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mom2cris
March 3rd, 2004, 08:16 PM
Hi everyone. I took Cristian to get his MRI and CT yesterday. I was so hard because Cristian is now afraid of the hospitals. It took about 30 minutes to fall asleep after he took his meds to sleep. He cried and cried. He fell asleep. Those took about 2 hrs. I was so tired since me and cris had been up since 4 a.m.!! He had to sleep deprived so that he'd fall asleep faster. It worked. We got to the hospital around 11 a.m. to preregister and he still did not want to walk so I carried him in and all those stupid nurses just staring and people staring, but no-one got him a wheel chair!! I asked for one and they took an hour just to call him to preregister. His appt. was at 11:30! We got in a little after 12. He got so cranky because he could'nt eat or drink anything after 6 a.m. Finally, he was in and fell asleep and test were done with no trouble at all. He should of woke up about 30 minutes afterwards and he took about 1 to 2 hrs. He didn't want to wake up. He did (((Thank God!!!))) I was already getting worried. We brought him home and he just slept all night and today he woke up and just sat in bed awake. He didn't even try to move. Everyday, he is getting worse. For those of you with your children who aren't walking, did this same thing happen, did it grandually get worse? or is it that he is giving up? We put him his trampolene and he just layed there with no energy!!! He is getting worse. The results should be back by tomorrow. I'm so afraid of those results. I can't sleep just thinking about it. I was hoping it was just a phase he was going through, but I don't believe it anymore. When he is awake all he does is cry and I don't know what to do. I don't know what he is trying to tell me. :frown: I don't like waiting, and yet I am so afraid of the results. The nurse did say that there did appear to be severe deteriation of the brain, but she's not a dr. And she should of never of said anything to me, but she did and she was only trying to comfort me. That didn't help, thank you!!! All I have to do is wait and pray for the best and hope it's not as bad as it looks.+



Nilda and Cristian

Jessica
March 3rd, 2004, 08:42 PM
Nilda,
I'm so sorry that you are going through this. I don't know much of what to say except, I've been in your shoes and I feel your pain. I know that doesn't help much. :(

When Kaity had her shunt put in she also became lifeless. She bounced back and I'm sure Cristian will too! These kids are fighters indeed!

Please keep us posted and I will keep your family in my prayers.

Rebecca
March 3rd, 2004, 09:09 PM
:group
We will all be thinking and praying for you and your family!!

All of your :angel: are special people and I hate it when they are :sick:

Please keep us informed!

The Rea Family
March 3rd, 2004, 09:19 PM
Nilda,
:cry: I'm so sorry for what you are going through.
I will be hoping and praying for the best.
Please keep us posted.

Barbara Pryor
March 3rd, 2004, 10:12 PM
Nilda,
I am sorry for what you are going through. We all dread the results of tests now that our children are getting older. I will be thinking about you tomorrow and your test results.

Laura Brodie
March 4th, 2004, 02:01 PM
Nilda,
I am thinking of you and hope things are resolved for you very soon and Chris of course.Love Laura

Sheila George
March 4th, 2004, 02:59 PM
Nilda,

You are in my thoughts while you wait for the results and we will be for you when you get them.

mom2cris
March 5th, 2004, 12:56 AM
Hi everyone! Today, was so busy. I had to schedule therapy at school for Cristian, then at a rehab place. I came home hoping the doctor would of called. No message. I called him. The results are in, but of course the doctor was out of town and won't be back until Tuesday!! I got so angry. So I called about his wheelchair and they said the paper work was being done and everything was o.k. I told them I needed something for now because he is not walking at all. I need something to use now!! not in a month!! So they are getting me something tomorrow.
Around the same hour Cristian starts crying non-stop and he screams like he is in so much pain. Yesterday he screamed for 2 hours. Today, same thing, around the same time. He looks like he is in such scruciating pain. I panicked and called my sister-in-law and she could hear him screaming so loud that she came to help me. As soon as he saw her he calmed down and then he was o.k. after while. I think he has these bad headaches, but if this happens again I am going to the E.R.! I am not going to go through this again. I'll take him to the same hospital where they did the MRI and CT. They'll have to check the results. Until tomorrow, we'll see.
Thanks everyone for all your support, I feel so lost not being able to help my child.

