So here is the run down. The neurologist says Selective Mutism. The occupational therapist says fine motor skills delay and sensory processing disorder. The psychologist says anxiety, but he is too young for the diagnosis. We still are going to see another neurologist next month and the developmental pedi in October. WTH. This is driving my bonkers. I dont know what to think anymore. Dh and I are fighting over the bills to come because he is starting to think this is all a waste and nothing is wrong at all. I have no idea what to do anymore.
11/2012, 12/2012, 2/2013
There aren't any free eval things like early intervention where you are? I have family in Largo - I just noticed where you are. I'm not sure what sort of resources are available in Florida though.
(((hugs))) Trust your gut. If you're confident something is wrong then ignore the doctor who disagrees.
Natalie & Dan - June 2, 2001
Samma - Nov. 5, 2004
Tommy - Oct. 19, 2007
I'm sorry that communication about finances enters the picture, but money is just one of those topics that must be faced. I encourage you to keep the communication lines open on ALL topics though. Denial that something is wrong is also something that needs talking about. So many times early diagnosis can help a child so much!
I don't know why, but often we feel a need to have a problem labeled, to have a NAME for it, when in fact our guts tell us something is wrong. Perhaps a name for a problem validates our feelings or gives us hope for a quick easy solution. Many times a combination of problems occurs.
I think this forum often shows us proof that for every specialist there is a different diagnosis. I hope your journey is a short one, but try your hardest to research things brought up and ask the specialists for answers when confusion or problems arise. Question everything and don't be afraid to ask ask ask. I hope your husband will encourage you along the way. It doesn't hurt to tell him that you need his support as you both try to help your child. And of course he needs your support too and may even be feeling quite helpless.
Leo (3 1/2) with Malcolm the cat
First of all I 100% disagree with the psych so I would personally ignore his opinion and there are LOT of other drs out there that would disagree with him too. I KNOW it's frustrating. I know for us we had to have a diagnosis to get the proper help. Our insurance wouldn't pay for anything until we did. And we wouldn't be getting some of the help we are now getting without our diagnosis. I know others that have just had been treated as if they had autism and were greatly helped to the point a clinical diagnosis wasn't really needed anymore. However those same people were not delayed in speech. Has the neuro said what he/she is basing the selective mutism diagnosis on? I'll start with those questions and give you
He bases the diagnosis on the dfact that Josh warmed up enough to him to him to take his hand and give one word answers ro his questiona on what was on the eye chart. Thats it.
I am having a hard time on something. We have a follow up appointment with Dr. Gunderman in August. Three people have said he is the vest. I never went over my list with him I had on all the stuff Josh was doing since I was quite nervous and tht bing the first of all him appointments had no idea what I was doing. We also have an appointment with Dr. Jacinto another neurologist the pedi had made cause she thought we would get in sooner.
Question is do I see yet another doctour and probably abother opinion, cancel the appointment and see dr Gunderman in July, or see Gunderman sooner if able tto and disscuss the list and what the other professionals have said. I am so confused I could cry.
11/2012, 12/2012, 2/2013
If it were me, I'd keep it. In explaining why I want to explain part of Eli's story. Although Eli's issues are different, I want to show you in hopes of encouraging you to continue.
Eli had surgery in 2009. He has NEVER been the same since that day. We were able to ignore, push off most things, however you want to say it until after he again had surgery in 2010. We finally pursued physical therapy, occupational therapy, and speech. He also went into the school system in the DD pre-k classes. It was also advised we see a neurologist. That happened at the end of July. He told me my son had appraxia and to go home and google it (really he did). He noted Eli's left sided weakness, but basically ignored us saying he didn't believe in tests other than his opinion (not kidding). My pedi decided to order an MRI of his brain since neuro was to me not very brilliant. It was clear (this become important later). By Christmas we notice VERY subtle changes in Eli's ability to play. Since he has a heart problem we assumed it was that. But he also started coming to us with headaches, dizziness, and arm pain. We later noticed his neck turning blue. Not like arteries and veins visable blue, but his ENTIRE neck was blue. We brought our concerns up to his cardio (who also noted his blue neck) which ran some tests. What it showed is that the blood is flowing the wrong way from Eli's brain to his left arm. Now if someone is symptomatic it's called Subclavian Steal Syndrome (SSS). If they don't have symptoms it's called nothing. The pedi and I after this have always said he has SSS because the headaches, dizzyness and arm pain. But then Eli began having VERY scary episodes. I didn't know this at that time, but I now realize these were stroke symptoms (confirmed by the new neuro). And then he began passing out. They were VERY quick episodes often with him waking back up before he hits the ground. These can be VERY dangerous since they can and did happen while he was on the playground equipment and fell several (4-5 feet) to the ground almost literally on his head. Again we brought these things up to the drs to basically fall on deaf ears. Then we "thought" we were getting somewhere and we were sent to another neuro (this being not so brilliant dr #1's boss so neuro #2). He basically spent the entire appt defending #1's diagnosis of appraxia and again ran only one test, which was an EEG. We've never thought these were because of seizures so of course that test was negative. He then told us over the phone to have the pedi run a sleep study because what his problem was a sleep issue. He was so confident this is what it was that he said he didn't feel we needed to be seen again because it was clearly a sleep problem (again basing this off opinion not medical evidence since the study had not even happened yet). So we continued to see issues, stress, worry, etc. etc. etc. For months! I finally got sick of it all and a dear, wonderful, awesome, amazing friend made a phone call on my behalf to a different clinic at a different hospital. We changed cardiologists which was very scary for me personally (my DH was happy over the moon). After listening for 3 + hours he thought we needed to go to the neurologists office through his network. Yes this is neuro #3. This neuro was amazing. She listened. She didn't jump to conclusions. She gave us a plan to take vitals with ANY issue he had no matter how small or minor it seemed. Make videos of ANY episode he had. She ordered another MRI (remember the other one I mentioned?). What we learned was that in order to see if someone has truely had a stroke you have to use contrast. So she did. And it showed Eli at one time had a stroke. This is why after the 2009 surgery he was never the same. From that test she also decided to do a 5 day video EEG. She had staff come in and play with him and attempt to get him to do the passing out thing. She also redid some of the testing that the previous cardio did where we discovered the bloodflow going the wrong way. Finally on the 4th day of testing Eli had issues. And the tests showed the bloodflow is not going to his brain. It started an hour before he even showed signs on the outside and lasted nearly ALL DAY. She also explained to us things about Eli's risk for strokes, and brain damage that cannot be picked up by MRI. Something NONE of the other drs did for us. Knowing this information allows us to reduce some of his issues by forcing more quiet time when we see the most subtle of signs that 99.9% of people will miss. In fact on Friday (yesterday) at Faith's pre-k class he nearly passed out while playing outside. There were 2 other adults out there and they both missed it.
Now I know this is long, but it took us a VERY long time seeing a total of 3 neuro's before we got answers for Eli. Answers that were VERY important to have. And honestly I went through similar stuff with Dakota who is on the Autism Spectrum. What I learned with Dakota is that I am NOT articulate when it comes to drs and noting symptoms. I focused on the things that bothered me. So I didn't notice he was watching wheels or other things. And again the dr that referred us for the ADOS did NOT think he was on the spectrum. He thought there was nothing wrong. I talked him into it.
I'm not saying your son is on the spectrum, but I really believe it warrants getting them to fully conduct the ADOS and not make judgements before they actually have results. Because this is what kept happening to us with BOTH Eli and Dakota. The drs make opinions and opinions can be wrong. PROPER medical tests are harder to argue with.