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Question about care at diagnosis....

Discussion in 'Parents of Children with Type 1' started by isaiah268m, Aug 13, 2006.

  1. isaiah268m

    isaiah268m Approved members

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    Yesterday I had multiple correspondence with a mom whose child was diagnosed Friday (I think) with T1. Their diabetic training and in fact the care the child received at diagnosis is so different from the training and care we had when Laura was diagnosed that I am appalled. I alternate between wondering if I'm over reacting and wondering if the doctor from whom they received "care" (a ped. endo!) should be reported.

    Anyway, I wondered if you would be willing to share your diagnosis story by answering the following questions. Our experience was so very different from this mom's that I'm wondering what the norm is, what protocal there is, and what constitutes inadequate care and training.

    Was your child diagnosed in the hospital or doctors office?

    What was their bg level and A1C at diagnosis? (I ask that to get some kind of idea of at what level kids are hospitalized)

    Was your child's urine checked for ketones?

    Was your child observed for a period of time to see how they responded to insulin? How soon were they allowed food and what kind of food were they given?

    What was your diabetic training like? Were you trained by a DE or your doctor or ? Were you trained how to treat highs and lows?

    How often were you to check your child's blood sugar? Were you instructed to check it in the middle of the night?

    Were you trained how to give injections? What training were you given regarding how to give injections? Were you trained at diagnosis when to, and how to prepare and administer a glucogon injection? Were you sent home with a glucogon kit?

    What kind of attention (if any) was given to you and your child regarding emotional well being at and following diagnosis?

    What equipment and insulin were you sent home with? And/or what perscriptions were you sent home with - that you had to fill? Were you trained at how to care for your insulin (room temp, refrigerator, etc).

    Was your diabetic team available to you by phone after you went home?

    What was the protocol for reporting your child's log information (bg levels, insulin dosages/carb count) during that first week? Did the doctor/diabetic team adjust your childs insulin levels during that first couple of weeks?

    How soon did your child see their ped endo after diagnosis, or after they were released from the hospital?

    I guess that's all. Thanks for your help.
     
  2. isaiah268m

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    And I'll reply first...

    Thanks again for any insight you can give!
     
  3. kittycatgirl

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    Hello,
    Hope this helps...
    1-Urine test done at "urgent care hours" at the doctors...then went to childrens.
    2-BG 472 a1c above 12
    3-Ketones-yes at doctors office
    4-Hospital friday night. IV fluids and more test. In the hospital until late Sunday. She was observed and we were trainned. Food was given Sat. morning for breakfast.
    5-trainning all day Sat. and Sun. by DE. Very extensive could not leave the hospital until we could prove we could draw insulin and had a good grasp on care
    6-We were told to check BS before every meal and at bedtime. Middle of the night only for the first week
    7-Yes to all. Nurse's had to see that we could draw insulin and give it. Both my husband and I. He was watching my youngest daughter but had to come in all day Sunday for trainning. (Children's hospital Boston)
    8-Her emotional state was checked very often. She was focused on a play the next weekend. She is seen at the Joslin clinic now... She isn't interested in "talking to anyone" but she will talk to the doctor and the nurse as needed.
    9-We were sent home with all the supplies we needed. Perscriptions were filled at the hospital for us. Covered 1 month. Also given perscriptions to take to pharmacy as needed.
    10-Yes, quick response by phone
    11- Spoke with the hospital every day until we went to the Joslin two weeks after diagnosis.
    12-2 weeks (joslin)
    I have been told how lucky we are to live near Boston. At the time we were in shock..... but looking back we couldn't have asked for better care. From Childrens Hospital or The Joslin Clinic. Good luck to your friend. She is in shock at this point. Help her fight for her rights! Tell her about this board. It has helped me a lot.
    Diana
     
  4. isaiah268m

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    Diana,

    Thank you so much. I'm especially grateful because your child's numbers are very similar to what the other mom's child's were. She was not hospitalized, but sent home after one hour of training. :(
     