Thanks, Nilda and Cristian

momtoty
March 5th, 2004, 01:14 AM
Nilda,
Thinking of you and Christian and praying for you both. You should have the results by tomorrow at the latest. Call in the morning and insist, be a pain in their @$$ until they give you some info. Generally the MRI and CTscans are read the day they are taken, and the report is sent or faxed to the ordering doctors office the next day- this is routine, not even a "stat" request. If it were requested Stat, your doctor could have the results within a couple hours of the actual test.
If it is hydrocephalus, and obviously I have no idea what it is, it just sounds like it "could be" hydrocephalus; a shunt could work wonders for Christian. There is a pediatric neurosurgeon in New York, his name is Dr Goodrich, and he is extremely experienced in MPS related Neurosurgical issues. When we were dealing with the issue of hydrocephalus and raised Intracrainial pressure in Ty, we emailed Dr Goodrich for advice. He was so kind. He read Ty's history, reports, and Lumbar puncture results- and he gave us advice on what course of action to take. He even reccommended a neurosurgeon in Texas, for us to use. (Dr Swift, I think I told you about him in a previous post) Dr Swift shunted the three Holland children(all have MPS 1) and several other MPS children and he is wonderful. Here is Dr Goodrich's email address:
Dr. James Goodrich goodrich@aecom.yu.edu
Do not hesitate to email this doctor, he is not only willing to help, he is kind and thoughtful with his advice, and will steer you in the right direction (even if it is not hydrocephalus- any neurological issue would be within his field of expertise) When we first emailed Dr Goodrich, he got back to us within 24 hours, our subsiquent emails were returned even quicker. I believe this is a doctor who went into medicine for all the right reasons.
I am thinking about you, and I can understand your pain and frustration during this wait, please do not let the doctors make you wait through the weekend, they should already know the results of the scans. Start calling early in the morning, and tell them you insist on speaking to the doctor about the results before the end of the day. I'm sorry I am being so pushy, this is an issue I have recently dealt with and I am a bit passionate about it. I can tell you that Ty's initial scan was done on a Wednesday, no one ever called me back, I finnaly reached the nurse by Friday afternoon and she said the doctors were all gone for the day :whatthe?: - it was a long weekend! and no one would be in until tuesday morning! I wound up having to take Ty to the ER that weekend due to his symptoms- he had an MRI at the ER and we got the results an hour later!. He had Hydrocephalus, and the report in his doctors office, sitting on the desk, waiting for Tuesday, said just that. :ohno Sometimes doctors can be so clueless. :?
Hang in there, we are all here for you. And as I said, I am praying for both you and Cris.
Hugs to both of you,
Kim

mom2cris
March 6th, 2004, 12:09 AM
Kim, where in Texas is this Dr.? I am thinking of taking him to another Dr. The dr. here is a good dr., but this waiting is unbelievable!! Today, I went to pick up Cristian a loner chair. It works for now. I did feel somewhat upset to see him in it, but I didn't want him to see me cry. :cry: so I just held it in. I brought him home and we pushed him everywhere outside and he was so happy. He didn't want to come in for nothing. He even forgot to cry. I kept him busy all day. We are finally home and he was so tired he fell asleep. Monday, we have an appointment for the measurements for his new chair and we are reqesting a walker, because today he actually walked a little, but he needs support. I think a walker would be alot better than the wheelchair, but we are going to get both of them.
He didn't have any crying spells today, but next time to the ER we go. I know the results came back right away, but as soon as the test were done they were sent to one radiologist and when he finishes he results, they send them to another one there at the hospital and he sees what the other doesn't see and then they give them to the dr.. So here we are waiting. You are right to say to be persistant. I just got so fustrated yesterday. Today was alot better because we got this wheel chair for now. Tomorrow, to the fair we go!!! :P I just want to keep him distracted and me for that matter.

