Its been a few months since Morgan's shunt setting for her lateral ventricles were increased to 120 (from 50)...we have been monitoring her and were supposed to watch for "increased tone" or other concerns. It seems very vague and with Morgan we never seem to know if her behavior and actions are related to her shunts or something else. I have suspicion her setting is too high now and are under draining but could be completely wrong so wanted to jot down my non-medical/motherly instinct before we take her in and find out differently :)
She hasn't slept through the night since her last appointment and this is our first concern. Her pediatrician suggested seeing a sleep specialist but we haven't started down this path yet and it clearly started happening right after the last ER visit. She wakes up crying usually 2 times per night. Usually around 11pm and then again between 1-3 am and typically she wakes up crying- sometimes inconsolable. We have implemented a sticker reward system a couple of weeks ago which has helped keep her in her room but it isn't stopping her from waking up so to me the question is what is waking her up- headaches, bad dreams?
Her teacher talked to me a couple months ago now and mentioned she was also concerned because she seems like she is unwilling and unable to do things she used to do with little assistance - using the bathroom, dressing etc. She also said about two weeks ago that her balance seems really off which we have also noticed at home and received two phone calls from her ECSE school nurse after she has fallen. Incontinence is also a concern and has always been to some degree but seems to be getting worse, not better, and some days having several accidents.
She did receive Botox injections for the first time last Wednesday (two shots in both legs) to see if we could reduce tone/cerebral palsy and toe walking in her right leg (we are questioning why they injected in her left leg also). On Wednesday afternoon she was very out of it but we are thinking likely related to the Nitrous she had during the procedure? Then on Friday we went to her regular OT/PT appointment in the morning and she was so out of it- just laying there and mostly unwilling to participate to the point where her PT suggested we do put a call into Neurosurgery just to rule out any issues.
Moved up her MRI/Neurosurgery follow up from Jan 19th to next Thurs, Dec 29th - hopefully all is well and unrelated but worth the check for peace of mind!
Monday, December 19, 2016
Tuesday, August 30, 2016
follow up MRI
We had Morgan’s follow up MRI today- saw Dr P at St Paul
Children’s for the first time and I swear their MRI machine took at least twice
as long! Was a little rough and one
unhappy girl!
Scans look better and her lateral ventricles are now “baseline”
at the new 120 setting. We are now going
to watch and make sure this setting isn’t too high – he asked a lot of
questions about how she was doing as far as tone and headaches, etc. We spoke about what to watch for which would
signal the setting is too high (and not draining enough)- headaches after laying
down for a while, increased tone in both sides and inability to do motor
functions she has done in the past. Will
continue to monitor and hopefully just back in 6 months!
Of course couldn’t get her shunt to reset (or at least not
beep to signal it was)- back to X ray to check the setting but all looked good
so we were on our way..
Saturday, July 9, 2016
Feeling Better
We have been monitoring Morgan all week, skipped school to stay with Grandma on Thurs and still some afternoon lethargy and headaches for couple of days but resolved by lying down for a little bit. The last two days she has seemed much better and hoping her body has now adjusted to the new shunt setting! A follow up appointment for MRI and neurosurgery set up for Aug 30th.
Monday, July 4, 2016
thankful for play doh
Not exactly where we want to be spending our morning (in Children's Hospital St Paul) on July 4th! Morgan woke up feeling fine and acting like her usual self (I didn't really expect different since mornings are usually fine)- we ordered breakfast after they gave her clearance to eat and ate breakfast in bed while watching Queen Elsa. We were told the neurosurgery team would be rounding at 8am to check on her and if she was feeling OK, send her home. Of course this ends up being about 11am after asking a few times. Morgan is feeling great and restless- watched a movie, read books, played with a few toys but she wants to go home (so does mom!)....along to save the day is Children's volunteer with a tray of play doh- kept her busy for at least an hour!
Finally neurosurgery comes in and agrees that she looks good and discharged to monitor her. They said give her about five more days (as long as she isn't extremely sick or not eating, etc) and watch her and schedule a follow up appointment in about 4 weeks if she seems to get better.
