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Priscilla

a message of hope

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Hello, its been a long time since I've been here..but just happened upon a quote I keep on my fridge.. Something I came across several years ago in my dark days and it really resonated with me, I've kept it... And this moment I just had, made me feel I need to share a message of hope for u. I get frustrated when desperately searching forums for anything, and u never see the outcome.. So I feel it is my duty to give u some hope.

I was a regular here several years ago, my daughter was slipping from me, an 8 year old that seemed to be losing her mind, posesed even..we desperately tried everything... Pandas, Lyme, tourettes...years of antibiotics, 7 supplements a day, diet that was gluten, dairy, wheat, and sugar free (what the did I feed her?) Multiple ivig treatments, counseling...all of which this strong willed child protested..it was .

Hair pulling, couldn't say certain words, no door ways , nothing passing her side, couldn't touch her, jumping spitting, grunting, violent outbursts, and all kinds of other rules her mind made that I could never even know..

So here we are..14 and a half years now.. I would love to say it miraculously got easier...but it hasn't ..as a matter of fact..this strong willed teen got worse,

Bigger, stronger, and raging hormones with no period at 14 years old.. By last Jan we did what I have avoided since 7 years old..she was hospitalized for 5 days..it was necessary.. Violent and physical altercations ( with her now bigger than me!) And put on partial outpatient program for 3 weeks Instead of school.. I was fortunate to have a wonderful program available for this.. And am not recommending hospitalization because as a nurse with some mental health experience ..it often does more harm then good...u need to find your path...

I'm not sure what she learned from it..as she is..as always very resistant to discussing these issues..but she did get a bit better.. And opened up a little.. And I learned how damaging my good intentions to constantly seek help for her have been...she has always seen me as trying to "fix" her..a brief conversation about this.. And me telling her I know she can't help it..and doesn't want it..but letting it go has been huge... Is it easy? Absolutely not, are there still issues? Yup..but by June if this year..period came..I we afraid..will it get better or worse? I have to say..better..things seemed to be balancing.. School was horrible last year..(8th grade) the worst yet...but we just started high school ..she loves it..grades ate great..and Ocd and tics definitely milder..but still there...is it me backing off? Puberty finally giving relief? I don't know.. But I am confident she WILL be OKAY.. Different..but ok..I just wanted to give those of you who are where we were just a few years ago hope😀😀

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Thank you so much for sharing. It encapsulates the journey of so many on this forum. What I love best is your message that reminds us parents to embrace the better moments....and Acceptance. What has kept me most sane and hopeful is the knowledge that most people carry a cross of some kind. We are not unique. I draw strength from that.

 

Continued Blessings,

 

Q

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From our experience, maturation -- both physical (immune system) and mental/emotional -- can bring a lot of good things to the party. Especially if you have the supportive relationships and therapeutic techniques and tools in place to help along the way.

 

Quannie, I really appreciate your "carry a cross of some kind," as it resonates deeply with me. Most families struggle with something at some point -- chronic illness, addiction, dysfunction, financial challenges, etc. I've often thought that, while my DS had a horrible couple of years that really tested all of us, I'm grateful that he remains, at his core, kind, gentle, thoughtful, bright, compassionate, loving and resilient. And all of those best qualities have "rubbed off" on the family, to some extent, making us stronger in the end. Maybe the heavier the cross, the stronger one becomes!

 

All the best!

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So true.. well we've struggled through all of this yet my daughter is a much better person than I was at her age and we share a very special bond Sisterhood having struggled through this together and for sure having other moms the speak to that I understand has been a godsend

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What has kept me most sane and hopeful is the knowledge that most people carry a cross of some kind. We are not unique. I draw strength from that.

I'm never sure why this cheers people up.

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For so long we endured similar. Success and failures with magic pills. Discovering various infections that were causing flares. A Plethora of tests. Negatives and positives. Some common themes are, sensitively to doses. Too much or too long can cause reactions as can surprising not enough not long enough. Diet can cause exsaberation. Sugar, gluten, etc. DD responded to ibuprofen with sudifed for over a year but then her autoimmune started reacting to it becoming a trigger and attacking her organs. Finding what throws their immune system is crucial. mitochondrial support has been keeping her rages under control the past 6 months. We been so exhausted that we still have to learn what that is. I bought a climbing harness with belt clips that DD can just step into. It has belt loops that bracelets can quickly be clipped to as a temporary restraint because she can pummel her face with bloody nose, bruised eyes, broken swollen lips and even rips out her hair out trying to get "it" out of her head. An episode can last 30-40 minuites. With the mitochondrial support restraining is less necessary but when a period comes it can get bad for a few days. I've been working with DD to self control in a safe place, which is her Bed. Behavior is tough with cognitive regression. I'm trying to learn how to use the newer behavior services that are springing up since many of the social services has no clue or we haven't found the right way to ask. I do know they are taught only to address asked questions. So one tip is to ask specifically that you want every service your child is entitled to.

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That sounds terrible, you all have my sympathy. Glad if some things are helping.

Can I ask, how DO you find out what throws the immune system - how did you know that that was what had happened with the ibuprofen? Sounds like something we should know!

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I won't be able to answer that question. But I can say that it was mostly trial and error And persistence and determination or you can have money to hire smart people to figure it out. Blood test after urine test, after blood test and allergy test and strep test. Finding high liver numbers, backward thyroid numbers etc. (doctors) should know, but most don't have exposure to patients with these symptoms with traditional medical practice being a referral to a psychiatrist and then to admit to a mental institution. When your going through months of multiple daily rages you try stuff.

 

Some people with experience said ibuprofen worked for them. We tried 1000 mg and it had an affect on reducing the rage and other symptoms and sometimes it abated the rage. The er doctor suggested benadryl. We had some success with benadryl but after it wore off, the symptoms were more intense including the rage. We discovered by accident that Advil cold and sinus, was a magic pill. Sometimes once a day was enough and at other times it was three or even for times a day to keep the symptoms away. We loved it caused it worked. But it only masks the problem and when used too long has side affects. It has only 200mg ibuprofen but 30mg of pseudoephed. The neurologist said they often prescribed pseudoephed for ADHD patients. Dd's MRI's were clear but the neuro said her inflammation may be on a smaller scale may not have been picked up by traditional MRI. It needed one where they monitor the brain flow rather than tissue inflammation. The problem was dd's anxiety was too much for her to do the test. We had many failed attempts. This was before we had the pandas diagnosis. We later found out with the cunningham panel with results and her high numbers that the benadryl being a blocker damming the buildup in her basal ganglia causing a bigger buildup and the pseudoephed actually promoted the binding helping to clear the buildup. Which made sense to the pandas doc. The pandas doc monitored her closely every two weeks. She had early success that lasted 8 months with a steroid blast. Somehow it resets the immune system.

 

The doctor you have, has to be involved with your health if you are going to make progress. Having Pandas is not like treating a single infection. Most GP's have revolving doors to speed through patients in order to collect fees. It's a business. Dd's first GP was not helpful and if my wife being an OR nurse being familiar with the system kicks butts with sub-par services. I hunted down a new GP that was a biology specialist exposed to one pandas patient. She diagnosed DD with an unknown autoimmune illness. It got us pointed in the right direction but we also had no idea of just how difficult finding lasting help would be.

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