Nilda and Cristian

Laura Brodie
March 6th, 2004, 04:42 AM
Nilda, I just wanted to say 'sorry' for the horrible time you and Cris are having! Try to have a great time at the fair :) Thinking of you -let us know what happens! Love Laura

Sharon Cochenour
March 6th, 2004, 11:34 AM
Nilda
Sorry to hear you are having a hard time getting your results. It is good to hear you got a loaner chair to use, and Cristian is enjoying it. Hope you guys have a good time at the fair. :)
Sharon

March 6th, 2004, 03:58 PM
Nilda,
Just wanted to let you know that we, to, are thinking of you and cris. I hope things work out well. Let us know when you get the results.
Misty

mom2cris
March 9th, 2004, 03:58 PM
Cristians results came back negative. He now has an appt with a neurologist on the 19th. He still is not walking so here we go again with the waiting!!! :ohno All this waiting fustrates me. We see totally depressed sometimes then he's laughing. Dr. suspects stones, but that has nothing to do with him not be able to walk. Oh well, we'll just see. Thanks for your alls support.

Nilda and Cristian :angel:

Jessica
March 9th, 2004, 04:30 PM
Nilda,
I know the waiting is awful, but I'm so glad to hear Cristian's MRI results were negative!! Just hang in there! We will be here for you!

The Rea Family
March 9th, 2004, 05:09 PM
Same here.
Keep us posted.

Sheila George
March 9th, 2004, 05:23 PM
I am glad to hear that the MRI results were okay. I am going to give you some suggestions of things to check that Dr. Muenzer suggested we check out when Shelby was having trouble walking.

First he suggested a hip x-ray. It is not common in Sanfilippo to have hip dysplasia, but it is a possiblity. He also suggested that we have her ears checked for fluid and that the eardrum was moving correctly. He also suggested that we give her Motrin on a daily basis. We were already giving it to her twice a day, but he suggested we increase it. I would suggest you talk with your doctor about the correct dose for Cristian's age and weight.

Finally, before I called Dr. Muenzer we took her to a Physical Medicine doctor and basically it is felt that her heel cords are extremely tight and that she had some spasticty. Dr. Muenzer felt that the procedure the Physical Medicine doctor was recommending was reasonable, but he suggested that we check out the things mentioned above also.

We are currently going through botox injections and serial casting. I will be posting all about it after the final casting with the results of how it has or has not helped.

Laura Brodie
March 10th, 2004, 03:41 AM
Hi Nilda, I think I said before when this happened to Will it was a severe ear infection that wasn't responding to his usual antibiotic-so I would definately check that out like sheila says Love Laura

Sharon Cochenour
March 11th, 2004, 12:35 AM
Nilda,
Glad to hear Cristian's results were negative. I know the waiting can be unbearable at times, but try to hang in there. My son Andrew goes for a head CT scan tomarrow. He has a nasty sinus infection that we can't get to clear up after several doses of antibodics. :sick: Trust me I will start hounding the doctor on Friday for results, and she knows it. She is very good about checking on Andrew's results.
Sharon

rickys1mom
March 12th, 2004, 02:11 AM
Dear Nilda,
So glad to hear Cristian's results were negative. I'm sorry to hear you have been having so much trouble with mobility at this stage of things. I hope they can get to the root of the problem soon and that it is temporary. Like Sheila suggested, its a good idea to rule out any hip problems or ear problems as both can be culprits. It's good you were able to get a loaner wheelchair to use. Its hard to accept the need for one but they do make life easier. We had to get a small one to use in the house in addition to his regular one for when Ricky is alone with me as I can no longer move him by myself. Hang in there and keep us posted. We will be thinking good thoughts for you.
Anita

March 16th, 2004, 08:27 PM
Hi Nilda and Cristian, I am hoping you have gotten some answers. I just wanted to jump in here and atest to Dr. Goodrich and his ability to give advice on MPS kids and hydrocephelous. He operated on my son 8 times and saved my sons life. E-mail him when you can. There were no signs of high pressure on my sons CT scans or MRI's or lumbar puncture. Chase had all the clinical signs but nothing showed up on any test. When Dr. Goodrich agreed to take him into the operating room and open him up to check the pressure, and shunt him if neccessarry, he was floored. The pressure was over 500 he said. It would have killed my son. We had major complications due to the deposits in his brain and hemmorages. It was determined that MPS kids should be shunted earlier than later. Chase was 10 yrs old at the time.I am not saying that is little Cristians problem, I hope it is not, I am just agreeing here that it would be a good idea to call him or e-mail him. He is at The Childrens Hospital at Montifiore in the Bronx and his number is 1 -718 920- 4197.Keep us all posted.God Bless you.
Rosemarie