Update

[emmalily]

Hello!

 

I just wanted to give an update to everyone who has been so supportive in the last few years. Just a refresher: I have likely had PANDAS since I was a kid, but had a major exacerbation while in high school. I was not diagnosed until I was 19 and was then put into remission with a year and half of antibiotics. I'm 21 now.

 

After remission I still had some odd physical symptoms, mainly GI stuff, that wasn't going away. I've fought over the last year to get that figured out, and finally with a great neurologist I've been diagnosed: abdominal migraines. Essentially these are migraines that happen in the belly. Pain is on the midline, lots of people throw up with them (I did a lot as a kid), can be accompanied by a migraine headache.

 

They have nothing to do with PANDAS as far as anyone can tell--I suppose I was just unlucky to come from a family where migraines are common. My symptoms clearly get worse when under stress (i.e. in a PANDAS exacerbation) so I certainly see a connection between the migraines and PANDAS symptoms, but they are two seperate beasts.

 

The neurologist has started me on some over the counter stuff that's already making a difference. My life, which I've slowly been reganing post-PANDAS, has quadrupled in busy-ness in the six weeks since the migraine diagnosis. It may take awhile to get them under control completely, but I think this doc knows what he's doing (he was also very accepting of PANDAS, which made everything easier).

 

In other news, my parents have just gotten me my first car (thanks mom and dad) because I'm out so much on my own now. I have a job writing sparknotes-like e-books for an online publisher. I've been offered an internship at a newspaper for the summer. I'm registered for college in the fall. It's all crazy overwhelming after so many years of being sick and scared, and I still find myself constantly waiting for the other shoe to drop, but I'm trying to push through that and just have a normal life again.

 

Just wanted to let you all know I'm doing okay!

 

emmalily

[Fixit]

Hello!

 

I just wanted to give an update to everyone who has been so supportive in the last few years. Just a refresher: I have likely had PANDAS since I was a kid, but had a major exacerbation while in high school. I was not diagnosed until I was 19 and was then put into remission with a year and half of antibiotics. I'm 21 now.

 

After remission I still had some odd physical symptoms, mainly GI stuff, that wasn't going away. I've fought over the last year to get that figured out, and finally with a great neurologist I've been diagnosed: abdominal migraines. Essentially these are migraines that happen in the belly. Pain is on the midline, lots of people throw up with them (I did a lot as a kid), can be accompanied by a migraine headache.

 

They have nothing to do with PANDAS as far as anyone can tell--I suppose I was just unlucky to come from a family where migraines are common. My symptoms clearly get worse when under stress (i.e. in a PANDAS exacerbation) so I certainly see a connection between the migraines and PANDAS symptoms, but they are two seperate beasts.

 

The neurologist has started me on some over the counter stuff that's already making a difference. My life, which I've slowly been reganing post-PANDAS, has quadrupled in busy-ness in the six weeks since the migraine diagnosis. It may take awhile to get them under control completely, but I think this doc knows what he's doing (he was also very accepting of PANDAS, which made everything easier).

 

In other news, my parents have just gotten me my first car (thanks mom and dad) because I'm out so much on my own now. I have a job writing sparknotes-like e-books for an online publisher. I've been offered an internship at a newspaper for the summer. I'm registered for college in the fall. It's all crazy overwhelming after so many years of being sick and scared, and I still find myself constantly waiting for the other shoe to drop, but I'm trying to push through that and just have a normal life again.

 

Just wanted to let you all know I'm doing okay!

 

emmalily

 

YAY...and THANK YOU for reporting to us!!!!

[3boysmom]

Awesome! Been following your posts for a long time now, so proud of you!!! Have you heard from ( can't remember exactly her name) began with an "E", teenager from Texas, very smart..... I'll need to look up my old posts for her name, I pray she is doing better as well!

 

Happy Easter,

CONGRATULATIONS!

Linda

[kimballot]

I was just thinking about you and a couple of the other older teen and young adult members with PANDAS that we've not heard from in a while. I was hoping that meant that things were going well! Please continue to keep us updated. It is so very helpful!

[MomWithOCDSon]

Great going, Emmalilly! You've served as great inspiration for us, my DS15 and me, and so happy to hear that you continue to do well and move forward with such great things in your present and your future!

[LNN]

Congratulations on the writing job and internship!!! So happy for you!

You've worked so hard - and deserve so much!

 

 

FWIW - there's a mom who's not on the forum very often - JGMom I think - one of her sons has abdominal migrains and he's been helped tremendously by the corrects meds. If you ever need to compare notes, you can keep her name in mind or Pm me and I'll give you her email.

[NancyD]

Wow, Emmalily, you have come so far. This is so great...congratulations!

[Dedee]

How awesome! I am so very proud of you! I know this is an exciting time and you have worked very hard to get where you are. I'm sure I speak for many of the Mother's here when I say that we feel such pride when ever we hear stories of PANDAS kids fighting back and making it through. We know your past struggles and feel your pain and we are so very happy that you are in a good place now! Thanks for sharing!

 

Don't stop -

Dedee

[PowPow]

Awesome Emmalilly!

Thanks for updating us.

I had abdominal migraines as a child and took Ergostat for them.

I have never heard of them since & I honestly thought the doctor made them up! Guess not.

I am wondering about Emerson, anyone heard from her?

Pandas16 quit the forum- but I have been wondering about you older ones!~

[demeter]

My husband had a Dr mention he might be experiencing gut migraines, but the doctor did not follow up with how to deal with them. He has taken immitrex(migraine medicine), which he uses for regular migraines, and has experienced some relief from the gut migraines. Amazingly, since he began B12 shots in January he has not had any migraines, head or gut which is very uncommon for him. He used to get on average a couple a month. He has a compound hetereozygous mutation on the MTHFR gene A1298 and C677T, issues with proper methylation. He also takes Thorne Research's MethylGuard Plus supplementation.

 

What is your neurologist suggesting as over the counter meds?

 

Having two PANS kids, it is nice to hear that you are doing so well!