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General #1 (12/2018)

Segev was born at 11/06/2018 preterm, 35+5 weeks. He needed inhaling for 2 weeks, and assisted oxygen for additional 2 weeks Segev was hospitalized at the NICU for 120 days, and was released when he managed to consume about 60 kcal/kg from the bottle. I found about this website when segev was about 2 month, and I wanted to start treating Segev according to the recommendations you can find here, the NICU team wasn't cooperative about supplementing, so we only stated those when he was released from the NICU. Segev started GH at about 2 month, and we didn't see any immediate impact. His formula was changed to Infatrini, which contains MCT, at about 3 month. we saw a change in alertness (moderate one) within 2 days. Segev was released from NICU at percentile 5 (length and weight). Once we went out of NICU we started supplementing with additional MCT, B12 complex, Omega-3, carnitine fumarate, acetyl carnitine, whey, lactoferrin, probiotics. next paragraphs will contain more detailed information. Segev climbed percentiles slowly. By 6 month he was hospitalized twice due to sickness due to the PWS malfunctioning immune system. One of the most interesting things I learned about during this 1st half year, is the Histamine H3R inverse-agonist for PWS hypothesis. I think it is a must read if you're already here.

12/2018 : 1-6 month

summary of the things I remember from the first half year Segev started physiotherapy at ~1 month, at the NICU. First once a week, than every day, than twice a day (we did it, supported by the team). Started feeding therapy at ~2 month, at the beginning he didn't consume a drop, it took about a month to go to 15 ml/feeding and another month to go to 40 ml/feeding (30min x6 feedings/day) We put music in his NICU crib (mostly romantic era) and played it a few hours a day. feeding is really hard, it takes a lot of time and Segev doesn't eat much. The policy in Israel is not to let a baby go home with NG-tube, and we refused gastrostome.

01/2019 : 7 month

Segev is 7 month, 7.5[Kg] and 68[cm]. This is about 20% percentile for both length and weight. Milestone wise: good eye tracking, occasionally flips from facing down to facing up. head-lag is present but mild Nutrition guideline: we aim for MKD (60/25/15 fat/carb/protein) and will gradually shift the macronutrients. Nutrition wise: 5-times 90cc infatrini formula, fortified with creatine-monohydrate (1g/day), carnitine-fumarate (750 mg/day), acetyl-l-carnitine (250 mg/day), chia-powder (~1 g/feeding, for thickening) we had a phase of adding whey powder, which we stopped once we started adding chia-powder, as it has (enough) protein.

02/2019 : 8 month

Segev is 8.5 month, 7.85[Kg] and 68.7[cm]. This is about 15% percentile Following the h3r hypothesis, and the connection between brain-histamine and water intake, we started kutaj, which is an ayurvedic herb, given to infants for many years. Kutaj contains conessine, a molecule which acts as a h3r-inverse-agonist. The ayurvedic medicine uses kutaj to stop diarrhea, which will be useful as well. I started kutaj at 50 mg/day for a few days, and then added to ~300 mg/day. Segev started eating from the bottle a couple of days after starting the 300 mg/day dose. At the 1st couple of days he was eating well only a couple of hours after kutaj dose, and not eating well much later. After another couple of days he was eating from bottle willingly 5 times x 80-100 cc per feeding. I know turning from bottle-refusing (i.e. waving hands to remove the bottle, pushing the bottle with tongue, choking on formula) to bottle-loving (pulling formula from bottle so you can hear the sucking action) in a couple of days duration also happened to other PWS (search in the 'living well with PWS group') and I also will never know what would happen if I didn't administer Kutaj, but I think that the end result is OK.

Still on 02/2019, We ran out of Lactoferrin, and Segev became congested 3 days later. It can be a coincidence.

04/2019 : 10 month

Segev is 10 month, 8[Kg] and 70[cm], still on the 15% curve. We also had an argue with our endo about supplementing and diet type (he was ~60% fat, and she insisted to shift to carb based diet). We reduced some of the fat (now 45%-50%) and now are looking for local nutritionists to support us. It is complicated to balance the different opinions. 3 weeks ago we stopped carnitine and kutaja supplementation, because their taste is really bad and Segev didn't like them. Segev started congestion a few days later, and was sick (some fever) for 2 weeks. we took him to the ICU to get tested but were released after a few hours.

In addition, I think he eats worse, meaning his bottle feeding take longer, and sometimes he don't want to bottle feed. it can be teething and it can be the kutaja, we don't know yet.

at 10 month Segev can flip back to tummy and other side, he can pivot a little, he knows to look towards the light when we ask him.

05/2019 : 11 month

Segev was 'sick' for about 3 weeks. he had a lot of running nose, had hard breathing and a lot of snoring at night. he didn't have fever, but he was weaker and more tired. I think he didn't learn a lot in those weeks, he didn't progress motor-wise.

