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CHIARI AND PARENTHOOD

A forum to discuss the challenges of parenthood and Chiari.  Posting discussions, questions, suggestions, and make new friends. 

Members: 79
Latest Activity: May 14

Discussion Forum

son dealing with chiari

Started by Ashley. Last reply by Ashley May 14. 6 Replies

Hi my name is ashley my son is mason be is 3. He was diagnosed in january. He has a 19mm herniation which scares me since most peoples are that bad that I have found so far. The neurosugeon Is now…Continue

Questions

Started by NannaBanana. Last reply by Catlover72 Mar 27. 4 Replies

Does anyone have any experience with their child's side effects to topamax? Caleb's Neurologist decided to put him on it after 20 minute episode today (he has had two other small ones in the days…Continue

pre and post surgery

Started by Tama. Last reply by Tama Jan 17. 2 Replies

I sent this out, but I'll also post it here.  My 8 year old son is scheduled for decompression surgery three weeks from now and I wanted suggestions as to what to bring to the hospital and what to…Continue

Just a few questions

Started by Amber Williams. Last reply by neidigd May 23, 2013. 9 Replies

Back in July, my four year old was diagnosed. Larissa was recommended to have decompression surgery. She was originally diagnosed with epilepsy, and the MRI found the Chiari's. Aside from her…Continue

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Comment by Shananne on December 18, 2013 at 11:31am

Just wanted to let you all know that our next NY ASAP support group meeting is TONIGHT in Garden City, NY.  **Intracranial Hypotension** - topic of discussion.

For more info nyasapsg@yahoo.com or www.asap.org
Comment by NannaBanana on November 30, 2012 at 6:40am

Does anyone have any experience with their child's side effects to topamax? Caleb's Neurologist decided to put him on it after 20 minute episode today (he has had two other small ones in the days prior) where he said he "couldn't see". He was grabbing and hitting his head and eyes saying "Not again!". We were terrified! He was super light sensitive afterward and then went back to normal. They think this was some sort of headache/migraine. I'm so confused!

Comment by Parker's Mommy on July 31, 2012 at 1:48pm

As far as surgery don’t be scared.  Remember the alternative to surgery that is by far worse.  I agree it is scary but it is almost a relief as well to know what is wrong, how to fix it & what to do next.  Afterwards he will be on a lot of pain meds (which made our little guy so sick in the ICU).  The 1st night will be spent in ICU.  They typically do not want parents in the ICU but when your baby is crying for you ----- hold your ground they need you when they may wake up looking for you.  Tell the nurses you prefer to stay in the icu room w/ little one.  The hardest part was worrying about infection our little guy got strap & was running a high temp of 104 ….. I was freaking out.  Rushed him to Children’s in Detroit where he had the surgery done a long hour drive in traffic.  They will send him home w/ antibiotic & don’t skip it.  Also, stay on top of the pain meds I don’t care what the nurses say as they try to wean them off pain meds keep him as comfortable as can be.  After it is said & done the restrictions are hard as far as activity we are any activity that might cause whiplash.  Such as bounce houses, trampolines, climbing higher than 3 ft, roller coasters etc….   Remember to focus on what he or she can do as opposed to what they can’t.  I have found by stating you can climb on this structure instead of “No don’t climb on that one!” This new activity restrictions is hard I can’t imagine having a child who is older….that would be a struggle as our little guy is 3  now 4 making it easier to make this transitions.  It is challenging w. family as they do not understand the importance of restricting those activities & they also do not understand that this is a lifetime commitment.  I think that going through a good portion of the bottom of his skull, restoring cfs flow, removing bottom vertebra, & removing cerebral tonsils that protrude through spinal cords opening is a severe surgery & we will do whatever it takes to keep our little guy safe.  Hope

 

We are in Utica Michigan 45 minutes North of Detroit. We just recently moved. Our son (3 yrs old) was diagnosed Jan 4th 2012 & had surgery Feb. 10th 2012 after 2nd spine MRI. His is severe 16 MM & would have caused brain impairments or physical impairments if not taken care of immediately.  He could never tell us of his head pain but he rocked wholes into our walls.  The rocking has stopped but occurs when he has a severe headache or ear fluid & pressure.  His forehead hurts every single day.  It is so sad but the alternative is way worse.  Our daughter (6 yrs old) was diagnosed in May 2012 & has mild 5mm. No surgery at this time. It affects her legs, balance & gross motor activities.  Her poor legs hurt her every single day.  She has ear tubes that don’t stay in just like her brother & constant sinus issues that put her in the hospital every spring from optical cellulites, impacted sinuses, tonsils/adenoids removed + 5 sets of ear tubes + ear drum ruptures (5x’s).  Our little guy has had 4 sets of ear tubes & constant ear infections + 2 ear drum ruptures.  Is this a common w/ Chiari sinus/ear issues?  Our daughter who is 5 in the middle of the two (age wise) who have Chiari has mild sinus/ear infection issues. 

Comment by Christopher N. on July 30, 2012 at 10:46pm

My son is 2 and we are getting surgery in August 20. We are very scare, do you lady's have any suggestion? 

