I have a confession to make. I have been putting off calling the Dysautonomia Clinic at NYU. I should have called on Monday but I was scared. Right now I feel sick to my stomach and utterly helpless.
I was afraid to call NYU because I was scared to death of what they would tell me about Gavin.
Deep down, I had this nagging feeling that this was going to be another dead end and I simply couldn’t face it. We’ve hit so many dead ends already. I was also afraid that they would want to see him and there would be no way for me to get him there.
I worked up the courage to call NYU this morning and my fears were confirmed. They won’t see him.
Logically, their argument makes sense. This doctor reviewed all Gavin’s records and spoke with Dr. Moodley directly, at the Cleveland Clinic. It comes down to the simple fact that they can’t do anything that hasn’t already been done. Essentially, she has nothing to contribute.
I got off the phone and just cried.
We are supposed to follow up with Dr. Moodley and that’s that. We have hit another dead end.
It should be said that I’m not resentful or angry at NYU or John’s Hopkins because logically I know they’re right. On a purely emotional level though, I feel abandoned. The reality is that the trip would be very difficult for Gavin and to do that for no reason, doesn’t make any sense.
If either of these doctors can say that there isn’t anything they can do that hasn’t already been done, what’s the point? The ends wouldn’t justify the risk to Gavin.
I haven’t told Lizze yet because she’s resting right now and there will be time to break her heart later. 🙁
Here’s the thing and I’m going to be really, really honest.
It’s my belief that the problem is that we don’t have anyone that can stand back and look at the picture as a whole. Gavin’s got doctors for each of the main, life threatening health issues. He has a specialist for his primary immunodeficiency, a doctor for his epilepsy and a specialist for all the autonomic dysfunction.
In the core of who I am, I believe that all these things are connected. There’s a major neurological side, evidenced by the autonomic dysfunction, epilepsy, cognitive regression, loss of memory, loss of neuromuscular control and speech regression. There’s the immunodeficiency that’s worsening and being treated with IVIG. I don’t even pretend to know where the mental health side of things comes in to play.
Many times I’ve expressed a desire to find a real life Dr. House.
We need a team of doctors that can look at everything as a whole and figure out what’s wrong and design a course of action. If nothing else, they could help to prepare us for what’s to come.
I’m absolutely terrified that we are losing Gavin. I don’t know how much time we have left but I truly feel as though we are already burrowing it. I’m so completely heartbroken and I don’t know what’s left that we can do….. I feel like we’re failing Gavin. I also feel like we’re failing Elliott and Emmett because we put so much into their big brother.
As I write this, I’m feeling defeated, depressed, heartbroken and utterly helpless. :'(
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That is just Awesome and restores Faith in Humanity to see someone reaching out like that, the part about staying in the basement just so he can be close to the Dr.!!!! Thank You! I was just reading about Gavin and sent something about this Neurologist who helped change my sons life after he had a prenatal Ischemic Stroke, came across this !! Wish we had more people in this world as kind as u are!❤️❤️
rjones22 @Shannon Anderson @Pamela Smith Gaskin @Lisa Shuey @Dane Hansen @Kelly Hafer pueblokc Pooshnc Tammymcgann @irmacita76 Thank you everyone for all your kind words and support. This is a really difficult situation to work through. Thanks again for everything. 🙂
Gosh, I really get this! My son’s issues are no where near as severe as Gavin’s so, I don’t get that part as well but, what I do get is the need to have someone look at the whole picture of what is going on. The idea that all these things aren’t interconnected seems absurd to me at times.
The reason I really get that frustration is I am in a similar situation to your wife and again, the severity of each diagnosis is different than hers, but I have never been able to get a doctor to recognize that my issues are all likely interconnected. Let’s do this test for the neurologist, the rheumetologist, gastroenterologist, and on and on it goes. Seriously, can someone get a clue. I have actually wished to be in a car accident (before I had my son) so I could be hospitalized and hopefully they could figure something out. This has been going on for almost 20 years. Course now, I realize they probably wouldn’t figure it out either.
