I need to scream, cry and try to find someone willing to help

This is long but I’m trying to give background so that this all makes sense.

So, my little man is 2 and a type one. He’s on .5u Novalog for every 20 carbs. 3 units of Lantus in the mornings at our house and 4u of morning Lantus at her house. Compensation is .5 for every 75 starting at 275 at our house and starting at 200 at her house. His target range is 100-200. At diagnosis (9 months old) his HBA1C was 9.7. Since then he has been at 8.5, 9.4 and 8.9 in December which is the last one we have for him.

We’re going through a custody battle for him (his father and I vs. his mother). His BG is ALLLL over the place. Here’s an example of the difference between the houses…

The other week:

Had the night with her he’s at…
2am 344
730 281
(3 units Nov during this time)

We get him…
11 am 79
3:00 78
5:30 75
8:10 317
midnight 179
3:00 130
7:00 192
11:30 272 (had given him a large snack because we went to the park)
:3:30 152
( 2.5 units Nov during this time)
He goes back to her at 5pm.

Her weekend…(starting at midnight to show her full days)
midnight 150
7:00 406
12:30 207
6:00 203
8:00 466
2am 447
8:00 457
1:30 269
7:00 374
10:30 297
(14.5 units Nov during this time)

Between April 1-28th:

With Her…
BG #of times
<100 3
100’s 21
200’s 37
300’s 30
400’s 14
Hi 3

With Us…
<100 17
100’s 29
200’s 15
300’s 6
400’s 0
Hi 0

No keytone tests done; she doesnt even have valid strips for her meter. (our endo said unless he’s sick dont worry about keytones :-/ But even when he has been over 500 numerous times in a day while sick she hasnt tested for them )

And this isnt just picking out a bad day; this is the norm. Low numbers with us, high numbers with her. The endo just says well he must be more active at your house.

He is suppose to have a max of 30 carbs per meal. She feeds him upwards of 80 per meal and then still feeds him more milk 30 min or an hour or so after the meal twice a day.

He is only suppose to have 16oz of milk a day; she usually gives him around 32.

She will test him. He will be in the 400’s. She will still give him a snack or some milk. Or will just feed him snacks without testing. Feed him lunch without testing.

The endo has to tell her to cut out the Burger King, McDonalds, Dairy Queen, cheezits etc. Over and over.

Examples of dinner with her: Green bean casserole, fruit cocktail, and a brownie.
Another day- checks BG for dinner- Pork chop, mandarin oranges, 8 oz milk; an hour later 20 grapes, an hour after that 20 more grapes and 3 cheese sticks an hour after that 8 more ounces of milk two and a half hours after that checks his BG again for the first time since dinner.

I don’t know maybe I’m just over analyzing and thinking we’d be better because we’re in a custody battle but my husband and I have major concerns and worries about how he’s being taken care of with her. We try to express our worries to our endo. She just says a carb is a carb just compensate for the BG, and no one can have target range numbers all the time. I understand that fact, but theres a difference between a few highs and being high constantly.

Our doctors will not get involved in the court case. They wont tell us if him running high is dangerous for him. They wont talk to our lawyer. They wont talk to the guardian ad litem. Our lawyer has said our only choice is to find and hire a specialist to come in and analyze his food records (at roughly 300/hr) and say that these highs are endangering his health. There are no doctors in our area that will do this.

Does anyone have a doctor that will stand up for him? Know someone willing to do a telephone court appearance? Does anyone know any support groups, people to contact anything that we could give to the lawyers to help them understand. We’ve tried to show them websites and books etc. but they basically keep saying until a doctor says that 300+ 400+ etc isnt healthy they have to assume she’s taking care of him properly.

We dont want to take him away from his mother completely but we are worried about his future if she continues to have him consistantly.

He’s two. Is this normal for a growing child so young? Am I upset and worried for nothing? Would we be wasting our time to hire someone to look at his records?

Anything you all could tell me would help. I just needed to get these thoughts out of my head.

That’s a really tough situation. What does the mom have that entitles her to any say in the matter? $300/hour doesn’t seem too pricey but that would depend what other elements there are in the case. There’s also no guarantee that the specialist will say what you want him to or that grandma can’t find another doctor to rebut him.

I’m the stepmother. His biological mother and my husband are in the custody battle. We would obviously want to talk to the person before bringing them into court. Our guardian ad litem says he understands that numbers in the 100’s are better than 300-400 but his hands are tied on being able to grant us primary custody. Basically he has to talk to a doctor so he can write in his legal report that a doctor was the one explaining whats a healthy type one individual. It’s a huge headache mess and the saddest part is is the child is suffering from the mother doing things to screw up our days like “forgetting” to give him his Lantus or not feeding him or feeding him and not compensating or feeding him only a few carbs and giving him large doses of Novalog. But we cant explain the dangers of any of that to the lawyers they have to have a doctor say hey thats way too much Novalog because apparently our words dont matter.

Ah, ok, I totally misread the “his mother” as the grandma, not the mom. Is the mom actually evil or just a total dumbass?

Get a different doctor, Pediatrician Endo? Keep all documentation like you have been. I, as a Mother and Grandmother…OOOO, I would be furious with this neglect. I wish you well…I would fight, but that is me.

My only advice is to point you to the American Diabetes Association. Maybe they know of a specialist that will stand up for him. But chances are no dr. will stick his neck out until the child has been admitted to the hospital with DKA. Here is a teaching endocrinologist at Ohio University. I do not know if his office will help or not, but worth a try. Dr. Frank Schwartz. You can look up his number by doing a search with his name and Athens, OH. I hope this helps some.

