The night before.
It's the night before we possibly admit Kreed to the hospital. So many thoughts run through our hearts and mind. And fear. So much fear. Fear the doctors won't listen to us. Fear that he will get worse. Fear for what his true diagnosis is. Fear of the unknown. We have no idea what caused Kreed to cease walking a day and a half ago. Or what started his hand tremors a month ago. Or why he cries or why he holds his legs out to us to tell us they hurt. We fear.
The night before I'm in the living room sleeping while his Bipap and oxygen machine are providing the night sounds because the only place he could sleep was his comfy green chair. So I sit out here worried and googling what could have possibly taken our son's ability to walk. His ability to be even remotely independent. His ability to communicate.
Today was so hard. He is completely wheelchair bound and he is now a full grown man almost. Transferring him from his wheelchair takes two people and even then it's difficult. So we fear. The unknown. Is this our life? Did our life just drastically change? Has he lost the ability to walk? What's happened? We don't know. So this night before is a mind trip. Of so many thoughts and feelings that get so jumbled. The anxiety is through the roof. The only peace is knowing he has finally slept after two days.
It's the night before and I don't know if I can sleep. So much unknown. So much unclear. So much could happen. All we know is Kreed is in pain and deteriorating before our very eyes and there is nothing we can do to stop it. Can the doctors? Can they see past his lack of ability to communicate? Can they see him, a boy of 18 who is probably more scared than we are because he doesn't understand why he suddenly can't walk? Can you even imagine losing the ability to function and not being able to tell a single soul? This is what keeps me up at night. Always.
It's the night before and all I can do is worry and think and research. And hope- always hope- that there will be a brighter day. But right now, in this very moment I fear. For his life, his ability to walk and if the doctors will be able to help.
This is the night before.
All I can say is I am so sorry for Kreed and you all. And that I will pray for healing and wisdom for the doctors.
ReplyDeletePraying they listen and you get some answers. Kreed deserves you at your best and the only way that will happen is if you get some answers and hopefully help. Keep us updated please as Kreed is too sweet and loving to lose.
ReplyDeleteErin. My heart is aching for Kreed. He's come to mean so much to me, as have you. Remember the last time he was in the hospital and things looked bleak for a time? You got him back! He was ready to go bowling again and to find french fries. Hang in there. I'll be praying so hard for Kreed. And for you. Lisa, Quirks and Chaos
ReplyDeleteI have no words. I cry and pray with you the everything will get better. Again I will light a candle at church for Kreed and hopefully soon God will hear our prayers.
ReplyDeletei hope he gets better soon
ReplyDeleteI know you don't know me personally but I just want to say I am sending lots of love,prayers and positive thoughts to you all.
ReplyDeleteMy heart is breaking for you and Kreed. I hope you get some answers and help for Kreed. It hurts to see our babies suffering and not be able to understand what they cannot tell us so we can help them.
ReplyDeleteI have no words. I have nothing to offer that will ease his pain... nothing to ease your fears except the knowledge that you are not alone in this. We are all watching and worrying with you. May this, in some way, bring comfort.-Nancy Clark
ReplyDeleteI cried when I read your blog last night as I have great affection for Kreed and you. I cannot begin to imagine how hard this is for you all but I am praying for you all that healing can be found quickly. Know that many of us are with you in spirit and rooting for you all xxxxxx.
ReplyDeleteHi Erin:
ReplyDeleteI have been following Kreed's history and wanted to say I can relate completely. My son has VERY similar issues. I know you have probably have, or are in the process of, ruling everything in or out medically. It is a nightmare journey to get doctors to understand or listen. Believe me, I get this completely!
Just wanted to throw out there some of what we have done so far in hopes that maybe one of them can help Kreed:
Make sure to rule out:
-Anti NMDR Receptor Enceph. This is a huge issue that gets missed. Dr. Najjar in NYC is the top expert in this. Has his immune system been thoroughly looked at in depth? Has any doctor ever tried Minocycline for inflammation (this can work wonders!)?
