PANDAS that is either untreated or undertreated. My dd is now 17yo. I think she may be the oldest of any on this forum. She presents much like Buster and EAmom's daughter, severe OCD with mild chorea (though no anorexia but definate food compulsions). In hindsight she has most likely been dealing with her symptoms to a milder degree beginning years ago. She has had a series of repeated strep infections over the past few years where her symptoms exploded with a baseline symptom rise (no such thing as good days for the past 1.5 years. Much like Sammy, every day was a struggle). Despite elevated titers, we were (like Beth Mahoney) directed down the Mental Health arm of healthcare. We completely lost her Junior year in High School, unable to read and write. She went from an A/B student to unable to use her mind for learning. She was much like Sammy but no tics. When in June she got another strep infection and her symptoms got even worse, I decided to go against our Pediatrician advice and changed course and went down the Pandas pathway. I have been working with Dr Latimer who advised us to get her tonsils out given continued strep despite her age. We also got Cunningham testing with Cam K levels of 156 3 months after her last infection, and elevated levels of all the other antibodies. Her surgery was in mid August where they found an abscessed tonsil. By 10 days after surgery, dd stated she felt like her brain was less swollen and the fog was lifting. She was able to read without repeating, and write without erasing. Much like others on this forum, we have seen slow up and down improvement with the good days being better than I've seen in years with clearing of thought and eyes. She is in school and keeping up. We started her month of steriods 3 days ago and she has been started on Augmentin 500 bid for the next year. I have hesitated to post as so many have been holding up puberty as when things might magically get better. Not for us. In fact, the past 2 years from 15-17 have been when her symptoms were so bad that she couldn't keep a lid on it. She had been hiding her OCD (though we actually saw glimpses, she was able to hide the dysfunction and we chalked her behaviors as quirky, maybe she'll outgrow it). I post mostly because of my experience with under treated for years Pandas with a now 17yo dd. Every strep infection has resulted in worsening symptoms and a lack of return to baseline. Now any infection makes her symptoms become triggered (cold, allergies, flu etc.) I am hoping Buster you are right, no permanent damage. Thank you all for all the knowledge, wisdom and perserverance you have shown. Ellie

So, it may be beneficial to also get a steroid along with your antibiotic when your child has strep to weaken the immune system and lower that antibody production along with lowering the inflammation. It may not be best to wait until you realize the behaviors are not going away. If my son gets strep again, I already planned on begging for prednisone to go along with the antibiotic. A question just popped in my mind. It may be odd, but if Vitamin C boosts your immune system, should you actually lower Vitamin C intake when they have strep? Or is that really "out there"?

A positive rapid is good enough to prove strep. However, you can get a false negative on a rapid, that's when you graduate to a culture.

There's just no rhyme or reason to this. Take my son for example. he gets no symptoms of strep, except for his behavior. Also my two other kids, get no symptoms of strep and they do not have PANDAS. Yet they all got better on a basic 10 day course of amoxicillan. Well, I should say that the strep was cleared up with 10 days of amoxicillan. The PANDAS recovery did take a lot longer than just 10 days. btw...I know my son is in the major minority in this.

It was wrong to make a broad statement like that. I should have thought it out more. Things like OCD could have others triggers. I do know my child has PANDAS. I do believe there is a genetic connection for it. I do know the trigger for my son. I do know these kids are "canaries in a coal mine". I live in fear every day I will lose him again and next time I won't get him back.

Dr Gilbert diagnosed my son w/ PANDAS. Now he avoids us like the plague. I think that means Kurlan doesn't have a blood test for PANDAS (like Dr. Cunningham has). But, I think it also means that they have not been following the research on this...Cunningham's studies and Maddie Hornig's mouse model- But, this study was most likely started before those and I wonder how long it takes between submission of articles and publishing?

I'm wondering if whomever wrote the article did not understand the study. In the article, the opening and closing paragraphs should be conveying the same statement. They are not. I think many may assume that those who "believe" in PANDAS are trying to say that all OCD and Tourettes is caused by strep.