I do not know if you could have the guardian ad litem or the endocrinologist tell her of the dangers, or if this has even been done. I will pray for the boy though and wish you the best of luck.

Honestly I think its a mixture of both. I think she’s terrified of him going low. She also keeps expressing that shes the mother and knows whats best despite what the doctors are saying. She freaks out on us saying we take his BG too much, was livid that we took it in public and really is only concerned about what works best for her and her schedule/wants more than what works best for him.

Like I said she has that I’m the mother I know everything and I know whats best mentality. sigh Thanks for the name though :smiley:

It also may be that the doc, while he tells you “you are doing well” may sell himself to the mom for $300, if you aren’t gonna pony it up, and tell the GAL/ judge/ whomever that what the mom is doing is ok. While it may not be ideal, a lot of kids’ parents report that they aren’t totally pushing kids, particularly 2 year olds, to be tightly controlled so then, for $300 the mom has a witness and you are SOL. The doc will get paid either way. If it gets into a bidding war for his services, he doesn’t lose then, when the deal is done, he cleans up the mess. The kid will probably be old enough to speak for himself by then?

Well our doctor has already said she wont get involved period, his mom has supeonaed (spelling?) her anyway which just made it so that the endo wont return anyones phone calls now. I honestly think the mother doesnt realize that we are pushing for primary custody. Before she got the last case delayed she hadnt called any witnesses for her side, so when she got our list of people she freaked and got the case delayed.

We document everything but unfortunately until someone has primary custody BOTH parents have to agree on ANY types of changes… :frowning:

I’d be a bit concerned about that? If your side and the mom’s side can’t agree on what’s best or some kind of amicable solution, I would presume that the court would have some tendency to get the doc to testify, regardless of who’s paying her. The court would need the facts and if you or the mom raise the issue that either you are too mean or she is not mean enough (and really, I don’t think you are being mean as I agree with your approach. I’m not a doctor though! Or a lawyer!), then they’d have to get an expert involved.

Is there something else at stake here, $$$ or assets or something that the mom is using the kid as a lever to get? I can’t exclude the possibility that, however ill-informed she seems in your account of the situation, courts often decide these cases in favor of the mom? Maybe you’d get lucky and get a judge w/ diabetes (cf. Sonia Sotomayor!) but the mom could probably object to that too. I’d ask you what your lawyer is telling you to do but you probably should post any plans in a public forum anyway. The walls have ears! Good luck with your case!! I hope junior gets his BG in line!!

Yeah, thats why my profiles doesnt have pics or a name etc. The mother has nothing on us other than she wants to get 1200 a month in child support (her words), which shows just how dillusional this woman is. She wants us to be daycare for the child and thinks that she can choose the terms of everything. They usually do favor mothers but we have an upper hand having a more stable two parent home plus a few other things. Just crossing our fingers that they stop delaying the case and that we get primary the first time around, otherwise we’ll be filing a neglect/medical abuse case. Lawyers are getting expensive. lol.

Ok this may be hitting the mom hard but have you considered bringing in child protective service, or hunting down a social worker? If you get lucky you may find a SW who is also a CDE, and finding a CDE may be easier then a doctor who is willing to stick their neck out.
CPS may make things worse in the getting along with the mom game. But it can show she is unfit/unwilling to properly care for her (I hate using this term) special needs child.

The bio mom is causing way too much damage to her son physically and possibly emotionally! Lawyers usually have an expert witness - i.e. a dr. on staff - that they use for cases like these. It is outrageously expensive but may be the way to go if your lawyer offers this service. this would force the bio mom to pony up $$ for her own specialist if she wants to rebut. Perhaps if she knew you were willing to go this route, she may back down a little (?) My heart goes out to you, your husband and your step-son. My positive thoughts are with you.

I agree some of what you say does sound concerning, such as feeding him carbs when his BS is 500. But the milk… since when is a child supposed to have only two cups of milk a day? Some of his meals do not sound out of the ordinary at all. This is a child with Type 1, not an adult who can restrict carbohydrate. Children are not advised to restrict carbs; they are growing at an extreme rate. BGs at the age of two ARE all over the place. And there is NOTHING you can do to control it. I agree it does look like he is running too high too long in the day. Dinners Pork chops, oranges, milk, grapes later on… sounds healthy to me! Then green bean casserole, fruit cocktail, brownie. I assume you are objecting to the brownie? Our child does not spike much if you cover a brownie. Not all kids get ketones and you can run out of strips for the ketone meter. The reason the endo won’t testify for you is that he probably thinks the mother is doing an adequate job. And the “carb is a carb is a carb” quote comes directly from the endo. That’s what we were told. We were told she CAN have Mcdonalds, ice cream, cheese-its, and she can. Just not all the time, no carbs if she is high. You are doing a better job than the Mom controlling his BGs, probably because there are two of you, so one can help the other. Try to help the Mom learn what you have so she can better control his numbers. There are still going to be highs, a lot of them at this age. And lows. Your husband is entitled to full joint custody. He is the father. But I don’t believe the courts will give you full custody so you need to work with the mother. Some of your criticisms seem accurate but some are not valid. P.S. The A1c recommendations for a child this age are in the 8s, which I disagree with, but those are the recommendations because of the extreme blood sugar fluctuations and sensitivity to carbs, i.e, really high postprandial spikes.

Per Livestrong.org “Limit your child’s milk intake to about 16-24 ounces a day” http://kidshealth.org/parent/nutrition_center/healthy_eating/toddler_food.html#

The other part of this that I forgot to mention is that he has been classified as morbidly obese since about a year old…he was diagnosed at 9 months. Which is why the doctor is restricting his carbs and saying that he shouldnt be having sweets and treats such as McDonalds.