Changing Ones Perspective - From Stressed To Blessed

Today was pretty awful, no change that, it was spectacularly awful. The girls were scrapping before they were even out of bed. Kiana has been dealing with some major anxiety since I got sick. She just knows I am going to die, so she has upped all her survival skills. Think lying, manipulating, pouring on the charm with people outside the family... All things that rear their ugly heads only when her past trauma comes knocking. She told Dean she is treating me so badly so it doesn't hurt as much when I die. Dean reminded her that no one who loses a loved one ever regrets the love and kindest they showed that person while they were still on earth. Last night we had a long chat with Kiana and I thought we had things cleared up. I should have known better, rationalization is not something the traumatized brain responds to.

After a chaotic breakfast we settled in to do our school work, and Joseph promptly flipped out over his math. He successfully completed third grade math last year, so I naively assumed he was ready to progress onto fourth grade. He wasn't, and math has been the source of many chaotic moments. Originally I blamed some of it on "summer brain," but in reality it is more than that. Due to FASD, he really needs to be in school year round to retain what he has learned. I cringe at the thought however, because I know full well how he would feel about that. Anyway, the first sign that something was wrong were the huff's n sighs coming from Joseph's corner of the kitchen table. Then he began verbalizing his displeasure and it went down hill from there. I realized his brain had gone too far down the FASD trail to do math, so I gave him another subject, something that sometimes works. He was having none of it though, because he wanted to do math, until I gave him the book, at which time he didn't want to do it. Books, pencils and words were sailing across the room, realizing I couldn't calm him, I put him in the shower fully clothed. For some reason, cold water will stop a meltdowns in it's tracks, he will go from screaming, kicking, hitting and throwing things, to smiling and telling us about his latest idea. Often he will stop mid scream, give us a big smile and that quickly the storm is over, except today it wasn't . Nothing helped so I put him in the pool where he swam several laps before calming down. Once back inside though, chaos resumed so I sent Dean a S.O.S. via text, essentially telling him we need professional help. He called me and suggested I put Joseph to bed with his stuffed puppy, Sport, and his weighted blanket. I did and peace ensued..... Until Kiana kicked up her heels.

Poor girl, in addition to her anxiety I am convinced her PANS is flaring again, or is it hormones?!? She melted down with a show that put Josephs meltdown to shame. Her high pitched shriek told me this wasn't just an, "I am upset with Mom," fit, it was brain inflammation. After trying all my tricks, none of which worked even the slightest bit, I took her out to the pool and had her swim laps. I texted Dean, "same pool, different rager." 

Joseph can't yell while swimming (the children can easily touch bottom, but it takes all his concentration to swim) big sister had no such problem, and the woods, and my poor ears, were ringing. I sat on the deck praying, asking God why? Why do my children have to suffer brain damage? Why do I have to home school? Why do they have to constantly face new threats to their security? At the same time I was thanking God that we live in a long drive and all our neighbors understand the circumstances surrounding the epic meltdowns that occur.

Eventually Kiana calmed down, we had lunch, Joseph was smiling again, and it was finally time for our quiet time. I sat down to sort through my feelings, read my Bible and pray because while the storms of the morning had calmed, they were still hovering on the horizon and I knew I needed to get myself grounded. I was helping Lia work through an issue when the dog started barking. A vehicle was parked in our drive. The driver had a stack of documents on the seat and he was clearly dressed up, funny what you notice when you are on high alert,  my first thought was, "Someone heard all the screaming and reported us!" Now who is being irrational?!? I quickly went over the things to remember even CPS comes knocking and typed up a text to Dean that read, "If I call you in the next moments answer ASAP!" Suddenly our answering machine picked up and I heard, "I am ______ from pest control, I am sitting in your drive, can you please get your dog?" I suddenly realized Kobi had been frantically barking all this time. I felt my heart stop it's frantic beating and all my frustration of the morning melted away. Suddenly, my overwhelming morning wasn't so overwhelming. The rages, hurtful words and actions no longer bothered me..... after all, CPS was not knocking at my door and in light of what I feared moments ago, I can handle whatever my little people dish out as they sort through trauma and deal with their limitations due to FASD. 

Perspective makes all the difference!!!

