Question: Are there holistic and or traditional Western medicine treatments for brain gliosis and brain cysts and brain developmental venus malformation for my 4 yr old twins? Their apnea seems to make the brain lesions worse. It seems there isn't any traditional western medicine docs.

I can show the 2 MRIs for both twins if needed. They each had one done twice. The DVM MRI showed it got a sliver larger and the gliosis was unchanged.

Not sure how to upload reports but will try.

Baby A with DVM was born blue.

It was an emergency because of preacclamsia at 34.5wks. Once delivered she was held up to me but the doctor screamed get her to NICU. Where seconds later she can be heard screaming and several more twin B was born.

There was a 1-2minute lapse between each delivery.

Spent 20min in NICU immediately nursed but concerns of jaundice for both. She failed 1st hearing but not 2nd test. Her recent tests came back all normal though she was recently shoved out of an inflatable 4 ft up, hit her head on edge of a XXXXXXX ran to my husband with a huge lump on rt top of head, EMT friend there examined and ran pcm who wasn't concerned enough so I took her to her neuro sleep doc as we do not have a neuro right now and he said prob a concussion. She slept more for about 3 wks more, she didn't respond to me when I called for her. It took her about 5-9seconds but she said she did hear me just takes her a while to respond but that was only after accident which has been about a month. Previous neuro who has since moved so we search for a VASCULAR NEURO for both because of daddy's brain said that she will need another MRI/MRA in about 2 yrs which means next year though I am concerned she will need one sooner from fall.

Age 3 we found a hole in her ear. There is an auricular pit of 1mm tube that ran down side of her face but doens't seem to be a concern we do not even see the hole. Her kidneys were also sonogrammed and are fine.

Age 2 innocent heart murmur diagnosed and halter monitor placed because she was saying chest pains, eyes would cross, inability to communicate. This seems to have lessened a lot though she is very tired and since age 2.5 she started having tantrums at every turn and her apnea is diagnosed as worse then twins though both were bad.

Age 4 she woke twice in a week with petichial above her top lip and veins out of each corner of mouth. Hasn't happened since. We just make sure to flip them all night as they try to sleep on their backs and find that flipping them to side or stomach assures they have a better morning and day without migraines otherwise they wake screaming as she did every morning till she was 4.

Twin B our son was born was lively eyes open and moving about wrapped up and shown to me. He was delivered 1 minute later. He tried moving back up the doctors were saying and the doctors pulled the curtain down trying to rush him out of me. He ended up having to wear for 4 months a harness for his hips though they said it wasn't from being pulled out but from ball not being in the socket entirely. Hips are fine now but he falls and trips a lot.

Pediatric neurologist sent him to a Developmental behavioral pediatrician because of Multiple Sclerosis concern because of the gliosis and/or cyst(s) well seems not as much a concern with cyst(s).

He has had 3 big falls.

Age 6months I fell with wound vac on my stomach but he hit head on floor. Rushed to ER he was falling asleep on 10 min ride to a CHOP and with no MRI they kept him for a few hrs and doc thought it was a concussion. Gliosis they said seemed en utero according to neuro and radiologists they knew of previous fall but said they can tell the age of the gliosis was from en utero but I don't understand how.

Age 2 climbed out of bed in middle of night and fell out instead but he ran to me but slept for days after. He ended up in ER with the 5 day EEG and later MRI.

Age 3 pushed by another kid off monkey bars 3 ft drop directly on head. He ran to me we went to sleep neuro who said he seemed fine. He cried every night for 2 wks.
Neuros have said no follow up needed though they caveated that with some times things can show up months later. This terrifies us. So we let them play but don't let them get crazy for about a month after these sort of things happen. It is a horrible place to be with your heart in your throat and they cannot communicate what is really happening. So we can only pray and go to the neuro sleep doc right now.

Thank you

Sorry, my previous reply did not go through.

Thank you again for your thoughtfulness.

FYI: :) Sometimes it helps you help us when you know more of us too. I have was working on a masters in Child Psychology and worked with autistic and did a lot of research for my husbands diagnosis of a CCM. So I try to look at what is going on with my twins meeting milestones etc.

IF I did not mention:
I took fertility drugs (Clomid, Letrozole, Gonal-F, Progesterone to keep them in and Zofran to stop vomiting which I did from 5wks-34.5wks but it made me vomit more) and evenutally when fertility drugs did not work I started Macrobiotics (beans, greens, sprouted whole grains) with the drugs to conceive and I was 39 when I got pregnant through IUI.

Our sweet girl who is very social and wants to offer any person in pain a kiss to them even strangers she is just very kind and like a parent.