Comment by Andrea on June 27, 2012 at 8:29pm

It was very hard for the first few weeks, my little man pulled thru his decompression as well. But at 3weeks out of surgery he developed an infection. We go very lucky, it was just a staph, not MRSA. And they had to go back in and clean it out. He did wonderful. Before his surgery his was 16mm. And was very lucky to have had his done. He had alot of swelling from the cerebellum & it was putting pressure on his spinal cord. When the Dr went in he said the cerebellum had a lot of scare tissue. I was really dredding this surgery & almost called the dr back to see if we could hold off a little bit longer. But I didnt and I am very thankful I didn't. Because if we would waited any longer, Carter could have had mild brain damage or spinal damage. I hope this may help someone, if you are considering this surgery for your child. There are so many different stories on here & support. I just wanted to say thankyou for the ones that helped me. My little man is doing so good now, some minor problems but nothing serious. I pray for every parent that has to go thru this, it is stressful, but this support group has really helped me. Thanks again, Andrea

Comment by AlannasMommy on June 13, 2012 at 7:10pm

It has been decided.  Alanna will have surgery.  The doctor has decided to do a craniectomy to relieve the pressure off her brain.  It will be scedualed as soon as possible (insurance has to give the go ahead, and she has to be fit into the surgery rotation, then we will be told the date).  the doctors are shooting for ina week or so, so as to allow her to be able to go on our trip to D.C. to see bubbie and pop-pop (my parents) as planned in August.  I knew this was coming, but I am still scared.

Comment by Nolan's Mommy on June 12, 2012 at 8:43pm

My son Nolan was decompressed on May 18th.  He had part of his skull removed, part of his c1 removed, a dura patch placed, as well as his 13=16mm cerebral tonsils cauterized.  He is 3 1/2 weeks post opp and so far doing amazing!  Don't get me wrong, we have daily episodes of him being in pain and throwing tantrums, but I can not complain too much as he has no signs of infection or rejection from the patch or surgery itself.  It is hard, no doubt.  I have days when I cry and question the surgery, but at the same time, he was crying multiple times a day due to his head pain from the Chiari prior to surgery, and now he cries less frequent and I know it's due to the trauma of surgery.  So to all the parent's out there who are dealing with the same thing or questioning what to do, just want to say I understand and support you!  The hardest thing I've ever been through (harder than giving birth to 3 babies) is watching one of your babies be in pain.  I hate Chiari and what it has done to my family, however, I will choose to not let it destroy us.  Stay strong all you Chiarian warriors!!!!

Comment by Parker's Mommy on June 12, 2012 at 8:41pm

I just started to cry after reading your post. I feel your pain. It is
hard no doubt. The hardest part is the 1st three weeks. Than it gets easier. My son was three at the time ( Feb 10 2012). The hardest part is the life long restrictions of no activities that might produce whip lash i.e bumper cars, bounce houses,
trampolines, contact sports ect.... we are getting through it. Each day one
step at a time. Our son is amazing & my hero no doubt. We found out that my daughter has it & pending spine MRI June 27th will determine her surgery (6yrs old). I will try to think of specifics & get back to you. Good luck to you & your little one.

Comment by Parker's Mommy on March 12, 2012 at 5:04pm

How is your sweet little on doing?  How are you doing?

My son, who is three, had a MRI Jan 4th 2012 and no sooner than I entered the door carrying a groggy boy the MRI dept. called & said our son has Chiari Malformatyion of 16mm & requires an apt. w/ chief Neurosurgeon the following week.  On Jan 4th 2012 our 3-year-old son had On Feb. 10th Parker had a Craniotomy (removal of bottom portion of the skull) & decompression/removal of the cerebellum that was protruding through his spinal cord opening. The surgery also entailed removal of the majority of the top vertebra in order to allow more room for the bottom portion of his brain. They opened the Dura & patched it w/ a synthetic patch to allow for more room. Cerebral Fluid Flow was restored as well. It is not that his brain it too big but his skull is too small. Nuero assures us he was born w/ this condition & thankfully we found it when we did, as paralysis is inevitable w/o surgery due to the 16mm size of malformation. I am not going to sugar coat things surgery was rough 2.5 days in ICU & 5 days in the hospital. Twelve days later he started to run a 104.3 temp & back we went to discover –luckily- he only had strep not meningitis as that is a slight possibility during healing from this surgery. Unfortunately, the girls (his sisters 5 & 6) have caught strep (Mom too) however, it could always be worse. He is still healing and will continue to for 6 more weeks. Our goals currently for his recovery are pain management, playing quietly for 30 minutes & than resting his head/neck. His forehead and tummy hurt him everyday although is no longer on narcotics to reduce pain. Simple old Tylenol & Motrin. The operation site is close to the nausea center hence the nausea. Light bothers him alot & we draw the blinds during the day & when has headed out for follow up apt. sunglasses are worn. He has good days & bad days it is all part of the healing process. We are so blessed! Please pray for a speedy and successful recovery for our brave superhero! He has an amazing attitude about this entire ordeal--- he truly is so brave!

 

Ohhh--- thought you could relate to this……..He was born with a large birthmark on his back that is close to his spine. It started growing hair and is becoming plumper. Neurosurgeon wants another MRI prior to surgery to determine if Tethered Cord and any pockets of fluid. Feb. 6 is his MRI of spine. My little guy was born with issues, 5 weeks early, 5 days in NICU, bagged, tubed, we held him upright to sleep until he was 18months due to breathing issues, trancheamalacia, hypotonia, ptosis, reflux, developmental delays, frequent hives, choking & swallowing issues, 3 sets of tubes in ears, adenoids removed, rocks a lot of the day (put a whole in our family room wall as he rocks so intensely prior to surgery), vestibular seeker, mild heart murmur, wears braces of feet/legs SMO’s, W sitter, frequent croup, walked 6 months late, receives OT, PT, Speech, & sensory integrations since 6 months, but is a bright little guy..

Thanks,

Kim

Comment by Amanda Cofhlin Druery on February 17, 2012 at 9:39pm

My 4 yr old has trouble finding his words sometimes and he gets really frustrated.  I thin this has to do with the Chiari, but as a parent you never know if it's just the age.  I know the diagnosis is hard to swallow, just remember you are not alone.  I get though each day with lots of prayer and faith that God is in control and NOT me!!

 
 
 
 

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