wornoutmom

Mary - As you know, my son's severe exacerbation at age 12, a week after receiving 3 vaccines at once (and passing out cold in the doc's office right afterwards). My understanding of vaccines in PANDAS kids is that, like catching an illness, you are starting the immune process to build new antibodies, which (in layman's terms) get confused and start attacking the brain instead of the antigen. To my knowledge there is no research - it is controversial enough in the autism community, but I believe all of the PANDAS docs are against vaccinating a known PANDAS child (someone correct me if I'm wrong). My youngest son, not PANDAS, is due for his 11 year shots this summer, and I am terrified. He has shown some strange symptoms this year (insomnia, lip biting, feeling the need to urinate over and over at night time) following illness, and with all the genetic predisposition and families with several PANDAS kids, I REALLY do not want to risk vaccinating him. Maybe it's PTSD, but I'm terrified of doing something harmful to him. I am VERY curious how you have dealt with this regarding the schools requirement? I was thinking to only let him get the tetnus, but after hearing your connection, I'm not so sure....

emmalilly: three thoughts. first, maybe you could use this time to write a book. Self paced, but goal oriented, and you might feel like you are being productive and helping others. second, maybe you could do something else to learn at your own pace - maybe take up a language. Minimal money output, but feeling like you are learning something. Lastly, you once told me in a PM that your biggest fear was that the PANDAS symptoms would return, and that anxiety kept you from sometimes doing something you wanted. So I encourage you to examine what you are most afraid of, and then the worst thing that could happen if you tried, and how bad would that really be if it came true. Maybe school is too big to tackle right now, but maybe volunteering is not. Never be hard on yourself for trying something, even if it doesn't work out. The bravery you output just to try is worth it's weight in gold, even if the goal is not fully met.

Try Carlson liquid fish oil - lemon flavor. You won't need to use much at all for a 2 year old and can mix it into yogurt or applesauce or grape juice or something. Does NOT taste fishy. Tastes like lemon oil. If he does not like lemon they make it in an orange flavor also, but IMO the lemon tastes better.

Emerson: So eggs aside, have any of your family members been to the doctor yet?? I know adults are sometimes bad about taking themselves to the doctor - they just try to wait it out...But if you've been so brave about trying to schedule with Dr K, could you schedule your own pediatrician appointment? I remember making and walking to a dr appt. after school when I was about your age, and then walking home another mile to tell my mom I had been diagnosed with mono. I don't think I got up off the couch for another month!!! She did have the decency to feel guilty later on about making me walk there....I also had another thought for you. Have you tried to email Dr T at all? While he won't prescribe or run tests for you without payment, he may be willing to do a phone consult with you/your mom for free. It might be worth checking into. And one last thing so you don't feel so freaky. My son (14) has not been able to drink milk for years because of his PANDAS. And though he loves to cook, he won't crack an egg - always calls in me or little brother to do it for him. You are not alone!!!

So so happy for your family!!!!!!!!!!!!!

tapiash - that's really interesting. When I spoke with the nurses at Coram pre-IVIG, they said they would never do such a high dose (and ours was just 1.5) in one day, and actually wanted to spread it out over 3 or 4. I asked for 2 back to back, just because it seems to be the most "known" way to do it, and they acquiessed. Glad your son is doing better after the one day of side effects.

We used Coram in Lansing, MI last month for my son's IVIG. Was not covered by our insurance (grrh...) They were great regarding cost. They sold us the drug at wholesale, and then discounted the 2 days of nursing services to just $90 a day for us. In total, it was $17,000 cheaper than what I was quoted by 2 hospital infusion centers. We were their first PANDAS case. The nurse had received a printout on PANDAS before our infusion to educate herself. Things got a little dicey the 2nd day of infusion when my son developed symptoms of migraine, vomiting and fever that the nurse had not seen before (is this unique to PANDAS? or high dose?) as she had never done a 2 day infusion and was very nervous to proceed. But, in the end, she was really a great advocate, stayed with us for 8 hours and was SO nice to my son that he wanted me to buy her flowers afterwards. We will definitely return there is we need to do another IVIG.

Suzan - we are still dealing with enuresis off and on at age 14 (though it has been much much better since the IVIG 5 weeks ago). Ds has been on and off DDVAP since age 9 for this. When you found out about missing the REM cycle, did they give you any tips on how to help this????? During exacerbation he is like a dead log when he sleeps - you just can't wake him, and sometimes if you do he is in a literal stupor. This year he couldn't seem to keep his eys open - fell asleep in class almost everyday...