Finally neurosurgery comes in and agrees that she looks good and discharged to monitor her. They said give her about five more days (as long as she isn't extremely sick or not eating, etc) and watch her and schedule a follow up appointment in about 4 weeks if she seems to get better.
Overnight Hospital visit
3 days after change in shunt setting...we are having a great summer day swimming in my brother & sister in laws swimming pool, grilling dinner, etc. and suddenly Morgan wants to lay down- I could tell she was getting a headache again. She was laying on the floor in their living room for a few minutes and suddenly starts crying and vomiting :(. Quickly packed up our things and headed to the hospital!
We went to St Paul Children's ER for the first time (instructed by neurosurgeon when we called on the way)- thankful for a quiet night there and fast service. She seemed to be fine by the time we got to the hospital but after several days of her with bad headaches, lethargy and now vomiting we thought best to get her checked. She went in for limited brain MRI again - what an amazing staff there that had her laughing and watching Frozen during the MRI! The ER doctor came in and reported the scans were still concerning and Dr Petronio was on his way in. When he arrived he had reviewed the MRI and said actually that they looked better- her lateral ventricle size increasing which is what he wanted to see. He was also confused and concerned about her symptoms but said sometimes it takes patients a week or so to adjust to the new changes. When I asked if it was normal to have these afternoon spells he sort of laughed and said "nothing is normal with hydrocephalus/shunts"...hmmmm, well that's comforting but so true.
We talked for a while about what to do but in the end he suggested leaving the setting as is and just watching a few more days- hated to reset again before we give her body a chance to adjust. He did advise we stay the night at the hospital for monitoring so we transferred up to a room and got settled about 11pm, hoping all goes well and we can get out of here tomorrow morning early! Morgan was not wanting to sleep in the scary hospital crib by herself so ended up brining in a bed about midnight and I curled up in there with her :)
We went to St Paul Children's ER for the first time (instructed by neurosurgeon when we called on the way)- thankful for a quiet night there and fast service. She seemed to be fine by the time we got to the hospital but after several days of her with bad headaches, lethargy and now vomiting we thought best to get her checked. She went in for limited brain MRI again - what an amazing staff there that had her laughing and watching Frozen during the MRI! The ER doctor came in and reported the scans were still concerning and Dr Petronio was on his way in. When he arrived he had reviewed the MRI and said actually that they looked better- her lateral ventricle size increasing which is what he wanted to see. He was also confused and concerned about her symptoms but said sometimes it takes patients a week or so to adjust to the new changes. When I asked if it was normal to have these afternoon spells he sort of laughed and said "nothing is normal with hydrocephalus/shunts"...hmmmm, well that's comforting but so true.
We talked for a while about what to do but in the end he suggested leaving the setting as is and just watching a few more days- hated to reset again before we give her body a chance to adjust. He did advise we stay the night at the hospital for monitoring so we transferred up to a room and got settled about 11pm, hoping all goes well and we can get out of here tomorrow morning early! Morgan was not wanting to sleep in the scary hospital crib by herself so ended up brining in a bed about midnight and I curled up in there with her :)
Saturday, July 2, 2016
120 not agreeing with Morgan
A couple of days after her shunt setting changed to 120 and Morgan is making us a bit nervous...both afternoons she has gotten very glossy eyed, tired and grabs her head and cries saying she has a headache. Good news is that after she lays down for a bit she seems to feel better. This is the first time she has been able to tell us what is wrong so at least the guessing game is over and we know she is having headaches!
This seems a bit odd and backward to me- they said it might take her a couple of days to adjust to the new settings but seems like this wouldn't happen in the afternoon (when over drainage occurs)??? I felt like she would have a harder time adjusting after she was lying down for a while (when the amount of fluid increases in her head more than she has been used to lately)...I give up trying to figure out symptoms of hydrocephalus!
Thursday, June 30, 2016
Routine Neurosurgery follow up and MRI
In hind sight I just had a feeling this visit wasn't going to go smoothly and remember feeling glad that we had this appointment coming up in the days leading up to it. Morgan has just seemed a little "off" - can't really explain it but isn't sleeping well, just seems a little cranky/needy lately and she woke up vomiting a few evenings ago.