We re-started carnitine (carnitine in the morning bottle, goes well with vanilla extract drops) and kutaja (mixed with 5[g] of 85%-dark-chocolate-spread and milk) Segev got better after a couple of days, no more running nose, better sleep (we count how many times he is awake at night, using a camera) and he has more strength. Segev started crawling, slowly at beginning, and after 2 weeks he can crawl a couple of meters before tired. Segev also went from belly to knees a couple of times, and maintain there for a few seconds. His feeding also improved (not-so-difficult to feed him, not easy though).

Segev was evaluated at the Israeli PWS clinic, the PWS neuro said she is surprised about his progress given that he is PWS and given he was NICU for 4 month + hospitalized so much. His measurements were 8.3[kg] and 72[cm] which still puts him around 15% percentile.

06-07/2019 : 12 month

I feel that the past week was good.
eating - improved bottle feeding. it takes ~20 minutes and he finishes most of the volume (we prepare 160cc 4 times/day)
sleeping - I'm not sure, we have a camera above his bed, I think most nights his sleep is fragmented, and he is awake (moving, head up) for 1 minute every 30 minutes. yet there are nights where he doesn't move for 90 minutes.
moving - army crawling improved, pivoting is very good, he can sit for a minute but can't go from lying to sitting. this happened once. he can stand if he's holding to something (chair) or when holding his hands, for a minute or so.
voice - he started babbling a lot a couple of days ago, potentially after introducing ashwagandha
alertness - he is alert most of the day, sleeps twice a day. a few month ago he would go still if not entertained, but now he will keep 'playing' (messing with toys) for a long time when left alone. his base position is on the back with all 4 limbs in the air.
responsiveness - the last week he became much more responsive. it is much easier to make him laugh, by making faces or voices.
supplements/day -
carnitine fumarate 500mg, carnitine acl 250mg, coq10 60mg, b12 cyanocobalamin 1/3 dropper (all for energy metabolism)
omega3 ~1000 dha+epa (brain development)
probiotics - lactobacillus reuteri, bacillus subtilis (natto) (oxytocin)
histamine - kutaja 1/2 tsp (h3 inverse antagonism) bdnf - ashwagandha 1/2 tsp (see elevating bdnf levels as treatment for pws hypothesis page)

07/2019 : 13 month

Segev contines a good momentum, he can pull himself to stand against many things (sofa, table, toys etc.) he can 'walk' a couple of steps when holding his hands. He can also switch positions from lying/sitting/standing. he falls on his face once he's done standing(which is funny), but he practices getting down softly. I think the good momentum started when I introduced the ashwagandha.
On the negative side, I ran out of lactoferrin, and Segev got congested (again) a few days later, might be coincidental. I am out of lactoferrin for a couple of weeks, and I think his babbling are both reduced and has less quality. I think he almost said 'dad' intentionally a couple of weeks ago, and now he doesn't.
I still don't understand well his sleep pattern, and I'm not sure if I measure his sleep effectiveness well. I have in mind that essential oil such as lavender, myrtle, bergamot which I drop to a glass near his bed, do something to improve sleep quality, but I'm not sure.

08/2019 : 14 month

Segev can crawl on his knees on a carpet, he still can't do this on regular floor. He is active most of the day, and shows interest in things. he can stand holding things with single hand.
in the past few days, Segev started showing interest in food, meaning, I think Segev wasn't aware that food is something essential, and ate willingly very little portions. in the past couple of days he shows some interest in food, and as an example, he will hold his bottle and take it to his mouth, where previously he always threw the bottle to the floor.
Segev can clap, wave and drum, he also likes the piano and music making toys that he can rock to.
Sleep is an interesting issue: filming Segev sleep, shows that every 30 min sharp he moves in the bed, will raise his had, rotate for 60 seconds and rest still fr the next 30 minutes. there were a couple of nights where he was still for 90 minutes. I wonder what this means about his sleep quality.
Another interesting issue is with feeding, in most/many days, when Segev eats, he will roll his eyes up to the point you can't see them and they are covered. this will last 5-10 seconds and he returns to normal behavior. It sometimes seems to me that he tries to fight it.

We restarted Lactoferrin and my wife noticed increased babbling.

10/2019 : 16 month

Segevs knees crawling has improved and is now mastered, except he doesn't 'run' crawling. When he's interested in something he will crawl faster.
Segev can pull to stand on any surface (sofa/table/wall) and walk along it. he can switch between items to lean on. still can't stand independently nor walk.
Segev can play circle tower stacking and can stack and break a cube-tower. he knows give/take and can roll back a ball (ping-pong sized).
babbling had improved, he can say dad ('aa-ba' in hebrew) and says' that when he awakes.

