Second opinion?

zxifnswdjdfn

Hi everyone, I intro'ed about a month to a month and a half ago. This is not a full explanation of everything that is going on with my son but it is things that are relevant to the question I have. I'm Mobile bumping so I'm sorry if anything comes out strange.

Basic background: Noah sees neurology, genetics, G.I. and will see Audiology next week. We are working through the intake for EI and while most things are developing typically or only slightly delayed, he shows significant delays in adaptive (3 month) and receptive (less than one month).

Back in May, Noah started having what looked like seizures while he was nursing. We had an EEG and MRI scheduled, but before we got to the date he ended up in the emergency room after three back to back episodes. We were there for four days, 48 hours on the EEG and a sedated MRI on the morning of the fourth day. The MRI came back normal. The EEG did not show any seizure activity, but he did not have an episode while hooked up. There was some spiking but the pediatric neurologist said it was not significant. She said she does not feel that these episodes are seizures, especially because he was, at that point, only having them while nursing. She said she thought it was GERD, wrote a rx for Zantac and sent us home.

We were already due to see GI to address some earlier concerns with slow weight gain and the fact that he was higher risk for celiac disease since his father had it. Since he was nursing I had been looking into the possibility that the breastmilk could cause a reaction. So we went and saw the GI with those issues and the possibility of GERD like the neuro had suggested. By this point, the Zantac wasn't helping and the shaking was happening while he was playing on the floor and in his sleep too.

The GI went through our family history, brushed off several things I tried to explain to her, said that no, the seizure like shaking could not be related to GERD , because she ha never seen that in her years of experience. But even though that was te only reason GERD even came up (he doesn't spit up or anything anymore) she randomly jumps to this conclusion without any testing or anything that he has GERD secondary to a milk protein allergy, because his sister couldn't tolerate milk as a baby. She wants me to not start solids for another month, and either eliminate dairy from my diet or to switch to formula. And also says that breastmilk can't cause a celiac reaction and they'll test him when he starts eating oatmeal or Cheerios if he does badly with that.

I don't know whether the neurologist maybe missed something (especially since he didn't have a single episode while hooked up) or if the GI is just jumping to random conclusions but I am way frustrate right now.

We follow up with neurology thursday (the shaking wasn't the only reason we were there, he has muscle tone and reflex abnormalities and issues with his thumbs and heels). I don't know whether I should push for another explanation for the shaking.

I also don't know whether I should look for a new GI. Any recommendations in Maryland?

hopecounts

I always recommend a 2nd opinion for anything serious/important.

Doctors are human and it never hurts to have a 2nd set of eyes look at a situation in case something was missed or the doctor was having a less then stellar day and missed something.

Worst case scenario you are out a copay and get the same answer.

zxifnswdjdfn

Children's won't take our insurance. UMMC is where his geneticist and this GI I am not really sure I have faith in are at. His neurologist is at Georgetown. I don't know anything about Mt Washington and what insurances they take. KKI was going to take us but they didn't have a neuro appointment available until late August and the ER wanted us to get seen sooner after these episodes started to pick up. I will look into it again.

Really want to see if I can find a different GI that doesn't seem like they are blowing me off and assuming things. I mean, for the neuro to suggest GERD from shaking that she didn't even see was a little bit of a jump for me, but for the GI to say that no that's not possible but he does have GERD (without testing for it) because of a milk allergy she thinks he may have( where the heck did she come up with that?!) is asking a lot for me to have faith in that.

ToastieSimons

If he was only shaking during nursing sessions it very well could have been GERD.  Sandifer's sydrome can easily be confused for seizures.  And zantac NEVER worked for us, only Prevacid.  And they don't need to spit up to have GERD.

Now that you have seen these episodes at other times, have you tried video'ing?  I wouldn't hesitate to video it and e-mail it to the neuro.  Show it to your pedi too.

And in the meantime, get a 2nd opinion.  We had an awful neuro at first, she was so laid back and wanted to take the slow and steady route for testing.  So we headed to a bigger hospital.  They were much more proactive.  And i loved that we saw a resident and then who ever the charge doctor was on that day.  so it was like getting 2nd and 3rd opinions every time.  Which may be a pain when you want to be followed, but for us we had no idea what was going on so it was great getting other ideas.

Also if possible, start recording the episodes if you can, duration, time, and what he was doing at the time  I know, easier said than done while taking care of a baby.

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