We had a noon appointment for limited brain MRI and then follow up with Dr Petronio (neurosurgeon) right after. Then immediately following I scheduled an orthotic appointment across the street- A LOT for one day, what was I thinking!
Morgan does not have a love for MRIs so this was painful to watch and pin her down as usual and watch her scream and cry :(. We got through it and headed over to neuro and immediately could tell something wasn't right when Dr P's first question was "how has she been acting"? He showed me her scans (not a pretty sight) and her lateral ventricles are very small and her brain essentially collapsed in on one side - meaning there is not enough cerebral spinal fluid in her ventricles and her posterior shunt is over draining. ugh. Her 4th ventricle (Anterior shunt) looks unchanged which is good.
Her shunt settings have been moving down the last couple of visits because they were set backward about a year or so ago (posterior went from 80 to 60) and then the last visit they were unable to get the shunt to reset after her MRI so left her posterior at 50. This is clearly too low and so the decision was to increase the setting which will slow down the CSF flow - I believe the highest setting on the Codman valve she has is 200, he decided to change to set at 120 so that the pressure change wasn't too great. The other concern he has is that Morgan's shunts currently do not have an anti-siphoning device. Even though the shunt setting controls the pressure, certain positions like standing, sitting versus lying down influence the shunt function/drainage. Since Morgan is growing and standing and walking more now this is going to impact the drainage and he thinks at some point this shunt will likely need to be replaced in order to put in an anti-siphon device but of course this is not something we would do until absolutely necessary. He also spoke about a new shunt valve coming out soon which is MRI resistant so that they don't have to be reset after MRIs which would be ideal to wait for.
So...plan is to change the shunt setting to 120 and schedule another follow up in 4-6 weeks to check and ensure her ventricles are larger. The good news was that he did a thorough exam, looked at her muscle tone, etc and said she looks great and progressing well. He of course had issues trying to get her shunts set again (I pretty much expect this again), in order to make sure he got them set we had to head back down for CT scan which Morgan was not happy about and after about 20 pictures they finally got a view of the setting which looked fine. 1 hr appointment turned into 4 hrs once again :(
Some info I found helpful on HA site: anti-siphon devices incorporate a silicone membrane that closes when conditions favoring postural over drainage are present. The devices react to hydrostatic pressure across the two ends of the catheter and close the valve (by increasing the valves opening pressure) when the patient assumes a vertical posture.
We had a noon appointment for limited brain MRI and then follow up with Dr Petronio (neurosurgeon) right after. Then immediately following I scheduled an orthotic appointment across the street- A LOT for one day, what was I thinking!
Morgan does not have a love for MRIs so this was painful to watch and pin her down as usual and watch her scream and cry :(. We got through it and headed over to neuro and immediately could tell something wasn't right when Dr P's first question was "how has she been acting"? He showed me her scans (not a pretty sight) and her lateral ventricles are very small and her brain essentially collapsed in on one side - meaning there is not enough cerebral spinal fluid in her ventricles and her posterior shunt is over draining. ugh. Her 4th ventricle (Anterior shunt) looks unchanged which is good.
Her shunt settings have been moving down the last couple of visits because they were set backward about a year or so ago (posterior went from 80 to 60) and then the last visit they were unable to get the shunt to reset after her MRI so left her posterior at 50. This is clearly too low and so the decision was to increase the setting which will slow down the CSF flow - I believe the highest setting on the Codman valve she has is 200, he decided to change to set at 120 so that the pressure change wasn't too great. The other concern he has is that Morgan's shunts currently do not have an anti-siphoning device. Even though the shunt setting controls the pressure, certain positions like standing, sitting versus lying down influence the shunt function/drainage. Since Morgan is growing and standing and walking more now this is going to impact the drainage and he thinks at some point this shunt will likely need to be replaced in order to put in an anti-siphon device but of course this is not something we would do until absolutely necessary. He also spoke about a new shunt valve coming out soon which is MRI resistant so that they don't have to be reset after MRIs which would be ideal to wait for.