  5. melissabeth

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    Wow! I can't imagine going home that quickly! Colby was in the hospital for 10 days since they couldn't stabilize his sugar. He was only 10 months old, and didn't have keytones, but they only gave him Humalog every 6 hours when he had to eat, and he was way up and down every day (like from 500+ to 20 one time). We had classes at the diabetic center downstairs from the hospital - I think it was about an hour a day for 5 days- and they said they wouldn't let us go home until we were doing all of his blood tests and shots for at least a few days. Maybe it was a special situation since he was so little. We live in Barcelona, but our endo had actually moved from Children's hospital in Boston back here (he's originally from Spain)right before we were admitted. He said that in Boston they have people in and out much more quickly than here in Spain - mainly because budgeting is more of a concern in the U.S. so they want to minimize everyone's stay at the hospital. I couldn't imagine leaving any earlier than we did. As it was I was ready to move into the hospital permanently since i was so afraid to do anything myself! Anyhow, after we left we came back a few days later and every week or so for at least a month. We were on the phone to the doctor at least once a day for a few weeks, but again, Colby was so little and it took months for his bs to really start to level off. Even so, until he got the pump he was all over the place.
    One hour? That's insane - I can't begin to imagine that poor family!
     
  6. EmmasMom

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    I think our training was less than they normally do, because we had a lot of knowledge already.
    On a side note... when my husband was dx'd, (5 years ago), in the ER with 550 BG we were sent home after 2 hours on an insulin drip with NO Training of any kind and an apt to see an endo in 3 months. They gave him pills to take and said good luck! His BG was back over 400 in a few hours, (duh!) and we kept insisting that he needed to be seen by an endo. After a few days of calling over and over the endos office had us come by and pick up a vial of 70/30 insulin and some syringes. They then sent us home w NO training on insulin at all. It was insane and I should've sued the stupid doctor. The first month after my husbands dx's were just as bad, if not worse than Emma's.:mad:
     
    Last edited: Aug 13, 2006
  7. zookpr

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    Lydia's Diagnosis

    Was your child diagnosed in the hospital or doctors office? Doctor's office, sent straight to hospital

    What was their bg level and A1C at diagnosis? (I ask that to get some kind of idea of at what level kids are hospitalized) Her blood glucose was 498 (fasting). They never said what her A1C was.

    Was your child's urine checked for ketones? yes, it was large

    Was your child observed for a period of time to see how they responded to insulin? How soon were they allowed food and what kind of food were they given? Yes; I don't think she was allowed to have food until the following day. She was really sick though.

    What was your diabetic training like? Were you trained by a DE or your doctor or ? Were you trained how to treat highs and lows? We had a CDE come in for 3 hours, 3 seperate times. We were trained on everything, using the "Pink Panther Book."

    How often were you to check your child's blood sugar? Were you instructed to check it in the middle of the night? At first we check about 8 times a day, and yes we check during the night.

    Were you trained how to give injections? What training were you given regarding how to give injections? Were you trained at diagnosis when to, and how to prepare and administer a glucogon injection? Were you sent home with a glucogon kit? Yes. They trained us right away and they had Lydia giving her own shots on the third day of diagnosis. They trained us with the glucagon kit too.

    What kind of attention (if any) was given to you and your child regarding emotional well being at and following diagnosis? They sent someone special in to talk with Lydia about how she was feeling emotionally.

    What equipment and insulin were you sent home with? And/or what perscriptions were you sent home with - that you had to fill? Were you trained at how to care for your insulin (room temp, refrigerator, etc). We were sent home with everything we needed to take care of Lydia as well as prescriptions for everything we would need. Yes.

    Was your diabetic team available to you by phone after you went home? Yes. They have a RN on call 24 hours a day.

    What was the protocol for reporting your child's log information (bg levels, insulin dosages/carb count) during that first week? Did the doctor/diabetic team adjust your childs insulin levels during that first couple of weeks? We called in every day, at first. Then we faxed in every 3 days, then every week. Now we fax every other week or more often if we feel the need.

    How soon did your child see their ped endo after diagnosis, or after they were released from the hospital? We saw the ped endo in the hospital every day! Then we had an appointment about 1 week after she was released.
     
