Help...so many issues, so many questions...

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Help...so many issues, so many questions...

Postby Becky1219 » Fri Sep 18, 2009 10:27 pm

I don't even know where to begin so this may end up being a jumbled mess. I'm trying to find research on whether the vagus nerve (or others) can be affected by CM and/or SM. I'm trying to figure out whether many of Jack's 'symptoms' are due to CM, SM, or one of his many other anomalies. He is only 2 and doesn't have much of a vocabulary so trying to figure where pain is located or how his legs, stomach, head, etc...feel is impossible. His most recent surgery was tethered cord release back in June. He just completed more urodynamics testing on Wednesday and his bladder may be slightly less spastic, but doesn't hold as much as it did prior to surgery before emptying. He was prescribed Ditropan, which we've already DC'd due to side effects. When we met with his NS after the test, she didn't seem concerned about his bladder. She also didn't seem to think some of the other concerns I had were caused by his CM, SM, or hydro. She does want to do a follow-up MRI in March (about a year since his last). Anyway, back to the research I'm trying to find, Jack gets a majority of his nutrition through his g-tube and he is having a difficult time with his daytime g-tube feedings. He will start to tilt his head and swallow hard to try to keep from vomiting. We try to watch his signs and pause the pump, but sometimes we are too late. Before and after he vomits he will hit his forehead or hold the back of his head. This may happen after just a few mL's or even shortly after the feeding is finished. His NS believes this is all a GI issue, but Jack has been through the ringer on GI tests between his general surgeon and GI doc and nothing abnormal has been found. He also tolerates his night drip without any problems and it is run for about 7 hours. If he naps during a daytime g-tube feeding he also does not have any problems with it. (A little history, Jack's 'esophagus' is made from part of his stomach.) Is it possible to have a 'neurogenic' stomach? Why are things fine while he sleeps? I know symptoms of CM/SM include swallowing/choking/gagging problems, all of which Jack also has whether due to his esophageal reconstruction or CM/SM, but how about the stomach itself. Also, when ears 'pop' like when changing elevation, does CM/SM cause this to be painful? It's also difficult for me to tell whether his tone is better since the TC surgery. He still cannot hold his head up as he crawls or look up at the ceiling without laying back, despite PT, OT, and me working on this. Could this have any connection to CM/SM?

Sorry for so many questions and all my scattered thoughts! I really like his NS and want to do more research before deciding on getting a 2nd opinion. I not only want to research the stuff above, but also NS's. I don't want to subject Jack to PFD unless he really needs it, but I don't want his SM to get worse and possibly cause more problems. I've read that if CM and SM are both present surgery should be done, but I've also read that PFD is best if the child is 5 or older. I'm so confused about what is best for Jack. Please any info would be helpful. Thanks!
Becky, wife to Mike, mom to Logan 4/3/04 and Jack 5/4/07 30 weeker EA/TEF, bowel perforation, CM1, SM, TCS, hydrocephalus, metopic synostosis, thin corpus callosum, decreased myelin, and the many issues that go along with these
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Re: Help...so many issues, so many questions...

Postby Sara » Sat Sep 19, 2009 7:06 am

I'm sorry you are facing so many difficulties with Jack. I know this can't be easy. Having a sick child we rely on our physicians to guide us and it sure makes it hard when they can't get on the same page.

Vagus nerve does cause issues in some patients. Your son obviously has many issues and the problem here is sorting out what is causing what. Do you have a team that evaluates him? Are you at a large children's hospital? Is his hydro adequately treated? Did they make sure the shunt was functioning? Did his Chiari improve after shunting? What state do you live in, maybe we can recommend someone near you.
This article discusses the problems that children under age 3 often experience: http://www.asap.org/articles/102-1.html

Sara
Holly's mom
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Re: Help...so many issues, so many questions...

Postby Becky1219 » Sat Sep 19, 2009 1:44 pm

Hi, Sara
Thanks for your reply and the link!
Jack sees about 10 different specialists and some of them are very good about talking to each other and others are not. None of them have ever met as a group, but I've considered asking whether they would conference together. Jack does go to a large teaching children's hospital in Indianapolis and we've always been pleased with his care, but just feel we are coming to a crossroads where we may need to go outside for opinions.

His hydro is actually untreated, which I know sounds insane to most but here is the reason why. Jack also has decreased myelin (white matter) throughout his brain and a thin corpus callosum. His skull measures right at 50th percetile (always has) and there is some CSF flow around the chiari, so his NS's theory is that because his skull is normal size, but he is missing myelin that something must take up that space so the CSF does the job. As of now, he is not shunted and with all of his congenital GI issues we don't know if using the perineal (sp?) area would work very well and because of his chronic lung disease due to being a 30 weeker and many complications no cavity in his chest would do well either. I'm assuming because most hydro patients need shunted immediately, that is always done prior to PFD. I have also considered (I consider a lot of things as you can tell) asking for pressure testing, but I'm not sure I really want to put Jack through it since his head is normal size and is growing at a good rate and honestly the NS's explanation makes sense to me. By the way, we first found out about some of the brain/spine anomalies last January and the rest after a 2nd MRI in April so we are pretty new to all of this. We thought for a long time all of his problems were only due to being a preemie and his esophageal atresia/trachealesophageal fistula.
Thanks again and sorry I'm so long winded!
Becky, wife to Mike, mom to Logan 4/3/04 and Jack 5/4/07 30 weeker EA/TEF, bowel perforation, CM1, SM, TCS, hydrocephalus, metopic synostosis, thin corpus callosum, decreased myelin, and the many issues that go along with these
Becky1219
 
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Location: Indiana

Re: Help...so many issues, so many questions...

Postby lttutrow » Sat Sep 19, 2009 2:48 pm

Hi,
I am copy/pasting a post from Shelly, Kaden's Mom, from the CCI parents list. They are also a Riley family with Dr. Smith as their nsg.:

Ok I asked my neurosurgeon tonight about why kids have such bad tummy aches and this is what she said " They stem from the middle part of the head in the brain which is where the chiari malformation is located" this is just what she told me.

If you go to the CCI parents group, and then to messages and type "stomach", it shows several exchanges.
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Re: Help...so many issues, so many questions...

Postby Sara » Sun Sep 20, 2009 7:02 am

I would get a second opinion. I don't think it hurts. Can you try Chicago? Frim is there and has a very good reputation with parents. Hydro can actually cause the Chiari to develop, so yes, it is almost always treated first. Sometimes the Chiari will self-resolve with adequate shunting.

My daughter has had continuous ICP monitoring many times. I was very worried the first time but it honestly turned out not to be a huge thing and it did give very valuable data. Most of the time they use a camino bolt. They make a tiny 1/4 inch incision, insert a fibro optic wire that provides continuous readings. After about 48 hours they remove it and one stitch or staple is placed. She only needed tylenol for the discomfort. The symptoms of high pressure and hydrocephalus are pretty much the same: vision issues- including papilledema (your son should have a dilated eye exam to make sure his optic nerves are healthy), vomiting, nausea, excessive sleepiness, irritability and some hydro patients get sunset eyes where the eyes do not open all the way.

Obviously your son has many issues and whenever you get a complicated case like this, multiple opinions are always a good idea. If for no other reason than piece of mind!

Sara
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