My son took clyndamycin at age 7 for 10 days after 7 positive rapids/cultures in one year. We emptied the caps and put the nasty nasty powder into a spoonful of Hershey's chocolate syrup. Then we paid him a dollar. Since he had to take it 3 times a day, he ended up with 30 dollars and a trip to the toy store. Oh...and FINALLY a negative strep test...

Just thought I'd chime in because my ds actually did have a PET scan that showed inflammation of both the basil ganglia and thalumus. The thalumus information surprised me but the more I read up on it it would account for troubles with enuresis and sleep disturbance. I know what you mean about the diffuse impairment and the frontal lobe. With this last exacerbation my son looked just like a kid with a frontal lobe head injury - all exectutive functions and motivation were gone. He also had a great deal of trouble with memory - which is usually seen more in the hippocampus - another part of the brain closer to the temoral region on both sides. Since sinus surgery and antibiotics he is perky, on task, and motivated. We will see how he does in school this year. So... I too wonder if more than just the basal ganglia is involved. This is a question for researchers and I hope someone does PET scans some day to look at function - not just anatomical swelling. It seems to me that the brain can have neuronoal misfiring with excessive cam kinase II in areas other than the basal ganglia - or perhaps the basal ganglia is most susceptible because it closest to the breach in the blood-brain barrer?? So many questions.... We need more research!

we are using 500 mg DHA Calamari Oil, 500 mg time release vitamin C, and a probiotic. Were also using 1000 IU Vitamin D3, but have stopped for the summer since he is in the sun so much.

wow! that is a really big dose to do in one day - I hope they are doing it slowly for him. If I had it to do over, I would have done things differently to avoid the side effects we got after just .75 Day 1. What we did: 8 bottles of water the day before IVIG, and 8 the day of IVIG. 150 mg Benadryl every 6 hours (3 doses), 400 mg every 6 hours, alternating with 2 Tylenol in between. Gave 40mg Prednisone upon appearance of severe migraine - unfortunately he was also nauseated and threw it up before it had a chance to help. What I would have done differently: I would have insisted the doctor write orders for IV hydration before, during and after the IVIG.(didn't happen till the 2nd day when all the side effects showed up). I would have had him drink even MORE than 8 glasses. I would have given him prednisone right before the IVIG, not once he had the headache (I think Dr B may be doing this now) I would have dosed him every 6 hours with Ibuprofen 600 mg, not 400mg (he's 130 lbs.) and I would have set my alarm religiously to make sure he took this instead of thinking he just needed to sleep through the night. And probably would have had them slow the drip down even though he seemed to tolerate the infusion fine. All that being said, even if he does get side effects and he does feel horrible, it really is "self limiting" like when you have the flu for a few days. After the day 2 bad side effects subsided, my son had a lower level headache for about 4 more days we treated with Motrin. The biggest thing I was not expecting was the amount of sleeping he did - upwards of 14 hours a day for the first 10 days or so after. I know that freaking out feeling well - but both you and he will be just fine and you will get through this! Let us know how it is going tomorrow and in the next week!!!

My son is having his 1st IVIG on Wed. It is a high dose but we are only scheduled for a one day infusion. This scares me. Shoulder it take two days. How do you know when it is time for anther IVIG. What symptoms do you look for? Can I ask why one day? The nurse at the infusion center we used told me they would never infuse a 1.5 dose in one day, even when the doctor wrote the order that way. She actually wanted to split it into 3 days just in case (we did just 2 days). She said the risk of adverse reaction would be too high when doing that dose in one day...

EA mom - Ds is on 1000 mg of Biaxin a day and has been for 3 months. Don't think I could up that could I? Friend's doc didn't prescribe. Their older daughter was given a pill script yesterday but almost choked taking them so went in for the shot today. When we told our friends about our greatest fears that the one not on abx might be harboring the strep, they said - well we've still got the abx pills - lets just give them to our younger daughter too - and promptly did!. So not great docs but great friends. Who medicated their child just to protect yours? Truly brought tears to my eyes and brought on the decision to go. Still a little concerned about my youngest son. We have some left over Omnicef from Canada and thought about just starting him on that but he doesn't take pills so I'd have to break up the capsules into food - yuck. Does anyone know dosing on Omnicef for an 80 pound 11 year old? Figure if they can medicate theirs I can medicate mine? Or should I add the Omnicef to older son's Biaxin? any thoughts? LLM- thanks for the kind words.