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We Have Hope Once More -Kiana's Lyme Disease Journey

Yesterday Dean and I took Kiana to a new Lyme doctor. A special thanks to everyone who prayed for us, God graciously answered those prayers! A few weeks ago, Kiana's previous LLMD told me there isn't anything more he can do for her as he isn't comfortable placing another PICC line since she developed a clot so quickly after her previous line was placed. The best he could do was to double her antibiotic and see her in a month. That didn't sit well with us, so we began looking for another doctor. How many times have we looked for doctors and therapist's over the years? Sometimes I wish I would have kept track, although it is probably good I didn't. 

Anyway, we had high hopes for one doctor but he failed to come through for us. Last week was particularly bad for Kiana and we realized we need to find a doctor now. Through much prayer, frantic research and phone calls, we found a doctor who, after hearing our story, agreed to stay after hours to see Kiana. Before contacting this doctor I had sent an email to ILADS asking for recommendations. I received a return email Monday morning and the new doctors name was included in their list. That felt like a direct confirmation from God that we were choosing the right path.

The problem many Lyme patients face is that the CDC claims that  Lyme disease can be treated with a round of antibiotic and that long term Lyme is very rare. We were told by a leading hospital that if the symptoms last longer than 4 weeks then it is a psychiatric problem versus a medical problem as the antibiotic will have eradicated the Lyme. This means that doctors who treat patients outside of the CDC's recommended treatment protocol, place themselves at risk, especially if the patient develops complications like Kiana did. As a result many Lyme doctors who use both medical and alternative treatment are not affiliated with any insurance companies, as that is often who will report the doctor. It is a complicated mess, one that often leaves Lyme patients hanging in limbo.

In light of all this, plus knowing Kiana needed help quickly, there was a lot hanging on this appointment. I was afraid the doctor wouldn't listen to our concerns, afraid she might brush us off or worse yet suggest Kiana needs psychiatric care. LymeMD explains why psychiatric drugs are typically not a good fit for a patient with neuro Lyme. However my biggest issue with these meds is the fact that I have been trying to wean off one for nearly three years now and have horrendous withdrawal. I refuse to put my child through that unless absolutely necessary. You can read about that here.

I have taken our children to countless appointments alone, several of them were even out of state. But for some reason this appointment intimidated me. I was so glad when Dean said he can take off work and go with me. Turns out it was good he did. He was able to remember many details of Kiana's illness which I had forgotten. The doctor checked Kiana very thoroughly and explained what she was looking for as well as what she found. She gave a list of lab work to get completed, along with supplements to add to Kiana's daily regimen, explained what our options might be as far as treatment depending on what the lab work shows and answered our many questions. 1.5 hours later we were ready to leave and for the first time in a long time we felt hope. Hope, my friends, is a wonderful thing, especially when it has been missing!

Kiana has another appointment next week at which time the lab results should be in and the records we need will have been faxed to the correct places - at least that is what we are hoping happens! Please continue to keep Kiana in your prayers, she was listening in to the possible treatment plans and was not impressed!

Shovels Of Dirt - Filling In The Hole Made By Poor Choices

PANS and NeuroLyme can cause some pretty negative behaviors. When you add in trauma plus other things that have a detrimental affect on the brain, it is easy to see how a child can form some fairly intense responses that quickly become habits.

Thanks to the new combo of antibiotics and supplements we are using to treat her Lyme disease, Kiana has been doing better these past few weeks. She is now at the place where she is tired of the behaviors she has picked up, but they are so entrenched they are her first response to any situation. As her parents we are learning that it works best to give her a redo or coach her through better ways to respond when she lashes out. Prior to this she was unable to process anything we told her once she flipped out on us, so we are rejoicing at this new progress.

All along Dean has been telling her that she is digging a hole with her negative choices, "Someday you are going to have to dig yourself out," he warned, "And it is going to be very hard because you have dug a deep hole." She was in no frame of mind to care, much less work on making good choices. Nevertheless, we reminded her of this from time to time.

Last night we had the same discussion, although from a different angle, she wanted to fill in the hole she has dug but wasn't sure how to go about it. I told her that every time she makes the decision to tell the truth, not lash out in anger or to obey promptly she is putting another shovel of dirt into the hole. "You are going to have to stop and think before you act," I said, "For so long you have been throwing out one shovel full after the next because you were to upset to care about the choices you made. Now you are going to have to be very intentional about filling up that hole."

She was quiet for a moment then said, "If I make a bad choice does that mean I will have to start all over again?" I explained that each bad choice is like throwing another shovel full of dirt out, but each good choice means she put another shovel of dirt back in the hole. "Someday, the hole will be full and then it will be easier to make good choices without having to stop and think.