I am feeling heartbroken for the pain this brings. Especially as you share this news with you wife. Have you ever asked for a conference of the specialists the Cleveland Clinic. Perhaps if everyone got together at the same time, with all the results? I wonder if they would be willing to do that?
rjones22 Thank you for sharing. 🙂 Gavin’s IVIG is working, he just requires periodic increases. I’m thankful you shared this and your family will be in our thoughts and prayers…
I know this doesn’t help but I think it would have been worse if you went and they couldn’t do anything. That happended to us at John Hopkins. 12 hour ride there. the dr felt real bad about it. My son was mad at me because he knew that they wouldnt be able to help and he had a 12 hour car ride there and a 12 hour ride back in agonzing pain (while on pain meds) and then it took a week to recover. I feel bad for him because he thinks/knows that no one can help him. I, as his mother, will continue to go whereever whenever. He still lets me drag him to the different drs to help my sanity and that is the only reason. I didn’t know the IVIG wasn’t working for Gavin!!! My son is suposed to get it but I lost my job/insurance so we have to wait. I think from what I have read on your blog, Dr. Moodley is still your best bet. My son’s rheumatologist is the guy that gives the training and conferences on my sons autoimmune diesease (behcets) and founded the Congress of Clinical Rheumatology so I know we are where we need to be but when he says there is not anything more we can do to help it is devestating. I am glad you have Lizzie and I know it is going to be hard on her to hear as well. You are doing all you can do and that is all you can do. Your whole family has touched my life in such a profound way. Not that I want you to have any troubles but how you keep going has really helped me. I have never written anything on the internet except for your site (I was probably scared of CPS lol) I had to apply for food stamps the other day. Great news we were approved for a year!! Bad news is we are so bad off we were approved for a year!! The guy taking my application was so nice and I was so thankful. We are in AL and our govenor is not doing the obamacare thing and that is not good for us. I keep going on interviews for new jobs (lost my last one) and I am a great candidate and have a great documented sales history but my problem is too many jobs. I want to say sorry, my kid had cancer, had a bone marrow transplant, relapsed, recovered and was undiagnosed for 5 years an autoimmune disease only 200 people in the US have so it is hard to keep a job when you don’t know when a crisis will be or 10 million dr appt, or fighting with insurance or the pharmacy or anyone else that doesnt cooperate until I scream, cry, cuss etc (I have gotten better about that). I have had so far two great job interviews and got to the third interview and they chose someone else with a more stable job history. went on an interview today for a job I don’t even want and of course he had an issue with too many jobs. He knew that before he called me for the interview, so then he was then concerned that I didn’t know how to do a pivot table in excel. It is a sales job, i will be in the field, and if that was a main critera for the job that is just stupid (I came home, got on the internet, took a course, learned it, got a certificate saying I can do it and sent it to him). Whatever. to me it is an excuse not to hire me because he is concerned about me having too many jobs. I keep thinking in this economy especially since 2008 that I don’t understand why employers expect a 48 yr old to have just a couple of jobs. I know this is long and I got off topic but dangit I am doing the best I can and if I can give a company 2 years of consistant bringing in new business month after month with no bad business I ought to get the chance to do just that. At least we get to eat. I have to have the job for insurance for my son (plus bills of course). We have applied for his SSI but at the least it will take four months to be approved. Should have gotten him on it sooner but I kept thinking he was going to get better so I didn’t want it and he cant get on medicaid without the SSI being approved. What a freaking nightmare for the last 10 years. I keep thanking God my son is alive (and not more worse off and I have seen worse off) and my other son is so good to us. Thank you for your blog. This was my therapyfor the day. Again thanks for let me get that off my chest and I will keep praying for yall.
Have you gone to genetics? That's how we felt. We started at Akron children's NICU and had very disappointing follow ups. We ended up at cleveland clinic for neuro (including Moodley, Hsich and someone else), GI, rheumatology, opthamology and immunology. When we finally saw genetics (Rocio Moran) it was like someone was able to put all the puzzle pieces together. And we finally got a diagnosis and they're all related.