  8. jeep_bluetj

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    Or son was never hospitalized - and I'm glad for that. I don't know if that was SOP, or that since I had prior experience with T1 that it was ok. But it was MUCH less scary for my son than I think it would have been being in a hospital. Now, after knowing how bad t1 care can be in a hospital, I'm even more glad we just went home.

    The 2-day outpatient thing was good too: it gave us time to freak out a bit and calm down before we were deluged with the massive amount of information.
     
  9. Beach bum

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    Was your child diagnosed in the hospital or doctors office?
    Peds office, then sent immediately to hospital
    What was their bg level and A1C at diagnosis? (I ask that to get some kind of idea of at what level kids are hospitalized)BG was 710, I can't remember what A1c was
    Was your child's urine checked for ketones? Yes, and it was the highest color on the stick

    Was your child observed for a period of time to see how they responded to insulin? How soon were they allowed food and what kind of food were they given? Yes, approx 12-16hrs, then free foods, then at 24hrs anything she wanted

    What was your diabetic training like? Were you trained by a DE or your doctor or ? Were you trained how to treat highs and lows?
    Initially, we were trained by a nurse who specialized in diabetes. Once they got her stabilized, and we were able to get some sleep, 2 diabetic eds, nutrionist and a ped from our pratice all spent a large chunk of time w/us. We learned everything, from highs, lows, ketones, carbs. We had to do everything, check sugar, ketones, give injections. After the first 24hrs, the nurse made us do everything. They were awesome.

    How often were you to check your child's blood sugar?Breakfast, snack, lunch, snack, bedtime, snack. Were you instructed to check it in the middle of the night? 1a and 3a

    Were you trained how to give injections?Yes, we were not allowed to leave the hospital until the nurse felt we were comfortable doing it. I had to give her her 2nd dose in the hospital. What training were you given regarding how to give injections? Very specific, told how to hold skin, what sites to use, what happens if we hit a blood vessel or muscle etc. Were you trained at diagnosis when to, and how to prepare and administer a glucogon injection?Yes Were you sent home with a glucogon kit?Yes

    What kind of attention (if any) was given to you and your child regarding emotional well being at and following diagnosis? D-team observed her, and basically told us who to go to if we needed help.
    What equipment and insulin were you sent home with? Meter,strips, glucagon,needles, pen. And/or what perscriptions were you sent home with - that you had to fill? Not sent home with any meds from hospital, they made us fill them all prior to release. We got scrips for strips, glucagon, novolog, novopen, penmate, Lantus, syringes, ketone strips, lancets...basically the whole shebang!Were you trained at how to care for your insulin (room temp, refrigerator, etc). Yes
    Was your diabetic team available to you by phone after you went home? 24X7, they called 2x's a day and I was constantly calling or emailing questions:eek:
    What was the protocol for reporting your child's log information (bg levels, insulin dosages/carb count) during that first week? Called in in the am with the prev. nights numbers, and then at dinner for numbers through out the day. Did the doctor/diabetic team adjust your childs insulin levels during that first couple of weeks? Almost daily adjustments were made, if not to insulin, then to carb ratios.
    How soon did your child see their ped endo after diagnosis, or after they were released from the hospital? We saw our ped. 2 days after release from hospital. Unfortunately, the first endo could not see us until Oct, and we were diagnosed June 18. So with the help of our educator, she got us into Joslin, and once we were on the books, we had an Aug. appointment, but we were talking with the d-nurse and doc 2x's daily. It did bug us a bit that we had to wait for her to see the doc, but ped. endos are in such high demand, we found that wherever we tried to get in, the wait was just as bad, and we really wanted Joslin. The support we got from them until we got to see them was so good we were ok with waiting.
     
  10. Amy C.

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    xxxxxxxxxx
     
  11. momof2

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    I hope that helps with your query, I cannot fault the treatment and the information given to us at such a harrowing and overwhelming time of diagnosis.