So we called our friends back. Turns out its not confirmed strep but the doc is treating it as such (why wouldn't he do a rapid test anyway??!!). She had one dose of abx yesterday and then went in this morning and got an abx shot. They put their younger daughter on abx this morning for US! They are disinfecting their home.We are bringing vats of Purell. We are now staying at a hotel and limiting our contact with their family for another 24/48 hours. And then holding our breath and hoping for the best. This is our happy medium between paranoid and stupid. Of course, if he contracts strep, I will let you all know and will expect you all to beat me over the head saying "I told you so!!!!!!!!!!!!!!!!!"

See, I was actually thinking he might be more protected right now because of the IVIG? And the fact that he's been on full strength Biaxin for 3 months? Is that naive? They have one more child who may or may not be incubating it, and actually I was worrying over my other son (age 11) who is not protected by antibiotics. But then there have been plenty of times when one of my kids has had strep and the other doesn't ever get it. Right now I am leaning towards staying in a hotel room and just visiting outdoors. I really don't want to be stupid, but I also don't want to be so paranoid and overprotective I can't live life. I'm really "wornout" on the tough decisions!!!!!!!!!!!!!!

I am a little freaked out over this decision right now. Am I being paranoid because strep is everywhere and you can't keep them in a plastic bubble? ?? Or would knowingly taking our son into a home with strep be like the stupidest thing I could ever do right now?? I was so looking forward to this weekend and now I am just kind of sick to my stomach......

I keep reading your posts and am SO floored that you are 15!!! My 14 year old would NEVER have been able to accomplish what you have. I doubt he can even order a pizza alone - but I think you have inspired me to ask him to try....

Oh happy dance!!!!!!!!!!! Kellie and Vickie - you are an inspiration. I'm not even sure if you can grasp yet the difference you have made. This is HUGE! Congratulations!!!!!!!!!!!!!!!!!!!!

Hope this is ok to post here! I just wanted to share that we've started an email loop for PANDAS parents in Michigan, with the hopes of sharing information and support about local doctors etc and hopefully finding a way to all get together someday soon. Heck, maybe someday we will change the landscape of PANDAS here in this state! So if there is anyone on the forum I have NOT emailed that is from Michigan (or nearby), please feel free to PM me to be added to the loop. -Rachel

It's hard to look at PANDAS as a gift, but the I think fight we've all had to endure as parents trying to get our children well has made us the resilient, hard-working, never give up parents we are. And our children too. I am always and forever inspired by the parents here, but not surprised. If any group of parents was going to get this done - it was us!!!!!!

I'm pretty sure all walking pneumonia is caused by MycoP. And like, Meg's mom, we always see the ramp up 3-4 days before the illness too. I know Dr T told me people don't "shed" mycoP the same way they do strep, but if gma is living with you, chances are so much higher.What abx is Allie on? Some of them will not effect MycoP at all. What did they put gma on? Would your abx prescribing doc be willing to do a short course of Biaxin to try and protect Allie for now? I know even our lousy pediatrician would give us abx for ds if someone else in the home had strep, as a prevention, and it did help.

We dealt with night terrors for several years, and they actuallly subsided AFTER the T&A. What I learned (the hard way) for my son was NOT to wake him up. His terrors would usually begin 1 1/2 hours into his sleep, with sleep walking or talking. Usually he would wander to the bathroom (though sometimes in his stupor would mistake something else for the toilet -yuck) and start calling for me. If I could gently lead him back to his room and back to bed with minimal talking, he would go back to sleep. If I jarred him past the stupor stage to ask him something ("what do you mean? or - say that again") or woke him up in any way,that's when the screaming would start. At that point I would just sit next to him and wait it out. Everynow and then I would try to touch him. If he could tolerate a light touch without screaming further, the I knew he was coming out of it and eventually could cuddle him back to calm. He was young, but almost never remembered any of it in the morning. Is your son remembering them? Must be painful to be screaming after T&A!!!!

Well she'd have plenty to talk about with my 11 and 14 year old boys! They think Annoying Orange is hilarious.....

Nothing scientific to pass on, but YES! this happens to my son all the time. My husband and I just know "the look" that tells us he is headed downhill. His coloring turns kind of grey and his face looks swollen. Even my son will say - "I feel puffy today". I have never known what it is, but just know when that look appears we are in for a few bad days. When he is having a good day, his face slims down, you can see his cheek bones and his coloring returns to normal.