I think that sleep had improved either, I address it to the usage of brahmi powder, which is the ayurvedic name for Bacopa, and is supposed to improve sleep quality. I think it took a week until I noticed improvements in his sleep patterns. I monitor his sleep with a video-camera and I see that he moves less frequently, and while before most of the movements included head lifting which I thought as being awake, now some of the movements are rotating and hand/legs movements, which I don't think indicate being awake. I also think that sleep quality had improved because when approach him in the morning I sometimes see him stretch, which I don't recall.
about 2 weeks from starting bacopa Segev started cooing a little (sounds like weee and eweee aahheee) which is new to him.
Segev doesn't eat well solid foods so most of his calories come from bottle feeding. His babbling is low, and I think his development matches 12 month old baby. diet is still MKD 60fat/20prot/20carb. we aim for ~1000 cal but actually he eats about 800-850.

01/2020 : 19 month

Segev now crawl on his knees freely, and he pulls to stand himself. he also cruises around and can switch between objects to lean on.
Segev can stand and walk assisted with one hand. he can go up and down smalls stairs using this minimal assistance.
I think his sleep balanced on a new baseline, which is improved, and watching the nightly movement pattern, shows that he is still most of the night, and wakes up ~3 times/night for a minute or so. He sometimes wakes up early ~0500 but most days he wakes up at ~0600.
Segev knows about 2-3 words: 'this', 'there', 'more?', and can point to things he wants. He can play with toys, mostly he likes repeatedly insert a spoon-shaped object to a cup-shaped object and 'stir', but he sometimes plays with human figures and can insert them into a toy car or into a box.
Segev refuses water most of the time. I don't know why sometimes he drink and sometimes won't

04/2020 : 22 month

Segev is now walking. He was walking along furniture for a long time, and last week ha started walking without assistance. we are so proud of him.
Segev was almost-walking for more than a month now, but he wasn't stable enough to stand in his place, so had to keep moving or fall. The change was gradual, but the final (large) improvement came a couple of days after I started a new brand of b12 (natures bounty, after solgar), so maybe it's related to the freshness of the product, or to the brand, or to none of them
His Verbal skills improve, but slowly. He can say: 'this', 'there', 'more', 'I want'. He knows 'miau' and 'hau' (Israeli dogs bark 'hau' instead of 'woof'). He can signal 'more', 'all done', 'no' and send kisses and high-five.
Segev Loves to dance to music, and knows the moves of some baby-songs like 'head shoulder knees' and a waving 'hand saying hello'. We are now 3 weeks into the Corona virus lockdown, so no kindergarten, and he likes being home with us. Segev still tends to repeatedly inert spoons into cups, which is his go-to play, but he can also draw with a pen, assemble a tower of blocks and break it saying 'boom', dis/connect duplo bricks, and play with trucks.
we continue with the ketogenic diet with ratio of 1.3-1.5. Segev gets 5 meals/day, 2 of them are bottle feeds, which totals to ~1000-1100 cals/day.
we also continue with the carnitine (1g/day), b12 (cyanocobalamin), q10, kutaj (2x day), and ashwagandha(mornings), brahmi(night).
His sleep seems good. sometimes he refuses going to sleep at evening, and will yell for a couple of minutes, but most days we read a book and by the end of it he's asleep. usually he sleeps 2000-0700 without interruptions. Some nights I see frequent wakings and/or sitting still in the bed, usually I think its related to some change in the meal-plan or we didn't give some of the supplements (I usually think its the antioxidants in brahmi )

10/2020 - 28 month

Segev is walking well and for distances, he is mostly alert during the day. He can climb some ladders in the kindergarten, climbing stairs is a challenge and requires using the hands.

Segev likes books and songs and knows some of the songs dances, he also can sign some signs .

His speech improves but it's still a big challenge, Segev can say about 100 words, most of them are single or 2 vauls. He can say a couple of 2 words sentences such as mom/dad come. I think speech is his largest delay.

Segev was evaluated by the neurologist as developed as 20 month old on average

We stopped the kutaj for about a month, to try evaluate if it does any good. We are not sure what changed since then. We think he sweats more and drinks less, I think he is more oppositional, and little more preservations, but we didn't see tantrums, I also think his food awareness increased this month in a significant amount.

Segev went through a sleep study (no kutaj) which showed moderate to major sleep disturbance, his tonsils isn't large but his adonsil is somewhat large, the md suggested 1 month of steroid and than to consider surgery. We are still considering what to do.

Segev a sleep is weird: at night he falls to sleep quickset, but wakes up most nights around 0200 and stays awake for about an hour sitting in bed.

Segev also fall asleep every time we get Iinto the car, even 5 times a day. In days where there is not much activity around the house he may also nap 2 times by noon. Yet when there is activity he can stay awake until noon or afternoon without any tiredness sign, he does tend to play games that require little physical activity so maybe it's harder to tell of he is tired