    Jackie
     
  12. nantomsuethom

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    Was your child diagnosed in the hospital or doctors office? Office
    What was their bg level and A1C at diagnosis? (I ask that to get some kind of idea of at what level kids are hospitalized) bg- 465, A1c- 13.7
    Was your child's urine checked for ketones? large
    Was your child observed for a period of time to see how they responded to insulin? How soon were they allowed food and what kind of food were they given? no, went home from the dr. office gave a shot of humalog (12u I think), ate dinner, went to the endo in the morning (dr. made the appt.)
    What was your diabetic training like? Were you trained by a DE or your doctor or ? Were you trained how to treat highs and lows? trained by the endo, her nurse and the CDE, we were taught to recognize the symptoms of lows and taught how to treat them
    How often were you to check your child's blood sugar? Were you instructed to check it in the middle of the night? 4 times a day-am lunch, dinner and bedtime, they did not say to check during the night
    Were you trained how to give injections? What training were you given regarding how to give injections? Were you trained at diagnosis when to, and how to prepare and administer a glucogon injection? noWere you sent home with a glucogon kit?no I am a nurse so I did not get instructions for the injections, they did instruct me on how to mix the insulin and then watched as I drew it up and gave him a shot
    What kind of attention (if any) was given to you and your child regarding emotional well being at and following diagnosis? none, except another child's phone # if he wanted to talk to someone that was his own age
    What equipment and insulin were you sent home with? And/or what perscriptions were you sent home with - that you had to fill? Were you trained at how to care for your insulin (room temp, refrigerator, etc). We were sent home with a meter, strips, a vial of humalog, a vial of humalin, carb counting books, our prescription was for glucagon, insulin, strips, ketone strips and needles; our pharmacist instructed us on how to care for the insulin
    Was your diabetic team available to you by phone after you went home? Always, and still is
    What was the protocol for reporting your child's log information (bg levels, insulin dosages/carb count) during that first week? Did the doctor/diabetic team adjust your childs insulin levels during that first couple of weeks? I called if he was low, but other than that we had an appt. the following week and she looked at the #s then, he was given a sliding scale for "extra snacks after 2 week visit
    How soon did your child see their ped endo after diagnosis, or after they were released from the hospital? was diagnosed at 4:00pm, saw the endo at 8:00 the next morning
     
    Last edited: Aug 13, 2006
  13. Animan

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    Was your child diagnosed in the hospital or doctors office?

    Hospital. 4 days.

    What was their bg level and A1C at diagnosis? (I ask that to get some kind of idea of at what level kids are hospitalized)

    BG 870 HBA1C not done.

    Was your child's urine checked for ketones?

    Yes, large, huge, immense. DKA bigtime.

    Was your child observed for a period of time to see how they responded to insulin? How soon were they allowed food and what kind of food were they given?

    4 days in hosp, food next day. Crackers.

    What was your diabetic training like? Were you trained by a DE or your doctor or ? Were you trained how to treat highs and lows?

    It was Ok, DE was pretty good but I was pretty dumb.

    How often were you to check your child's blood sugar? Were you instructed to check it in the middle of the night?

    Before meals and at bedtime. Later learned I needed a 3am check. Havn't mised one since 2002 (yawn).

    Were you trained how to give injections? What training were you given regarding how to give injections? Were you trained at diagnosis when to, and how to prepare and administer a glucogon injection? Were you sent home with a glucogon kit?

    Yes, yes. Oranges.

    What kind of attention (if any) was given to you and your child regarding emotional well being at and following diagnosis?

    Some, minimal, but not ignored.

    What equipment and insulin were you sent home with? And/or what perscriptions were you sent home with - that you had to fill? Were you trained at how to care for your insulin (room temp, refrigerator, etc).

    Minimal training on insulin. Had to look it up.

    Was your diabetic team available to you by phone after you went home?

    No, not too good here, no real team at all.

    What was the protocol for reporting your child's log information (bg levels, insulin dosages/carb count) during that first week? Did the doctor/diabetic team adjust your childs insulin levels during that first couple of weeks?

    Fax them in weekly, they altered insulin VERY frequently. I now know TOO frenquently.

    How soon did your child see their ped endo after diagnosis, or after they were released from the hospital?

    One week.
     
