thereishope

My son would "police" speed in the car and the use of seatbelts. As for alcohol, I don't like wine and hard liquor goes in a regular glass. So he never knows anyway!

You are awesome! I am smiling too.

Mike, I am so sorry you are going through this. But, I think you're at the point that you are gearing up for the fight. Once you let yourself read the stories and see and understand the struggle, you get scared and you want to just run, but then the parental instinct kicks in and you fight for your kid! This forum can seem overwhelming at first. Just take it in slow. Some of the bad things you read on here doesn't happen to every PANDAS child. The symptoms vary, the severity varies, but it's also good to read that you're not the only onlt going through that "stuff". Here are some useful threads for you to read through. I suggest printing them out. They will hopefully answer some questions and lead you to new ones. And ask whatever you want on here. Know you are not alone. Everyone on here not only fights for their child, but we fight for all PANDAS and PITAND kids to get better. May sound a bit corny, but it's true. PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Then there's a website set up by a 13 yr old with PANDAS, it might be something your son would want to visit to know he is not alone in this... http://www.pandas-syndrome.webs.com/

My son was 5 when PANDAS surfaced. With his third excaerbation, he had residual OCD and other issues that were still present as a sresult of the OCD. So, we went the psychologist route. Call around, speak to the dr on the phone first. Many admitted they never heard of PANDAS, some googed it while I was on the phone with them! So, I finally found one that seemed like might work. She claimed to have seen 2 PANDAS patients before. well, she was useless. I knew by the end of the eval that it was not going to work. So, I went to the children's hopsital and was put on the list for one of them. 3 months later (and that's with us being on the emergency list), we had an appt. Overall, it went well with this one. Within that 3 months wait, I did research on my own and we were making improvements on the OCD. But this psychologist understood PANDAs and very nice to my son who at the time was about to turn 6. She admitted CBT would not work for him. He wouldn't cooperate with her, wouldn't rate anthing, wouldn't name the OCD, wouldn't admit anything was wrong. To him, those thoughts and rituals were life and there was no need to fix it. So, we did more of an ERP approach. Since we were making improvements at home, we did appts more on a consult basis. If I had a question she'd answer it and help guide me if I didn't know which way to turn next.I had papers broughts home to chart improvement and I met with her once month to touch base. I even got her email to contact her. If I ever need a psyhcologist again, I plan to make an appt with her. But I hope I never need one again!

Different people take different approaches to checking family members. Some will check titers on the whole family, some will do just the throat swab. In my family, we do a rapid, if the rapid is negative, make sure they send it out for a culture. There are antibiotics you can take while pregnant, but I really have no idea what is okay vs what to stay away from. If you test positive, discuss with your doctor your options then clear it with your OBGYN. Personally, even if I was pregnant, if I tested positive, I would get that cleared up. I have no hesitation in saying that. Just because you test + w/o symptoms doesn't mean you are a carrier. You're a carrier when you are asymptomatic and it's harder to get rid of. So, if you test +, you go on abs. 3 weeks after finishing them, you go for a follow up strep test. That's how you weed out a carrier. Now, if you are a carrier, well, even though it is less likely you will pass it onto someone else, it is possible. Also, PANDAS kids may react to exposure only. So a PANDAS child in the house with a carrier means there's a chance the child will not be able to fully recover since they are constantly battling the exposure. I hope that made sense. This is how I found out all 3 of my kids do not get symptoms of strep. Even my 2 non-PANDAS kids. Also, both my PANDAS son and my husband have had false rapids. A few days later, the cultures came back +. Did you say she had a sinus infection too? If so, if you still see stuffiness by say day 5 on meds, call the dr. He may be able to add on a nasal spray to take down swelling and get it to drain more. If there's a sinus infection, that needs to get cleared up. Many have said tics are the hardest symptoms to get rid of. For my son, I would say the first mark of improvement was that he stopped worsening. I think the full fledge meltdowns were the first thing to stop for him. If you've had meltdowns, you need no explanation. Not tantrums, but meltdowns. My son did not improve 100% overnight. It takes a while for recovery.

