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Discussion Starter · #1 ·
Hi everyone,<br><br>
I had posted a week or so ago about our older son, who recently began having seizures. He has had two seizures since May 3rd - a partial complex that progressed to generalized and then about six days later a partial complex that did not progress further. Since his first seizure he has been much more tired overall, taking 2-3 hour naps and sleeping 11-12 hours per night. His activity level has been much reduced and he is cranky and short-tempered a lot of the time, hitting, slapping, and wanting to be carried everywhere. He is non-verbal so it is very frustrating trying to figure things out for him. On a good note, the past few days have seemed to bring some improvement - he has had more periods of seeming like himself, playing and smiling and running around the house more, but still very unwilling to walk when we are outside of the house. On Sunday we had a busy day with family, had been up late the night before staying at a hotel, and he was very tired that day - slept through the church service (very unlike him), sat by the wall at the church nursery after the service instead of playing, and then took a nearly four hour nap at his grandparents house, being waked up only by our younger son who had not napped and was having a meltdown near the room DS1 was sleeping in. That is a big change for him - even with late nights in the past he typically is a "go till he drops" kind of kid so I was a bit worried about him that day. Today he has been fairly active and happy so that does help my worrying tendencies.<br><br>
Anyway, the neuro ordered blood tests for chromosome abnormalities and fragile X syndrome along with an MRI of the brain, which he will have on the 31st of this month. Can anyone who has been through these tests share their experience with me? The MRI has me the most nervous - DS1 will be sedated so at least that should make it easier on him - but I am still nervous as to what it might show. The neuro mentioned concern for increased pressure in his brain, raising the risk of stroke, which if that is the case would mean he would need neurosurgery, but I am hoping that since he has been acting better off and on over the past few days that we will get good news in that respect. I just don't know if that is something that would kind of come and go, or if it would have more constant symptoms. I'm also hoping if that was an acute concern that the MRI would have been scheduled more quickly instead of over two weeks out. If it does not show increased pressure then we would just treat the seizures as planned with medication if he has more of them.<br><br>
The other testing will not necessarily change any treatment approaches, just will give more information as to his condition and also hopefully shed some light on his slow growth - he is 42 inches and about 36 pounds, which is about the 3rd percentile for his age (6 years old next month). He was 14 weeks premature but the neuro felt his growth should have caught up a little more by now.<br><br>
Anyway, I came out of the appointment feeling glad that the neuro was being fairly thorough in his testing but wishing we didn't have to wait so long to find out all the info, especially with the MRI. (The blood test results they said to expect in about six weeks, but like I said I do find those a little easier to wait for.) I'm also trying very hard not to overanalyze every little thing he does - the poor kid probably thinks I've completely gone over the edge ... and he's not far off!<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/redface.gif" style="border:0px solid;" title="Embarrassment"><br><br>
Thanks for listening and for any input!
 

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We had blood tests for fragile X, chromosome, thyroid function, and EEG to rule out any epi-like activity. We turned down the MRI.<br><br>
EEG wasn't too pleasant, ds had to be sedated and I didn't like it. But thankfully we got all we needed to get in a couple hours and don't have to do it ever again. Poking his vein was painful but quick.<br>
We didn't have any seizure symptoms though.
 

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We have had chromosome tests (karyotype and microarray) done and an MRI.<br><br>
The chromosome tests, we had the results back in 2-3 weeks. They were just basic blood draws.<br><br>
The MRI went smoothly. They warned me that most kids wake up badly from the anesthesia so expect some crying, as the drugs make them feel weird and disorientated. Dd shed about three tears and was fine. Before, they let us stay wtih her and walk down to the room and all that, play with the oxygen mask (which was pink and vanilla scented), etc, etc. The hard part was that they told us forty minutes...we finally were able to see her after two hours! She didn't want to wake up,, not because of the drugs, but b/c the MRI was done later than we were told (we were told to be there for a 9 am appointment, MRI was finally done at almost 11 am), so the time they were waking her up was her normal nap time <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/lol.gif" style="border:0px solid;" title="lol"> But she perked right up once we came in and she drank lots of juice, got a popsicle and was ready to go in twenty minutes.<br><br>
She did stumble a bit and act goofy, which was the after-affects of the medications. But otherwise was fine. Dh was more traumatized by it all than she was <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/lol.gif" style="border:0px solid;" title="lol">
 

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We just had an MRI on the third. It was by far the easiest proceedure that we've done so far. The anesthesia was nothing... a little grumpy, but it's not deep anesthesia like for surgery. He was slow waking up, but by the time we left was his normal cheerful self. We went in at 300 and were out by 5:30. So it was pretty fast considering it involved anesthesia. But I'd much rather have the MRI redone than anything else we've had done so far. Oh and they didn't put the IV in till after he'd been knocked out, so the most traumatic thing was having a mask on which he doesn't mind at all.
 

