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

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Postby syringles » Fri Aug 21, 2009 6:13 pm

Hello, I use to visit when ASAP was a listserv out of . Things have really changed. I had my Chiari surgery in 2001 but I also did have MS which I tried hard to deny for a long time. My question is really for a friend. She sent out prayer requests this last weekend and they hit me like a thunderbolt as everything seemed like Deja Vu. I couldn't reach her but I knew if it didn't turn out to be what she was saying I was going to press her into looking into this being a Chiari Malformation and want to list some of the things she was saying to spark your interest - Let's call her IDODID -Here are her main two emails from the ICU

"This morning we were informed that XXXXXX may have Pseduotumor Cerebri.

The above link tells you what it is. Basically they told us he had increased cranial pressure (swelling of the brain). The “sheathes” housing his optic nerves were swollen. When he woke this morning, he said “Mom, I can’t see straight” 2 times. Then he was ok. They did a spinal tap today and the spinal fluid came back fine. In the meantime, we were trying to focus on if it was Pseduotumor Cerebri, what was the culprit? Excessive Vitamin A is one of the triggers.

We also focused more on what causes Pseduotumor Cerebri, excessive Vitamin A. While we do not have the results back yet of Mason’s Vitamin A lab work, we feel confident that he has Vitamin A toxicity that triggered the pseduotumor. While it sounds bad, and it is, IT WOULD BE GREAT if that is what it is. How did this happen? Vitamin A is part of Mason’s supplement routine. We just started it in July. The doseage was “2 drops”. Unfortunately, the doppler in the bottle is numbered .5ml and 1 ml…..thinking 1 ml is a drop, he got 2 ml drops a day. (the pharamacutical company will be contacted as well as the doctor who had us incorporate it so it does not happen to other parents)."

next email

"When XXXXXX had his spinal tap yesterday, they drained off quite a bit of fluid to help relieve pressure. Your body is constantly reproducing spinal fluid and then it naturally drains. If there is a mass or an obstruction, it does not drain properly, causing an increase of pressure. While XXXXX does not have a mass or obstruction, there is reason to believe there may be inflammation that is causing the process to slow down. None of the preliminary tests have come back yet, specifically Vitamin A. It was shipped to Virginia and there is a 2 day ship time and then another 5 – 7 days for results. L The good news is XXXXX for the most part is stable. They started him on Diamox to help slow down the spinal fluid reproduction to help keep cranial pressure down. We are all still confident it is the excessive Vitamin A that caused the pseudotumor. XXXXX has not vomited since Wednesday. He had an “episode” again today where he could not see straight. The ophthalmologist yesterday said his optic nerve sheathes are only slightly swollen and his eyes look great. Our main goal is to keep him stable and to continue to progress forward.

While I am truly saddened that if/when indeed this does come back excessive Vitamin A, that it could have been prevented, I am hopeful that Mason’s experience will help to educate others. They are already requesting for this to be a case study as they have not seen this before, only read about it. One key point, they see pseudotumors often, but in teens on acne medicine. There is an active ingredient in there that causes pseudotumor cerebrial!!!!!!! Knowledge is power.

While the official verdict is still out, we do know this for sure…..The MRI did not show any masses or tumors, only increased cranial pressure and areas of the menegies were inflamed. XXXXX will be seeing the Ophthalmologist again tomorrow. We are here at least through tomorrow afternoon/evening. XXXXX will have a follow-up MRI in the upcoming weeks as well as continue to see the Ophthalmologist. We pray that they don’t have to do another spinal tap as they have to put him under and he is in pain today from it yesterday. Unfortunately, the person doing the procedure yesterday did not measure the spinal pressure."

When they got home, I asked them to write to me if it turned out this was not Vitamin A Poisoining and sure enough, it wasn't. I then sent her four or five links on Chiari and syrinxes and shared my story and expressed how very painful those headaches with vomiting can be. She told me that "They ruled out the tonsils". I told her that one of the most important things to know is that almost all doctors disagree and with as proactive as she is and believe me she is very proactive (having her child diagnosed on the Autism spectrum due to mild headaches, clumsiness, failure to thrive (things I have seen attributed to a Chiari in a child". I didn't even want to bring up the possibility of herniation but I did tell her that a Neurosurgeon should be treating this, not a Neurologist and got her permission to do into it. I told her my concern is she shouldn't have been told about "tonsils" but the term Chiari Malformation and that it encompasses more than the cerebellar tonsils. The sadness is - Her mother is having a biopsy for Mellanoma, Sister in law has Stage 3 Breast Cancer and I think she said she needs a week or so to regroup. As a decent human being and friend, I feel obligated not just to give her the links as she will then still have to fight doctors, but I beg anyone with a story that is similar, or who knows of a Doctor who views Children's MRIs to relay and send a story to this post and I will get it to her. The only thing they gave him for pain was tylenlol.
I told her that 7mm (I think) use to be the standard for low lying tonsils - I think for children it may be a crowded Posterior Fossa- I don't know as I haven't paid much attention to it for a while. I just know that the most pain I've ever had in my life was the vomitting, headache and eye pain.

Her son is about 4 and 1/2 and I think it would be the greatest blessing if you have a similar story. Bless you all
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Postby youngwife » Fri Aug 21, 2009 7:28 pm

7mm is Chiari at most respectable university hospitals, I think. I will be in prayer for your friends sweet boy. Bless his heart! :(
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Postby razzle » Sat Aug 22, 2009 2:12 pm

Syringles the list serv is still the one in Maine and nothing has changed . You might have to reregister there . Here is the link.

I believe Dr. David Frim in Chicago reads films .
Once you choose hope, anything's possible.

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Postby syringles » Sat Aug 22, 2009 3:28 pm

Thanks to those who recommended Dr. Frim so far but I made one mistake - a Big one - Insinuated it looks like that the tonsils were herniated 7 mm. Indeed that was my statement to her about what I thought she should be asking them to re-look at as I thought that was the standard. They told her nothing about Chiari, just tonsils weren't the cause and after that 2 day stay in the ICU with a pseudo tumor and clear evidence of ICP in this child's brain (with him in excrutiating pain) you can't just send them home saying "it's nothing since it's not the Vitamin A poisoning we thought". I was really hoping since he has the clumsiness, lack of focus that have been attributed to "Autism Spectrum" for lack of a better understanding for the symptoms that this is a warning as one site lists clumsiness and lack of focus (a Childs' Pediatric site) as Chirai symptoms. Having been such a proactive Mother for Autism Spectrums for 2 years, I wanted to be able to find some story of a Child who possibly had this background., I.e., originally thought to be clumsy, lack of focus then ending up hospitalized with ICP or something similar until a proactive parent found the real Answer - Chiari or Chiari and syringomyelia. Sorry I made it sound like they gave her any mm of the tonsils. They brushed her off there completely and left them with absolutely no answer. It's hard knowing what I know and not pushing them towards getting a Chriari expert - Having a Mom's story would really help..

Thanks again.
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Postby Sara » Sat Aug 22, 2009 5:46 pm

Pseudotumor cerebri is rare in children. My twins were both diagnosed with this condition at age 6. The best resource is They can give her the info she needs. Standard treatment includes drugs to lower ICP, and sometimes spinal taps are needed when the patient is in severe distress. If the condition is resistant to medical therapy and all causes are ruled out, they may need to place a VP shunt.
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