So she did not cry and was ran out to NICU but only for about 1-2min I believe our son was delivered before she took her first breath

She did have some at about age 9months...
-spoke about 7mos old but well at 1.5yrs but once spoke well she would stutter a lot and still does when tired
-forgetfulness
-9mos walking once well at 12mos-2.5yrs she would drag one leg forget which
-she would go limp in your arms almost daily, eyes go diff directions outward or inward and urinate/deficate on herself even after she was potty trained. We have not seen one of these episodes in months.

It seems even too many animal crackers causes her to stutter, drag leg and be forgetful and pupil issues worsen.

She recently had started writing the whole alphabet backwards though when redirected she quickly understood and has been doing things the right way.

He has began making letter L for his name up side down and seems to write letters upside down. I know they are 4 but we try do reading, outside activities and writing a lot. He does great jumping and moving about though he is low tone and we encourage that for his strength.

In his sleep he talks and talks very clear like his sister.

Now you will think I am crazy and we know this sounds unheard of but it was heard by my husband, my friend, my parents and me...
Age 4 months while I was changing him he muttered in a child like manner to me, "I love you mommy. So there are times where he appears very advanced and others where he is not.

Literally on their 4th bday they both stopped urinating in the bed, their sleep study was still a bit rough still some central apnea but almost exact match though they slept in different rooms.

She always wants to sleep a lot but refuses to lay down often, seems ADHD.

speaks well and clearly and is most medical would say slightly above average hitting mile stones though at the lower half not very bottom but still low for their age for height (40") and weight (39pnds). Our son is 41" tall same weight.

Our sweet boy who loves to tease, loves to say prayers and is always very thankful for even God and mindful of others needs but before he could talk he would hurt his twin a lot bite her and mark her up but now that he can speak much better he seems to show some things are a little off but he does have more manifesting delays as time goes on. His speech has come a long greatly but he is still very shakey, low tone, like him playing tug of war with dog if our 20pnd dog pulls too hard his head is jerked easily like no neck strength which is a concern.

Pediatric chiropractor mentioned his neck was extremely tight but better then it was now that he is off the Vayarin. He did a lot of teeth grinding, hand sucking on it but since has stopped.

Age 1.5, they both had a developmental behavioral peds though it was mostly for him and there didn't seem to be any concern at that time though the neurologist noticed hypertonia.
Age 2 he was evaluated by a p/t, o/t and speech therapists who all said he was about 6 months behind.

Age 4, Last week he had a develop behav ped said he is about age 3.5-4 though he is 4yr 4mo at appt.

He seems to still think in an immature fashion or forgets how to spell his 4 letter name though there are times if I convert something he is trying to learn to something he loves like XXXXXXX Mouse he learns it pretty quickly.

He is very hyper like his twin but he is a bit more active.

He has a lump that has been ignored on his mid back not sure what that can be and an orthopedic who put him in hip brace said she wasn't concerned as it was xray-ed by her office.


??????

Do you think there is still a conern for spinal bump and what imaging should I mention to PCM about doing? PCM seems not at all concerned about any of what our twins are going through but the developmental ped is very concerned.

My husband was advised that he should not take blood thinners like fish oil of any kind and that was also a concern for us with twins, is taking fish oil ok as we see the benefits of Vayarin though it is causing tics when they are on it and they go away when they are off it? I wonder if these tics indicate a more serious concern or issue for down the road we just don't know because it is a new drug as other parents have complained of the same thing and a johns XXXXXXX adult cardiologist said it is not a good medicine.

We would love to be able to freely give fish oil as we did previously as sleep neurologist has told us but he has told us he is not trained in neuro vascular issues and if daddy can't then maybe they dont but we see the calming effects of the fish oil. so for now we only feed him fish as she refuses it. thanks again. No rush we will wait for your answer.

Yes we are going to do PT again though we were told he was done so we find a new place.

Yes we agree fish oil isnt the issue but the Vayarin has something else in it that causes these issues.

On a seperate issue Do you know if fish oil is ok with DVMs?

Do you think Zofran was a concern for these issues or CT scan/xray I had? As other fertility drugs was assured to me not to be a concern but no answer about the Zofran then I will just keep them away from Zofran, future CTs/X-rays.

When our girl hit her head she still at times is delayed in responding though shes gotten better since the fall. One neuro yrs ago told us when our son fell that sometimes things dont manifest right away but can be months later even if all appears well or just ok right now. What is your thought on this? So for her it was just Easter. Our sons fall didnt show anything concerning in his 1st MRI and we informed docs of every single thing to assure kids health. We just worry about head.

My husband has to be followed about every 2-3 yrs with a vascular neuro surg and it was mentioned by this specialist that we should have our daughter followed by the same along with a neuro that specializes in vascular issues. Not for operation as for dad n daughter its not an accessable placd. Do you agree with having a neuro surg just to follwo along as one sees inside where one does not?