I don’t even know where to begin writing….never usually at a loss when it comes to verbalizing all that has happened but my head is so jumbled. I am going to try to find the words even though they aren’t flowing in my mind and through my fingers as they usually do. If this post is all over the place, you know why.
We left last Wednesday for Hannah’s third round of HD IVIG infusions. She did pretty well with the infusions on Thursday and Friday. Dennis left early Saturday morning to fly home because Hannah and I had to stay for a doctor appointment the following Tuesday with the new Immunologist. So, it was pointless to travel home to then turn right around and drive 4 hours back to St. Pete. Dennis had to get home to work so we parted ways. We thought it would be okay as Hannah was on high doses of steroids after IVIG as we were tapering off of them. Hannah is usually at her very BEST on steroids so we never in a million years thought we would have struggles. We were very wrong!
The first morning of IVIG before the weekend. One of the last hugs I got before the nightmare began!
Saturday morning Hannah did great but after lunch it hit….the rage, anger, aggression, anxiety and over-the-top OCD. Now, when people say OCD, most of the time it isn’t as severe as what Hannah has. I am known to have OCD tendencies myself but nothing like Hannah does due to PANDAS! This OCD is unmanageable. It is frightening, harmful and over-the-top out of control! It does consist of turning lights off and on and closing doors and drawers but that stuff is not the problem. It is the repetitive talk and especially harmful talk like “hurt mommy, hurt Hannah, hurt people, kick people, hit people, no good girl, scream more, pull hair, not nice,” etc. She says phrases like that and unfortunately acts on it as well. She will find a part of her body (finger, top of head, inside mouth) and bite and scratch until it is bleeding. She will not stop…..and the more you draw attention to it, the more she does it with this look of “try to make me stop” in her eyes. She will find a few phrases and repeat them non-stop…..”mommy get her bath, mommy go Publix, Hannah eat now.” When I say she repeats things…..I don’t mean once or twice, I mean 400 times and I am NOT exaggerating! It is insane! That is just a little glimpse of the OCD. Let’s not even talk about the rage and aggression because it is horrific! She hurts me and herself and she is so very strong. Kicking, biting, scratching, hitting…..all you can do is get out of her way or hold her wrists standing behind her (so she cannot kick you) until it passes. I never in a million years thought we would be dealing with this kind of aggression or rage. Hannah is so very sweet and loving; calm natured, but when that inflammation hits her brain she is a completely different child and it is heart wrenching!
Alone…..I dealt with her rage, anger, aggression, anxiety and OCD all weekend long alone. Everytime I would go to touch her she would attack. The only thing that helped was her iPad. I would set it up in the bathroom just to give her a bath so I could do it without being attacked. I would play music videos. As she watched them I cried, prayed and bathed her as quickly as I could. Giving her medications each morning and evening I again used her iPad as a distraction and putting her to bed instead of being right by her bedside praying with her, I was in a chair out of reach. If you are a mom, can you imagine not being able to touch or console your child without fear of being attacked? There are no words…..I just know in my heart it isn’t her….she doesn’t know what she is doing and I beg God to heal her brain so this will be a distant memory soon.
We went through the whole weekend locked up in a hotel room because I didn’t dare take her out. We tried once to go for a walk and that was a mistake so we stayed in the room….alone and sad. Finally, Tuesday got there and I got us ready and we headed to the Immunologist. Hannah was doing pretty good that morning with no rage and was compliant so I was thankful. We even texted Dennis a picture waiting at the doctor’s office all smiles and hugging! I thought we were past the worst of it.
Waiting in the doctor’s office on Tuesday. The first day since Saturday that she smiled and let me this close to her.