Sometimes I wonder if God looks down and smiles when I have this type of discussion with the children. So often the things my children and I struggle with parallel each other, sometimes in incredibly sobering ways! As I talk with the children God impresses upon my heart that I must do the same hard work I am asking of my children. Sobering indeed! Other times, I may be wrestling with an issue or trying to make sense of something and as I am talking with a child, the answer becomes crystal clear. It is so much easier to talk the talk than to actually walk the walk!

When Circumstances Are Beyond Our Control

I like when my life makes sense. I like to know I am doing the right thing in any given circumstance. Unfortunately, it seems Dean and I are constantly being dumped into situations where we either have to swim for our lives, or risk sinking. Humanly speaking, the scariest part about it all is, that we often have several things going on at once so we can't give any one scenario our full attention. Spiritually speaking, this is an excellent way to learn to trust.

Kiana has an appointment with the hematologist tomorrow. This appointment is a follow up for the blood clot she developed from her PICC line. At the hospital they did a test to see if she has a genetic clotting disorder. If this is the case, she may not be eligible for another PICC line, which she needs to fight her Lyme since many antibiotics do not cross the blood brain barrier and due to her age she is not able to take many that do.

On Thursday, she see's her Lyme doctor and we will deciding on a course of treatment based on what the hematologist says. She has been on an oral antibiotic since they pulled her line but it isn't helping much. Her past few days have been full of rages and brain fog. 

Joseph has changed again, something that happens periodically. We learn how to manage a particular FASD quirk only to have that vanish and something else take it's place. The latest thing is a big mouth without a filter. People with FASD find it difficult to see their own negative actions, but can easily see the faults of others. This trait is not endearing Joseph to his siblings in the least! He is constantly monitoring them, all the while doing things to irritate and annoy them. He likes to use big words, and his immature actions coupled with his large, expressive language can be a bit hard to swallow!

Yesterday I spoke with the lady who is over our, "Home school to be." We finished the testing and she called to tell me which levels each child will be on in the various subjects. She emailed me a massive packing order and I will admit that PO made it all look frighteningly real! Can I do this?! Although the thought of another year like last year, convinces me I have to try! 

SWAN is an organization that provides post adoption services. We are in the process of acquiring some of said services which means we have to have several home visits from COBYS, one of  the agencies through which SWAN provides services. Having strangers come into our home to do a home safety check thoroughly traumatized the three youngest. This man brought to mind a certain caseworker who came and was responsible for so much of the trauma our family experienced prior to Lia's adoption. It didn't help that as part of the home safety check, they had to make sure our smoke detectors work. Even though they saw Mr. D press the alarm, they still panicked.

All of these situations plus a few others, make me tremble in my shoes, until I am reminded that with God all things are possible!

Sunday Triggers

We had a meltdown of a different sort today. This one was based on trauma and while it manifested itself very differently than the one Joseph had on Friday, it was every bit as intense.

It started this morning. Sundays are major trigger days for Kiana for a variety of reasons, one of which is, listening to sermons brings about a barrage of feelings that she cannot handle and I often have a hard time deciphering. She has some major behavioral struggles right now due to Lyme and PANS. Sometimes she is accountable, sometimes not but she usually feels guilty after an episode even though we have explained why she reacts the way she does. Listening to a sermon often sets her off because as she says, "He is preaching about me!!!!" Since her behavioral issues are often so vast, she can usually find something in the message that she feels is directed at her personally.

The other big issue is fear. This morning we had an excellent message on living so that we are ready when Jesus returns and destroys the earth. It was a very timely message, one that spoke loudly to me but I was sure my 9 year old was listening and taking it all in, especially since she was "intently" reading her Bible. I pulled her close and asked how she is feeling. She gave me a wide eyed look and said, "I'm okay," a good sign that she was not okay!

After lunch she was stomping about the house raising chaos and being defiant. I tried talking to her but she refused to co operate so I was about to send her to bed when Dean said, "I wonder if this mornings message is bothering her." She vehemently denied it. Dean and I have a quote, "Me thinketh thou doth protest to much!" Meaning, the more the child protests that something isn't bothering them the more certain we are that it is. Kiana refused to talk about her big feelings, giving all sorts of superficial reasons for why she has them. By this time I was pretty sure I knew what was wrong but I wanted her to tell me versus me telling her what she was feeling. I explained how I learned in therapy that when something feels big and scary talking about it helps the scary feeling get smaller. "That is why I want you to tell me what is bothering you rather than me telling you what is wrong," I explained. Eventually she said, "I don't want my stuff to burn, what about my toys, my clothing...what about Kobi?" This is where it gets tough with children who have experienced complex trauma. Telling her to trust God to meet her needs will not make her feel any better because she has a hard time with trust. Telling her that she will have better things in Heaven doesn't help because in her mind Heaven is an unknown which makes it something to fear. 

