sosudden

She saw cardiologist to rule out any heart abnormalities. We increased her salt and fluid intake as the theory is this i creases the plasma volume which helps increase blood pressure and lower heart rate. For our dd10, this was not enough so we started her on Florinef. She is one month in to this medication and doing better. She continues to have the postural tachycardia BUT it rarely geta to the 180'smedical as it used to. If you know how to check a pulse you could check his for 1 full minute laying then sitting then standing...pm if you want to talk. Hang in there!

What a great story and thanks for sharing it!!! The moments of "normalcy" are priceless!!! Happy healing!

Very similar story with our dd! In the beginning she peed so much we checked her for uti and diabetes as well. She was 8.

Could he be feeling anything that is making him "afraid" to walk? Anything besides the pain? I know my DD10 (who also has POTS/dysautonmia)can have a racing heart, burning leg pain, and feel "off-balance" and "heavy" which makes her not want to move about much sometimes... I also would look much more in to it before you think conversion disorder. PANDAS/PANS is so crazy weird and presents differently.

Mycoplasma? Viruses? Lyme? Has he been tested for these? IVIG brought our dd back from the edge of nonfunctioning. Almost 8 months post IVIG with Dr K. She has had a few flares. We have uncovered some stubborn "infections". She has developed POTS and peripheral polyneuropathy. BUT she continues to improve from the PANS. I'm not sure how she would be now without having the IVIG.

Children's Mercy in KC, MO~~unimpressed there too. A bad experience there in July still keeps me up some nights!!! The Dr was just so rude and closed-minded!!! And lots of eye-rolling at my dd!!! Oooohh I was livid!!! The doctors that HELP us are truly gems!!!!

Daughter had migraines almost constantly before IVIg. Hypersenses made them unbarable at school -in lights, noise, moving -well just overloaded her. Honestly no migraines since about 10 days out from IVIg.

Ahhh!!! We live in Kansas City!!! Please PM me and we can talk and compare notes!!!!

We too have been there and really still are there I truly understand. Su ks for sure!! We are still learning our new normal. My pandas daughter just turned 10 and is the oldest of 4. It SO effects all of us! I suggest you definitely take time to go out and about with the other kids without your pandas child. It is so tough on them to watch their sibling so scared and out of control The best day I had in a long time was 2 weeks ago when I took my almost 5 yearold daughter out just the 2 of us!!!! It was so fun and "normal"! No hurrying. No panic attacks. No anxiety! No hiding or crying or endless questioning. No encouraging or changing of plans or having to ignore other family members.... oh this is such an awful disorder But, my dd4 told me it was the most fun she ever had!!!! So keep in pushing and finding treatment for your child but make sure to take time for you and your other 3! Hugs to you! L

My 10 year old daughter has postural tachycardia. Diagnosed this summer. I think she may have been experiencing longer though... heart rate up to 170's, 2 ED trips and a cardiology work up. She is now on a medication for it and we are seeing slow improvement. I am at work today so will try to send some links later or you can PM me. I would suggest taking her pulse laying then sitting then standing just to see if that has anything to do with it. Laura

Ahhhh I wish the answer was easy --- and standard for all of these kids!! Seems what works for some does not work for all. I will just tell you what we have tried/are trying with our dd (just turned 10). I will start witb saying she is SUPER sensative to ALL meds and supplements. What is finally working in SSRI department is Celexa. Nothing dramatic, mood a smidge better, therefore anxiety and ability to "fight back" a bit better. (Or vice versa but it is helping! Prozac - took at her worst and didnt help at all may have hurt but she was SOOO bad at the time. Took for 3.5 months. Zoloft - tried this summer for 2 weeks. Awful response. Anxiety inside and out. Restless legs. Crying for HOURS on end. Melatonin - refuses to take. Makes her feel too dreamy. Causes night terrors. 5-HTP - excited when I read about this on forum. Made her feel goofy, dreamy, foggy, hyperish and therefore also increased anxiety. Hydroxyzine and benadryl - makes her sleepy but does nothing for anxiety. Valerian Root - I use the drops and it helps! She is an take before school even if she needs to -complete doesn't make her sleepy. I would suggest trying it 1st to see if it makes her sleepy. Totally Calm Kid - works ok if I can get her to drink it all. And more than some of the times it seems like nothing can help ... She has been so off the charts scared/anxious that she cries and begs for something to just put her to sleep... I hate this disorder

Zoloft made 9 y/o dd feel awful. She has been tolerating Celexa now for about 2 weeks and I think it may be helping too!

Wow I definitely will be picking up one! Can't wait to share the true story and story line witb me dd! She is only 10 but a very gifted writer Stories of surviving and thriving - we need those around here!

Hi! Just personal experience here with our dd. Prozac - started when she was at her worst so did nothing. (Took for 3.5 months). Zoloft 12.5 took for less than 2 weeks as she became so intensely anxious and restless "inside" that she would cry, shriek, pace, collapse and curl up in a ball etc. Awful:( Stopped zoloft and stopped having these super intense panic attacks by the next day! NOW we are on Celexa 10mg for 8 days now..... things I notice or she has commented on, both positive and negative: zoned out, smiling, giddy, brighter eyes, quieter moments in her head, tired, exhausted by bedtime, mild tics returning(havent had since IVIg really), and last few days restless legs and restless "inside" as well as increaaed anxiety. I am in contact with psychiatrist and we r watcbing closely.