  14. Pammers

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    Was your child diagnosed in the hospital or doctors office? Drs. office then straight to children's hospital

    What was their bg level and A1C at diagnosis? 466 at dr. over 600 at hospital dont know a1c

    Was your child's urine checked for ketones? no but im sure the blood was

    Was your child observed for a period of time to see how they responded to insulin? How soon were they allowed food and what kind of food were they given? Day and a half in ped ICU, day and a half in regular unit. He was allowed to drink once he was ready - about 6 hours - and I think eating the next morning.

    What was your diabetic training like? Were you trained by a DE or your doctor or ? Were you trained how to treat highs and lows? Trained by the nurses at the hospital, a hospital educator, and the endo's diebetes educator. Only told to treat lows with juice/glucose. Had to ASK for glucagon at a later appointment. Highs were not treated - "let him run around a little - as long as he doesn't have ketones". I later asked for Humalog to handle brakfast spikes but wasn't given a sliding scale per se. NEVER told to correct highs until got on pump.

    How often were you to check your child's blood sugar? Were you instructed to check it in the middle of the night? before meals and bedtime - not told to check in the night until we went to the pump

    Were you trained how to give injections? What training were you given regarding how to give injections? Were you trained at diagnosis when to, and how to prepare and administer a glucogon injection? Were you sent home with a glucogon kit? good training on how and where to give injections, had to ask for glucagon and never was given training

    What kind of attention (if any) was given to you and your child regarding emotional well being at and following diagnosis?
    I was given the numbers to support agencies-ADA, JDRF, etc.- and a support group about an hour from my home ( i now belong to one that meets about 20 mins. away - and I really had to HUNT for it)

    What equipment and insulin were you sent home with? And/or what perscriptions were you sent home with - that you had to fill? Were you trained at how to care for your insulin (room temp, refrigerator, etc). Meter, some strips, some syringes, a vial of Humulin NPH, plenty of literature and a carb counting guide, script for insulin, strips, lancets, syringes, and urine strips. Told how to care for insulin.

    Was your diabetic team available to you by phone after you went home? someone is available 24/7 (although i don't care for the endo's partner and hate when she's covering)

    What was the protocol for reporting your child's log information (bg levels, insulin dosages/carb count) during that first week? Did the doctor/diabetic team adjust your childs insulin levels during that first couple of weeks? Keep the book, call if highs or lows persist - there was a criteria for how many highs, but i can''t recall anymore. We adjusted the dosage over the phone occasionally and at every visit.

    How soon did your child see their ped endo after diagnosis, or after they were released from the hospital? two days after release, one week, one month, then every three months since - its the same deal now that we started the pump - a week, a month, three months

    I never realized how much I WASN"T told. I've always had to ASK for things - Humalog, syringes with 1/2 unit markers, glucagon, the pump (I asked about it 2 times and by the third time I just said - I want it), the blood ketone meter..... If it wasn't for this site, I know I wouldn't be as far along as I am. I get all my really good info here. Thanks everybody.
     
    Last edited: Aug 13, 2006
  15. fortristan

    fortristan Approved members

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    reply to care during and after diagnosis

    -Drs office
    -meter couldn't register it at dr.s 863bg at hospitol don't know what A1C is.
    -yes at hospitol (I was asked if I wanted to do out patient care or in the hospitol) keytones were high he was given sodium cloride it was explained why but it's now a blur.
    -yes, and was allowed to eat a couple hours later what ever he wanted except the the candy and junk. He was given 3 cans of pei-sure for a snack along with sandwich and fruit. bs back to 800s. This was after a dinner he was given 3-4 hours after check-in. After snack I got in trouble but I was doing what I told "only feed him what comes on his tray,it was a db diet" When the nurse checked him in she asked him what his favorite foods were pedi-sures were one (he was on them prior to diagnosis because of weight loss)
    -trained by DE, D dietion,Dr, nurses. 1st day was just getting him on insulin, 2nd day a barage of people, phones calls from ped endo pa in Anchorage. Showed how to give shots, draw insulin, read monitor, carb exchange, sliding scale, treat highs lows, given phone #s. Was given the small pink panther book.
    -check bs at meal times and bed time and middle of night by family dr.
    -good training on shots and where had to ask for glucagon (read about it while in hos in pink panther book) not trained on it.
    -non, I so very much wish they had
    -sent home with a monitor. Had perscriptions for everything els, told to keep insulin in fridge,BIG carb counting guide, pink panther book, lots of phon#s except for our drs on call phys.(1st night home wish we had that one)
    -no
    -fax them in weekly, wil find out if adjusting my first call is tommorow
    -2 days after release, and evry 3 months now.

