Pandasmom's Blog

living with PANDAS, not the furry ones…

Virtual PANDAS Coach July 26, 2015

Filed under: Uncategorized — pandasmom @ 6:52 pm

Learning that your child has PANDAS or worrying that signs and symptoms point that direction can be terrifying, alienating and overwhelming.  Often parents think the situation is temporary and will resolve itself like a typical illness.  Certainly the duration of this peculiar illness you are facing will be similar to the flu or a cold or at the most pneumonia.  What happens when this situation drags on longer than you expected?  When the symptoms increase and get worse than you ever could have pictured?  When what you are going through is so extreme that you truly cannot explain it appropriately to anyone else?

Our family has knowingly lived with PANDAS for almost 7 years.  With the knowledge we now have we realize we have probably been living with it since the birth of our first daughter almost 10 years ago.  We have investigated any treatment that has ever been introduced to us and have implemented a plethora of them.  We are intimately familiar with conventional medicine, alternative medicine, energy healing and more and see merit in all of them.

My personality is not one that easily asks for help.  Our child that has PANDAS is our oldest and before we knew what was going on we really thought we were failing at the whole parenting thing.  Even if asking for help was something that was easy for me, how do you really explain what kind of help you need?

ebooksNow that our family is 10 years into the PANDAS life, we have accumulated some serious knowledge on a lot of fronts.  We want to be able to help other families who are finding themselves overwhelmed and don’t know where to turn because the typical family doesn’t really understand what you are going through.

I am planning on writing a series of ebooks on Strep, Lyme, situations we have been in, therapies we have used, testing we have done, legal issues we have considered and more for the sake of making PANDAS feel less isolating.  I could easily make each book hundreds of pages long but I don’t want to further overwhelm people so I will try to keep them succinct.  I’m happy to answer any questions you may have in the comments section or via email. If there is a specific topic that you would really like to see covered please let me know in the comments.

 

How did we get to homeopathy? April 8, 2015

Filed under: Uncategorized — pandasmom @ 3:20 am

So, I know this blog has been dormant for almost 3 years.  Things were just too depressing to keep posting.  I am not a downer by nature.  Through all of this, I have learned that I am a pessimist, though.  It seemed that things just kept going down and down.  How far could they go?  Well, they kept plunging until about 2 weeks ago.  After a rage where I was literally unable to get to my feet I realized that our family will not survive if I don’t start taking care of myself.  And so I did.  I know you read this everywhere, take care of yourself first.  But how is that possible when you are literally in the trenches for over 6 years and over 22 hours/day straight?  We always just thought that because this came on so suddenly that it would go away eventually and completely.  Well, that’s not going to happen.  And now we are a family of 5.  We have been operating as if we are a family of 1 and that person is our PANDAS child.  After having an infant, I can see that we can’t subject him to this long term; he will not thrive.  How could I have let this happen to our other child for all but 18 months of her life?  I’m distraught about it, but must move forward with this new knowledge.  The baby is a blessing to all of us in so many ways.

Enter homeopathy.  We started with this about 4 years ago because our insurance company required it.  That might have been one of the luckiest days of our life.  We saw miracle improvements in our PANDAS daughter on homeopathy.  But at that time I still really didn’t understand it.  Fast forward to summer of 2014 and I really started to get it.  There are mamas out there who are making huge strides with their PANDAS, etc children with homeopathy alone.  Since we had literally seen miracles with our child on homeopathy I really took interest in this.  Their were some mamas who were becoming homeopaths themselves and I got an ah-ha moment from this.  Who has more interest in your child than yourself?  I really wanted to become an ND but that is a 5 year full time commitment.  Not possible in this household.  Our PANDAS child is the work of 3 children on her own.  And I realized that I truly was interested and felt drawn to homeopathy.  I found a school where you can do most of the work online at your own pace and signed up.

That is also when I realized that at our clinic the majority of the families have a set of similar symptoms.  Of course they are all different, but they still have a similar thread.  So, since I was working to help my daughter I thought there was a chance I could help other families. And thus, I have been working with other families for a few months and I have been able to help them.  Some are even worse off than us.   Seeing everyone else persevere through their own situations has given more strength to just deal with my own life.  I have been able to solve many problems that are common to PANDAS/Lyme/Autistic families and I would love to help others.

I can meet with you in person if you are local or Skype with you if you aren’t. 

If you aren’t ready for homeopathy yet don’t worry.  You can follow along this blog and possibly learn some things that can help you make a decision if this is a route you want to go.  When people ask me what homeopathy is, I respond with “If you are lucky enough to not know what it is, then good for you!!!!”

Contact me

 

Homeopathic successes!! April 2, 2015

Filed under: Uncategorized — pandasmom @ 6:51 pm

I’ve been treating families that are dealing with PANDAS, Lyme, Autism and autoimmune diseases.  I considered most of these cases to be quite difficult but we are seeing great results!  I’m so happy for these families.