No spell check to my knowledge. That's why you'll often see my posts edited. I post, then I see the errors

You're now the 4th person I've met in the world of PANDAS that has Ehlors Danlos. I can't remember if it's just the moms that have it or if it's the moms and the PANDAS kids. I thought Ehlors Danlos wasn't that common?

I'm looking at your screen name. Are you in Northern California? Here's a link to doctors that some have seen on this forum. Not all are experts, but have been helpful to someone... http://www.latitudes.org/forums/index.php?showtopic=6428

Welcome. In regards to strep, it can occur in many places, not just the throat. It can be in the throat, the gut, ear infection, sinuses, anal, vaginal. To make things more complicated, not every will have a rise in titers when they have strep. Then there's PITAND. This is when an infection sparks the symptoms but isn't limited to strep. Things such as Mycoplasma Pneumonia can cause it to surface. So, if you cannot find a strep connection no matter how hard you look, you can also look into things like Mycoplasma Lyme, etc. Wth some children, the first episode is the one sparked by an infection, but then they may have subsequent minor or major setbacks with even viruses, stress, allergies, exposure to illness, etc. Once that Pandora's box opens, it never fully closes for some kids. Here is a flowchart that may help in trying to figure out steps to take... http://www.latitudes.org/forums/index.php?...ic=6688&hl= How are his bowel movements now?

A couple others on here have children with chiari malformation. Even though you really think you and your husband are in the clear for strep, please go anyway and get a strep test. You can have strep w/o classic symptoms (even if you do not have PANDAS). Even if someone is a carrier (like you wonder you might be), in the PANDAS world, that needs to get cleared up. I also understand what you mean about not doing a strep test because they won't cooperate. My 5 year old took 4 nurses and my husband to hold him down. As for a timeline with antibiotics, it really varies. Some say they see improvement immediately, some (like my son) will worsen for a few days then I start to see some improvement, for others it takes a longer. Please keep us updated on how she does with the antibiotics.

Welcome. Did you notice anything that might have occurred around the time when you began to suspect autism? Whether it be an illness (even just a cold symptoms), vaccinations, or anything else. I will say that many PANDAS parents will not even know their kids have strep, but some may see signs, in retrospect, that the child may have been ill. My next question would be in her 2 1/2 of years of life has she taken antibiotics for anything? If so, have you ever noticed that her behavior got a little better when she was taking them? Did the doctor do a basic throat swab strep test prior to giving Zith? Do you know what the respiratory infection was (did anyone mention Mycoplasma)? When did she start the Zithromax? Sorry there was so many questions. One other thing you can do is go ahead and check everyone else in the house for strep. Here are some links for you to read. Hopefully they will answer some questions and lead you to possible new ones. Ask anything you want here. PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Signs of OCD in a young child http://www.latitudes.org/forums/index.php?...ic=6153&hl=

Yes, know your child's limits and know when to stop pushing. I did not attempt to rid my son of all his OCD at once. It was a long process and there were times I attempted to overcome one thing and realized it just wasn't time to tackle it. I did baby steps with riddening every ritual, OCD tendency, etc.

That sentence sounds like you've reached a turning point. I had that with my son when the OCD just wouldn't go away. That's when I started to view his PANDAS OCD different than his residual OCD. Once I really got that mind set that we just couldn't wait any more and I just couldn't be a slave to his OCD anymore, did we finally make strides.

I'm so glad you are seeing improvements! Sending your child to school while they are in an exacerbation or the early stages of healing is so hard. There are "silent threats" everywhere (illness). For your family, it seems pulling them out was a good decision. I know I am very anxious for summer break to get here.

I'm glad you are finding answers. Now it's time to get your son better!

Yaz was specifically mentioned.

Progesterone raises when someone is pregnant and they are currently researching to see how progesterone may help people with brain injuries. So, there may be a connection to the progesterone increase in pregnancy and the relief of PANDAS symptoms at the time. I brought this up awhile ago... http://www.latitudes.org/forums/index.php?...hl=progesterone alderliefest, can you go through a list of supplements that you are currently taking and what antibiotics you have recently tried or are currently taking? Do you take birth control? Also, if you have blemishes or adult acne you could try going to a dermatologist and often they will give long term antibiotics for acne. Those antibiotics may help your PANDAS. Just brainstorming here.