    -
     
  16. Jenn33199

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    Replying for both my kids...

    Was your child diagnosed in the hospital or doctors office?

    Doctors office- and then sent to the hospital for Annie.

    For Nicholas- Doctor's office- and then sent home. We pretty much knew before we took him in as we had tested him ourselves.

    What was their bg level and A1C at diagnosis? (I ask that to get some kind of idea of at what level kids are hospitalized)

    For Annie- I believe it was 500 something.
    For Nicholas- 350ish?


    Was your child's urine checked for ketones?

    Yes for both.

    Was your child observed for a period of time to see how they responded to insulin? How soon were they allowed food and what kind of food were they given?

    Yes for Annie, but I don't remember what she was given. We had her on an IV for awhile.
    Nicholas was at the doctor's office for all of an hour and 1/2 before being sent home. No restrictions.

    What was your diabetic training like? Were you trained by a DE or your doctor or ? Were you trained how to treat highs and lows?

    We had INTENSIVE training with Annie- 3 days worth in the hospital with a dedicated diabetic trainer. We were trained on highs, lows, sick days etc.
    None with Nicholas- but that's b/c we were unfortunately already proficient with diabetes care.

    How often were you to check your child's blood sugar? Were you instructed to check it in the middle of the night?

    We were to check a minimum of 4 times a day- and for awhile with Nicholas a night. (Annie was checked overnight in the hospital and by the time we left was stable enough they didn't feel it necessary.) We checked for them both overnight for quite some time regardless. We ALWAYS check throughout the night when we have any change in insulin regime.

    Were you trained how to give injections? What training were you given regarding how to give injections? Were you trained at diagnosis when to, and how to prepare and administer a glucogon injection? Were you sent home with a glucogon kit?

    Yes we were. First we gave them to fruit. Then we gave them to each other. We were trained to prepare and administer a glucagon injection and were sent home with one. (This is for Annie- not for Nicholas.)


    What kind of attention (if any) was given to you and your child regarding emotional well being at and following diagnosis?

    Quite a LOT~! They have on staff child coordinators who come in and talk to the children, bring little toys etc. Annie and Nicholas were both only 3 at diagnosis though- so needs for intensive "therapy" etc were minimal. We also were assigned a social worker to discuss OUR emotional well being.

    What equipment and insulin were you sent home with? And/or what perscriptions were you sent home with - that you had to fill? Were you trained at how to care for your insulin (room temp, refrigerator, etc).

    Were sent home with test kits, syringes, etc, and prescriptions for insulin, and all other things we would need. We were told how to care for the insulin.

    Was your diabetic team available to you by phone after you went home?

    Yes with both. With Annie, someone from the endo's office actually called every single day for a week to see how we were doing.

    What was the protocol for reporting your child's log information (bg levels, insulin dosages/carb count) during that first week? Did the doctor/diabetic team adjust your childs insulin levels during that first couple of weeks?

    Honestly, I don't remember. We talked to a nurse every day, so I think we just discussed levels etc then.

    How soon did your child see their ped endo after diagnosis, or after they were released from the hospital? I think 2 weeks.


    My 2 had EXCELLENT Care. I was really really happy with the level of attention etc. that they received. I do have to say that my friend's son, who was 9 at diagnosis, was pretty much sent home straight from the doctor's office within a couple of hours of diagnosis with no real training for the parents. Luckily my friend called ME- and her FIL was type 1 as well so she had additional support. She lives in SC- I lived in MN when my kids were diagnosed.
     

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