ptcgirl

Does anyone know if Dr Jones is using this test now?

Hey Mar, I totally get your frustration. I'm so sorry that this is happening to you guys. I know we've passed around bugs here lately too. I just went on a huge cleaning campaign so I'm hopeful that it helped. I put the whole house on abx (including our four dogs), changed toothbrushes for everyone (and probably will again towards the end of the abx), and have disinfected the house like crazy. Unfortunately, I didn't realize (because THEY DIDN'T TELL ME)that my non-pandas kid was at a neighbor's house whose child was diagnosed that same day with strep. Errrrr. Is there ever an end? I'm really feeling like I need to put a big bubble around my whole family.

Cute!

Great news!!!

I cannot thank you enough for sharing this. We've all felt so many times that "things are just so bad and how are they ever really going to get better?" Your story (and your daughter's) are so inspirational to us all. Please keep sharing! They keep us going. LLM, what blog? Is there a success blog I should know about?

YAY! So glad to hear the update. My daughter has an irregular heartbeat too. It was discovered at the same time that she got PANDAS. It always made me wonder. At the time, the drs were concerned with Rheumatic Fever, but dismissed it. The cardiologist says it is an innocent heart murmur. I find it odd that it appeared out of no where just after the strep that caused the pandas in the first place.....

Educating the public (and doctors) is crucial. So glad u had the talk with the school nurse.

A good ent sounds like an excellent piece of advice. Getting the allergies under control via dr b has also been important for my dd. sinus infections really mess her up too. Welcome to the forum. I know it really helps me to see what everyone else is going through too. God sent group.

I'm very tempted to stick all I my dogs on abx just to see what happens. I love my dogs but I'm starting to feel like in choosing my dogs over my child's health and that is just not okay. Very hard because they are part of our family too.

Augmentin works better in our home. If it were us, I'd try to treat everyone ASAP. Good luck! I hate strep.

So glad you were able to get a diagnosis (finally). At least your younger child will not have to suffer as long. Glad the tonsils are coming out. That helped my dd for 9 months (completely symptom free). I just wish I would have kept her on a low dose abx afterward to ward off the infection that got her at the 9 month mark. Hang in there~ Step one finally done! : )

I'm so sorry to hear this. When it rains it pours.... I will continue to pray for you. Our dr said ours was approved too. DD just had it done. It better be covered by the insurance. We can not afford to pay it otherwise. Who is your dr for IVIG? Surely there has been a mistake and it will be covered.

I stopped giving her the ibuprofen and benadryl a couple of days ago. Up until then I was giving every six hours. How long do you continue giving both of those? She isn't drinking as much as she did initially. I will start pushing the water again. I didn't realize she still needed it so much. Thanks for the response and please let me know about the ibuprofen and benadryl. Thanks!!!

My DD12 is having a pretty intense headache that she describes as twisting in her forehead region. I just gave her ibuprofen and benadryl to treat it. She is 6 days post ivig and on augmentin and a steroid burst. Anyone else have this or heard of it?

I can relate so much to your post. Unfortunately my dd12 has felt this way too many times it is so hard as a mom to hear your child no longer wanting to live. I've often wondered how long I would get to hold onto my baby in this world. Terrifying thought. I would definetly ask to be put on a standby list for the dr for Ivig. Also, I should mention that when my dd was 10 and testing positive for Lyme, bartonella, and babesia she did a steroid taper and it caused the worst depression she's ever had. Literally had to pull her out of school and watch her out of fear of what she would do. Now (last Lyme and coinfection tests were clear) she just had Ivig and a steroid taper without any of the depression so far. My heart goes out to you and your child. I will pray for both of you. Please know that neither of u r alone. We really do understand what u r going through.

Dr swedos office gave me a list of dr that do Ivig and one was in nc. I just can't find the list. Call them and they should be able to help.

Thank you!!! Prayers r so needed. Thank you!

Her eyes are becoming less dilated thankfully but still larger than most kids. I've noticed such an improvement in mood though. Wow! My daughter is actually happy. Havent had a nonconfrontational, happy 12 year old in.... well, ever. Please God let this stay with us!!!

He told me HD.

My DD12 had her first round on Monday and Tuesday of this week. As to be expected, her OCD is worse right now although not extremely worse (yet?). Her eyes are SO dilated that it looks like she is the begging Puss in Boots character from Shrek. She is very sensitive to light (makes sense with that kind of dilation). I wonder if anyone else's kids eyes get like that. Her pupils get significantly larger any time she is in a flare, but they nearly cover the whole blue part of the eyeball at this point. Her anxiety is worse and she has some small vocal ticcing. Anyone know anything about this???

Wow. Thank you so much to all of you who responded with you IVIG treatment stories. It is giving me some hope for my daughter.

I PMed a couple of you. I spoke with my daughter and she would like to be able to email with any girls going through this. She was a little reluctant about talking with boys.

Thank you guys so much for the response. I think she would really like to connect with your kids. I'm going to look at the sites! Thanks!

My daughter, almost 13, needs supportive friends that understand Pandas and the OCD that goes along with it. Does anyone know of an online group for teens? Anyone else have a kid that feels like no one else understands?

So sorry to hear that it isn't good news, but glad u got the labs back.