-Lyme (use very specific testing)
-PANDAS
-Is his ANA high?
-Has he had a specific MRI looking for Chiari Malformation?
-You said he has epilepsy (we deal with that too so I can relate! Grand Mal/generalized tonic clonic seizures here unfortunately). Are Kreed's generalized tonic clonic and what meds is he on for them?
-has he been seen by a DAN doctor and had allergy testing, urine testing looking for yeast, MTHF genetic deficiency (to absorb folic acid) testing, lactic acid testing and so on? How are his B12 levels?
-has Autism Related Catatonia been ruled in or out? This is the age group when this occurs and can present with some of these problems. It occurs in about 17% of the autism population. There is a facebook group which is very informative as well run by a mother in NJ. Dr. Najjar is also very knowledgeable in that area as well.
Kreed, as you probably already know, no doubt has severe Mito. which can present with extreme pain. Are there any Mito. doctors/experts in your area?
My son has all of these issues as well. We find the dysautonomic issues the most difficult since so many doctors don't understand this issue and they'll just throw prevention tips at you.
Has he been seen by an expert in dysautonomia? I mean a TRUE expert? This makes all the difference. Dr. Blair Grubb in Ohio is the best. I know it's difficult but maybe look into seeing him if possible.
Please keep us all posted.
oh Erin my thoughts and prayers are with you all xx
ReplyDeleteHas he had MRI's and/or CT's looking for any source of pain in this way?
ReplyDeleteI live on a different continent hundreds of thousands of miles from you. I have never met your family, I have never met Kreed. However this beautiful young man with a dazzling smile, great big dimples, who happily hops around. Who gets excited for French fries, sausage and bacon and a movie has made me fall in love. And not in a creepy way. I cry when I talk about him with my friends at the moment. I log into all of your social media for an update because I am worried sick. I cannot imagine what it is like for you as his parents and family! Kreed is a fighter and I am sure that you will get him back as you did last time. I am sending you positive thoughts and energy. And prayers for you all. I know you are a fighter Kreed, and I know it is tiring, but fight! And know that their are lots of people who are waiting to see you fight this too. And praying for you from all over the world.
ReplyDeleteHas anyone looked into Mast Cell Activation Disorder? Experts are in Boston and at Mayo from what I understand.
ReplyDeleteThe symptoms of mast cell activation are similar to those of fluoroquinolone toxicity. According to Mastocytosis Society Canada, the symptoms of mast cell activation are:
skin lesions or sores, skin rash, spots, redness, hives, persistent fatigue, itching, flushing & severe sweating, joint, bone pain, headaches, tachycardia (racing heartrate), eyes tearing/dry, eye pain, persistent body/tissue pain, difficulty exercising, vertigo, episodes of low body temperature, unexplained Vitamin B12 deficiency, scents/odors/chemical reactions, difficult menses (females), numbness & tingling in face and extremities, skin feels on fire, unexplained anxiety, sudden drops in blood pressure, fainting, persistent diarrhea, vomiting, unexplained weight loss, cognitive impairment, sinus problems, chest pain, vision problems, hair loss, mouth sores, nausea, swelling & inflammation, odd reactions to insect stings, anesthesia difficulties, anemia, thyroid problems, decreased bone density, unexplained weakness, shortness of breath, sunlight sensitivity, temperature (hot/cold) sensitivity, difficulty with foods, drinks, anaphylactoid reactions, anaphylaxis, gastrointestinal pain, bloating, unexplained medication reactions, enlarged liver/spleen, liver/spleen/bladder/kidney pain, enlarged lymph nodes, frequent urination, recurring infections, neuropathic pain, constipation, iron deficiency, unexplained bruising, bleeding, malabsorption, intermittent tinnitus or hearing problems.
I hope that you feel better soon and get the answers that you need and I am sending you prayers your way
ReplyDelete