So...plan is to change the shunt setting to 120 and schedule another follow up in 4-6 weeks to check and ensure her ventricles are larger. The good news was that he did a thorough exam, looked at her muscle tone, etc and said she looks great and progressing well. He of course had issues trying to get her shunts set again (I pretty much expect this again), in order to make sure he got them set we had to head back down for CT scan which Morgan was not happy about and after about 20 pictures they finally got a view of the setting which looked fine. 1 hr appointment turned into 4 hrs once again :(
Some info I found helpful on HA site: anti-siphon devices incorporate a silicone membrane that closes when conditions favoring postural over drainage are present. The devices react to hydrostatic pressure across the two ends of the catheter and close the valve (by increasing the valves opening pressure) when the patient assumes a vertical posture.
Sunday, June 19, 2016
Hydrocephalus Association Conference
The Hydrocephalus Association hosts a national conference every other year and this year it happened to be in Minneapolis. I spent the last couple of days attending several conference sessions and it was so interesting to get updates on the research they are doing- a few interesting things I learned I figured this was the best place to jot down my notes:
- research being done around the presence of Lysophospholipids (LPH) in post hemorrhagic hydrocephalus and the TGF-β inhibitor- basically found if they inject the drug Decorin in rats reduces instance of hydrocephalus- study here: http://www.ncbi.nlm.nih.gov/pubmed/23983032
- listened to Neuropsychologist speaking about common issues they see in hydrocephalus patients and therapies. This was very interesting to me and some of the areas they tend to see delays in specifically around spatial visualization (doing puzzles, etc), processing & response times when you put them on the spot with a question for example. They also mentioned hydrocephalus children tend to have delays with memory & concept formation, language discourse (understanding sarcasm), math and reading comprehension (abstract questions about what they are reading). Sensitivity issues was also mentioned (Load noises and tastes) which we definitely see in Morgan. This is all helpful information to share with physical and occupational therapists so they know where to focus their therapies and recommends a neuropsych exam with all hydrocephalus children around the age of 5.
- interesting to watch ETV with CPC procedure and listen to a neurosurgeon thoroughly explain the risks and when they would or would not consider these procedures as an alternative to shunting. Risks included factors of individual brain anatomy- close to pituitary gland, proximity to basilar artery- 15% chance of ST memory loss, hypothalamus issue 11%. The success of this procedure is mostly found in ETVs of older patients without prior shunts or infants but not with post hemorrhagic (brain bleed) hydro- rate of success they are seeing in the US is 30%, in Africa was 47% but they do not have alternative therapies there.
Of course was also beneficial and most interesting to meet other hydrocephalus patients & families and network. We enjoyed a family dinner & talent show on Sat night with Morgan & her brother! Will definitely be checking out where the HA conference is headed in 2 years!
- research being done around the presence of Lysophospholipids (LPH) in post hemorrhagic hydrocephalus and the TGF-β inhibitor- basically found if they inject the drug Decorin in rats reduces instance of hydrocephalus- study here: http://www.ncbi.nlm.nih.gov/pubmed/23983032
- listened to Neuropsychologist speaking about common issues they see in hydrocephalus patients and therapies. This was very interesting to me and some of the areas they tend to see delays in specifically around spatial visualization (doing puzzles, etc), processing & response times when you put them on the spot with a question for example. They also mentioned hydrocephalus children tend to have delays with memory & concept formation, language discourse (understanding sarcasm), math and reading comprehension (abstract questions about what they are reading). Sensitivity issues was also mentioned (Load noises and tastes) which we definitely see in Morgan. This is all helpful information to share with physical and occupational therapists so they know where to focus their therapies and recommends a neuropsych exam with all hydrocephalus children around the age of 5.
- interesting to watch ETV with CPC procedure and listen to a neurosurgeon thoroughly explain the risks and when they would or would not consider these procedures as an alternative to shunting. Risks included factors of individual brain anatomy- close to pituitary gland, proximity to basilar artery- 15% chance of ST memory loss, hypothalamus issue 11%. The success of this procedure is mostly found in ETVs of older patients without prior shunts or infants but not with post hemorrhagic (brain bleed) hydro- rate of success they are seeing in the US is 30%, in Africa was 47% but they do not have alternative therapies there.
Of course was also beneficial and most interesting to meet other hydrocephalus patients & families and network. We enjoyed a family dinner & talent show on Sat night with Morgan & her brother! Will definitely be checking out where the HA conference is headed in 2 years!
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