2.5 year old in pain - HELP!

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2.5 year old in pain - HELP!

Postby JenandLuli » Tue May 13, 2008 1:22 am

HI! I haven't posted in a long while because I haven't had anything to say. :)

Forgive me if this goes long... I just want to make sure I give a clear picture of my daughter so I can hopefully get some clear insights. :D
My dd is 2.5 years old. She has 2 syrinx - as of Aug 07, the smaller one is at C6-T1 and the larger is T6-L2 and is 7mm at it greatest diameter. It has also been decribed to me as a "persistant terminal ventricale". I have heard terms like "fatty filum" but I cannot get a dr to say she actually has Tethered cord (though I believe she does) she has 2 lower back birthmarks, leg asymetries, torticollis, etc. She does not have chiari. We had an MRI in Aug 07 and we will not have another one until Aug 08. She had Urodynamics testing in Jan (though it was only 1/2 the test as they just filled her up. They did not test how she voids. :evil: ) it showed no dysfunction.

So... now to my question. 10 days ago my dd started screaming and crying about "ouwie in diaper" and her wanting me to change her even though she was dry and clean. The next day she had what seemed like a tummy flu. The subsided and bowel and bladder function seemed normal though she is crying through out the day that she has "ouwie" and even goes up on her tippy toes when crying. She was tested for UTI 8 days ago and it was neg. My dd is in REAL pain. She has pain when she urinates normal, has normal bowel. The urgent care ped. we saw tonight has no clue about SM and told me to use diaper rash cream (She has NO rash! :evil: ) He also told me SM doesn't cause pain (I knew the appt. was a lost cause at that moment! :cry: )

What did your kids experience as their 1st signs that the syrinx were effecting them neurologically?
What kind of pain would a toddler experience?
Could this in anyway be neurological in nature and not just coincidence?

All my mommy alrams are going off saying that this needs to be handled. We have a horrible HMO that does not want to help and I have to fight for every diagnosis we get. I am giving her prunes and cranberry just incase... but I can't help but feel that this is neuro caused by SM.
Can any parents out there help me and tell me if you have experienced anything like this too???

Thanks in Advance!!!
Jen and Little Luli
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: 2.5 year old in pain - HELP!

Postby Sara » Tue May 13, 2008 7:19 am

What state do you live in and who is your nsg? I would recomend you get a second opinion.
Let us know where you live and we can advise you. A qualified nsg is the best person to assess the situation, not a ped.
Sara
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Re: 2.5 year old in pain - HELP!

Postby JenandLuli » Tue May 13, 2008 10:06 am

we live in the LA area. Her NS is Cahan at Kaiser. We had Frim look at her MRI and he could not determin if there was TC. I am waiting to hear back from Cahan.
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: 2.5 year old in pain - HELP!

Postby Sara » Tue May 13, 2008 11:44 am

what did Frim recommend? Can you travel to Alabama? Dr Jerry Oakes is well published on tethered cord with SM. He might be a good choice for a second opinion. here is a link to his info: http://www.neurosurgery.org/sections/di ... sonId=5341

Here is a link to his published material: go to this link http://www.ncbi.nlm.nih.gov/sites/entrez and type in search for box: oakes wj tethered cord
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Re: 2.5 year old in pain - HELP!

Postby JenandLuli » Tue May 13, 2008 3:38 pm

Frim did not have any recommendations. Thanks for the links... I'll check that out. Traveling seems out of the questions right now... I'm just looking to hear from other parents and what they have experienced with their little ones and SM. When they pain started and how you know that it is from SM, etc.
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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JenandLuli
 
Posts: 100
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Re: 2.5 year old in pain - HELP!

Postby Sara » Tue May 13, 2008 7:23 pm

Sadly, it's not always possible to know for sure that something is or is not from a syrinx. There could be a variety of things going on. My daughter was dx at age 2. Her symptoms included dragging her right leg and turning out her foot. An MRI found the syrinx but who could say if that was causing the leg problems? She was a preemie, had a brain bleed a birth...some thought it might be cerebral palsy or a simple out turning of her legs which a lot of kids have. Over the next couple years she had repeated UTI's, lost bladder control and developed shooting leg pain and back pain. At 5 we had her cord untethered. Her syrinx eventually got smaller, but she still has shooting leg pains, still has bladder issues and back pain.

She's 13 now and the answers don't come any easier. She is a chronic pain patient, has been for years. She gets pain attacks at various locations in her body, always has a headache that never goes away and opinions as to if it is related to any of her 15 surgeries, or numerous diagnosis including tethered cord, SM, Chiari, hydrocephalous, intracranial hypertension are as varied as the number of doctors who treat her.

We as parents have to become our own detectives and we are the most likely to figure out the mystery of our kids because we are with them 24/7. It is a tough job and not easy. In our case, we have treated everything and all that remains is the pain so why is less of an issue. However, during the process of deciding on surgical intervention, the power of elimination was our best bet. We would sit down and say, well let’s see if it could be any of these things, does it fit the known patterns, etc. If we are lucky then just one diagnosis is left on the table, and that is why we attack. But we aren't always lucky and that isn't reassuring when your child is suffering.

I hope you get some good advice and counsel from the doctors. Maybe Oakes will review the films by mail if you can't see him, and offer an opinion.
Sara
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Re: 2.5 year old in pain - HELP!

Postby JenandLuli » Wed May 14, 2008 7:38 pm

Sara - Thank so much for telling me about your daughter. I am so sorry she is in constant pain. :cry:
Your story help my husband and I to get a real picture of what SM can be all about.

We don't know anyone with SM and the dr's have all thold us her SM is incidental and she would not be effected by it. Of course, all my research says otherwise. And now with this pain I am afraid of what is to come in the future.

We see the NS in a week. I hope he is able to give us some answers.

Thanks again for sharing with me!
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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UPDATE - 2.5 year old in pain - HELP!

Postby JenandLuli » Sat May 24, 2008 1:06 am

Day 21 of pain -
:cry:
We saw our NS and he ordered a new MRI without and then with contrast. Also a CSF flow study. He mentioned that "she doesn't have much of a chiari" - WHOA!!!!!!!!! :shock: We were told there was no chiari... I didn't press him on it because I thought maybe he was confusing her with another baby. :roll: And IF there is chiari the MRI will show it.
Of course the paperwork had not gone thru this morning... so I called this afternoon but the person who needs to schedule it was gone for the weekend... So I need to wait till tuesday to schedule it. And who knows when they can get me in. My daughter will need to be asleep for it so It's a bit more complicated than just an MRI.
Our NS again said he thought it was "persistant central canal" but did admit that the fact that she is having sacrum pain sounds neurological... but he couldn't say for sure until he sees the MRI.
Now I am thinking about fundraising for a trip out to the Chiari Institute.
Does anyone have any recommendations on THE BEST place to take a toddler w/ SM, possible tethered cord, and I guess possible chiari???? :?
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Posts: 100
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Re: 2.5 year old in pain - HELP!

Postby Lipper5 » Fri Jun 13, 2008 6:18 pm

We went to Hershey Medical Center in Hershey Pa. We LOVE Dr. Iantoscas. My son was 1 1/2 when he had his decompression surgery. We went to Childrens Hospital of Philly but he was no help(Dr. Sutton). We had called Dr.Frim in Chicago but he would only see us not look at anything. And I thought about the Institute but I heard good and bad things. So anyway my recommendation is Hershey but that is up to you. And it is so hard when they are not near you. My son goes back for his 6 month post op in August. Good Luck!
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