I hope everything works out. Your family deserves a happy ending. You are both so selfless and giving. Will keep your daughter and your family in my thoughts and prayers.

It's so hard to know why our kids won't eat. My son never told me the reason so I was left guessing. Like yours, he had some sensory issues with food (an example for him was being very sensitive to hot and cold). He also had a lot OCD surrounding food. He couldn't eat if certain people were at the table, he had so many rituals to complete before sitting down, theer was contamination fears that led to only being able to eat certain food. There's more, but that is a sample. well, I will add at one point I realized he wanted to eat but something kept him from eating. He also feared other people's safety (not everyone, but certain people) like it sound like yours does. That's OCD too. I know you probably have done this, but I kept all sorts of food at a level he could reach. I had to force myself to stop asking every 5 minutes if he was hungry. That made it worse.I always put a plate with food out for him at dinner,never knowing if it would be the one time he would eat it. Eventually with erradicating the strep (his trigger for that exacerbation) and a steroid burst (which may have increased his hunger and helped in that way too), he ever so slowly came around. It took him well over a month after getting antibiotics to eat "normal" again. Meaning he was eating food I prepared, cooked,and eating at the table with us. It also becomes hard to overcome eating problems because the body gets use to the feeling of hunger or not eating much and adjusts. It's a process to teach the body the right way to feel again. If he's drinking more, that's good. His stomach will get used to what it feels like to be full and hopefully that signal of being hungry will start to surface again. Maybe after a week or so of the increase in liquids, make the same shake a little thicker without telling him. That way he has to chew every so slightly (assuming you may have some bananas or something in there). IF he questions you, you can eiterh say you didn't realize it was thick and tell him to keep drinking it and you'll reblend it in a minute. May not work, but get creative and teach him without him knowing you're teaching him.

Can you describe his food issues more? My son had them too. Maybe we can give some suggestions. At 5 years old, my son went down to maybe 36 pounds from 42 pounds in a matter of maybe a month or less. It was so scary.

I know with Claritin, you don't get the full effect until 10 days of use. Claritin really made my PANDAS son hyper. Each kid is different. Allergies are just so bad right now, even meds can't keep up with them. Is Dimetapp an antihistimine?

Those allergies are such a pain! They blur everything. Allergies can really ramp things up. I'm not saying that is the problem for your son, but if a child is in an exacerbation or very early on in recovery, allergies can really worsen things. What allergy meds does he take? My non-PANDAS son takes Claritin and the end of last week his allergies were bad even with the Claritin. Interestingly, my PANDAS son take Benadryl. His allergies symptoms remained under control even when my non-PANDAS son's worsened. The allergy med can make a difference.

This was in an older thread... So, I think you would have to test it once to get a baseline, then test again later to see if the number has gone up or down. That may tell you if there is an infection? I admit, I get nervous doing a steroid burst without being on antibiotics. If he starts to worsen on the steroid, I would call the dr and tell him. That may mean he still has the infection and the steroid is making it worse by weakening the immune system. Now, some kids on here have tested + for Mycoplasma while being on Zith or Zith didn't seem to clear it. Perhaps they will chime in to explain. Some have had to go onto Biaxin. I have not gone through the Mycoplasma route with my son and hopefully those who have will give more insight. Did your son have physical symptoms of Mycoplasma such as a cough when he was diagnosed with it? If so, does he still have it? I ask since if he did the cough should be gone 2 weeks after finishing meds. I know the cough continues after taking the abx, but should be gone by the 2 week mark.

I think Dr K has ordered Myco P tests for kids before, so he might have. I totally understand wanting and needing to figure out what triggered all of this. Also, the antibiotic choice may depend on the infection and if your child has two infections at once, the doctor and you would them know it may be harder to erradicate. Let us know how the tests pan out once you get the results.

Let's hope it's just turning back the pages and a bump in recovery. Look back at the day and make sure there was nothing that could have triggered it (food, stress, chlorine, anything)Does Ibuprofen help?