DESPERATE IN NEED -PLEASE HELP MY FRIEND (BACKGROUND STORY A LITTLE LONG BUT NEEDED TO GIVE YOU ALL INFORMATION TO HELP)

[syringles]

Please help me help this very good lady.  She spends most of her time helping others and during the last 3 weeks has found out her sister –in-law with 3 children under 10 has Stage 3 Breast Cancer, her Mother is in town for the week to be treated for Skin cancer and several years ago, she became very proactive about her son who (And this may be part of the story – apparently with a few developmental delays, clumsiness, some headaches to my understanding and temper tantrums) was said to be on the Autism Spectrum which I had to come to learn was not Autism but the Spectrum can be anything from simple ADD to full blown really bad Autism therefore called the Spectrum.  I see a totally normal boy yet I don’t live there.  I know they went the nutrition route and that’s more than some would do.  But suddenly this weekend he began to vomit uncontrollably with headaches and our local Children’s Hospital sent them away.  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 after they ended up in the ICU

"This morning we were informed that Jason may have Pseudotumor Cerebri. http://www.revoptom.com/HANDBOOK/SECT53a.HTM

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 Pseudotumor 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 Jason’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 Jason’s supplement routine. We just started it in July. The dosage 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 pharamaceutical company will be contacted as well as the doctor who had us incorporate it so it does not happen to other parents)."

next email( this obviously caught my attention and I looked up Vit A toxicity and it was a cause exactly as she described but it had to be long term and I knew I would be writing)  You can see she is learning all along in the hospital but about the wrong thing

"When Jason 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 Jason 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.  The good news is Jason 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. Jason 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 Jason’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 menengies were inflamed. Jason will be seeing the Ophthalmologist again tomorrow. We are here at least through tomorrow afternoon/evening. Jason 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 Poisoning 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 some inquiries such as this. 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. I explained I was told that it was not just  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. My daughter works in her husband’s office and he is beside himself (a big good ole guy type) and he can’t understand how the doctor’s just say now – okay go home we don’t know what it is.

My biggest gift would be to receive a parent’s story or perhaps a now grown child with symptoms; maybe they match his so-called Autism spectrum.  Obviously you can’t have a swollen ICP for now reason and swollen Optic nerve sheaths and a little boy vomiting with headaches for now reason.  I really thought that when it came back negative for vitamin A, I could show them the Chiari and **** sites (****.org) is a great one and bells would ring in their heads but having been told “Tonsils were ruled out” has them thinking I might likely be sending them down another wrong emotional path.  I really think this is better than the other one and I worry about this little boy…. 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…P.S. I also posted on **** site.

[rozia]

left you a message on ASAP post

[selmaS]

Thanks for sharing the info on the Vit A ...I was not aware that too much could cause Pseudotumor Cerebri.