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The MRI was pretty easy - the not eating part was the hardest for dd who was around 12 months at the time. They just gave her a liquid medicine that made her drousy and she fell asleep in my arms after about 20 minutes. I laid her on the bed and they wheeled her away. Now we had that one done at an imaging center rather than at the hospital. The MRI's she's had done at the hospital were pretty easy too since she was there for other things she already had the i.v. so they just gave her the sleepy meds thru that. OH, and at the imaging center she actually woke up toward the end, but was still sleepy so just laid there while they finished up. She bf'd a short time later and was fine so they sent us home. Way easier than holding her down to have blood drawn or doing a catheter for a urine sample. Also, she had the other tests done too and it was so nerve wracking waiting for the results. Do stay off the computer - it'll just drive you insane if you research all the possibilities (I did it - and it was miserable). Oh, and we did have to consult with a neurosurgeon since they found a venous angioma on dd's cerebellum, but turns out it just needs monitoring, so we sort of dodged the bullet there too. It was scary sitting in the office waiting to see him and knowing what he might say. I guess it's just like all the rest though - just do what you gotta do and somehow you and your child get thru it. I definitely am so glad we are more ap than most - being able to bf her thru stuff has made things more bearable for both of us and being more intune with her has helped us to know how to help her best even though she's not verbal yet (2 years old). Just remember you are his best advocate. If you are unsure about a test ask lots of questions and demand answers and then go with your gut. As difficult as it is to go thru the testing for us it was better than the potential risk we would have been taking to not test and not know what was going on. That said, we still don't have definite answers about our daughter's condition and are scheduled for a muscle biopsy next month (in conjuction with another surgery). Good luck!<br><br>
Marcia
 

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Not knowing what is going on is really scarry and waiting for answers can be so stressfull. Our eldest was born with multiple congenital birth defects. After she turned 5 she started having weekly headaches that led to vomiting and put her in bed for 18-24 hours. She went through the ringer in testing last summer and at almost 5.5 years she also had an MRI. FWIW, our DD was around the same age as your DS1 when she had her MRI. I know not all kids are the same, and handle things differently, but we gave her the option of doing it sedated or not. The staff was wonderful and supportive and let her try it unsedated. We showed her some video of an MRI being done on someone before we went, and the staff at the children's hospital gave her a tour of the machine and put her bear she brought with her into it etc.. She opted for unsedated and did wonderfully (half way through she fell asleep, and she had stopped naps at 18 months old). I stayed in there with her the whole time. Actually, she loved it and has since asked many times if she could do it again. She says it was the best nap she's ever had. Cat scans annoy her because they aren't long enough. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/wink1.gif" style="border:0px solid;" title="wink1"><br><br>
The imaging room was right there, and after the MRI they let her see some images of her brain (way cool) and that helped ease my worries of the results. Depending on the situation, for us we got the immediate response of "There's nothing that stands out initially, but her neuro will need to take a closer look and get back to you".<br><br>
I know worry, and anxiety over fear of what may be. Sometimes I have to ask myself what that worry and anxiety is going to get me, is it going to help. After she was born I got lost in web sites listing genetic defects which went along with both of her birth defects. I went through a downward spiral of guilt and worry that did me no good at all. Now I try really hard to put off my worry until we get the results, but I know, the waiting is so hard.<br><br>
Hugs mama....
 

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Discussion Starter · #7 ·
Thanks so much everyone for the responses! I am trying to wait patiently and not spend too much time researching on the internet - I know it can cause more stress than it's worth! At least with the two boys they keep me pretty busy so it makes the time go a little faster ... I do hope they show me some images of the MRI when we are there and have some kind of info, even though we will have to wait for the detailed report.<br><br>
Thanks again for the support and for sharing your experiences!
 
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