At this point my current approach is to go after the main symptom/issue that the child has and attempt to improve upon it.  Thus far, I have been successful with everyone!  For this reason, I want to open my practice a bit further.  If you are local, I’m happy to meet with you in person (I live in Seattle).  If you are remote, we can do sessions over Skype and I can mail your remedies to you.  I think that it is super important to note the order in which I suggest treating family members.  The child with PANDAS has had it for some length of time.  I truly believe the child will not heal all the way until all family members have calmed down.  Calming down looks different in every family but perhaps “burnt out” could be a way to describe parents and other siblings.  The order in which you want to treat is up to you, but the most burnt out member of the family should be treated in conjunction with your child or at the very least they should be the second one to be treated.  Our family has been dealing with this for 6 1/2 years and I feel that we won’t progress much more if we don’t address me urgently.

These success stories have really taken me to a new level in my passion and belief in homeopathy!  Some of the issues that have been solved or improved are eczema, constipation, fear of death, sleeping problems, self hatred and some gastro issues.  If you are familiar with PANDAS these symptoms are likely a part of your everyday life.  If you are not familiar with PANDAS these issues sound crazy.  If I were in your shoes I would just feel lucky that these issues sound extreme!!

Homeopathy is such an easy process for the body.  I wish I would have known more about it in the beginning because I think we could have reduced the intensity of our flares while at the same time working on curing our children.

I look forward to working with you.  Please email info@kathleenthornton.com with questions or to set up an appointment.

The other item we have added into our regimen is Essential Oils.  I have used EOs for years just for an uplifting scent or a relaxing lavender bath.  I have now learned a ton about pure EOs and all the ways they can be used in health and healing.  I will write another post about EOs in the future but feel free to ask me any questions you might have.

 

Homeopathy! March 31, 2015

Filed under: Uncategorized — pandasmom @ 4:51 pm

I know this blog has been on standstill for quite some time.  I really didn’t want to just moan and complain that we never get better, so I took a break from writing.  Things have definitely changed for us over the years but only because A’s age and maturity level have changed.  Things are still as hard as ever but we now have a very weary family.

I am now studying to be a fully certified homeopath.  Because A doesn’t seem to get better and stay better I felt the need to take matters into my own hands.  I really wanted to become a naturopath, but that is a 5 year full time process.  Homeopathy is what has helped A the most so I decided to go to school for that.  I am learning so much and I do feel quite a bit more hope that I can help her.

The families at our pediatrician’s office all have a common symptom set about them.  Of course they are all unique, but we seem to have a lot of consistencies.  For that reason, I am able to practice a narrow field of homeopathy under our pediatrician.

For anyone new to this blog, we have been dealing with this for 6 1/2 years.  Our official diagnosis is PANDAS and congenital Lyme as well as Bartonella.  I do feel quite hopeful that by making A my main patient that we may get some results.  I’m also learning from the families that I have treated.  Again, since they symptom set overlaps so much, their problems are my problems too and I have a very vested interest in alleviating or clearing their symptoms.

Some of the symptoms we have been working to solve are irritability, anger, OCD, no sleep, anxiety, skin problems, gut problems or more.

At this point I do feel qualified to help our PANDAS, Lyme etc children even if you aren’t local.  I also feel that we need to take care of the main caregiver at least as much if not more than the child.

Please let me know if you have any questions.  And watch for more regular postings as well.

 

Hospital? January 19, 2013

Filed under: Uncategorized — pandasmom @ 6:58 pm

I don’t think there have been huge improvements in A from the steroids.  I am so frustrated and let down.  It turns out we were administering the steroids at too low of a dose (mom error in reading the label), but we have upped her dose to the true Rx and then upped it again to the max dose.  I don’t feel like we are seeing what we should be.

After another rough morning I told J that I think we should go for IVIG.  We haven’t done this in almost 3 years.  But the rest of our bag of tricks aren’t working.  J thinks that IVIG has never worked for us and that this is just our child.  I think he is just beaten down.  I think it does work but is short lived.

 

What will today bring? January 13, 2013

Filed under: Uncategorized — pandasmom @ 3:03 pm
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It’s almost time to wake up and I am so apprehensive to see how A is doing today.  Please let the steroids and antibiotics have a positive effect!

 

Steriods

Filed under: Uncategorized — pandasmom @ 12:29 am
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I want to document this so that I don’t question it next time we have to use steroids.  A is a very quick responder to a treatment if it is going to work.  She is also a quick responder when something goes badly.  We decided to give A steroids for the first time in about 3 years.  It was a very difficult decision because of all the side effects.  But we did decide to proceed.  Within 5 hours of getting the first dose, A had improved.  The next day she was also doing great.   J and I both felt like we got a taste of what it must be like to be in a “normal” family.

Then today we woke up to a complete disaster.  The return of all her symptoms.  It felt like getting ripped off because we had our hopes up that the change would last for a bit.  We had one really bad episode this morning and it was followed by another one this afternoon.  It is so exhausting to go through these ups and downs.  Mostly downs.  It feels so hopeless and overwhelming. 

While brainstorming why this would be happening I thought to call the ped office and see if our ped was on call.  It was our lucky day and she was on call and answered.  After explaining the situation she immediately said that A had been exposed to strep.  Since it is the weekend and A hasn’t been around anyone the ped had all of us swab ourselves for strep.  Lo and behold, C has active strep!!! 

I am delighted that we had a positive test.  But too beaten down to get our hopes up that A will return to where she was yesterday.  I hope so much to be proven wrong.  In the meantime, both girls will be on antibiotics indefinitely.  That is fine with me if we can get A to improve and stay that way.