Dean told her that just like Mom and Dad make sure she is safe and taken care of, in that we provide food, clothing and shelter, Jesus will do the same in Heaven. The more we talked the safer she felt and eventually we got her talked down from the place of fear and the thought of "losing my stuff" was no longer an issue. She gave me a hug and went cheerfully off for her nap.

Kiana and I spend many Sundays in the basement at church talking through her big feelings. While she despises doing this, it gives her and I an opportunity to work on our bond, which is always a blessing.

Update On Kiana

We are nearly 2/3 of the way through Kiana's first month of treatment with her LLMD (Lyme Literate Medical Doctor). Thankfully her rages have decreased greatly in intensity and they do not last nearly as long as they had even two weeks ago. We feel she is more emotionally unstable  and she certainly has a lot more physical symptoms, although that can be a good thing as it means the Lyme is dying off, but neither Dean nor I are sure that is what is happening. The more I learn about Lyme the scarier it is. The good thing is that knowing how devastating Lyme can be, gives me yet another opportunity to increase my trust and faith in God.

 Her therapy is also going pretty well. Mr D is a lot like Miss Laura, who used to be B's therapist. He and I talk about how Kiana was since her last visit before bringing her into the room which greatly hinders her ability to manipulate the session. Best of all he is a Christian! Her homework assignment for this week is to ask God to show her ways that she is special and then to report what she has learned at her next session. That is a tough assignment for someone suffering from her level of trauma and insecurities, but it is our prayer she will be surprised to learn just how special she is. Since she doesn't trust/believe Dean and I she doesn't believe us when we tell her we love her despite her actions. Neither does she believe she is a special girl, which we honestly think she is!

Living With PANS/PANDAS

Thanks to everyone who watched and shared the PANS/PANDAS video on yesterdays blog post. I received quite a few questions and thought I would do another post on the topic and give a little more insight into what PANS looks like for Kiana as well as why it is so difficult to find and acquire treatment.

How will I know if my child may have PANS/PANDAS?
Both diagnosis have an acute onset. Overnight the happy child is gone and in it's place is a child who has anxiety, fits of rage, OCD and tics among other things. 

How is PANS/PANDAS treated?
With antibiotics, anti inflammatory's, supplements and IVIG. The trouble is, most long term treatment with antibiotics is not covered by insurance, so doctors who successfully treat this illness do not take insurance. IVIG is a successful treatment but the cost of $5000-$10,000 per 10 pounds of body weight is not something many people can afford. Diet, supplements and life style changes are also incorporated to aid healing.

What is a Flare?
A flare is when you see an onset of new or recurrent symptoms. For instance, Kiana can be doing well and suddenly the rage is back. This rage is slightly different than a "trauma rage," although I can't really explain the difference other than it feels different and it is an angry rage versus an afraid rage. We are still working at getting Kiana back to baseline. She hasn't returned to the happy, healthy child she was over a year ago. When she returns to baseline and remains there for app. a year, she can discontinue treatment, although the disease can and will, return at any time.

Are the symptoms always the same?
No, they constantly change, although for Kiana, rages, verbal tics and intrusive thoughts have always accompanied a flare. Verbal tics are when a child makes constant noise with their mouth, not usually words, just noise. A morning of constant noise is enough to make my ears hurt. Intrusive thoughts are when a child has thoughts they cannot control, most often thoughts of harming themselves or others, which is terrifying for them. There is a huge variety of actions/behaviors that can be classified as tics, including facial grimacing and awkward body movements. The anxiety that usually accompanies this illness can be debilitating. Many children cannot even attend school because of their intense anxiety. Thankfully Kiana has not experienced it to that degree and the school has worked with us when it has been a problem. There can also be a host of physical side effects in addition to the devastating mental ones. PANS/PANDAS is an auto immune illness so one never knows what will be affected.

