Zach had ST at 9:00am today and it was a rough session. He was having a hard time regulating himself today and was either below where he had to be or well above - which made the talking so very hard for him.
I have to admit, I got that sinking feeling in the pit of my stomach and my eyes teared up at one point.
Zach was playing with peek-a-blocks and one of them had a box with a puppy/dog inside. Kristin was trying to get him to say either word without telling him herself. Both are words he knows but can't say properly. He knows what a puppy/dog is....he has for a while.....he's said them before in his own unique way. Zach COULD NOT say what it was....this shouldn't be a surprise after all he is dyspraxic, but for some reason watching the struggle today was awful. He did this with a couple other objects he knows as well....maybe that is what made it all the harder to see.
But on the other hand...I was given a smile and a laugh with his silly little antics - Kristen wanted him to say cow (this normally comes out dow) but he is working on his "ca" sound with finger prompts so today it came out "ca-moo" He smiled at me and was so proud of himself getting out the "ca" is not an easy feet for him.
Tuesday, March 24, 2009
Monday, March 9, 2009
EEG Update
I should have been on here sooner as we received news about the seizures on Friday. Thing have been crazy ever since.
The EEG showed spikes.
I am taking Zachary to the neurologist Tuesday morning first thing. I'm a little upset with this because we will not be seeing the doctor but his ARNP (his first available appointment was not until June/July) -- the last time we saw her she walked in didn't shut the door yet, didn't even look at Zach yet and said "you aren't going to find answers here" Right there was a huge sign to me me about her. I just don't see why you take a kid like Zach who with his developmental delays...right there is a sign he has neurological issues and you totally dismiss him without a second glance! I don't think I had ever been so hurt at an appointment before that or after.
Saturday Zachary had another seizure this time it was followed by vomiting. This episode now makes the 4th one in two weeks.
The EEG showed spikes.
I am taking Zachary to the neurologist Tuesday morning first thing. I'm a little upset with this because we will not be seeing the doctor but his ARNP (his first available appointment was not until June/July) -- the last time we saw her she walked in didn't shut the door yet, didn't even look at Zach yet and said "you aren't going to find answers here" Right there was a huge sign to me me about her. I just don't see why you take a kid like Zach who with his developmental delays...right there is a sign he has neurological issues and you totally dismiss him without a second glance! I don't think I had ever been so hurt at an appointment before that or after.
Saturday Zachary had another seizure this time it was followed by vomiting. This episode now makes the 4th one in two weeks.
Friday, March 6, 2009
EEG
This was Zachary's second EEG that has been ran. That last was about a year ago.
Yesterday started off smoothly with Zach being very cooperative in getting all the electrodes hooked to his head. It looked as if it was going to continue that way when the lights were turned down he quickly started resting and feel asleep - about 10 minutes into his sleep something happened and he started crying from there out it Zach was in and out of it for the test. Then came the strobe light right above his little face - I've never seen him hold his eyes closed so tight, this part of the test was about five mutes long. Then he was done, he sat up like a champ waiting for the electrodes to come off his head and his hair to get cleaned. As we were walking out of the hospital he looked like a mad man - like his finger was put in the electrical outlet while visiting the hospital.
Now we wait...............
Yesterday started off smoothly with Zach being very cooperative in getting all the electrodes hooked to his head. It looked as if it was going to continue that way when the lights were turned down he quickly started resting and feel asleep - about 10 minutes into his sleep something happened and he started crying from there out it Zach was in and out of it for the test. Then came the strobe light right above his little face - I've never seen him hold his eyes closed so tight, this part of the test was about five mutes long. Then he was done, he sat up like a champ waiting for the electrodes to come off his head and his hair to get cleaned. As we were walking out of the hospital he looked like a mad man - like his finger was put in the electrical outlet while visiting the hospital.
Now we wait...............
Thursday, March 5, 2009
3 Appointments 3 Updates
Cardio -- his heart is fine ---- what a HUGE relief!!!!! The cardio does believe that Zach had a sever seizure stopping him from breathing, I guess we will know more from the EEG tomorrow.
GI -- we are going to try to put baby food in his g-tube. If he still gets sick from it then we may be looking at something called EE (eosinophilic esophagitis) basically it is a sever food allergy where you are allergic to all proteins in food - he would be on Elecare (amino acid based formula the rest of his life - this is the same formula he has been on with his g-tube) Funny thing to me is that he has been the healthiest he has ever been since he started the Elecare.
If he doesn't get sick from the food in the tube then they think it might mean there is a hypersensitivity to his system - orally he may be getting overstimulated when he eats causing the rest of his body to be reacting to the over-stim. --- JOY no real answers, yet, we try for a week and see. After that it is more tests and biopsies.
