Hi!
My fiance and I have a two year boy recently diagnosed with Chiari I. We have been together 8 years. I have two sons from a previous relationship. The hubs has completely taken over the father role and reaponsibility for the older two. Our oldest son has Asperger’s (high func Autism) and Epilepsy (although last EEG was CLEAN!!) Our baby, Ryder, was born at 31 weeks due to me having severe headaches. Long story short and a year later, a brain tumor was discovered and I had surgery to have the beast removed. I continue to have MRI’s to be on the safe side and I have residual headaches from scar tissue. Anyway, we were told that Ryder’s ‘adjusted’ age would be different than his ‘actual’ age, so we expected him not to hit ‘normal’ milestones. Ryder was sick the first year (SEVERE reflux-his swallow study showed slow motility). Let me also say that during this time, SO wasn’t around as he works out of town for long periods. So, it was I that took him to pulmonologists for sleep apnea and Gastro for reflux and choking. Not to mention all the regular Dr. appts. Needless to say, Ry was not put into daycare and either myself or my Mom would have him.
The Dr. said a lot of Ryder’s developmental delays would start to even themselves out at around two. He turned two in November. He is extremely smart, but still only babbles and is not where he should be. I decided to take him to Dr. to rule things out, ie:Autism (she said there were red flags). She sent us to my oldest son’s Neurologist and he ordered blood work, an EEG and an MRI (the MRI was more of a safety measure because Ryder would bang his head from time to time). The one hour EEG came back within normal limits (whew!), the blood work showed he is iron deficient, low Vit D and low sodium. We thought NOTHING of the MRI. I was putting groceries in my car on Jan 4th when his Neuro called and told me his diagnosis and to follow up with the NS ASAP. We had that appt last week, which my SO took time off to go. I didn’t really care for this NS and answered none of our questions. The ONLY thing my husband seemed to hear was ‘He will need to be monitored once a year’. We leave and I tell the hubs I am getting second opinion. This also happened to be the SAME NS that looked at Ryder when he was an infant and said that him not having a ‘soft spot’ was no big deal because sometimes they close early. Anyway, I researched and talked to friends in the medical field and found Dr. Trumble. The appointment was yesterday and I walked out feeling amazing, knowing he was in great hands. My Mom tagged along to listen and gain knowledge. The NS last week told us that Ryder’s herniation (?) was 6mm, I saw the radiology report, myself, yesterday and it is 8.8, but Dr. Trumble explained it could be off a mm and probably more towards 10. He ordered a sleep study and an MRI of his cervical, thoracic and lumbar to check for syrinx and tethered cord.
All of this brings me down to my dilemma. My husband ‘surprised’ us and came home last night. I discuss everything with him and how the appointment went. His brain is still stuck on ‘monitor once a year’, even though last week’s NS ALSO wanted the full back MRI done to see what our next step would be. He doesn’t even want our son to have the MRI done because he says he is worried about him being exposed to ‘radiation, etc’. He says because Rydrr appears healthy and playful, there is ABSOLUTELY NOTHING WRONG WITH HIM. PERIOD. He says that I am worrying too much and he needs to go to day care or socialize with other kids and THAT will help him talk. I do agree with him needing more socialization, however, the more I read about Chiari and speaking with the NS, this can absolutely have an impact on his speech and developmental delay. The SO is in complete denial. I asked him if he’s even read about Chiari and his answer is ‘No’. I come bak with how he does more research on the things that interest him more; new stuff and accessories for his truck, new guns, etc, than he does for Ryder.
I can see this whole thing driving a wedge between us. I AM going forward with the MRI, to make sure we aren’t dealing with anything more dangerous. I did not tell him Ryder was a surgery candidate, because we don’t even know yet.
Anybody else’s significant other/husband/wife go through denial? If so, any advice?
Thank you and sorry for the LONG post! xxoo.