I want to add my thoughts and prayers to jenny's (a former co-worker and friend)…..there is NOTHING worse than seeing your child suffer and struggle. NOTHING….only parents who have walked this walk can have any concept of what you are going through-and each individual journey is different-but know that I will be thinking of and praying for you, your son and your whole family.
wish I could give you a real hug :(. I know you feel horrible right now, and I won't try to minimize it or make it better, but I am always here and praying for all of you
reality_autism I’m with you. Hug you x
So sorry Rob. I don’t know if you are aware of this page or not but maybe it can help you to find an someone with an answer to Gavin and his needs.
http://www.dysautonomia-pots-awarenessandsupport.com/dysautonomia-pots-doctors-list
I absolutely ADORE him. So please make that call. AND BEFORE HAND, do some research on The Lurie Center for Autism in Boston (technically Lexington, Massachusetts). You’ll be BLOWN AWAY by how incredible they are. Keep me updated!!!
Tell her your story and ask her if, HONESTLY, there is ANYTHING Dr. McDougle can do for your son. If not, my heart breaks for you, because they are THE BEST OF THE BEST IN THE COUNTRY. But if there’s even a slight hope that they can help you . . . I don’t even care how angry my husband gets at me for allowing a COMPLETE AND UTTER STRANGER FROM STAYING IN HIS HOUSE–if you need to, you can stay in our crappy basement “Man Town” 45 minutes away from Dr. McDougle. If Ellen Roth tells you there is a possibility that Dr. McDougle can help Gavin . . . Please, PLEASE make the call. You’ve been turned down sooooooooooo many times. Consider this a “last ditch effort”. I’ve seen “world-renowned” psychologists/psychiatrists on Jack’s behalf before . . . UTTER DISAPPOINTENT. But Dr. McDougle? Yeah, he’s a weirdo and his hair is strange and he wears bow-ties, but he’s INCREDIBLE. So down-to-earth. He has a daughter with Down syndrome so HE GETS IT.
Okay, I’m not even going to bother to read your entire post because my only advice would be to call The Lurie Center for Autism in Lexington, Massachusetts. They are TRULY world-renowned for treating every degree of autism, etc. I KNOW Gavin’s major issue isn’t autism, but again . . . they’re world-renowned. Call Dr. McDougle’s office at 781-860-1700. He is the most AMAZING pyschiatrist I’ve EVER met. (Don’t mess around with Dr. Munir at Children’s Hospital Boston, unless you’re a big fan of WASTING TIME) His assistant’s/nurse’s name is Ellen Roth. I don’t know if this will get you ANYWHERE, but ask to speak to his assistant Ellen Roth (c’mon now, we’re not the friendliest of people. You’ll probably need to leave a message for Ellen, which she will “promptly” return in 2-3 days) and tell her you’re a friend of Tammy McGann, whose son, Jack McGann, is a patient of Dr. McDougle.
Dear Heavenly Father – when we realize there are some things that WE cannot do, we realize that You can do everything. If it is your will God, heal Gavin, Please show Rob and Lizzie the path that they should follow to further your plans for their family and for Your Kingdom here on earth. Help them and each of us spend our days striving to do our best to do Your Will. In the end, even when we fail, we know that you are there to catch us when we fall, to help us up when we are sinking, to show us that You are God. Give them strength, courage and peace. Amen.
And, Rob, I am not trying to minimize where you are. I juggle the needs of my three children every day. Some day, I feel like a failure. Today, we have managed to occupy a good space. I am literally trying to drink it in with long, deep breaths. I will appreciate this moment of peace, because it will give me a life vest to wear when the storms hit again. I pray you will get there again.
Remember that everything changes from day to day. Sometimes for the better. A week ago, we were in the pit of despair. Today, there is laughter.
Thanks everyone. 🙂
who’s to say how long any of us have? You do what you can with what you have for those who need it. There will be failures, but there are also triumphs. And it’s the hard times we weather that make the good times that much more valuable.
never give up
I’m so sorry Rob… ((Hugs)) to you and your family.
I just want you to know that you and your family are being thought of. Hang in there.
My heart breaks for you all! I will boost the signal and share this post…