Will she ever be cured?
There is only speculation at this point as to how a child with this illness will be affected in adulthood. For now once she returns to baseline, if that ever happens, we will continue to treat each new flare as it comes. PANS, which is what Kiana has, is triggered by infections/stress and due to the trauma she has already suffered in her life, she is prone to stress which makes her illness more complex. This also makes it more difficult to get her to baseline as she is constantly faced with things that trigger her PANS.

The Faces Of PANDAS And PANS

A fellow PANS/PANDAS mom made the following video to help create awareness of this devastating disease. It is also a tribute to a brave young man who lost his life because of the pain and emotional turmoil he endured. Please watch it and share it, our hope is that by sharing our children's struggle's the medical field will recognize and be willing to provide affordable treatment for these children. 
                 The Faces Of P.A.N.D.A.S. And P.A.N.S.

When Doors Close

"When one door closes another opens; but we often look so long and so regretfully upon that closed door that we do not see the one that has opened for us." -Alexander Graham Bell

Door and door after door has slammed in my face in my search for health care for Kiana. The therapist we were so hopeful would work out is no longer taking new clients, neither is the PANS/PANDAS specialist. The nutritionist doesn't have openings until April and the price is a little overwhelming. Besides, do we have until April? The doctor Kiana is currently seeing prescribes one antibiotic after the next and while they take the edge off the more severe symptoms, that is about all they are doing. I find myself saying, "God, we need help here and every door is slammed in my face!"

Do you know what God reminded me of? The many, many times over the years when there wasn't a way out. Each and every time he made a way. So why can't I just sit back and trust him this time? Partly because I know what could happen if we don't get treatment and partly because I am tired of calling doctors only to be told, "Sorry we can't help you." So I began mentally going over the times God has made a way when there was no way.

-When I called TAP to talk about placing B there they initially told me they won't have an opening for 6 weeks. At the time I couldn't fathom waiting another six weeks. The very next day they said they had a room open up suddenly and we could bring him in 3 days!

-When CPS wanted to move Lia, God knocked down walls and opened doors that we didn't even know were there.

-There was the time I took Kiana to the doctor, feeling certain that she had PANS but not knowing if her pediatrician would be willing to discuss this controversial diagnosis. The doctor listened to my story and said did you ever hear of PANDAS? (PANDAS is caused by strep, PANS by stress & infections) 

-When school became to much for Joseph and the school board found a teacher willing to teach him for the remainder of the school term. I was so relieved, as I didn't feel up to homeschooling him which was our other option.

-When Joseph's dermatologist agreed that his eczema was caused by stress and worked with us to get him some relief.

-A long time ago before we knew much about RAD, I called a woman who lives clear across the USA, begging for help. She had experience parenting children with RAD and was able to give me many inside tips. We talked for several hours and when we hung up, I told Dean, "I found someone who believes our story, we aren't crazy after all!" 


"Thus saith the Lord, which maketh a way in the sea, and a path in the mighty waters..." Isaiah 43:16

How can I not trust a God who can make a way through the sea?

A New Diagnosis = Renewed Hope

   Thanks to everyone who has been praying for Kiana these past weeks. Yesterday I took her to the doctor and she thinks Kiana may have something called PANDAS, which is an autoimmune disorder. When a person contacts strep, their body produces antibodies to fight against it. Sometimes these antibodies attack the brain which results in neuropsychiatric behaviors. Kiana is being treated with antibiotics at this point. If she truly does have PANDAS she will develop symptoms every time she is in contact with strep, so it isn't a once and done thing. There can be many complications but we are hopeful that the antibiotics will help her this time around and we leave the future in God's hands. 

   I was praying for answers for Kiana while researching ways to help her/what could be causing her symptoms. In a trauma forum someone mentioned PANDAS and on a whim I looked it up. The symptoms people shared sounded so very familiar and we felt like there might be a way made after all. When I took Kiana to the doctor I wasn't sure how to ask the doctor if strep were a possibility (at this point the PANDAS diagnosis is still very controversial) when I explained what we were seeing in Kiana the doctor said, "Did you ever hear of PANDAS?" I felt God smiling down and reassuring me, "I have this, just trust me." 

   Tomorrow is Joseph's appointment at Geisinger. I was told to expect the appointment to last several hours so today I am taking it easy in preparation. I also spent sometime organizing his file. I have a plastic binder for each of our children and I store their test results, doctor visit reports as well as the papers from their neuropsych evaluations in them so I have everything at my finger tips when I go to these appointments. I have included doctor and pharmacy phone numbers as well as addresses. Keeping things organized is the only way I can keep track of everything.