Geneticists ---- well no real news there either ------ she says there is 100% something wrong with him but from a genetic stand point there is no 1 syndrome he falls under so we still have no name for it. He has multiple markers for a genetic problem. She said part of the problem with genetic testing is that you can take a child who obviously looks as something is wrong and you'll find something -- if you take a child who looks normal (albeit small, has many markers), has a ton of issues, you won't find anything - happens all the time. She thinks maybe a second opinion would be good as maybe they will see something she missed. For now we wait 1 year for a follow up with her and hope testing becomes more advanced.
We are seeing another geneticist next week, it will be interesting to hear his take on all of this. I hope he has some answers, Doug is thinking it will be more of the same "we know something is wrong but we can't tell you what it is because there is no one name"
GI -- we are going to try to put baby food in his g-tube. If he still gets sick from it then we may be looking at something called EE (eosinophilic esophagitis) basically it is a sever food allergy where you are allergic to all proteins in food - he would be on Elecare (amino acid based formula the rest of his life - this is the same formula he has been on with his g-tube) Funny thing to me is that he has been the healthiest he has ever been since he started the Elecare.
If he doesn't get sick from the food in the tube then they think it might mean there is a hypersensitivity to his system - orally he may be getting overstimulated when he eats causing the rest of his body to be reacting to the over-stim. --- JOY no real answers, yet, we try for a week and see. After that it is more tests and biopsies.
Geneticists ---- well no real news there either ------ she says there is 100% something wrong with him but from a genetic stand point there is no 1 syndrome he falls under so we still have no name for it. He has multiple markers for a genetic problem. She said part of the problem with genetic testing is that you can take a child who obviously looks as something is wrong and you'll find something -- if you take a child who looks normal (albeit small, has many markers), has a ton of issues, you won't find anything - happens all the time. She thinks maybe a second opinion would be good as maybe they will see something she missed. For now we wait 1 year for a follow up with her and hope testing becomes more advanced.
We are seeing another geneticist next week, it will be interesting to hear his take on all of this. I hope he has some answers, Doug is thinking it will be more of the same "we know something is wrong but we can't tell you what it is because there is no one name"
Tuesday, March 3, 2009
DP Appointment
Zach's appointment with his DP went rather well yesterday!
I'm happy to report there has been no major changes in any of his developmental skills. He had some improvements and some skills he is starting to go down hill in. BUT nothing stood out to Doug and I as a surprise. I will be able to write more on the appointment when we get the written report.
At the end of the appointment he asked if we had any questions and we asked if we could have the information to reach the geneticists who was there last time and popped in the room to look at Zach. The best news is that we can see him and we don't have to travel to do so (he is from a city about 2 hours from here) He comes to the DP's office once a month. ---- We go next week because of a cancellation he had (normally it takes a couple moths to get in to see him) YIPPEE!! I'm so happy this is the Dr who took one look at Zachary and said he believes he may have Russell Silver Syndrome http://www.magicfoundation.org/www/docs/112.111/russell_silver_syndrome
Now, I'm just trying to keep as optimistic as I can. We take Zach to see the cardiologist tomorrow if he finds a heart defect it would totally rule out RSS and going to see the new Dr will be a waste of time.
Neither issue is an issue you would want any kid to have but if you had your choice you'd go with RSS. For us I think it is just been too long with no answers as to Zach's problems - we just want answers.
I'm happy to report there has been no major changes in any of his developmental skills. He had some improvements and some skills he is starting to go down hill in. BUT nothing stood out to Doug and I as a surprise. I will be able to write more on the appointment when we get the written report.
At the end of the appointment he asked if we had any questions and we asked if we could have the information to reach the geneticists who was there last time and popped in the room to look at Zach. The best news is that we can see him and we don't have to travel to do so (he is from a city about 2 hours from here) He comes to the DP's office once a month. ---- We go next week because of a cancellation he had (normally it takes a couple moths to get in to see him) YIPPEE!! I'm so happy this is the Dr who took one look at Zachary and said he believes he may have Russell Silver Syndrome http://www.magicfoundation.org/www/docs/112.111/russell_silver_syndrome
Now, I'm just trying to keep as optimistic as I can. We take Zach to see the cardiologist tomorrow if he finds a heart defect it would totally rule out RSS and going to see the new Dr will be a waste of time.
Neither issue is an issue you would want any kid to have but if you had your choice you'd go with RSS. For us I think it is just been too long with no answers as to Zach's problems - we just want answers.
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