We were praying for help from this doctor. Some hope for more treatment that would help bring Hannah back to us for good not only with PANDAS but her immune-deficiency. We waited nearly 3 hours for the doctor to even come into the exam room and during that time I watched Hannah decline in her personality and behavior. At one point the Resident came in to take a brief history and as soon as he left Hannah attacked me viciously. The doctor finally came in and Hannah was very pale and lethargic. She did a quick exam and said, “well there is really nothing I can do for you except re-vaccinate her for her pneumococcal vaccine (Hannah has no antibodies from that vaccine as a baby). Problem is if we re-vaccinate her, it will go straight to her brain and she will flare just like she did with the flu shot last year. I looked at the doctor and refused the vaccination (judge me if you want but there is no way my child is getting anymore vaccinations EVER!) Read about PANDAS and you will know why. I then asked her about her low IgG, IgA and IgM and she said, “well you are already receiving the treatment for immune-deficiency with IVIG so there is nothing more I can do for you.” I had tears welling up in my eyes and asked her why she even saw us then knowing why we were coming? She had all of Hannah’s information prior to our appointment and had plenty of time to look at her records and labs and should have never scheduled the appointment. I was livid. We spent an extra 4 nights in the hotel that we didn’t have to. We could have all come home on Saturday together and I wouldn’t have spent 4 hellish days trapped with a raging child in a hotel room. The doctor then told me that we could do new labs after IVIG was completed for 6 months. So, we have to wait for 6 months after the last dose of IVIG (which we don’t know when that will be) before you can do more testing? Completely unacceptable to have even seen us! I gathered my things and went to take Hannah’s hand and Hannah attacked me scratching me and hitting me right in front of the doctor. The doctor looked at me and said, “let’s see you again in 6 months.” Don’t hold your breath lady! Never again will I return to a doctor that stood there and refused to help me as my daughter attacked me viciously. By this time I had tears streaming down my face and NO ONE said a word….the nurse, the doctor, the receptionist…..all seeing this, just starred! I was mortified!
It didn’t end there…..I called the hotel for the shuttle to come pick me up and Hannah continued to attack me in the shuttle. The driver was so sweet and asked if he could do something. I said, “just put the pedal to the medal,” which he did. Walking in the hotel lobby Hannah went berserk….people all in the lobby just stopped and starred. I held Hannah by the wrist and just said, “it’s been a bad day” and kept walking to the elevator breaking down in tears when the door closed. I was embarrassed, sad, angry and heartbroken! I felt like my heart was about to explode! I got Hannah inside and gave her some juice while she sat on the potty. I called Dennis and cried hysterically telling him I was so DONE! “I don’t know how to do this anymore…..I don’t know how to go on……I don’t know what to do……my heartaches…..I am so very broken.” All he could do was say, “baby, I am so sorry….I am so very, very sorry.” I know I sounded suicidal….I promise, I wasn’t even though I will be the first to admit that I can’t wait for Heaven!
Long story, short…..we made it home yesterday! Hannah and I made it in 3 hours and 40 minutes from St. Pete to the house! Yes, I think I went 90mph the whole way home; well except through Orlando as traffic slowed me down to 70mph! HA! Hannah was manic and then lethargic the whole way home. I did have to give her a Clonzepam (Valium) after she tried to open the door of the truck heading down I-4! Thank the Lord for Child Safety Locks! Yikes! I came home to a compassionate husband, a clean house, clean laundry, dinner and chocolate covered sea salt caramels. Kudos to him for loving me even when I am unlovable! The stress of this life is almost too much at times…..it wears on you in every aspect of your life; especially your marriage. But, I am thankful for a husband that sees past his own needs and sees how broken and tired his wife is and only cares about me! One day, (I keep promising him), it is going to get better and we will get “us” back. I long for that. As much as we love and adore our little girl…..we have lost us and that is devastating! Thankful for a Godly husband who is sticking this out with me……no matter the cost we are both paying.
So, that was my week from hell…..how was your week? HA!
Now, quickly I need to address something. I found out after I got home that someone in my life (who will remain nameless) continues to spread lies to so many I care about. I will not go into details but I will say this. Two years ago an incident happened that I have kept my mouth shut about and so has Dennis; and we will continue to. But, I want to caution you…..if someone says something to you that you don’t think can possibly be true knowing mine and Dennis’ character, PLEASE do not believe it, no matter who the person is. If you hear something and question it, please come to Dennis, me or even my parents to clear the air. There is an individual who continues to lie and manipulate anyone that they possibly can against Dennis and me. All I ask is that you get all the facts before you believe anyone that wants to slander us. In fact, no matter who gossips…..it is just that…..gossip! Sometimes people think gossip and lies make them look better so they continue to do it. Heck, I have gossiped in the past and I say that with much regret and know it was wrong….who hasn’t? But, before we believe everything we hear……remember sometimes people are just mean and bitter and want pity. In this case, I swear on everything I hold dear…..they are lies! It took a long time for me to “forgive” this person and then I get home from this trip and I find out even 2 years later this person is still at it…..I have nothing to do with this individual but it hasn’t stopped them. So all I ask is that you please consider the source and know that Dennis and I are better than the lies this person keeps telling.
Sorry I had to say that as now some of our dearest and most faithful friends are being pulled into this and I will not continue to sit by and watch the bitterness and resentfulness of ONE individual corrupt mine or my husband’s character!
Until next time……..