I would not -to at least def not the flu mist. For sure affected my dd 2 years in a row -before we knew diagnosis.

Thanks for sharing!! It is an exhausting roller coaster ride!

I see this post is old - hopefully someone can help me with POTS?!? DD 10 has been suffering from this since June (at least). Hopefully starting Florinef. Her heart rate can shoot up to 178! Are there any other tests I should be asking for? Once again I feel like I have to research and ask for any testing and treatment and I just don't want to miss anything. Any good/bad Florinef issues? It is a steroid and DD FREAKED OUT on prednisone and could not take so.... Thanks!

Thank you for your quik reply... I just want her to get some relief!!! This journey is bringing me to tears lately... I was hesitant to go to another psychiatrist.... We went to one right after I realized PANDAS/PANS diagnosis and she prescribed Abilify for vocal tics --- we never gave.. Got IVIg in Feb with Dr K... LOTS of her symptoms improved/disappeared quickly...except her OCD. Actually, her Tics and nonstop complicated all-day-long compulsions stopped BUT NOW she is OBSESSING all day long that she is going to die:( I was just hoping Zoloft would decrease her anxiety and make her better able to fight the "bully in her brain" as we call the intrusive thoughts... No luck --- just made it worse it seems

DD just turned 10. Started Zoloft 12.5 for 7 days then increased to 25 for last 12 days. For 1 week now her ANXIETY and PANIC and OCD fear of dying is nonstop, unrelenting, causing her to curl up in a ball and cry, whether at home or out in public!! It can last for hours and hours and hours...(you know) SO is this what can happen to kids on SSRI's??? I've read that our kids can not tolerate SSRIs -- is this why?? Dr T also said to watch for hyperness, mania and increased anxiety... Just when I think she can't possibly have any more INCREASED anxiety.... I will call her Psych on Monday, until then I will hold her doses (I guess???)

LLM, thank you for sharing! I have tried adding supplements to my dd daily antibiotics and she can not really tolerate anything?!? She has never been tested for this methylation problem - but I have tried methylfolate and it made her feel worse (angry, moody). Then months later I tried 5HTP, by the 5th nite it was almost like she was super silly drunk - very scary for me to see Never gave that again! Other supplements I have been told by Dr K to try seem to really have a negative impact??!! What is that about?? Also chronic low Ferritin @ 24 then 17 and 21. She is a few weeks in to 1 daily ferrous gluconate and seems to be tolerating that one. I have given her fish oil and she doesn't seem to tolerate that?!?! Too much probiotic messes with her behavior too. For months she was on antibiotic only. Ahhh it is challenging and scary to try to figure all of this out! Our kids have such a scary time as it is! I feel so bad when I try things that cause a bad reaction... am I doing enough? am I doing too much??

yes my 9 year old does this! “I'm sorry!“

I would ask for mycoplasma titers as well. my dd never showed elevated strep although we did not catch her/draw them at initial onset. then get on antibiotic asap and watch for improvements!

thank you both for reply! i live in kansas city area. saw neuro at childrens mercy - says he knows about pandas but doesnt treat there yet??? very frustrating as I also hate taking my dd to “useless“ dr appointments. cardiologist believes her tachycardia was an autoimmune response and may happen again if triggered. dd got ivig in feb with dr k in chicago. helped immensely - everything but the ocd improved pretty quickly. after her 1st bad flare in june we consulted dr T. this is how we found the mycoplasma and 2 viruses but tbi were negative (not igenex tho). also high ana index.... i will pm you for those labs for sure! to add to stress we r on vacation in florida and my mom has had a stroke... she is going to be ok but we r just waiting.... thank you and i will pm u soon Laura

Anyone question Lupus in their child? Lots of overlap in symptoms because it is autoimmune as well. Daughter has developed a rash on her face that is suspicious of the malar “butterfly“ rash of lupus She has had chest pain, “lung“ pain, shooting nerve pain, bouts of postural tachycardia, fatigue, joint pain, and more.... Her ANA index came back 2.5 times greater than normal.p next step is rheumatologist....

pandakid11, much of what you describe sounds like our daughter - she will be 10 tomorrow. the main difference is she has never had elevated strep titers. we have discovered her chronic/trigger is Mycoplasma. at daughter's worst OMG she had an awful startle response, constant fight-or-flight which would lead to either running around shrieking behavior or curling up and shrieking behavior. And the shower thing - I totally get it!! At her worst getting her to shower became a battle I wasn't willing to fight daily. She was receiving homebound school at the time. She would scream, yell, hide, slam doors... same with brushing her hair. Well, now that she is “better“ she says that the shower HURT HER HEAD and she could “feel“ every water droplet! All of her senses are “hyper“ really. her mood swings at her worst would cycle rapidly. nausea 24/7 we figured out was from augmentin so had to switch to zithromax. paleness was truly awful! she looked so outwardly sick and miserable. had vit D checked - it was ok. checked for anemia - all looked ok except LOW ferritin, finally getting ferrous gluconate in her daily. I attribute her paleness somehow to her faulty immune system. She basically missed her whole 4th grade year - a super intelligent loved school girl. we continue to peel back the layers of this awful disorder... it can be exhausting and heartbreaking... but you sound like an amazing mom with the power to persevere!!! this forum is amazing and where I come for help and support! hugs to you!